Cohen’s NICU Journey

It’s been over a year since I have written. That doesn’t seem possible, but I guess having a newborn, and now, a toddler, will do that! Cohen is almost 16 months old, which means it has been 15 months since we left the NICU.

If you’ve read his birth story, you know he was born at 34 weeks and 4 days because he had Intra-Uterine Growth Restriction (IUGR) and was born 2lbs 11 oz. The tiniest little babe! I have wanted to write about our time spent in the NICU, but honestly, just couldn’t bring myself to do it until now. Unless your own child has spent time in the NICU, you don’t know what a traumatic experience it can be. And even though we knew ahead of time that Cohen would be born early and would be in the NICU, I don’t think there was anything we could have done that would have prepared us for the worst month of our lives.

Thinking about Cohen being in the NICU, walking past the NICU at work, and even looking at pictures from that time, makes me nauseated. I think I have a small amount of undiagnosed PTSD.There is probably a lot I will leave out – unintentionally – because it has been so long, or possibly because I blocked it out. Thankfully, the NICU gifted us with a “NICU Diary” our first day. I kept up with it until I started back to work 2 weeks postpartum (yes, I was crazy), and then life was too hectic! But, I will do my best to share all of the details, because that’s what I do best. I think details are important, but more than that, I think the details in this story will show you the faithfulness of God – that even in those deep, deep valleys – He is there, and He alone is our strength. So, join me in recounting the hardest, most trying time I have ever been through. And truly, I think that is saying a lot, considering what I have lived with and through.

Cohen’s Birthday

Our first day in the NICU was a whirlwind. Cohen was born at 6:10AM and was taken straight to the NICU. Jason went with him and was able to hold Cohen’s finger before he was told he couldn’t stay, and was led back to the OR where I was. Once we were out of the OR, I was led back to my room in the family birth center to rest. I’m not sure how long we were in there, but within the hour, my nurse brought me a hospital pump so I could begin pumping breastmilk. I was expecting this, thankfully. Not much later, we were taken to the family care unit where I would be for the entirety of my stay.

Around noon, I could finally feel my legs, so I felt well enough to get into a wheelchair so we could go to the NICU and see Cohen. It had been six hours since I had seen my baby. We stopped at the front desk of the NICU and checked in, then were instructed to sanitize our phones and to wash our hands well. We did all of this every singly time we came to see Cohen. We were led to a “pod” (room where each baby was separated by walls on each side, with a curtain that you could close off to give you privacy), and Jason pointed Cohen out to me – the first baby we came across. I immediately started crying. He was so tiny. He lay in his isolette, eyes closed, with a nasal cannula in his nose to provide oxygen and an oral gastric tube in his mouth. He had parental nutrition line in his belly button and leads keeping track of his heart beat. He might have had a few other things attached, but that’s all I can remember/see in pictures. Our nurse, Gaye, came up to us and explained Touch Times – these were designated times when we were allowed to hold and feed Cohen. At each touch time, we washed our hands, took Cohen’s temperature (had to make sure he was staying warm!), changed his diaper, fed him and held him. Because rest is so important for little babies, we had to make sure we didn’t hold him outside of those times so he could grow and stay well. Unfortunately, we had not shown up at a designated touch time (we didn’t know), so I wasn’t allowed to hold Cohen yet. Our nurse was so sweet and understanding, and she knew how difficult this was, so we were allowed to open the side doors of the isolette and touch Cohen while he slept. We FaceTimed both my parents and Jason’s parents so they could see him as well.

Cohen’s touch times were 8am, 2pm, 8pm and 2 am that first day, but when we came, we would stay for hours. So, I finally got to hold my baby after the 2pm touch time because he was doing SO well (according to the time stamp on the photo, it was close to 5PM when I finally got to hold him – almost 11 hours later!) By that time, he had been taken off of oxygen completely and was breathing on his own. We stayed until my pain meds were wearing off and I needed to eat and pump. While we went back to the room, my parents got to go to the NICU and see Cohen.

Later that evening, while Jason showered, I took Karli with me to the NICU and she got to take his temperature and watched as I changed his tiny little diaper. She got to hold his little finger while the nurse checked his blood sugar and he screamed and cried!

Throughout the night, Jason and I set alarms to get up every 3 hours so I could pump. What a night. Pumping was painful for me as it was causing my uterus to contract. Jason was so sweet to get up with me and help me with all of the supplies and pump parts. He washed every single pump part after every pumping session and helped me label colostrum and the small amounts of breastmilk I would get so we could bring it to the NICU for Cohen.

1 Day Old

The next morning, we showed up to Cohen’s 8am touch time and Jason got to hold Cohen for the first time! We stayed for over an hour, taking turns holding our son. Cohen’s bilirubin levels came back high, so he had to be under the blue spectrum lights (also called phototherapy) for a day. He wore little “goggles” so the lights wouldn’t hurt his eyes, but we kept trying to pull them off. Jason’s mom got to come up to the hospital and see Cohen with Jason present, and Jason’s cousin, Jancee, got to come and see him as well. At Cohen’s 3PM touch time, we gave him his first bottle! I think it was 3 mls. He had to start off with very small amounts of breastmilk so his tummy didn’t get overwhelmed. At this point, we started off with 3mls every 6 hours. He was also still on parental nutrition at this time. We also started working on breastfeeding after his bottles this day, just for practice. Cohen’s mouth was so small, this would prove slightly difficult. We were encouraged to use a nipple shield to help him out, which we used up until I stopped nursing Cohen.

We were present when the doctors rounded on Cohen today as well – I did my best to be there every day for rounds. There were two teams – one team of neonatologists, and one team of nurse practitioners (NP). Cohen was on the NP team so we got to know each NP well and I grew to love each of them. But this day, for some reason the doctors rounded on Cohen. I won’t name names, but he didn’t have the best bedside manner. I asked what it would take to bring Cohen home and how long he expected us to be there (normal questions for a mama in the NICU, right?), and he responded as if I was asking some pretty dumb questions. I tried not to take it personally. He told us to expect to be in the NICU for 4-6 weeks and that Cohen would have to be at least 4 lbs to be able to sit safely in a carseat. So our biggest goal was for Cohen to reach 4 lbs and not have any issues. Then and there, I became obsessed with Cohen’s weight and all things “numbers” when it came to my baby.

Later that night, Cohen got his oral gastric tube removed and got first sponge bath. Cohen’s nurse that day was Kelsie, someone I had met many years ago, but hadn’t seen since. It was so special to have her as our nurse! She helped Jason give Cohen his sponge bath – I watched and took pictures since I was still in quite a bit of pain (the day after a c-section is definitely the worst) and still required the wheelchair. Cohen was PISSED. He cried the entire bath – his whole body turned a bright red from being so upset! It was kind of funny. His little cry sounded like squeaks. I took a video of it and now it saddens me to watch it 😦 But, once Jason started rubbing his head, he completely calmed down and went right to sleep. We soon learned that when we needed to calm Cohen down, rubbing his head was the answer!

We stayed well past midnight holding our baby and loving on him. We were so thankful to be spending so much time with him, even if we had to be a part a lot of the time.

2 Days Old

We were back at 8am for Cohen’s first touch time of the day. Cohen’s bilirubin levels had come down, so he was able to stop the phototherapy. Cohen had gained weight and was now 2 lbs 14 oz. He still remained on parenteral nutrition and fluids, but they increased the breastmilk amount to 6mls every 6 hours and Cohen devoured it every time. I took a video of Jason holding Cohen that morning while Cohen slept and had the cutest, squeakiest hiccups. Adorable! I love watching that video too, because in the background you can hear the nurses celebrating that another little baby drank 35 mls (~1 oz) and how excited they were for her! That’s just how it is in the NICU – you celebrate every single milestone, whether big or small. And honestly, looking back, 35mls seemed like so much at one time, lol.

Later this day, Yai-ya (my mom) got to come and hold Cohen for the first time, and she loved it, of course. Jason’s Dad (Papa J) also got to come and meet Cohen with Jason present while I ate dinner. After dinner, we spent the evening in the NICU holding Cohen. One of the lactation consultants started coming by to see me at least once a day to help Cohen and I with the breastfeeding process. She brought me a hospital pump to Cohen’s NICU room and I would pump at every touch time there so I didn’t have to be away from Cohen.

3 Days Old

Today, they started to swaddle Cohen (which he looooved) and he was able to start getting 3mls breastmilk every 3 hours now instead of every 6 hours. Swaddling Cohen in the isolette is something that doesn’t usually happen until a baby weighs a certain amount (can’t remember why this is or what the weight is), and Cohen didn’t weigh that amount yet. But, his nurse fought for him to be swaddled early because Cohen was constantly moving and kicking his legs, which meant he was burning off all of his calories that he needed to keep weight on. Once he was swaddled, he was much more calm!

We spent as much time as we could in the NICU this day because I knew I was getting discharged to go home. I had the best OB (Dr. Richards), and I think she let me stay an extra day because of our situation. We also had one of the best nurses this day, which actually turned out to be the sister of some of our dear friends! At one point, it was time for my pain medication, but I was in the NICU, so she walked it down to me so I wouldn’t have to leave! The best!! She made sure to tell me that I could be discharged whenever I was ready. We ended up leaving close to 9PM that night. I was completely heartbroken – leaving my baby behind while we went home. Sitting here typing this, I am in tears thinking about that night. I cried the entire drive home and for a majority of the night. We just kept telling ourselves that the NICU was the best place for you and that your nurses loved you so much!

Overnight, we continued our regular schedule of getting up every 3 hours for me to pump and Jason to clean parts. I had purchased a Willow pump because I wanted to be able to pump at work without issues, so that’s what I was trying to use at home. I *thought* I had done a lot of research before I bought that pump, but it turns out I had not done enough. The next several days were filled with me trying to figure out how to use that thing. I’ll spare you the details, but I eventually learned it’s not meant to be used as the primary pump!

4 Days Old

Cohen’s touch times changed to 9, 3, 6, 9 (AM and PM) this day, and that is what they stayed the rest of his stay. So we showed up at 9AM! Cohen had gained weight – 1310 grams ( we started going by NICU weights) and his feeds had been increased to 6 mls every 3 hours. He still had TPN and fluids. At this point, I was no longer using a wheelchair and could walk, but was still in quite a bit of pain. Jason became a pro at taking Cohen out of his isolette every touch time – maneuvering all the wires and IV pole – all while holding Cohen in one arm! The nurses would joke that Jason should become an honorary nurse. We learned how to do everything ourselves, and the nurses trusted us with that.

Jason and I knew that both he and I would be going back to work the next week, so we started figuring out a good schedule that allowed us to keep our sanity and still see Cohen as much as possible. While we were both still at home, we came to the 9 AM, 12 PM, 3PM touch times together. Then my mom would come with me to the 6 PM touch time. We decided it was too much for us to try and make it to the 9PM touch time, so my mom ended up going to that one every night. We weren’t allowed to have food in the NICU, so our usual schedule at each touch time went like this: Show up, wash our hands, check Cohen’s temperature, change his diaper, feed him (usually, I would pump while I fed Cohen or while Jason fed Cohen), snuggle Cohen for an hour and then head home. We did that every 3 hours. Yes, it was exhausting, but we couldn’t see another way.

This day, Cohen started to be a little more awake for us and would open his eyes. I started singing to him, and he would smile every time. It was the cutest!

5 Days Old

Cohen is 1315 grams! He slowly, but surely, gains a little weight every day. Praise! His feeds were increased to 10 mls every 3 hours and at first, he was enjoying it. Soon, he started to get too tired to drink all of his bottles. The nurses warned us that if that continued, he would have to have a nasogastric tube (NGT) placed. I was hoping that wouldn’t have to happen. Dad got to have kangaroo time with Cohen, which just means skin-to-skin. it was so sweet! We did a lot of snuggling while we watched Redeemer church online from the NICU. Cohen also had more visitors this day! Bess, Jason’s cousin and my sweet friend, got to meet Cohen and hold him this day. We started seeing a lot of Cohen’s personality start to come out in his cute little expressions.

Jason’s parents also got to hold Cohen for the first time this day. It was kind of by accident – they had showed up outside of a touch time to honor they time that Jason and I were spending with Cohen (only 2 people could be in the NICU at a time with each baby), and our nurse was kind enough to let them hold him. I was actually sad to learn that, because it was important to me that I was present for any family or friends to hold our baby, because it was so special! But I hadn’t told anyone that, so no one knew! I let it go pretty quickly, and was just thankful they got to hold him.

6 Days Old

This morning, I got a call from Cohen’s nurse that Cohen had to have an NG tube placed because he wasn’t drinking enough of his bottles. I was devastated! I knew it wasn’t the end of the world, but it still hurt my heart. Also this morning, my friend and birth photographer, Britney Looney, came with me to the first touch time. Jason started back to work today, and we didn’t have any birth pictures of me holding Cohen (since that didn’t happen when he was born), so she was sweet enough to come with me to the NICU and take photos of us there! Of course this was the day Cohen chose to have an NGT placed! So that was in all of our photos. But that’s okay! Looking back, that doesn’t bother me at all – it’s just part of the memories. Also, my dad (Pappy), held Cohen for the first time today.

7 Days Old

Cohen’s feeds went up to 17 mls every 3 hours. At every touch time, we would feed him what he wanted from the bottle, then the rest would go through his NGT. Cohen was starting to become more alert and for longer periods, so that was really fun! Cohen got an ultrasound of his spine and head today, which was just part of protocol. I had a small baby shower thrown for me by the dietitians this day, so I got to attend that in between touch times. They made a sweet banner with Cohen’s name on it that we hung on Cohen’s isolette. It was the perfect touch!

8 Days Old

Cohen’s feeds went up to 22mls every 3 hours and he started to fill out a little more! We started swaddling with our own blankets and using our little preemie hats, which was so fun! Jason’s mom was nice enough to drive me up to the hospital for the next couple of mornings since I still couldn’t drive and remained on pain meds, so she got to hold and snuggle Cohen quite a bit during our time there in the mornings. Jason would go me with at the 12 PM touch time and then I would usually go with my mom or a friend at the 3PM, then Jason and I would go to the 6PM together.

