The Anderson Family: January 2018

WARNING: Longest post ever! Over the past few months, we have gotten a lot of questions about Dempsey's birth story and his health/time in the NICU. I wrote most of this post back when Dempsey was in the NICU but wasn't able to organize everything until things have settled down. That said, we have insight into a few areas regarding Dempsey that we didn't have at the time I wrote this. I will write a follow-up later with those new details. I tried to section this post out so you can read only what interests you! (I treated this post kind of like my journal for myself so it has details that most of you probably don't care about).

Infertility

Other than family and a few friends, most people don’t know much about our pregnancy journey. Nick and I decided that we wanted to grow our family in the spring of 2014. We didn’t expect to get pregnant right away since we were aware that it takes most couples some time but after a year of trying, we were feeling a bit discouraged. We moved to Colorado during the summer of 2015 and decided that once I got a job and figured out health insurance, we would go see a doctor about getting pregnant. In the meantime, we tried ovulation tests, ovulation apps, etc. We finally saw an OB that specializes in infertility at the beginning of 2016. We did several tests including one to check the shape of my uterus and to make sure there was nothing blocking my fallopian tubes (Hysterosalpingogram). All tests on Nick and myself came back normal. The next logical step was to try Clomid Fertility Treatment. We were informed that if we didn’t get pregnant after 4-5 months on Clomid, then it’s probably not the solution. With high hopes, we tried month 1 with Clomid… no baby. We tried months 2, 3, 4, and 5… no baby. Each time that we got a negative pregnancy test was really hard on us. After the fourth month, our OB started referring us to an infertility clinic as he explained that the next step would be artificial insemination… not exactly in the budget of a medical student. After month 5, we were extremely bummed and preparing for the possibility of insemination. As a last effort our OB said, “Let’s just try one more round of Clomid but this time, let’s double the dosage.” The evening before Nick’s 26th birthday, he asked me if I started my period yet since it was supposed to start the day before. I said no but told him I felt cramps coming on (I always feel cramps the night before I get my period)... I lied ;) because how cool would it be to find out that we were pregnant on Nick’s birthday?? The next morning, I woke up early to hang Nick’s birthday signs and make breakfast (birthday traditions) and take a pregnancy test. I had no problem waking up early since I had been waiting a few days to take this test and was super eager. I grabbed the test and went to the downstairs bathroom. Is that a line?? I can’t tell if that’s a line! After 3 years of trying, I finally saw a positive pregnancy test. I, of course, started bawling right there in the bathroom. I was able to keep my cool while Nick and I ate breakfast. When he started opening presents, I told him which presents to save for last. Here is the sweet video of Nick opening his final present:

My favorite video of all time! Soooo sweet

It's positive!

Sharing the news

Our OB was excited to learn that we were pregnant and I was pretty antsy leading up to our 8 week appointment. We wanted to wait to tell family until we knew everything was good with the baby. We told our parents on April fools day. Parents on both sides knew that we had been trying to get pregnant for a while and that we would likely need to go to an infertility clinic. We told them that we went for an initial appointment and that the bill was already astronomical (Nick had to do most of the acting, I would have started laughing). When they asked how much is was, we just handed them an envelope claiming it was the bill. I printed our address on the outside of the envelope with the infertility clinic’s logo, sealed it, and then ripped it open to make it look realistic (so sneaky). Instead of a bill, the paper inside showed an ultrasound picture with “April Fools! Grandbaby #13 on the way!” (or Grandbaby #5 on Nick’s side). We sent ultrasound pictures in the mail to siblings and a few close friends addressed to Aunt or Uncle [blank] to surprise them with the news.