9 Days Old

I started back to work today. You may be wondering why I chose to go back so early. Since I was working part time, I didn’t get benefits, so I had no PTO/vacation days and I only got 6 weeks of paid leave. I used one week for Cohen’s birth, so I wanted to save all the time I could for when Cohen actually got to go home. I planned to still have 3 months off, but if I used that while Cohen was in the NICU, that would mean I would only get 2 months at home with him, which I knew wouldn’t be enough time! I guess the good thing about going back to work so early, was that the cancer center was just a short walk down the hall from the NICU! So I would show up every morning to Cohen’s 9AM touch time and do our usual routine, only now I was going by myself. It was SO hard. I would take Cohen’s temp, change his diaper, hook up to the pump, then bottle feed him while I pumped. We would snuggle (also while I pumped) while the rest of his feeds went through his NGT. I would usually stay about an hour, then head to work. I always tried to scarf some lunch down while I charted so that I could go to Cohen’s 12 PM touch time and do it all over again. Jason would meet me there, which helped a lot. I usually had a friend or my mom at the 3PM touch time, and then I would go home around 4:30. Jason and I would go the 6PM together, then go home to eat dinner and sleep. We did that every weekday for 3 weeks. It was hell. But, back to the good things!

Cohen weighed 1500 grams this day, so he weighed enough to finally start wearing clothes! He barely fit into the preemie clothes we had, but it was the cutest! We started to notice his cheeks filling out more, too. My boss, Allison, had been out of town when Cohen was born. I was sad because she’s the NICU dietitian, so I had hoped she would be there while we were there! Thankfully, she supported me from afar, but she finally got to meet and hold Cohen this day! Jason’s cousin, Jaree, also got to meet and hold Cohen today! Another win, was that Cohen was starting to get better at breastfeeding. I started to nurse him at every touch time. If I remember correctly, it “counted” if he nursed at least 15 minutes. If it was any less than that, we still offered the bottle and then would put the rest through the NGT. This day, he nursed for 6 whole minutes!

10 Days Old

My best friend, Megan, got to meet Cohen today! Also it’s worth noting that I stopped writing in the NICU diary. It just got to be too much and I had forgotten all about it! At least I documented things on Instagram, lol. Cohen got moved to an open crib this day! This happens when they reach a certain weight and they can start to maintain their own body temperature a little better. I remember our nurse encouraged us to layer Cohen in two outfits, a hat and two swaddles so he wouldn’t “fail” and have to go back to an isolette. Thankfully, Cohen is warm-natured like his daddy and we only double-layered that one night!

11-15 Days Old

Jason and I learned about home delivery with HEB and what a GIFT that was!!

Karli held Cohen for the first time!

We dressed him in all the cute preemie clothes.

He started taking more and more breastmilk by mouth and was nursing longer!

During this time, Cohen started getting a bad diaper rash that we couldn’t get ride of. Us and the nurses were trying all of the creams!! We eventually gave him his first sitz bath (imagine a baby hot tub, basically) and he loved it!

16-20 Days Old

We had a rude nurse. I showed up to his 9AM touch time (which I had never missed) and he had already been bottle fed. I was crushed that I wouldn’t get to nurse my baby. The nurse that day was one we had not had before – she said that Cohen had been crying and was hungry, which is why she fed him early. Of course, I understood that. But it doesn’t mean I wasn’t still hurt and felt like I had missed out. That’s how I connected to my baby, whom I couldn’t live with yet. I asked if she would call me first if that happened again. She seemed agitated that I would ask this. Then she noticed my scrubs. I told her that if she called me, I could be in the NICU within 5 minutes. Thankfully, it never happened again.

My friend and coworker, Sam, got to meet Cohen this day! Unfortunately, while she was holding him, Cohen got a hold of his NGT and pulled it out. It was scary! When it happened, I was pumping, so I called to his nurse to let her know what happened. She was in the next room feeding another baby, so she told me to make sure the NGT was pulled all the way out so he wouldn’t choke on any of the breastmilk going through it at the time. I did as she asked. Sam left not too long after that, poor thing, lol. Before I left, I stayed and held Cohen while the (rude) nurse put back the NGT. She had to tear off the sticky tegaderm that was supposed to keep Cohen from taking the NGT out, and when I say “tear”, that’s exactly what she did. Cohen screamed and I was close to doing the same! My eyes went wide and I was pissed at she handled it. I left crying that afternoon and prayed we wouldn’t get that nurse again.

Cohen’s diaper rash continued to be a pain in everyone’s butt (pun intenteded)! We were having to put allllllll kinds of creams and lotions and butt pastes on his little bottom at every touch time. Eventually, we started putting a pee pad in his bed, then would put Cohen on his stomach without a diaper and tape oxygen tubing to Cohen’s bed, aimed right at the rash. It was a sight! But over time, that rash finally went away!

Cohen ended up pulling out his NGT again just a few hours later. He got very good at grabbing hold of that tube when no one was watching and pulling it out!

On December 17th (17 days old), Jason’s cousin, Jancee, got to hold Cohen for the first time. This was also the first day that Cohen breastfed for 23 minutes, so he didn’t have to have a bottle or get anything through his NGT!

21-25 Days Old

Cohen is 4 lbs!! So close to our goal weight! He also got to meet Santa Clause and get pictures with him.

Cohen is having bradycardia (what we would call “brady’s”), which means he would have an abnormal heart rhythm and his heartbeat would slow. This had been happening for a few days now, but it started to become more of a concern because we learned he couldn’t go home unless he was “brady free” for 48 hours, and he was having several a day at this point.

One day, we showed up to a touch time and Cohen was in a swing – his nurse said she put him in “time out” because he wound’t stop crying. He was very happy in the swing though! So cute!

We spent Christmas Eve and Christmas Day in the hospital. It was extremely hard. We didn’t do Christmas with any family except for a quick “snack” on Christmas Eve with Jason’s parents and Christmas lunch with my parents and Karli. We missed seeing everyone, but we knew we didn’t want to be away from Cohen for more than was necessary. Christmas Eve, Jason and I gave Cohen a sponge bath together – he loved it! It was the first bath that I got to be a part of as his mom. Christmas Day, Cohen didn’t use his NGT at all for feeds because he nursed so well! We knew we were getting close to bringing Cohen home, but he was still having those dang brady’s!!

26-30 Days Old

Cohen was still having brady’s and I was sooooo over it!! Cohen was doing amazing with nursing – we nursed at every touch time and we rarely ever had to use the bottle or his NGT (except at night), and he was gaining weight! We started to be able to tell when Cohen would have a brady – right before he would have one, he would typically choke when nursing. I started getting so frustrated, because how were we supposed to be able to keep him from choking?! No one could tell me. So I brought it up to the NP during rounds. I was ready to take my baby home. I would also get frustrated that Cohen would nurse super well during the day, but then at night, he wouldn’t take his bottles well and that’s when we had to start using the NGT.

The NP asked if we wanted to “room in” for 48 hours and I said “absolutely!” So that night, Jason and I packed our bags in preparation to stay at the hospital for 48 hours so we could try to bring Cohen home. Before we left to pack up, our nurse, Gaye, put Cohen in a car seat to do a car seat test. This is where the baby has to be in the carseat for 2 hours without any bradys, oxygen issues, etc.

After showing up, prepared to room in, we went back to Cohen’s pod and as soon as we walked in, Gaye looked disappointed. She told me Cohen had just failed his carseat test, right before the 2 hour mark. I was disappointed, but knew it wouldn’t be a big deal to do another one. I was just ready to spend a full 48 hours with my baby and hopefully take him home!

Gaye, Cohen’s nurse, helped us move Cohen in one of the “room-in” rooms within the NICU. When you walk in, there is a small “foyer” with a rocking chair, sink, mini fridge and a table. You move further in and theres a queen-size hospital bed with a night stand, space for baby with all the monitors, a table, and a bathroom with a shower. The hardest part was that there were no windows. I guess it was okay from a baby standpoint, but gosh, I felt like I was in prison.

Before we were fully moved in, Cohen’s NGT was removed! We didn’t know yet, but he wouldn’t have to have it replaced at all because he was finally eating so well.

That night, Jason and I both got up every 3 hours to feed Cohen. We set alarms each time, but Cohen was actually the one who would wake us up before our alarms could. I would nurse him for as long as he wanted, then Jason would put him to sleep so I could pump. By this point, we recognized that I was an oversupplier. Honestly, my body didn’t have a choice. With Cohen not nursing well in the beginning, I had no choice but to pump in those early days. Then, when he did start to nurse well, no one told me I didn’t have to pump afterwards. I was so used to nursing then pumping – I had no idea about the whole “supply and demand” thing until my supply was already established! Looking back, I’m so thankful for the oversupply, even though it came with it’s challenges, because I never worried if I was making enough for Cohen, and I got to help nourish 14 other babies during my 15 months of breastfeeding.

But anyway, back to rooming in. We made it through our first night together as a family and I was so thankful! Unfortunately, during one of Cohen’s early morning feeds, he had had a brady, which meant we couldn’t go home for at least another 48 hours. I was devastated. Cohen, Jason and I spent the rest of the day together. Jason and I gave him another bath – just the two of us – and it was really sweet. We snuggled our baby all day and celebrated when he gained weight, considering he had been breastfeeding for the past 24 hours! Later that afternoon, the NP came by to tell us we didn’t need to stay the night again if we didn’t want to. As much as I didn’t want to leave Cohen, I knew I couldn’t spend another night in that room. I needed windows. And my own bed! We decided to go home and rest.

Jason and I decided not to come to Cohen’s 3pm touch time so we could pack and gather things up and spend some time at home. Gaye was SO excited because that meant she would get to feed him! I thought it was so sweet and loved how well she loved my baby! She actually texted me that afternoon to let me know he had taken 60mls from the bottle – 2 whole ounces! I was shocked. He had never eaten that much from the bottle before and had been struggling to take 38 mls (his minimum required)! Breastfeeding him for 36 hours proved to encourage him the most! I was so proud of Cohen.

The next day, Cohen was one month old! We resumed our normal routine with touch times, praying we would get to go home soon.

31 Days Old

Jason and I showed up to the NICU like normal – it was Friday, December 31st, so we both had the day off from work. We had a new nurse we had never had before, and when we walked in, she was bottle feeding Cohen. I immediately started to get upset because, again, our routine is for us to show up and I nurse Cohen. When she saw us though, she immediately handed him over to us, along with the bottle. She told us he had been crying and hungry! So I let it go. Then she said, “Are y’all ready to go home today?” I looked at her in shock. Then I looked at Jason. She said, “Oh, they haven’t told you yet?” We shook our heads. No, no one had told us! We didn’t think it had been 48 hours since Cohen’s last brady, and Cohen hadn’t had a carseat test yet. But, our nurse assured us that they had done a carseat test last night and he passed, and he was ready to go home! We were overjoyed! We had to wait around for a few hours until the nurse practitioner could come and discharge us. So in the meantime, we snuggled Cohen and picked up his multivitamin from the pharmacy downstairs. Jason and I decided not to tell anyone we were taking Cohen home.

Once we were finally discharged, we texted my parents and asked if we could come over for a little bit. They said yes, so we immediately went to their house with Cohen! When we got there, my mom was in her bathroom getting ready. Jason and I quietly snuck in and took Cohen out of the carseat. My dad saw us and seemed to be pretty surprised! I took Cohen and walked to my parents bathroom. When my mom saw me in the doorway, she screamed! Then she cried. It was a sweet surprise! We spend the afternoon there, letting everyone get all the Cohen snuggles in.

After dinner, we headed home and let Meredith and Leia meet Cohen – they loved him! Leia actually turned out to be pretty protective over him – it was so sweet.

Well, there you have it. The story of quite possibly the worst month of our lives! Of course, Cohen makes it all worth it.

There is a lot I can’t remember, or have probably forgotten. One thing I barely touched on was the fact that every single morning, I would come in and pray that Cohen had gained weight. It was crucial. I became obsessed with how many grams Cohen weighed that day. Not only that, but how many mls Cohen was taking from his bottle, when we were bottle feeding – and especially overnight. I let those numbers easily dictate my emotions. It was truly traumatic.

I never want to have to go back to the NICU again. Even today, walking past it at work is something I try to avoid at all costs. Before we left, our nurses asked us to bring Cohen by to visit, and I have yet to do that because it’s just too hard! All of the feelings and emotions come rushing back, and it genuinely makes me want to throw up.

If you’ve every had a baby in the NICU, where it was 1 day, 30 days, or 200 days, you are a warrior. Leaving your baby behind is the absolute worst, and it takes the strongest parents to do it! I am proud to have made it through that season, and pray I never have to go through it again. But if I do, for whatever reason, I know the Lord will sustain me and that He will be my rock and my fortress. He is who I will turn to for joy, peace and patience, because only He can provide those in the most difficult of circumstances. I am thankful for His faithfulness!

Cohen’s Birth Story

I LOVE reading birth stories. I love reading about how a new life came into the world, and all that the mom experienced to get her baby here. I’ve also dreamed of having my own birth story and being able to tell how MY baby came into the world. I wasn’t sure I would ever get to do that, but here we are. I am so excited to share about how Cohen Jac came to be earth side.

Before we dive into it, I need to sing the praises of Known Photo, also known as my friend, Britney Looney. Every photo you see in this post (except for the ones that don’t look like they were taken by a professional, lol) were taken by her. She’s amazing! I called her every time I had a new update on Cohen coming early. She was the third person I called (after Jason and my mom) to tell that I was being induced a day sooner than expected and she was there by my side throughout induction, through the night, and during my C-section (yes, DURING – thank you Dr. Richards!). She was an amazing doula that made sure my needs were being addressed while also keeping Cohen safe. In the midst of that, she took these amazing photographs that I will literally always cherish. It was such an honor and a joy to have her with me! I highly recommend her for anytime you need photos taken.

Okay, now that you know how amazing Britney is, we can get started!

At our 20 week anatomy scan, we found out Cohen was smaller than he was supposed to be – IUGR, they called it (intra-uterine growth restriction). They didn’t know the cause of it. Because of the IUGR, we followed up every 4 weeks for another growth scan to make sure Cohen was at least growing. The ultrasound doctor would come in after each ultrasound and let us know if Cohen was growing adequately and what to expect. Eventually, she told us Cohen would likely need to be born between 34-36 weeks. She said the risk for premature babies decreases after 34 weeks, but letting the pregnancy go longer than 36 weeks could increase our risk for a still birth. My OB had already told me she likely wouldn’t let me go past 38 weeks because of having cystic fibrosis, but knowing we could meet our son 4-6 weeks earlier than expected was something we were surprised to hear. We were told to expect Cohen to spend some time in the NICU, which truly shocked us.

I started following up with my OB every 2 weeks once I was in the third trimester (28 weeks). At 32 weeks, I started twice weekly non-stress tests. I went in every Monday and Thursday morning and sat in a chair while they monitored Cohen’s heart rate for 20-40 minutes. Each time, they had to have me drink water or lay on my side, or use a buzzer on my stomach to wake Cohen up. Jason would tell me that Cohen just likes to relax like he does! But each time, Cohen did what they asked and I got to go on with my day.

One day as I was leaving work, I got a call from my OB and she told me that she had talked to the ultrasound doctor and they decided I needed to be induced sooner, rather than later. She said it wouldn’t make a difference in Cohen’s NICU stay or his health if we waited until 36 weeks, except for increasing our risk for a still birth. So we were now scheduled for induction on Tuesday, November 30th. I was in shock! I called Jason and asked if he was ready to have a baby the next week; needless to say, he was in shock as well.

On Monday, November 29th, I went in for one last non-stress test and growth ultrasound. I was sitting in my regular chair with monitors on my belly, scrolling through instagram, when the technician came in and told me she had to call my OB because Cohen had had a deceleration in his heart rate, meaning his heart rate had dropped. She told me they would be looking for a few specific things in the growth ultrasound to make sure he was doing okay.

My mom, Jason and I attended the growth ultrasound, which showed that Cohen was still pretty small, but it seemed like everything else was okay. We didn’t get to speak with the ultrasound doctor this time, but were told I should expect a call from my OB so she could tell us what she wanted to do. Because I was supposed to be induced the next day, I figured it would be fine and so my mom, Jason and I all went our separate ways and headed to work.

I hadn’t been at work very long when I got a call from my OB. She told me she had talked to the ultrasound doctor and it looks like there was some asymmetrical growth. Because of that, and the fact that Cohen’s heart rate had dropped, they felt it was best to go ahead and induce me that day. She said I could still try to have a vaginal delivery, which I was excited for!

So I left work and headed home to Jason. We both couldn’t believe we were about to have a baby! Thankfully, we had packed our bags the night before. We grabbed what was left, notified our parents (and my Doula-tog Britney) and headed to Chick-Fil-A for one last, quick meal.

At the hospital, we checked in to Labor and Delivery where they took us straight to our room. It was all so surreal – especially as we saw the warmer in the corner where a newborn baby would be. I changed into the hospital gown and finished my lunch as Dr. Richards (my OB) came in to discuss the plan.

She started me on Pitocin at a slow rate about 1:30 PM.

My friend/birth photographer/doula, Britney Looney, came in, as well as my mom. For the rest of the day, we hung out in my room. Jason and I played games and listened to my birth playlist to pass the time. My dad and sister visited, and the pitocin was cranked up a little at a time every 30 minutes. I felt some small contractions here and there, but never had any that were truly painful or anything. Britney encouraged me to walk the halls of L&D, which we did. I felt a couple stronger contractions while doing this, but eventually I got bored and we went back to the room.

Next, I tried sitting on a yoga ball to progress labor. Jason and I continued to play games and I ate popsicles. Unfortunately, nothing really happened. Instead, we were having a hard time keeping a good read on Cohen’s heart rate, so my nurse requested I stay in bed. Soon, it was getting late. My sister and parents left, but made me promise to call with any changes.

About 11PM, we all got ready for bed. Britney slept on the tiniest of all couches, Jason slept in the recliner and I barely slept at all with the nurse coming in every couple of hours for vital signs or increasing the pitocin. When I couldn’t sleep, I ate popsicles and watched Netflix. But I still barely felt any contractions.

About 4 AM, I got up to go the bathroom. When I came out, I stood next to my bed for a little bit and watched Cohen’s heart rate. As I watched, it suddenly started to drop. It dropped low, and then came back up. I knew the nurse would come in pretty quickly, and she did. She asked if his heart rate had dropped because I stood up, which caused the monitors to move. But I told her I was standing still when it happened. As we stood there talking, his heart rate dropped again. She let me know we would need to call Dr. Richards. Now I knew I definitely wasn’t going to be sleeping.

Jason and Britney both woke up and I filled them in on what was happening. My nurse came back in the room to check to see if I was dilated at all. That was the most pain I had experienced so far. I wasn’t dilated to even 1 cm. I had been on pitocin for about 15 hours at this point (meaning it had reached a pretty high dose according to Dr. Richards) and nothing was happening. My body just wasn’t ready to bring Cohen into the world. I started to feel discouraged. The pitocin was turned off, and I finally felt a few contractions. My body was so confused!

In what felt like a few minutes later, a few nurses were in my room prepping me for a C-section. It felt like Dr. Richards must have been just down the hall (although I know she was at home sleeping when they called her), because it seemed she got there quickly. She told me that because I wasn’t dilated with even a high dose of Pitocin, and because Cohen’s heart rate was dropping, a C-section would be the best option for both of us.

Throughout my pregnancy, I had kept an open mind about my birth plan. Of course I wanted a vaginal (possibly un-medicated) delivery, with skin-to-skin and all of the sweet moments moms dream about after delivering their little one. As soon as I realized my baby needed to come sooner, I began to prepare myself that it was possible those things wouldn’t happen. And they didn’t.

But I wasn’t really sad about it. At that point, with Cohen’s heart rate decelerating and me feeling discouraged, I was ready for a c-section. I was ready for him to be here.

We had called my parents when we learned of the change in plans, and they were there within minutes. They kissed me bye as I was wheeled into the OR with Jason and Britney by my side.

In the OR, it was a whirl-wind. The anesthesiologist placed the spinal block (not a very comfortable experience, in my opinion) and I soon began to feel numb from my chest down. The catheter was placed, the drapes were hung in front of my face and Dr. Richards came around to talk me through the procedure one last time. Before I knew it, the NICU team was called and soon the word, “Incision” was being uttered by someone. Jason held my hand and we waited until 6:10AM when we heard the sweetest sound – the sound of Cohen crying. I cried and looked up to see my husband who doesn’t cry, shedding tears.

Not long after we heard his cries (screams, really), Dr. Richards exclaimed that he was peeing on her. This little boy was something else already! He was immediately handed off to the NICU team, but they were so kind to let me get a quick glimpse of him before they started working on him. It’s such a surreal moment – to actually see the baby you’ve carried inside of you. The baby you have prayed so hard for, and waited so long for. My heart burst with joy, seeing the Lord’s promise to me fulfilled at last!

The NICU team swaddled him in sterile plastic wrap to keep him warm. He was started on C-PAP (continuous positive airway pressure) to help him breathe. Jason squeezed my hand before he went over to the incubator to see him. They allowed Jason to go with them down the hall to the NICU while Dr. Richards stitched my incision. Britney sat with me while he was gone. I don’t remember a lot after Cohen being born. I had so much adrenaline at that point. Ever since I got the spinal block, I was shaking the entire time. So that’s what I remember most after Cohen’s birth, was the constant shaking like I was freezing, but I was actually relatively comfortable. Before I knew it, Jason was back by my side, holding my hand. He looked me in the eyes and told me I had done a great job and he was so proud of me.

It seemed like the whole thing took 10 minutes, when I know we were there longer. Soon I was wheeled back into the birthing suite where my parents were waiting. They had been able to see Cohen briefly as he was wheeled down the hall to the NICU. They made sure I was okay before heading home to get more sleep. Britney left, and soon it was just Jason and I. It felt so surreal – to not be pregnant anymore, to have my son earth-side.

A nurse soon came into my room with pumping supplies and told me I would need to start pumping breastmilk every three hours to tell my body I didn’t have a baby anymore. I had been prepared that I would need to start doing this by a friend of mine who had given birth to her baby at 27 weeks, so it didn’t come as a shock. Thankful for you, Lauren!

We were wheeled up to the family care unit, into the room we lived in for the next 3 days. Pretty soon, it had been 3 hours since I last pumped, and I needed to pump again. My nurse had come in to check my vitals as I got started. Not long after my pumping session had begun, I started experiencing severe cramping – 100x worse than any “contraction” I ever felt during labor. I started crying big tears – the pain continued throughout my entire 25 minute pumping session. Jason held my hand the entire time, telling me to breathe. I knew what it was; my uterus was shrinking. I had heard about this pain, but WOW I was not prepared for it! Thankfully, it was the one and only time I experienced it that badly, and once the pumping stopped, so did the pain.

It wasn’t much longer that we were finally able to head down to the NICU to see Cohen for the first time since he was born. It felt like it had been days since I had seen him, but it had only been roughly 6 hours.

We were required to check in at the front desk of the NICU in order to be let in. We entered through double doors and were asked to wash our hands well and place our phones in a sanitizing station. Once that was done, Jason wheeled me to Pod A, room 14, where Cohen lay in his incubator. I gasped when I saw him. My precious little boy. Tears filled my eyes as I took him in. He had oxygen on (which he would wean off of the same day), along with dozens of wires. But he had the longest little limbs – which he got from his daddy, no doubt – and beautiful brown hair. At just 2 lbs and 11 ounces, he was so tiny!! I loved him so much already.

*Not taken by Britney*

Taken by Jason

Taken by Jason. Lol

Cohen’s nurse, Gaye, came over to greet us. Fittingly, she was his very first nurse, and his very last nurse when we left the NICU 31 days later. She explained about touch times – specific times of the day when we would be allowed to get Cohen out of his incubator and hold him. We had shown up in between touch times, unknowingly. But Gaye, being the sweet nurse that she is and knowing this was the first time we were seeing our son, allowed us to open the side doors of his incubator and touch him. And then I cried more.

I’ll end our birth story there. Over the next 31 days, we spent every opportunity we could at Cohen’s bedside. We learned to feed him, change his diaper, take his temperature, balance a thousand wires, and more. I could write on and on about our NICU experience, and I likely will another day. But for now, thank you for reading about how our sweet boy came into this world! It was hard, unexpected, and challenging. But I firmly believe the Lord used my experience as someone living with a chronic health condition to prepare me for this exact thing – to be a NICU mom; to be an advocate for my child; to go through a challenging birth.

It has been obvious to me that the Lord has had His hand in Cohen’s life and birth. I see how faithful and good the Lord is – He gave us a child after we asked and prayed for one for years. He gave me a relatively easy pregnancy – I actually really enjoyed being pregnant (minus all of the doctor appointments). He gave us the BEST doctors to make sure Cohen was born healthy and alive – what a miracle! I owe everything I have to my God.

This birth story is only possible because of God. What an honor it is to be chosen by God to be Cohen Jac’s mama!

I’ve considered following this post with a post about our NICU stay. Let me know if that is something you’d be interested in reading!

Below are a few other pictures that were taken by Britney in the NICU, roughly a week after Cohen was born. Since we didn’t get to have any pictures of me with Cohen after his birth, she was sweet enough to come back to the hospital and spend some time with us, getting in those sweet pictures. Can’t recommend her enough!!

The Story of Baby Robison

After seeing our baby for the first time!

I have been waiting a long time to write this post! As many of you know, I’ve wanted a baby for several years now. Jason and I started trying to conceive in September 2019, only to be diagnosed with infertility a month later. We knew I wasn’t ovulating, but didn’t know why. We were started on Clomid and after three months of increased doses not working, we were told to go ahead and make an appointment with a fertility specialist. I had heard that Dr. Phy was the best in Lubbock, so I made an appointment with her in January 2019-only to be told it was a 1 year wait and my appointment would be January 5, 2020. For some reason, even though that was such a long time, I felt peace about waiting to see her. Fast forward to August 2020 and we became licensed foster parents (and I had cystoscopy/hysteroscopy/laparoscopy to see if I had endometriosis or if my tubes were blocked). In December 2020, we received our first placement – a ten month old baby girl- who is now a 17 month old wild toddler!

Finally, January 5, 2020 came and I met Dr. Phy for the first time. I tell everyone I meet now that Dr. Phy is 100% worth any wait. I really believe I would have waited even two years to see her. I went into the appointment not knowing if I wanted to get pregnant anymore; I just wasn’t sure it was what the Lord wanted for me. I felt like the doors to pregnancy had been closed and were staying closed. Jason and I had talked prior to my appointment and had been praying about it as well. We decided that if the Lord opened the doors for me to possibly get pregnant, that we would be obedient and walk through them.

Meeting with Dr. Phy was the first door to be opened. She did a full exam and asked questions about my medical history. She spent so much time with me. I was very honest and told her how I was feeling towards pregnancy. She did then a transvaginal ultrasound to look at my eggs and she was amazed! She said I had so many eggs and she considered me to be “very fertile”. She said, “Jordan, I think you’re supposed to have lots of babies!” She then showed me the chills on her arms (a common thing for Dr. Phy to experience, haha) and I cried tears of joy. She told me I could take all the time I wanted deciding if I wanted to pursue pregnancy or not, but that when/if I was ready, she would be there. She said she thinks I likely was not ovulating because I’m just so lean and do not make enough estrogen. Her solution would be to start me on a pill called Letrozole. Letrozole is actually used to treat patients who have breast cancer, but can enhance ovulation by blocking estrogen production and causing the brain to increase its stimulation of ovarian follicles (where the eggs are made). Crazy stuff!

I left the appointment with Dr. Phy filled with so much hope. I felt I had not been given any hope since the diagnosis of infertility, and I was so thankful! I called Jason to tell him about the appointment and asked what he thought. He said he thought this was the Lord opening a door, and we should walk through it! I knew if Jason was telling me that, it must be true. Haha. So we started Letrozole just a few weeks later!

I actually kept this appointment, and the fact that I was going to start fertility treatments again, a secret from most people. I didn’t even tell my mom 😱 I think I was just filled with so much hope that I wanted it to be a huge surprise if we were able to get pregnant! It was reallyyyy hard keeping that a secret from her!

After starting Letrozole, I was required to come in for an ultrasound every month to see if I was ovulating. The first ultrasound showed that I was ovulating, but we did not get pregnant that month. We did it all over again in February. This time, we also got bloodwork done to check my progesterone levels-all of which looked good. But again, we did not get pregnant. In March, I decided to take a break from fertility treatments because I had lost some weight and wanted to focus on getting it back. I decided to take a break again in April to let the hole where my feeding tube had been close up. By mid-April, the hole had closed. One day, I had signs that I was ovulating. I had never had them before, so I KNEW what was going on. I remember thinking, “Hmm. I wonder what would happen if we just tried on our own this time?”

So we did.

The first sign I had that I could be pregnant was acid reflux. I deal with acid reflux on the regular, but I take a prescribed medication for it that helps 100% and I never notice the reflux unless I forget to take the pill. But I hadn’t forgotten. Then I started getting tired in the middle of the day, like super tired. Then I was M.O.O.D.Y.😬 Then I started cramping. I even texted a friend of mine that had just told us she was pregnant to ask when she started experiencing symptoms. I told her I was “feeling blah”. I even asked her when she took a pregnancy test because I just felt so different and wanted to know the best time. I had had so many negative tests already. She let me know that she took a test a couple of days before missing her period and it was negative. But then she missed her period and was still cramping, so she took another test and it was positive!

My next period was supposed to start April 29th. I took a test on April 27th that was negative. I was disappointed, but knew that I would be starting Letrozole again when my period decided to roll around. On April 29th, I flew to stay with Karli in California for a late birthday Celebration. I had a horrible travel day that was very stressful, so when I missed my period, I wasn’t even surprised. I cramped most of the day and my breasts had been very sore, so I expected it to start anytime. The morning of April 30th, I was surprised to find I still hadn’t started. I had kept my friend’s experience in my mind, so along with all of my period supplies and even the Letrozole, I had brought a pregnancy test with me.

I was up earlier than Karli (to no one’s surprise, if you know her, haha), so I took the test first thing that morning. As I waited for the test to say “Not Pregnant”, I put in my contacts. Before I could even make sure the second contact was put in, I glanced at the test and saw the word “Pregnant” appear. I gasped. I immediately picked up the test and stared at it. It was real. I started to shake.

I had waited so long to see that word on a test, and had only seen “Not Pregnant” too many times to count. You’d think I was crying. But I was elated! I ran to Karli’s room where she was still asleep and woke her up saying, “Karli!! I’m Pregnant!!!” She rolled over with sleepy eyes and said, “You are???” She immediately suggested we go to the store and purchase another test just to be safe. I agreed. So we quickly got ready and headed to Target. Along with a box of pregnancy tests, we purchased a cute onesie and a rattle so I could send a cute picture to Jason. We got back to Karli’s apartment and I took the second test. Almost immediately, the word “Pregnant” appeared yet again! I couldn’t believe it! It was actually happening.

I put together the onesie, rattle and the pregnancy tests and texted Jason that I needed him to come to an appointment with me to see Dr. Richards. He asked who Dr. Richards was (in fairness to him, I had just switched and made her my new OB in March), and I told him it was my OB. He texted back, “Why…” and then he called me. He knew. Lol. But I hadn’t sent the cute picture yet so I didn’t answer 😂 After I finally sent the picture and he had seen it, he called me again and said, “Are you serious?!” I told him I was so serious and that we were pregnant! We were both so excited! We both wished we were together in person, but he was glad I had told him that day instead of waiting until I saw him.

We decided to wait until Mother’s Day weekend to tell our parents. But in the mean time, I called my nurse practitioner at Cook Children’s to tell her the news, and she told my nurse and dietitian who called to congratulate me. We went over my medication lists and made sure everything was good on that end. I called Dr. Phy’s office to let them know, and they scheduled me for bloodwork the next week to check my HCG levels and progesterone levels. My appointment with Dr. Richards wasn’t until I would be ten weeks pregnant, and I couldn’t believe I had to wait so long! I went to bed that night still not believing I was actually pregnant. I woke up the next morning and took the last pregnancy test just to be sure. It was positive 😂

The next week, I went to Dr. Phy’s office for blood work and was told I would be getting labs drawn once a week until I either had an ultrasound or was ten weeks pregnant-whichever came first. If you know me, you know lab draws are HARD for me because you can only get blood out of my hands, but my veins are so tiny and difficult that it’s just almost impossible. So I was nervous for the weeks to come. Thankfully, the nurse that drew my blood each week was amazing and she would prepare a hot towel for me every week to help warm my hands up. Because of that, she got all the blood she needed on the first stick, every time. So thankful for her!

We tested my HcG and progesterone levels each week. Every week, my HcG levels SOARED – so much so, I was convinced there was more than one baby in there! My progesterone levels were low starting off, so I was started on a progesterone supplement. They eventually got to where they needed to be when I was taking the progesterone supplement twice daily, and I was able to stop the supplementation at week ten, as the placenta was fully developed and could manage the levels on its own. I had my first ultrasound with Dr. Phy at nine weeks. Jason got to come with me and we were able to see the little peanut (literally) and even hear the heartbeat! It was so cool! We cried. Dr. Phy cried. I loved it. She also checked and made sure there was just ONE baby, and thankfully, there was! But she said she was surprised as well!

At ten weeks, I met with Dr. Phy one last time before I “graduated” from seeing her. I mentioned to her that I had experienced some intense itching on my legs after getting up from sitting or laying down for long periods of time. She decided to run some blood tests. The next day, Jason and I were on the plane about to leave for Hawaii when I get a message from Dr. Phy: most of my bloodwork had come back normal, but it did show the presence of lupus anticoagulant antibodies in my blood. This meant that I was at a higher risk of blood clots. She recommended I start taking daily Lovenox injections (a blood thinner) when I got back from Hawaii and that a referral be sent to hematology. I agreed to both.

After getting back from Hawaii, I picked up the Lovenox shots from the pharmacy and my sweet friend, who is also a nurse, Hannah, came over and helped teach me to give myself the shots. I learned that they are extremely painful and it burns for a few minutes after the shot is given. NOT FUN. I was so disheartened that I may have to do this my entire pregnancy. I was given some hope when I realized that hematology was located in the UMC Cancer Center, where I just so happen to work. And the doctor I was referred to is a doctor I work very closely with.

The next week, Jason and I met with Dr. Richards, my OB, for the first time since I had become pregnant. She did an ultrasound, and we were absolutely blown away when we saw the baby moving all over the place!! We had not seen the baby move yet, so this was such a wonderful surprise! That day, I also did bloodwork for the genetic screening and to find out the gender (!!!).

I got in to see Dr. Tijani, the hematologist on June 24th. He told me that he wanted to do more bloodwork to get a full picture and see if more antibodies were present in my blood. If there were more, I likely had something called Antiphospholipid syndrome and would have to continue with the lovenox injections. But if the lupus anticoagulant was the only antibody present, I was considered low risk, and could just take a baby aspirin every day. Jason and I started to pray my blood work would come back normal! By the beginning of July, my bloodwork came back and I could see through the patient portal that it was normal. So one day, as Dr. Tijani was coming out of clinic, I asked him about my bloodwork and if I could come off of the lovenox injections. After looking, he agreed that I could, as long as I would continue with a baby aspirin daily. I told him I would do anything to get out of the injections!

As of now, I’m waiting until our gender reveal this weekend to know if Baby Robison is a boy or girl. Now that I’m in my second trimester, Dr. Richards is seeing me every three weeks (she was seeing me every two weeks). Dr. Tijani will see me monthly, and then more often in my third trimester. I still go every three months to see my pulmonologist at Cook Children’s, but will see my CF Care Team more often in the third trimester. And last but not least, I have my first appointment with my high risk doctor on July 23rd, and I’m not sure how often I will see him. So if you’ve lost count, that’s four doctors that are following me in this pregnancy-and that doesn’t count Dr. Phy that helped me get here! It’s a lot. And all of the appointments are a little overwhelming at times. But I will say this, I’m extremely thankful for the amazing team of doctors I have surrounding me, taking care of me and our sweet, miracle baby.

I have seen the Lord’s hand in this pregnancy, even before we were pregnant! It was really hard and took a lot of time (and prayers), but I eventually was in a place where I could say that I 100% trusted the Lord and His plan for growing our family. If we had gotten pregnant when I wanted to, we would have had a baby in 2020 and would have been quarantining with a newborn. Kudos to all of the moms and dads that did this!! But it would have been really hard for me to not have family supporting us in those early stages. In addition, we wouldn’t have become foster parents and wouldn’t have been able to love on and get to know Baby I! The Lord truly knows what He is doing. I continue to see His hand on this journey, even amidst the difficulties and the hard days. I haven’t had any nausea/vomiting (except on Father’s Day when I randomly couldn’t stop throwing up and had to go the ER for fluids and anti-nausea meds – that was a rough day), so I’ve been able to keep most of my weight on.

He also provided financially as infertility is $$$$. Dr. Phy doesn’t really take insurance, so I was paying out of pocket for every visit with her, including any ultrasounds and labwork. It adds up really quickly, especially if you see her, do lab work and an ultrasound even just once a month. Not to mention what you pay for the actual fertility treatments. And we didn’t even do IUI or IVF, which can cost thousands of dollars. It’s definitely a big financial commitment, and I hate that it is this way just to start a family.

Now that I’m in the second trimester, my appetite is seriously so good and I’m eating all the things!!! Jason and I feel eternally grateful that the Lord said “yes” to our request for a child. We praise Him, and Him alone for this miracle. We ask that you would join us in praying for a healthy pregnancy and a healthy baby!

Verses that gave me comfort in the midst of infertility/questioning the Lord’s plan:

Romans 8:31-32: “What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?”

Romans 11:33-36: “Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! For who has known the mind of the Lord, or who has been his counselor? Or who has given a gift to him that he might be repaid? For from him and through him and to him are all things. To him be glory forever. Amen.”

Isaiah 55:8-9: “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

I’m Ready to Submit

Photo Credit: Known by Looney Digital

As I sit here writing this, my 11 month old foster baby is taking her nap. I’m watching her sleep peacefully on the baby monitor, hoping she takes an extra long nap after our New Year’s Eve fun last night. We’ve only had baby “I” for 3 weeks, and yet I have learned so much about foster care and myself. I feel like I’m a different woman.

These past 3 weeks have been full of a lot of joy. I’ve wanted to be a mom ever since I could remember. I asked for baby dolls every Christmas and birthday. Anytime someone asked me what I wanted to be when I grew up, I said I wanted to be a mom (and eventually a first grade teacher). Having a sister that was 3 1/2 years younger than me was really fun (not for her, just for me), because that meant she was MY baby. I got to dress her and play with her and even boss her around until she was old enough to bite me (literally-but I deserved it).

When I got older, I would dream of getting married and having babies. Eventually, I realized that having cystic fibrosis could prevent me from having children. I’ve always been a very realistic person, so knowing that my life expectancy is not as long as most, I wondered if I should even fall in love and get married, let alone have children of my own. I struggled for many years with those thoughts.

Then I met Jason in high school, and he let me have those hard conversations with him. As we continued to date in college, he let me know that he’d love me for as long he got me-no matter how many years I had left. We talked about fostering and adopting as biological children may not be a possibility, and he was all for it.

When we first got married, we did a little research together and even talked to some people who were currently fostering in our area. Then I started learning that women with CF could get pregnant and have very healthy pregnancies and babies. Even my doctor said that women with CF typically get pregnant very quickly and they had no problems with me trying to have a child. So I talked to many women with CF over social media and started doing more research into someone like me having biological children. The more I read, the more I fell in love with the idea of carrying a child. I fell in love with childbirth. Jason and I still wanted to foster/adopt, but we decided to wait and try to have biological children first and possibly foster older children when we were at the appropriate age to do so.

If you know me, you know the rest. You know we started trying in September 2019 and that a month later, we were diagnosed with infertility. Infertility has been the hardest, most trying diagnosis I have ever received. You might think that’s a little strange, seeing as I’m living with a progressive disease that may likely take my life one day. But I don’t know a life without CF. Receiving a diagnosis that alters my future in a way I had not expected is something I never wanted. I don’t think it’s really fair that I have both CF and infertility. But neither were my choice.

We started the process of fostering in December 2019 when we had our first meeting with the Children’s Home of Lubbock. After deciding to stop the current fertility meds that I was taking in January (because they weren’t working), we started taking the required foster care classes in February. I finally decided to do the hysteroscopy/cystoscopy/laparoscopy in early August to help determine the cause of infertility (still really don’t have many answers) and we were licensed as foster parents in late August. You can see my previous post titled, “Our First 3 Months in Foster Care” to read what our life looked like up until December 11th (hint: it was a lot of waiting and praying).

But December 11th, the Lord answered my prayer to be a mom, and we received Baby “I”, a 10-month old happy, precious, talkative little girl. We were doing some last minute Christmas shopping in World Market when we got the call from our case worker. She told us it was a possible placement and if we said yes, she would let us know that evening if we got placement or not. We said yes pretty quickly, and then we waited. We finished our shopping and even went to the grocery store for a few items. We got home and unloaded groceries. While Jason picked up plastic bags from our groceries, our caseworker called again. This time she said, “Are you ready? You got placement!”

Y’all, I have never seen Jason’s eyes get so big. I smiled as my heart raced uncontrollably. We were getting a baby. I was going to be a mom. She let us know that she would call us when she was on her way over. I’ve never cleaned my house so fast. I called my mom (who totally freaked out), texted our close friends and family and tried to tell my heart to be still. But before we did any of that, Jason and I sat on the couch and prayed. We prayed for the family that was experiencing loss and heartache, while we were experiencing excitement and joy. We knew we were only becoming parents because a family was broken and needed help. It’s not really how we wanted to become a mom and dad, but it was something we knew the Lord was calling us to. We prayed for the little girl coming into our home that we knew nothing about besides her name and age. We prayed for our hearts as we prepared to get attached to a baby that we would likely have to say “goodbye” to one day. We praised the Lord for His goodness and faithfulness, and thanked him for our caseworker. Not too long after that, we said “hello” to Baby I.

The last three weeks have gone by quickly. My mom kept Baby I while Jason and I worked the first week we had her. I wanted to get some hours in before I took off for two weeks to keep baby girl during the holidays. We found a daycare, took her to doctor visits, bought too many clothes and received meals from our people (the BEST people!!). We had so many friends and family members bring pajamas, diapers, socks, baby food and warm clothes for our girl. She didn’t come with much at all and the donated clothes I had in her size were all made for warmer weather. Jason and I truly got to experience people love on us so well and be the hands and feet of Jesus. What a gift!

We also started taking Baby I to family visits just 3 days after we got her placed in our home. What an experience. I’m so thankful to have friends who are foster parents that can walk me through the harder parts of foster care (s/o to Jaimie Havens and Elisabeth Conser!). Jaimie encouraged me to write a note to Baby I’s parents, letting them know we are loving on her and praying for them, which I did. I also included an email address that I created specifically to use with bio families (it doesn’t use my real name) and let mom and dad know they could email me for weekly updates. As we dropped Baby I off at her family visit, she cried. Then I cried. And Jason had to take me to Chick-Fil-A for milkshakes and fries. I had no idea it would be so hard, when all of this time, our goal is for reunification whenever possible. We know the best thing is for children to be with their biological families, again, whenever possible. We want that. So why was I crying?! Because I love that little girl. It had been 3 days. And I was already head-over-heels in love.

We’ve had two other family visits since then, including a longer one on Christmas day. She only cries sometimes, and is always happy to go home with us. We’ve had CPS in our home. We’ve had court over Zoom. But we’ve also had play time, bath time (every night because she loves it so much) and eat regular meals/snacks (as a registered dietitian, I was totally made for this). we try new table food (girl LOVES to eat!!) and have found joy in knocking over couch cushions. We’ve celebrated as she says “momma” (to really anything at this point) and has learned to clap. We watch in anticipation as she stands on her own, but hasn’t been brave enough yet to take her first steps. We read her bedtime stories and kiss her goodnight and tell her that her mom and dad love her and miss her so much. We pray for them with her every night, and ask that God watches over them.

I felt weird saying that I’m a mom. I didn’t birth this child. I haven’t adopted her. She’s just here for a little while, until mom and dad can take her home again. But I’ve come to embrace the name for myself. I am her mom for right now. I attend to every cry. I’m the one she comes to when it’s time to eat or when she’s scared (mainly of our robot vacuum). I change her diaper and rock her to sleep. And above all, I love her as if I had birthed her. I’m attached. What a privilege it is to say I’m her mom, for right now.

For the year 2020, my word was Rejoice. I wanted to rejoice in all circumstances. Looking back, the Lord helped me to be able to do that, or at least try. I rejoiced in the midst of infertility, because I saw the Lord working. I rejoiced as we celebrated 4 years of marriage, became licensed foster parents, got the COVID vaccine, received Baby I into our home, and so much more.

This year, for 2021, my word is Submit. I’ve been reminded, in the midst of interacting with Baby I’s bio family, that I’m a people pleaser. I want to always do the right thing and be liked. I’ve learned that bio families may not always like me. They may think I’m doing the wrong thing for their child because I change nap schedules, baby formulas and even the food their child eats. They may criticize me for giving the baby a pacifier or saying yes to the flu shot. And yes, some of those things happened with Baby I’s family. It hurt me. I cried hysterically knowing there was someone who didn’t like me; someone who wasn’t appreciative of the work I was doing – caring for their child. But when grace comes into the picture, I’m reminded that to this mom and dad, I’m a part of the “system”. The system that took their children away (for good reason). But that doesn’t make those parents any less of a mom and dad.

The Lord has reminded me that I don’t do this for them, I do this for the children. I do this because God has called me. I don’t do this for mom and dad to approve of me or say “Great job!” or even, “Thank you!”. I do this because God asked me to and I want to be obedient to Him. I want God to say, “Well done, good and faithful servant”.

I also know that Baby I probably won’t be in our home forever. I know other babies will come into our home that probably won’t be ours forever. I want to submit to the Lord’s plan for Jason and I as parents, and to the plan He has for every baby that we get attached to. I also want to be better at submitting to Jason as the head of our household.

My verse for this year is from Galatians 1:10: “For am I now seeking the approval of man, or of God? Or am I trying to please man? If I were still trying to please man, I would not be a servant of Christ.”

Parenting is hard. Foster parenting is harder. And I know the hardest is yet to come. But the Lord has called me to this, and He will therefore equip me to continue to do this. I know all of the heartache and the tears and the anger and the goodbyes will be worth it to know that Baby I will be in a home that was made better for her. We will love her forever.

Foster parenting has already changed me. I have grown and have been strengthened. Everything I experience will only make me a better mom to the babes I get to love on in the years to come. I pray the Lord helps me to submit to His will. I pray He helps me to seek His approval alone, no matter the criticism I receive from bio families. I pray He helps me to always give grace and love, and to forgive quickly and often.

Lord, I’m ready to submit.

A Bittersweet Goodbye

The Tube is Out!

5 years ago in 2015, just two days after getting engaged to Jason, I received a feeding tube. I was weighing in at just 95 pounds and couldn’t keep a shred of fat on my body to save my life (literally). I was devastated that I had worked so hard to gain weight and that it just wasn’t happening. I felt like a complete failure. But when I finally made the decision to say “yes” to the tube, the Lord filled me with peace.

Slowly but surely, I began to gain weight. The most I had weighed prior to the tube was about 105 pounds, but now I was weighing 110 pounds. I looked better, felt better and was much happier! Not only that, but I began to watch the Lord work in my life in ways I had not anticipated.

Because I was studying to become a registered dietitian when I got my tube placed, I already knew a little bit about feeding tubes. I understood how they worked. Then I tried about 5 different formulas and both bolus and pump feedings and understood even MORE about how feeding tubes worked (and didn’t work). Then the Cystic Fibrosis Foundation sent a team to Lubbock and filmed me for their Living Today, Adding Tomorrows video series (watch that here). That experience gave me new friends and new connections.

Not long after that, I started a new job with a Home Health company as their dietitian, teaching others how to use their feeding tubes for the first time. I learned SO much about feeding tubes during that time. Actually, I haven’t stopped teaching others about feeding tubes since!

When I started my job at UMC Cancer Center as their registered dietitian, I didn’t know just how many tube feeding educations I would get to do. I work with many of our head and neck and esophageal cancer patients, and because of their treatment regimens, many require the use of a feeding tube. I will say, not many of them say “yes” right away. And who can blame them? It took me about 6 months before I decided to get a tube after my dietitian brought it up to me. But what has been really cool is that I could literally pull my shirt up and say, “Look! I have one too.”

You should have seen the looks on their faces lol.

My patients get to ask me what it’s like to live with one, how they can feed themselves, and they even get to ask me about the process of getting one. And I get to tell them all about it and answer every single question because I’ve been there too. I even had one patient who decided against the feeding tube because he was scared and wasn’t sure how to use the tube. So I marched up to his hospital room with my supplies and showed him just how easy it is to do a bolus feed and do you know what? He changed his mind and got the tube. Today he is gaining weight and starting to eat by mouth a little more!!

I wouldn’t get to do this job as well as I have been without my feeding tube. It has given me so much and has allowed me to grow in my career more than I ever thought possible!

When Jason and I were talking about starting a family, I was thankful to have the tube so I could tube feed and not worry about losing weight during pregnancy and breast feeding. I’ve been thankful to have the opportunity to not stress about eating enough. I honestly thought I would have the feeding tube for years to come.

And then I started taking Trikafta in January of this year.

If you’ve been following my journey, you know Trikafta has been my miracle drug. My lung function jumped up to 110% 3 months ago, my weight increased, my energy skyrocketed and I no longer cough (more on this later). I was ravenous all day, every day. Nothing could satisfy me. I noticed I was gaining some weight, so I stopped tube feeding “just to see” what would happen. And then I never started back! That was early June 2020.

At my last appointment on November 18th, I was weighing 118 pounds and my doctor said, “Don’t come back to your next appointment with your feeding tube!” My eyes widened. And then I cried. Did I hear him correctly?! I asked if he was “for real”. And then I cried some more. Jason was a little hesitant. He wanted me to wait longer to take it out – “At least until next year” he said. Umm, that’s in a month. What difference is a month going to make? I decided to call my GI doctor and ask her opinion, so I called and left a message with her office right after my appointment.

When I didn’t hear back in 24 hours, I sent a message to her over the care portal. When I didn’t hear back by yesterday (the 24th), I called again and was told I would get a call back soon. Then last night, I go to change into my pajamas and noticed the site around my feeding tube was bleeding some. This usually means the balloon has popped. So I tested it and sure enough, it was ready to come out. Is that not perfect timing or what? I decided to give my GI doctor one more day to call me before I took it out. So I taped the tube in and went about my day.

All day long, my tube kept trying to pop out. My GI doctor never called me, so I made the decision to just take it out. So I sent her another message to let her know that I made the decision anyway. What’s really cool is that once you take a feeding tube out, it starts to close on its own within just an hour! I describe it like an ear piercing-if you leave the earring out too long, the hole will close. Isn’t that amazing? Sometimes the hole doesn’t close completely on its own, so if that happens, I’ll schedule a time with my GI doctor to get it surgically closed. But it’s officially OUT!

I am really, so excited about not having a feeding tube anymore. No more tube changes whenever it randomly decides to bust, no more IV pole hanging out in my room, no more ordering tube feeding supplies, etc. But it really did bring back all the feels. I would not be the woman I am today without having this tube. Not only that, but I wouldn’t be the dietitian I am today without it. It has helped grow me (literally) and shape me, and for that, I am so thankful.

I love looking back on my life and seeing all the cool things the Lord has done-how He has always worked on my behalf-even when I couldn’t see it. He knew this day would come. I’m so thankful for His sovereignty over my life. He is truly a very good God. I believed that in August of 2015, and I believe that even more today.

So now that I’ve updated you on the most exciting thing in my life recently, here are a couple more things you should know about:

The first thing is that my lung function last week had dropped to 102% (from the 110% from 3 months ago). This was surprising to me! I feel the same as I did and I still don’t cough. Additionally, I started back to working out consistently after my surgery. But my doctor asked if I would start doing breathing treatments again. He said he would be happy with me just doing Xopenex and Pulmozyme (two inhaled medications to help my lungs open up), as well as my Vest or any aerobic exercise (I’m doing the Vest every time and aerobic exercises sometimes as I really enjoy yoga/pilates and strength training). So far it is going well! I will be interested to see how my lungs respond when I go back to clinic in March.

The second thing is that we were not chosen as the adoptive parents for the legal risk placement. We are okay with that! Like I said in my last post, we are 100% trusting in the Lord’s plan. We have been added back to the emergency placement list and expect a call any day 🙂

I think that’s it! What a whirlwind it has been! I want to thank all of you for reading my posts for the last 7 years (!!!) and for always supporting me in all I do. I wouldn’t be here without you!

Back to doing breathing treatments!

Our First 3 Months Into Foster Care

I often feel like a race horse with blinders on-I can only see what’s in front of me and nothing else. I can’t see the crowd, who is coming up behind me, or even my rider. The only thing I can focus on is the finish line. Sometimes wearing the blinders feels like a wonderful opportunity – there is nothing to distract me from the task at hand and nothing to scare me away from crossing the finish line. But other times, the blinders inhibit me; I forget that there are other things going on around me-things I can’t see when I wear the blinders.

Jason and I have been licensed foster parents for almost 3 months now! We have spent the majority of that time at the top of “the list” for the 0-2 year age group, meaning we are the first ones to get a call from our agency when the need arises. So far, we have received 5 very different calls. The first one, we slept through. The second one was a possible placement for two little ones and ultimately, they did not need us.

The third phone call was for two little ones that would need travel to Amarillo (2 hours away from us) every week. With both Jason and I working, we knew that having two under two would already be a lot on our plate, and we could not add 4 hours of weekly travel to that.

The fourth phone call was for a little girl that we said yes to! It was very exciting…for about 5 minutes. What we didn’t realize was that even if we said “yes”, that doesn’t mean we will get chosen for the placement. There are 13 agencies in the Lubbock area that get the same phone calls that ours does. Unfortunately another family already said yes to her before we could. What an emotional roller coaster!

The fifth phone call we received was a couple of weeks ago for a legal risk placement. This means they are looking for an adoptive home to place the child in because parental rights are likely going to be, or have already been, terminated. Jason and I do ultimately want to do adopt at some point, so we said yes to being considered! Our caseworker submitted our home study (a long document that we filled out with everything about our lives and with answers to the most personal of questions) and a couple of pictures of us, and we are just waiting to hear back. The last we heard, they were still going through home studies. Our caseworker warned us that we may not be chosen for this child and that we shouldn’t take it personally. She said there will likely be several (maybe even hundreds) of families being considered. And so we wait. And while we wait, we have been taken off of the emergency placement call list in case we are chosen as this child’s adoptive family.

If you know me personally, you already know that I am not a patient person. I don’t like waiting. Not only that, but I loooove to be in control. Not being in control over a situation gives me anxiety. I tend to worry and fret about the “what ifs”. So you might be surprised to hear that foster care has changed me! Okay, maybe not foster care. But the Lord has sure done a number on my heart within the past few months, in preparation for what is to come in foster care, I’m sure.

Of course when we were actually waiting to get licensed, I was super impatient. We were told it would likely only take a couple of weeks…but it took about 2 months until we received our license. Then it took about a month for us to even receive our first phone call! But once the calls started to roll in, the patience set in. I’m no longer checking my phone every 30 minutes to make sure I don’t have a missed call, and I don’t fret when we haven’t heard from our caseworker. I’m just trusting in the Lord and His timing.

Honestly, it is really hard for me to explain the amount of peace I have with all of this-because I have never felt this way before. I always worry. I’m the kind of girl that must prepare for the worst possible case scenario, every time. Growing up with CF, I worried about my life expectancy and my ability to even have a future. So the fact that I am not one bit worried about when we will get a placement or who that child will be, is really quite extraordinary. If everything about foster care (or my life in general) were left up to me, I wouldn’t have any peace at all. So really, the only explanation is that this peace I am experiencing is from the Lord. So how did I get here?

Not too long ago, I started to realize that when I’m wearing blinders, like the race horse, I can’t see all the work the Lord is doing around me. I can’t see Him working on my behalf.

Jeremiah 29:11 says, “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope” (ESV).

At the beginning of the year, our church (Redeemer Lubbock) started a Bible reading plan together. We received a 260-day plan of 5 chapters to read per week and one memory verse from Psalm to memorize every week. A small group of girls and I started meeting every 1-2 weeks to talk about what we were reading and learning, and then our pastor would preach on one of the chapters we read during the week that following Sunday.

I’m definitely a checklist kind of girl. I really enjoy having a list of things to check off – it makes me feel more accomplished. So when we were literally given a checklist of chapters from the New Testament to read in a year, I worried that I would treat my time with the Lord as such-just another thing to check off. To be honest, some days it felt that way. But most days, I look forward to my time with the Lord. I wanted to open my bible and read more about Jesus and His time on earth. I was even excited about reading Revelation! I am confident that the only way I’m likely able to experience this peace in regards to foster care is because I am truly reading my bible every day (or listening to it via the Dwell app-highly recommend!!) and praying, asking the Lord to remove the blinders and to give me the peace that only He can give. Praise God for answered prayers!

I’ve learned that no matter the race I am running, the Lord is there-beside me, before me and even behind me.

“It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8 (ESV)

I know this blog is dedicated to my life living with CF. But to be honest, my health is so good right now thanks to Trikafta. And it’s because of this great health that I’m able to focus more on the things that matter to me-like caring for children who need a family to love on them. I have an appointment coming up in Fort Worth this week with my care team, so maybe my next post will be a health update. But until then, I’m praying the Lord gives you the same peace He has given me about whatever you’re going through in life.

A prayer to relinquish control:
Father, I have tried to control my life and even to control other people’s behavior to suit my purposes: forgive me. You are the King of my heart, one and only Sovereign, Lord of all. Thank you that I don’t have to be in control because YOU are. Thank you for your perfect leadership, for your omniscient command of every situation, and for loving us while you hold all things together. In the name of Jesus, Amen (https://www.crosswalk.com/faith/bible-study/how-the-bible-assures-us-that-god-is-in-control.html).

Infertility Answers

Sometimes I feel like people forget that Jason and I have infertility. No one really asks about it anymore, or asks how I’m doing or how I’m feeling about it. Which is fine-I totally get it! I’ve done the same thing with others. But now that I’m living it, it’s hard. We haven’t “moved on”, even if it seems like it because we are pursuing foster care. It’s still something we grieve every day. September of this year will officially mark one year since we started trying.

11 months ago, I had no idea this journey would be so hard. After I stopped taking Clomid in January to help me ovulate, we took a break from fertility treatments because I had lost a good amount of weight. I gained the weight back easily, but still wasn’t ready to start treatments back. It was just so emotional and very difficult. Unfortunately, once I stopped the Clomid, I started bleeding in the middle of my cycle for a few days. Then, it became I bled almost the entire month, with just a few days off. This is what had originally caused us to seek answers and how we found out I didn’t ovulate, meaning we had infertility. So I finally called my OB in April and he started me back on birth control just to control the bleeding. That was really hard on me because I had just hoped that we would become pregnant by accident, without us “trying” or being on a fertility treatment.

But these entire 11 months, all I’ve wanted is answers. Why don’t I ovulate? Was it because I was too thin? Did I not have enough weight on me? Was this my fault? I just wanted to know.

In January, my OB had suggested I make an appointment with a fertility specialist and then get a procedure done to check if I had endometriosis, polyps, or if my tubes were blocked. This would hopefully give us some answers for why I wasn’t ovulating. I decided to wait on the procedure-I wasn’t ready for that yet-but I went ahead and made an appointment with Dr. Phy (who came highly recommended to me). I’m still waiting for that appointment day to come as she was booked an entire year out! I decided to keep that January 2021 appointment so I could have time to figure out what I wanted.

Jason and I talked a few times about getting the procedure done. We weren’t sure how much it was going to cost us, since fertility treatments and procedures are not really covered by insurance. We decided that since we had already met our deductible and our max out of pocket, that we should go ahead and do the procedure. And if it wasn’t covered, depending on the price, we would still do it. So eventually, when I was ready, I called the surgery scheduler at Grace (where my OB is), as well as our insurance to determine what would be covered and how much this procedure would be if nothing was covered. It was confirmed that no, it would not be covered. This was going to be costly, but honestly, it was not as costly as I thought it would be! The procedure has to be done within days 7-11 of the start of a woman’s cycle, so I waited until the first day of my period to call and schedule it.

Well, the day of that procedure was yesterday, August 7.

August 6th (our 4th wedding anniversary), I spent the morning at Grace Clinic to get labs done and complete a pre-op appointment with my OB/surgeon, Dr. Burkholder (who also happened to deliver me as a baby). He explained the procedure to me, which consisted of a diagnostic laparoscopy (a small incision in my belly button and 1-2 other small incisions near my pelvic bone), a hysteroscopy and a chromotubation. The hysteroscopy would take pictures of my cervix, the laparoscopy would also take pictures and look for the polyps, endometriosis, etc, while also treating them if they existed, and the chromotubation is where he would insert dye into my fallopian tubes to see if they were blocked.

I then had to go to Grace Medical Center, where I would be having the outpatient procedure, to check in and get a COVID-19 test done (this was my first COVID test! I’m pretty sure it was negative as they never told me otherwise, lol). I got a call from Grace later that afternoon letting me know I was to arrive for my procedure the following morning at 6 AM. Yep, too early.

Jason and I woke up at 5:15 AM. I couldn’t have anything after midnight to eat or drink (not even water), so I was happy that the procedure was going to be early. We showed up and got checked in, and then we were taken to my hospital room on the Day Surgery floor. I had an IV placed, met with the anesthesiologist, OR nurse and Dr. Burkholder one more time. Jason stayed in the room while I was taken back to the OR around 7:45.

Waiting to go to the OR. IV was placed with just one stick! Woohoo!

This whole time, I was feeling pretty good! I was just a little nervous, but mainly glad to be getting it over with and ready to have answers. Dr. Burkholder told me I would be fine after the procedure and that I would likely only have a little pain in my abdomen. What I learned the morning of the procedure, was that I had to have a catheter placed in order to fully drain my bladder, and that I may have some irritation afterwards. I had never had a catheter placed before, so I made sure I was going to be asleep for that, and thankfully, I was.

Once the general anesthesia (propofol) was in me, I was out. The procedure took about 30 minutes after the catheter was placed and the OR nurses had prepped me. I woke up in the Post-Anesthesia Care Unit (PACU) in a LOT of pain. I wasn’t sure where the pain was coming from, but I was in tears. They gave me dilaudid and that really did the trick! I was feeling so good. Normally after having propofol (I was given this every time I had my feeding tube replaced), I am forgetful and would repeat things. But I was very aware of every conversation I had with the nurse who was taking care of me, that I didn’t repeat anything. I’m not really sure what was different this time. The nurse’s name was Mike and we talked about our work history and his family-he was really nice!

Soon, I was wheeled back to my room where Jason was waiting on me. He said the anesthesiologist had come by and let him know that I was awake and in a lot of pain, but that I had a high pain tolerance (what a compliment!). Dr. Burkholder had also come by with pictures that he took and explained everything to Jason. It turns out, I have endometriosis. There was a small patch that Dr. Burkholder was able to burn off. When he performed the chromotubation, he thought there was a small part of my right fallopian tube that gave some resistance, but the dye went through fine, so they were not blocked. I didn’t see Dr. Burkholder after the procedure, so I didn’t get to ask him my questions-does this mean I can come off of birth control and not bleed outside of my regular period? Can we start trying again? I assume yes, but I always like to be sure!

Since I had the catheter placed, I had to pee before I could be discharged home. When that had to happen, I realized they had placed a large pad “underneath” and I was also given some lovely, large underwear to wear, as I would have some bleeding. I was also pretty dizzy and nauseous, so they gave me a coke to sip on in the mean time. But it wasn’t long before I was in the car and Jason was driving me home.

When we arrived home, I started noticing more pain “down below” and found I couldn’t really sit down and be comfortable, so I immediately went to bed and laid down. I ended up sleeping on and off the entire day (which is why I’m up at 5 AM writing this, lol). The pain began to get worse-both down below and a little bit in my abdomen. They had given me some pain meds (Tramadol), and I was told I didn’t have to take it with food. Which was good, because I felt nauseous all day long and found I couldn’t eat much the entire day. In total, I had a Jell-O cup, a few Ritz crackers, and maybe 4 oz of coke. I got Chick-Fil-A soup delivered to me for lunch-I took one bite and thought I might throw up. I was able to eat a few bites of a baked potato for dinner, but that was all I had-I felt SO terrible all day.

At one point, I decided to get up and take a short walk to the living room (with Jason’s help-I was still dizzy and in so much pain). They told me walking would help with the bloating, “gross” feeling I would have. I also had some air pockets in my right shoulder/neck area that were hurting pretty badly, so I wanted to relieve that pain. I made it from our bedroom to a chair in the living room (about 20 feet). I sat down for a few minutes until I decided my “undercarriage” was too uncomfortable. I made it back into the bedroom before I realized I was going to throw up. Thankfully, they had given me a bag to do so and I had it in my hands within seconds. I didn’t get out of bed again for a while.

The only time I got out of bed the rest of the day was to pee. I dreaded needing to pee. It would burn so much, that I was in tears. I thought I would only have some irritation?! I really was not prepared for all of this. I was taking the tramadol about every 4-5 hours and never felt like it was helping with the pain. The pain in my abdomen seemed to only get worse, along with the pain in my shoulder. The pain “down below” stayed constant and never wavered. My parents came by and brought me a beautiful vase of Sunflowers and a sweet card, and I was able to FaceTime with Karli for a while as well. Since I had slept most of the day, I was finally ready for bed about 11PM. I took two doses of Melatonin to help me go to sleep, along with more Tramadol, hoping the pain would subside.

I did end up going to sleep, and then woke up about 3:15 AM feeling pretty good! I tried to stay as still as possible in case moving was going to cause me pain. I couldn’t go back to sleep, so I decided to write this blog post and here we are now. Currently, I’m still nauseated, and have some pain in my abdomen. The pain in my shoulder seems to be gone, as well as the uncomfortable feeling “down below”. I haven’t peed yet, so we will see how that goes later on.

This has truly been an adventure. Jason has been so incredibly sweet and compassionate, as he always is. He has helped me out of bed and helped me go to the bathroom every time. He has served me food and pills, and made sure the dogs didn’t bother me too much (they wanted to cuddle so bad, but didn’t know that I was hurting so much). He even did laundry for me and got blood out of my t-shirt that I had worn home from the hospital. I’m really thankful for him and love that we were able to celebrate four years of marriage the day before.

What’s crazy to me, is that I didn’t think I had any symptoms of endometriosis. It’s supposedly a disorder that can cause severe pain during a menstrual cycle, which I never really had. I always felt like I had the normal cramps, which eventually turned into back cramps (also a symptom). But I never considered it a severe pain (I guess I really do have a high pain tolerance?). I also never had heavy bleeding, but I did have the bleeding in between my periods, which is a symptom. Other symptoms are pain with intercourse, pain with bowel movements, infertility (of course), and fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods. Turns out, I have most of the symptoms and didn’t realize it.

Today I have permission to shower, so I’m hoping that will make me feel a little better. Please be praying for quick healing and that all pain and nausea would go away. I really need to eat today and drink more water. I have a post-op appointment with Dr. Burkholder six weeks from now and will ask him my questions then. I am SO GLAD this is over and I no longer have to stress about it. I’m even more thankful we have answers.

Jason and I aren’t sure if we want to pursue pregnancy any more. Especially after yesterday, I was like, “No thank you!”. We will continue to pray about this and ask that you pray for us as well. We are trusting the Lord with our future and know His timing is perfect. Speaking of that, we hope to be sharing more about our foster care journey soon! Thank you for reading this blog post, and know that if you’re struggling with infertility, I am here to talk anytime.

This was before all the “fun” stuff happened

Updates on My Health and Our Foster Care Journey

It’s hard to believe I haven’t written in over 5 months! With COVID-19, it seems like 2020 has already flown by (and thank goodness!). Jason and I have been very busy with paperwork, trainings and inspections as we prepare to be licensed foster parents! We are excited to say that we have completed everything, and are just waiting on our home study to be scheduled! We started this process in December 2019, so it has been a long six months to get here!

As far as Coronavirus goes, I had the privilege of starting to work from home the day after the first cases were confirmed in Lubbock. Since I am a healthcare worker, I wasn’t sure this would be possible. But I have great bosses that advocated for me and health. Normally, since I work at the UMC Cancer Center as their registered dietitian, I am in clinics and in our infusion center seeing patients. But at home, I would just call patients and could either email or mail them handouts. I was really thankful for all of the nurses, doctors, nurse practitioners and other healthcare providers I work with that were extremely supportive of my working from home, when they didn’t get to.

Thankfully, Jason was able to start working from home the same day I did. We both have our separate desks that allow us to have some time apart from each other so we can actually get some work done, lol. Poor Jason. I often would come into our bedroom, where his desk is, and bug him. Especially since he works all day and my hours were only 10 am – 3pm! I had to find things to keep me busy while he worked. I made sure to keep a routine and continued to exercise most days, read my bible and other books, do puzzles, FaceTime my family and watch Hulu/Netflix.

Currently, I just started back at the cancer center this past Thursday, which also happened to be the day I started my new hours! This past year was my last year teaching the health sciences program at Idalou High School so I could focus more on my patients at the cancer center. Now, instead of working part-time, I now work 30 hours at the cancer center. This allows me more time to focus on my patients and get work done, while also continuing to care for myself and have more time to spend with our foster children, when that time comes. We are all very happy with my new schedule, and the fact that I only have one job-haha! Jason is still working from home currently, and was glad for me to get back to work.

Now I want to get to the good stuff-what I really wanted to write this post about.

It’s been a while since I’ve written an update about my health! If you follow me on Facebook, you may remember my last health update that was posted on January 8th-the date of my last CF clinic visit in Fort Worth. My lung function was stable at 100%, but my weight had dropped well below my normal range and I was down to 105 pounds. It was scary and really hard, because we know that when someone with CF has a drop in weight, their lung function is sure to follow. The hard part about that was, I was doing everything I already knew how to do-tube feeding every night (and sometimes more during the day), eating all the high calorie foods and even exercising 4-5 days per week. I just didn’t have an appetite.

I’ve never liked nutrition supplements like Boost, Ensure or Scandi-Shake. I would drink Carnation Instant Breakfast, but it just doesn’t have a lot of calories or protein unless it’s mixed with ice cream, which I just didn’t have time for and got tired of pretty quickly. So my dietitian gave me some samples of a nutrition supplement that I had never heard of before, called Enu. I now drink it every morning for breakfast because it is so tasty! Honestly I’m so thankful for it!

Not only that, but I started the new “miracle drug” called Trikafta. It is a CFTR modulator therapy that is taken twice daily with high fat foods. Here is some information about Trikafta taken from the patient brochure itself, “CF is caused by mutations in the CF gene. These mutations lead to defects in a specific protein called the cystic fibrosis transmembrane conductance regulator (CFTR) protein. As a result of these defects, the CFTR proteins don’t work the way they should. The most common mutation is the F508del mutation (both of my mutations are this type).

Information taken from the patient brochure to show how Trikafta works.

Trikafta has been the medication that the entire CF community has been talking about in the past 6 months or so. One of the reasons why is because about 90% of the CF community has one copy of the Delta F508 mutation, meaning 90% of the CF population is eligible for Trikafta. With previous CFTR modulator therapies, only certain populations were eligible for them, so this is a big deal! Honestly though, I wasn’t too pumped to start taking it when it first came out. I had been on two other CFTR modulators before, both of which never really did me any good. But a friend of mine with CF (shout out to you, Alex!) really encouraged me to at least try it, because she could see a big difference, almost immediately! This gave me some hope. January 25, 2020 ended up being my first day on Trikafta. My hopes were to see an increase in my lung function and an increase in my weight, as many people have said that’s what they see on this drug.

I thought some people with CF who said they could tell a difference within just a few hours of taking Trikafta were crazy. And then I became one of the crazies.

I first noticed that I was coughing more and having shortness of breath, which many have called “the purge”. I’ve never really been one to cough a whole lot, or even cough up a lot of mucus. But I was! I even had to use my inhaler a few times a day, which I never have to do!

Previously, if I ever coughed up mucus, it was typically a light green to a dark green color (which indicates infection). Day 2 and 3 of Trikafta, I was coughing up CLEAR mucus. I have never coughed up clear mucus before. I was still coughing quite a bit and continuing to use my inhaler. Not only that (prepare yourself for the honesty you’re about to read), but mucus was coming out in my stools and I would often find it…uh… elsewhere, shall we say. I was shocked.

Day 4 of Trikafta, I’m no longer coughing during a work out. I could do a work out filled with cardio and weight-lifting and not cough AT ALL. I also gained two pounds and was up to 110 lbs at this point. Still coughing up clear mucus and continuing with “the purge”, but it’s not as much.

Day 5 of Trikafta, I gained two more pounds and was up to 112 lbs. I also noticed I was sleeping a lot better and not laying in bed for long periods of time in the morning. I also noticed an increase in the amount of energy I had during the day! I was really, really excited about this.

Day 6 of Trikafta, I noticed a HUGE increase in my appetite. I don’t normally have a great appetite, so it was pretty crazy. I ate the biggest breakfast, lunch and snack of my life this day-lol! My snacks actually started to look like mini-meals.

Day 7 of Trikafta: At this point, it has been 2 days since my last breathing treatment (oops, but definitely not normal for me). I didn’t do them because I was rushed, which happens sometimes! Normally, if I don’t do a breathing treatment, I feel tightness in my chest, cough a lot and feel like I need a breathing treatment. But just in these two days, I still felt really clear. I did a breathing treatment anyway on this day, but just didn’t feel like I needed it.

I stopped doing daily updates because I stopped having daily changes, but the positive changes still continued!

Day…14?? of Trikafta: Not coughing at all when I work out, or really ever. Also noticed that when I sweat, I no longer have salt crystals that form on my face (which was completely normal for me).

Day…21?? of Trikafta: Noticed a decrease in my appetite and food never sounds good anymore. This was the hardest to deal with because I love food so much and plus, I need to gain weight! I relied heavily on my Enu shakes, tube feeding and bean and cheese burritos.

March/April 2020 on Trikafta: I started having a lot of gastrointestinal issues. I had very loose and oily stools several times a day-like, guys… I couldn’t trust my farts. I know you think it’s funny now, but it sure wasn’t then. If this makes you umcomfortable, sorry boutcha. I talk about poop regularly in my profession so I really don’t care, haha! I talked to my dietitian, who said this was a normal side effect and we may just need to wait it out. Cool. Thankfully, my weight was stable! This side effect lasted for two whole months!! There have now been several days that I’ve gone without a breathing treatment and still feel great. But I felt guilty not having my doctor’s permission to do that, so I started back on them…but not consistently. I still felt great and wasn’t coughing AT ALL. Towards the middle of April, my appetite did eventually pick back up, thankfully.

May 27, 2020: I had my first CF clinic visit since starting Trikafta via Telehealth (4 months after starting Trikafta)! I took my lung function and weight at home. Lung function was stable at 100% and my weight was up to 118 lbs (that’s 13 lbs more than I weighed at my last visit in January)! It was truly a very exciting day and my dietitian was SO proud! I talked with my nurse practitioner about not doing breathing treatments and was very honest with her. She said I’m definitely not the only one not doing most of my treatments. She mentioned there is research in the works to see if this is a possibility for us in the future, however, there are not any current recommendations to say whether or not I should stop them. But…she said she can’t really make a case against me not doing my treatments if my lung function is good and stable, if I’m gaining weight and not coughing at all…so that’s where I’m at.

If you’ve been following my health updates for the past several years, you know how big of a deal this is. Breathing treatments are the things that have let me live a normal life, and I don’t “need” them anymore. It’s almost like I don’t have CF. I still take a lot of pills and take enzymes with all of my meals and snacks, but it’s truly not a big deal.

One of the things I have to make sure I do is take Trikafta with high fat meals/snacks. So in the morning, I take it with my Enu shake, but I was really struggling with what to take it with at night, because I honestly don’t eat a ton of high fat foods at night (the night dose needs to be 12 hours apart from the morning dose as well). So I started taking it with a shot of 2 oz of whipping cream-lol! But it’s 200 calories and 20 grams of fat so I am not complaining!!

One other thing I’ve noticed recently is hair growth- I have lots of tiny hairs that hair spray just can’t keep down!

So there it is-everything that’s been happening in my life since the beginning of the year, all wrapped up in this one blog post! If you’ve made it this far, you are a champ-for real! I hope that the next update I share with you involves Jason and I being licensed as foster parents! We are definitely praising God for Trikafta and my great health!

If you’d like to pray with us and for us, we are currently praying for a good caseworker, for our upcoming homestudy, for the children that the Lord will bring into our home, and for the families of these children that are broken and the situations that have led to these little ones coming into our care. Please pray for our hearts as we prepare to step into this brokenness!

If you have any questions, please reach out to me! Blessings to you all!

2020: A Year to Rejoice

I’ve been wanting to write this blog post for a few months now… but I wasn’t ready. My heart was not ready. But with the start of a new year, I’ve felt the Holy Spirit’s prompting to share.

In August 2018, Jason and I decided that we would prayerfully consider starting a family the next year, in August 2019. We prayed and talked with our families and close friends about our exciting decision. We prepared by talking to all of my doctors and getting the “okay” from everyone, which we did. We tested Jason for the CF gene to make sure we wouldn’t pass CF on to our child. Jason is negative for the gene, thankfully.

I also talked with other women with CF who have been pregnant to get their advice on how to prepare, what questions to ask, and how to best conceive. If you didn’t know, men with CF are infertile. Women, however, may be able to conceive. Actually, my physician assistant told me I may not have any trouble at all. But the truth is, women with CF can have a harder time conceiving due to thick cervical mucus-just like the rest of our mucus is thick in our body. If a woman wants to conceive, it’s best for her cervical mucus to be thin and slippery. So obviously, we do not have the ideal conditions. Not only that, but poor weight/ weight gain and malnutrition can make it difficult as well. Plus, we can have the same issues conceiving as women without CF. But, I had hope.

I met with a high-risk OBGYN for a pre-conception consult (recommended to me by a woman with CF), which went very well and he also gave me the green light. And before you ask, YES, I can be pregnant with a feeding tube! I worked hard to gain weight and got to my goal weight of 115 pounds that my doctor recommended.

Finally, August 2019 rolled around. However, Jason and I ultimately decided to wait one more month, so that if we got pregnant right away, I wouldn’t have to worry about getting a substitute for school, which would be stressful for me.

September 2019 came, and we felt at peace about our decision to start a family. My health was good, and there seemed to be no barriers. It was an exciting month!

Late September, I ended up making an appointment with my gynecologist due to having spotting and bleeding outside of my period, which was very abnormal for me. I had been on birth control for three years before stopping in April 2019 to prepare to conceive, so we knew this could be the cause. However, my doctor wanted to run some additional tests, just to be safe.

So the following week, I completed a transvaginal ultrasound (sounds fun, right?) and some blood work to test my progesterone levels. Progesterone levels must be tested on day 21 of a cycle to see if you ovulate.

The transvaginal ultrasound revealed a cyst on my left ovary, the size of a small orange. My progesterone levels came back as 1.12-they must be greater than 5 for me to ovulate. So it was determined that I have infertility, as I do not ovulate. I was heartbroken.

I was at work at the UMC Cancer Center when I found out, and immediately had to find a single-person bathroom so I could cry. I called Jason and told him before I called my mom. I spent the rest of the day in tears and praying that God would show me the positive side. The next few days, I mourned and asked God, “Why me?” I’ve asked him this before, several times, when going through a trial. I told God that it wasn’t fair. I already had CF, which made life difficult, but now this?! I had not expected to have any difficulty getting pregnant. We felt at peace and just assumed we wouldn’t have any issues.

I spent time reading the word, specifically, the book of Psalms, to gain understanding and encouragement from the Lord. I spoke to close friends and family that I knew I could trust to pray for Jason and I through this difficult time. I also spoke to a select few that have experienced or were going through the same thing that I was, which helped to make infertility not feel so isolating. But every day, I prayed that God would give us a baby.

We met with a fertility specialist not long after the diagnosis to discuss options. He told us that first, we would start with a fertility drug known as Clomid, to help me ovulate. It would be taken orally on days 3-7 of my cycle. I would then need to get labs done on day 21 to see if my progesterone levels increased, which would prove the clomid worked. If the progesterone levels were >5, then I would take a pregnancy test on day 32 of my cycle. If it was negative, or if my progesterone levels were less than 5, then I would have to get a shot of progesterone to initiate my period and, only if my progesterone levels were still low, I would re-start clomid at a higher dose on the next cycle. My doctor said that most women get pregnant on clomid within 4 months. I was so excited and hopeful! He told us of other possible tests we may have to have if we weren’t pregnant within 4 months. He also mentioned that he is not worried about the cyst as it will likely go away on its own.

After leaving that day, I thanked God for the first time. I recognized that so many couples try to conceive for months, even years before they receive an infertility diagnosis. But we went only one month. That is a HUGE blessing! The Lord knows I am the most impatient person on this planet and it would have driven me crazy to go that long without knowing. But many couples experience that-some I even know personally.

Month one on clomid was disappointing. My progesterone levels came back at .41-even lower than before going on clomid! I couldn’t believe it. The nurse that I talked to said it was uncommon for progesterone levels to go down, but said we would just increase the dose next month. My heart sank a little, but knew I wanted to press on.

Last month in November, month two on clomid, was a little less disappointing. My progesterone levels came back as .91-higher than October, but still less than my initial test. I just finished taking my third month’s dose of clomid, and will have my progesterone levels drawn on Monday, January 13th.

The truth is, I’m keeping my expectations low. I don’t want to be continually disappointed. I want to be able to find out the results, and if they aren’t ideal, then I can move past it and press on. I’ve been struggling with truly trusting the Lord and believing in His promises. But again, I’ve been reading through Psalms with a college girl that I mentor, and it has been so encouraging during this difficult season of my life.

I’ve read time and time again that God sees me and knows me, and He will deliver me. I read several times where David was crying out to God to save him from his trials and hard circumstances-trials that were a lot scarier than mine, might I add! And every time that David cried out to God, he ended his prayer with thanksgiving and rejoicing in who God was/is. He trusted God to hear him and deliver him. I asked myself if I trusted God in this way, and there were many times that I wanted to say “yes”, but I knew deep down that I didn’t really trust Him completely. So I became persistent with my time with the Lord and in prayer.

More recently, our church, Redeemer Church in Lubbock, announced we would be starting a church-wide Bible reading plan. This actually started yesterday, and will continue throughout the year. The plan is to read through the New Testament. So yesterday, Jason and I read through Luke 1.

Verses 5-25 of Luke 1 tell us about how the birth of John the Baptist was foretold. Zechariah and Elizabeth were older and Elizabeth was barren. This story sounds familiar to Abraham and Sarah’s…another reminder that we are not alone in our trials. Zechariah was told that he and Elizabeth would have a son, and they would name him John. But Zechariah responded in disbelief and he questioned the angel Gabriel that gave him this news. Because of Zechariah’s response, he was made mute until the birth of his son. Two of the key verses for me here, are verses 13 and 14, “But the angel said to him, “Do not be afraid, Zechariah, for your prayer has been heard and your wife Elizabeth will bear you a son, and you shall call his name John. And you will have joy and gladness, and many will rejoice at his birth,” (emphasis added).

I cried as I read the commentary in my ESV Gospel Transformation Study Bible, “This historical story addresses key heart issues. It is a story of human suffering and sadness, coming from the brokenness of infertility. Like Sarah and Abraham of old, Zechariah and Elizabeth are advanced in age but without children, even though they were righteous followers of God. This barrenness is a deep sadness for them and is even viewed as a reproach (an expression of disapproval or disappointment). Yet from the bird’s eye perspective that we are given, we learn that even in the midst of this decades-long trial for two godly people, God is working out a perfect plan of grace. He is using this couple’s barrenness and brokenness to show forth his miraculous power and to witness to the world that his final plan of redemption is now at hand in Jesus Christ. The story of this couple’s suffering turned to joy reminds us that in the pain of our own trials, our limited perspective is not able to grasp the good plans that our kind God is perfecting for us. We are called by this story to renew our active trust in God’s will, even through our veil of tears.” (emphasis added).

If you’re going through something similar, I know that brought tears to your eyes as it did mine. I felt the Holy Spirit prompting me, and knew God was asking me to renew my trust in Him and His timing. I have seen God’s faithfulness throughout my entire life. He has never failed me. Why would He fail me now?

I don’t know how long we will suffer with infertility. It could be decades-long like Zechariah and Elizabeth; it could be forever. Or, our suffering could be turned to joy in just a few months. But no matter what, I must trust in God’s way and in His timing. I know that His plans are so much better than mine ever could be.

If you remember from when Jason and I were engaged, I actually wrote a blog post announcing that we wouldn’t have biological children, but would likely foster/adopt. We still have hopes of doing that in our future. It’s possible, that it may be in our near future. Jason and I recently started the process of fostering/adopting with an agency in Lubbock, and we are SO excited. We have started the trainings and are slowly working through paper work. We are not in any rush.

Does this mean that we have given up hope on conceiving? Absolutely not. We are continuing with clomid and other tests until the Lord closes those doors for us. But we are pursuing fostering/adoption because we know the Lord has called us to this ministry. We would like to be able to do both, should the Lord allow us to do so.

My word for the year 2019 was contentment, and I feel confident that the Lord has pushed me so much and allowed me to grow in contentment in all aspects of my life. I’m ending the year content with where the Lord has Jason and I in our journey of starting a family.

As I was prayerfully considering my word for the new year 2020, the Lord brought to my attention that thanking Him in all situations was difficult for me. It took time for me to thank Him. So this year, my word is R E J O I C E. Recall verse 14 of Luke chapter 1 with me, “And you will have joy and gladness, and many will rejoice at his birth”.

I don’t know if the Lord will allow me to carry a baby in my womb. But I trust that God will give Jason and I a child in His timing and in His own way. And I rejoice, knowing God has a plan for us.

“But let all who take refuge in you rejoice; let them ever sing for joy, and spread your protection over them, that those who love your name may exult in you.” Psalm 5:11

“This is the day the Lord has made; let us rejoice and be glad in it.” Psalm 118:34

“The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.” Zephaniah 3:17

“…but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. ” Romans 5:3-5

“Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:4

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. ” 1 Thessalonians 5:16-17

“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith-more precious than gold that perishes though it is tested by fire-may be found to result in praise and glory and honor at the revelation of Jesus Christ. “1 Peter 1:6&7

Each of these verses has brought me hope and has reminded me of my purpose on earth-to glorify my heavenly Father through all that I go through, good or bad. My hope is that you are reminded of this same purpose. No matter your trial, the Lord has a plan for you and your life. We may not be able to see it now, but we don’t need to. We just need to trust in our mighty and powerful Lord and Savior. I’m not sure what I would do without the hope, joy and peace He gives me when I seek Him.

Now that I’ve shared my biggest trial of 2019, I want to share a few things that I have learned.

1. Show Up-I’m not the only one that has infertility. It is also possible to have children, and still have infertility. There are likely many women that you know that are going through something similar. It wasn’t until I opened up about my struggles that others sought me out and shared their stories with me (and I am so grateful to each of you). If someone you know is going through this and shares it with you-be their friend. Don’t offer advice. Don’t tell them to “just relax and it will happen”. Just be there. Ask them what they need. Pray for them-better yet, pray right there with them! And even after they have opened up, continue to check on them and love them. Infertility is lonely, and it’s easy to forget, because we continue to live our lives.
2. Don’t Be Afraid to Talk About It-Especially when someone you know is suffering, don’t be afraid to bring it up, unless they ask you not to. I wanted my friends to ask me how things were going, but over time, those questions stopped and I felt forgotten. I was reminded that the Lord does not forget, but it’s nice to have friends that aren’t afraid to speak up and love you well. Even if you don’t know what to say, tell them you don’t know. Just being there makes all the difference.
3. Everyone’s Story is Different-not all stories are the same. I found out about our infertility after just one month of trying. But like I mentioned earlier, many couples find out much later. Some never even receive a true cause of their infertility, which can make it really hard to understand why and how to treat it.
4. Listen and Love Well-Imagine if you were going through something similar-how would you want people to love you? What is that person’s love language? Can you bring them coffee or a gift? Can you schedule some quality time together? Maybe you just show up when they ask and cry or pray with them. Learn how they receive love and give it. Don’t forget to listen to them and don’t assume how they are feeling. Don’t correct their feelings or tell them not to feel a certain way.
5. Allow Them to Mourn-I wanted to desperately find the bright side of a hard situation, and while it is important to do that, some of the best advice I got from a couple of sweet friends was to give myself permission to mourn. I allowed myself to feel sad and heartbroken, but then I reminded myself of God’s promises and sought to find what I could be thankful for.
6. Don’t Forget About the Spouse-many people automatically seek out the woman who is experiencing infertility, but we forget to check on her spouse. Infertility affects them as well. They likely want to start a family just as much as she does. They may hide their emotions better than she does, but they need you too.

If you’ve made it through this far, you are a champ and I am so thankful for your time! It’s hard to share things like this and make it public, but I hope and pray that the Holy Spirit will use this post to remind you of who our God is and that He is always in control. Let’s be honest…I wish I was in control, but I am always reminded that I am forever grateful I’m not. I hope that you too, will press into the Lord and find refuge in His wings. He is a solid Rock for us that can provide unshakeable joy. I hope that we can all REJOICE in that truth.

3 Surgeons and a Steroid

It’s been a few days since my most recent clinic visit on June 5th. Life has been really busy, even with school being out! But, I’m finally taking time to write about life in the past few months and my clinic visit. I’ll start with the part of the title of this post that may be most concerning to some of you-the 3 surgeons.

You may or, may not, remember that I had to have my feeding tube replaced several times last year. I actually lost count, but I’m pretty sure it was 4 times. For some reason, the balloon that is inflated inside of my stomach to keep my feeding tube in my body kept bursting. Meaning, my feeding tube could not be kept inside. So, this meant scheduling a last minute trip to the endoscopy center, where I would fast the night before, then spend 3-4 hours at UMC getting a new tube and recovering before I could go home. It meant no driving or working-for myself or Jason.

That may not sound like a lot, but that’s 4 days that we were taking off of work without notice (as a teacher, this was really frustrating and HARD). 4 days of hard-earned PTO for Jason. 4 extra days out of our lives besides days we were driving to Fort Worth for my clinic visits, or days that we wanted to take a vacation. It became frustrating, and really annoying. So after the 3rd time it happened, I asked my GI doctor if there was something else that could be done. She said she thought that my current tube could be placed into my small intestine, instead of my stomach (where it currently is), and that a surgeon would have to place it.

So the 4th time my tube came out, we replaced it, and my GI doctor referred me to a local surgeon.

A couple of weeks went by, and I finally went in to see the first of three surgeons. Dr. D and I had a good, long conversation about why I wanted this tube in my jejunum (the 2nd portion of the small intestine). But, I became very disheartened when he told me that this couldn’t be done, as the balloon that keeps the feeding tube in the body, is the same diameter as the small intestine. Meaning, if he were to place it, it would obstruct my small intestine. So, he asked me to give him a couple of weeks to do some research and see if there were other options besides your typical J-tube.

Why do I not want a J-tube? J-tubes stick out several inches from the abdominal area. If Jason and I want to have kids in the future, this is not ideal, as it would be really easy for a child to accidentally pull the tube out, resulting in an ER visit to get the tube replaced.

So after my appointment with Dr. D, I went home and did my own research. After working with EPIC Medical Solutions, I consider myself as somewhat of an expert on feeding tubes. I know the different varieties, brands, issues, etc. So I knew that a low-profile (like my current tube) J-tube did not exist. But I still searched.

Eventually, I came across a friend of mine on YouTube. I won’t use her name here, but she has cystic fibrosis and a feeding tube. What I didn’t know, is that she has a low-profile J-tube. What?! I messaged her to get details.

She told me her surgeon did what is called a Roux-En-Y Jejunostomy. The short name: J pouch. If you google this, you won’t find much on it. Basically, it’s a surgery that can be done laparoscopically, and the surgeon creates a pouch with the jejunum for the balloon of the feeding tube to fit, without obstructing the small intestine.

THIS was my answer!

I called Dr. D’s office the next day and told his nurse about my discovery. She made an appointment for me to come in and talk with Dr. D.

Unfortunately, Dr. D had not heard of this surgery and therefore, would not perform it. So, he referred me to one of his colleagues, Dr. P.

I met with Dr. P, who primarily does bariatric surgeries. During our visit, he could not grasp the fact that I have the feeding tube because of my having CF. He kept thinking it was because of gastroparesis. Gastroparesis is delayed emptying of the stomach. I explained that I had never actually been diagnosed with this, but that I self-diagnosed a mild form of it due to symptoms that I have (I feel I have enough education to do this, since I’m an expert on the digestive system!). He also declined to do the surgery, but insisted I get a gastric emptying study done to confirm the diagnosis of gastroparesis. I accepted, and also requested a referral to another well-known surgeon in Lubbock, whom I had met before and liked.

I got the 90 minute gastric emptying study done just a few days before Christmas. I was sent to Covenant, where I ate eggs with a special dye and drank apple juice. I then laid on a table under an x-ray machine for 90 minutes. I listened to podcasts while the machine took pictures of my stomach every 10 minutes. It was the easiest medical test I’ve ever done!

The test results came back a few weeks later, showing that it was “abnormal”. That’s all I was told.

I then got my appointment with the 3rd surgeon, Dr. G, in March of this year. Dr. G didn’t like that I only got the 90 minute gastric emptying study done, instead of the 4 hour study. So, he sent me to complete the 4 hour study. Based on the results of that, we would talk about getting the surgery. Even though there was not a point to get the 4 hour study done, in my opinion, I obliged.

So, I spent 4 hours at UMC one Monday morning. I ate eggs with the special dye, toast, and drank water. I then laid on a table for 10 minutes, 5 times during the 4 hours. The test results came back normal, meaning I don’t have gastroparesis. However, I still have some of the mild symptoms-I get full quickly, but am hungry not long after eating; I am nauseas if I eat past fullness; I cannot tolerate much volume in my stomach, otherwise I get nauseated and vomit. So, I still consider myself to have a mild form of gastroparesis. I know my body better than any doctor!

Just a couple of weeks ago, I met with Dr. G again to schedule the surgery. Or so I thought. He ended up telling me that he wouldn’t do the surgery. The risks outweighed the benefits, in his opinion. He offered to refer me to someone else for a second opinion, but I declined and thanked him for his time.

I was done. 3 surgeons. 6 months. No surgery. No answers.

BUT. My current tube has lasted 6 months-that’s 3 months longer than any of the others have lasted. I think the Lord has shut this door, at least for now. And until then, I think he fixed the issue (whatever it was). For that, I am thankful!

Now, onto the steroid.

If you’ve read any of my previous posts, you know I struggle a lot with fatigue. It hasn’t let up. It got so bad, that my mom recommended I go see a hormone replacement specialist. We will call him Frank (not his real name). Frank is a nurse practitioner here in Lubbock. He sees patients for hormone replacement, and it’s a self-pay business, meaning he doesn’t take insurance.

I went to see him a month and a half ago, and I was wary. I explained that I am research-oriented, and I’m sensitive to all new medications. He explained the physiology behind hormones and what he does, so I decided to give him a chance.

I went and got labs done, which showed that my cortisol was elevated, which meant that my adrenal glands were working really hard to make it. After we got the results, Frank put me on Hydrocort-2.5 mg with breakfast, lunch and right before bed.

Just a couple of days after starting the hydrocort, I noticed a huge improvement in my fatigue. I wasn’t laying in bed for an hour before I could get up, I wasn’t too tired in the afternoon to work out, I didn’t need to nap as often-it was great!

I also noticed an increase in my appetite and noticed I started gaining weight! We’ll get back to that here in a second.

Fast forward 4 weeks later on June 5th, and I’m in Fort Worth for my CF clinic visit. I had already done labs and re-did my oral glucose tolerance tolerance in Lubbock just the week before (all of which came back normal), so all I had to do was talk with my team and do PFT’s. My weight was up from 111 pounds to 119 pounds-the most I’ve ever weighed in my life!! The dietitian didn’t even want to see me. LOL. My PFT was stable at 98%. My clinic just got a grant to have physical therapy (PT) come in during clinic visits, so I got to meet with a physical therapist for the first time, and I loved it! I know there are so many benefits to PT, but because I’m never hospitalized (Praise the Lord), I never get those benefits. So this was really cool!

Dr. Burk couldn’t be at clinic this week, so I saw a different doctor that I had never seen before. I can’t remember his name because it was difficult to pronounce and spell (lol), so we will call him Dr. C. Of course, my NP, Cyndi, was still there.

They asked what I had been up to-I explained why the J-tube surgery wasn’t happening. They asked about my lung function and if my coughing was at my baseline. Then, they asked about my fatigue. I told them about the hormone replacement nurse practitioner, and showed them the medication he had me on. Their eyes widened and they asked if it was long term. I told them I wasn’t sure, and asked why they were concerned.

“Hydrocort is a steroid.”

Wait, what?! I felt so stupid. I know meds. I’m required to know what certain medications do, as a registered dietitian. Hydrocort. Hydrocortisone…ohhhh. Crap. Steroids give you a great appetite. They make you gain weight. They also increase your chances of getting a lung infection. Cool cool cool.

I got emotional at the thought of my fatigue coming back. I’m getting emotional just writing about it now!

“But it works.” I said.

“I know it works. But you need to taper off of it.”

I was bummed. I became really discouraged as I realized that the weight gain likely wasn’t from me doing well, but from the steroid. What would happen if I got off it it? Would I lose all the weight?

I can’t win.

There hasn’t been anything else that has helped with my fatigue. Not the iron; nothing. I felt defeated.

A couple of days after my clinic visit, I went back to Frank and explained the situation to him. He told me to take it twice daily for 2 weeks, then once daily for 2 weeks, then just take one as needed when I noticed that my body needed it. I haven’t discussed if this is okay with my care team yet, but I will. I did tell Frank, that if I end up with a lung infection, I’m coming after him!

Other than my health, things are going well for Jason and I. I am really enjoying being off from teaching, but will go back for my second year in August. Until then, I still work part time at the Southwest Cancer Center at UMC and I LOVE it! I feel like I’ve finally found my niche. If you didn’t already know, Jason passed his professional engineering exam, and now only lacks one more year of experience to be considered a professional engineer. I am so proud of him!

Our best friends moved back to Lubbock from Round Rock, and we have had the pleasure of hosting them at our house the past month until they move into their new place. We have had so much fun with them, and we will be really sad when they move out! Thankfully, they will be just a 5 minute’s drive from us. Their dog, Gus, will be missed by Meredith and Leia!

If you’ve made it this far, hats off to you! Thank you for desiring to stay involved in my life. It means so much to have an amazing support system!