A few blessings

While we were still living in Broomfield, I was able to see the OB that helped us get pregnant for the first few appointments but in April, we moved to Colorado Springs so we needed a new doctor. We are on Kaiser insurance so had to make sure our new OB was a doctor that was contracted through Kaiser. I wasn’t in a big hurry to find one since I had an appointment right before the move and had several weeks before the next recommended appointment. I sent an email to the Relief Society in our new ward asking for OB recommendations and got a steller review of a Dr. W from one of the women but unfortunately, he wasn’t on the list of doctors that I got from Kaiser (bummer). After a few weeks, I looked through a list and decided on an OB that was close by (the office had one doctor and a few nurse practitioners). But before being able to officially transfer my records to their office, I was experiencing some bleeding. Not insane amounts but enough for it to be concerning. And after having a hard time getting pregnant, I was worried every single day those first few months that I’d have a miscarriage. I was working from home and called my team lead to let him know I’d be MIA for some of the day while I tried to find a doctor to help me. Poor guy had to deal with a surprise call from me crying my eyes out and for the first time, hearing the news that I’m pregnant. (Side note: I’m the only female on a team of several web developers so I doubt this was something they were used to dealing with haha). The office of the OB that I had picked just a day before was NOT helpful at all and suggested that I go to the emergency room. I was freaking out so called Nick who was at the hospital in his surgery rotation (most of you know that Nick is a third year medical student). He mentioned what was going on to the surgeon that he was working with and right away he started telling Nick about an awesome OB that might be willing to talk to Nick about it and possibly see me. They tracked him down in the same hospital and without hesitation, the OB offered to see me that afternoon even if our insurance didn’t work out. He was just a great guy who wanted to make sure that the baby and I were okay. Though there was a decent amount of bleeding, he was able to see that we were both healthy for the time being after an ultrasound. It turned out that Kaiser didn’t give me the full list of approved OBs and the doctor that helped was on the list! And weirdly enough, this doctor turned out to be the same Dr. W who was recommended to me before! Nick and I quickly realized that the bleeding led us to our awesome OB and found that it was a huge blessing on so many levels. Not only is he a great doctor, but he had connections with other doctors who we ended up needing to see often due to our high-risk pregnancy (more details later) and he worked at a hospital with a NICU close to our home (more NICU details later). Had I gone with the OB I had originally picked, I might not have received the help I needed through the pregnancy with easy access to MFM doctors and I would have delivered at a hospital without a NICU and our baby would had to have been transferred to an associated NICU that was 30 min away (instead of 7 min- and we went back and forth to the NICU A LOT)! We definitely felt God’s hand in this. There were also a few members in our ward that helped us through our whole NICU experience- they will never know how grateful we are for them!

One other major blessing through all of this has been the fact that Nick is going to medical school here in Colorado, specifically Colorado Springs. During the whole medical school interview process, Nick interviewed at several schools in Texas that he really liked. Honestly, we would have gone to any of those schools over Colorado simply because they are cheaper than Colorado is, and the schools were good. Nick ended up being wait-listed at all of the schools in Texas, and we didn't hear back from any of them, which really frustrated him since he felt like he had really good interviews and that he would have enjoyed the schools. In hindsight, we really feel like it was divine intervention that we ended up in Colorado, since we have so much family here that has helped us in immeasurable ways throughout this difficult journey. Had we been anywhere else, this whole thing would have been even harder than it already has been. The fact that we are in Colorado Springs is a blessing as well because Nick's rotation schedule is different than what it would have been in Denver. He does all of his rotations longitudinally throughout the year, with a different specialty on every day of the week instead of block rotations where each rotation is done one at a time in several week blocks of time. Being in the longitudinal system has been advantageous because it means that making up the time he has missed is a lot less complicated and will ultimately take less time than it would have up in Denver.

Pregnancy

Early in my pregnancy, I had Placenta Previa (likely the cause of my bleeding mentioned before). It’s fairly common but they like to keep an eye on it throughout the pregnancy because if it continues to be present around the time of delivery, a c-section is required. Therefore, I had some extra ultrasounds scheduled with some specialists (MFM) to check up on it. Midway through my pregnancy, the ultrasound showed that the Previa had almost completely resolved however, our baby’s measurements caught their eye. I had a follow up with Dr. W after the ultrasound. He had me hold out my arms which I found kind of weird. After noting that I have long arms, he went on to tell me that our baby’s long arm and leg bones were both measuring small (several weeks behind). It was something he noticed before but it was even more noticeable in the most recent ultrasound. He started to explain that if both Nick and I were short and/or had short arms, he wouldn't have thought too much of it but both Nick and I are on the taller side (Nick is 6'2", I'm 5'7") so it raised a red flag. In the moment, I didn't really understand what he was saying. He warned that if I went home and Googled what that might mean, that my search would show that our baby probably has Down Syndrome. However, a measurement in our baby’s neck (taken at week 18) didn’t seem to point to Down Syndrome. He was hesitant to suggest what it might be without a follow-up but his best guess was Achondroplasia (dwarfism). The chance of two average height parents with no history of dwarfism is approximately 1 in 25,000 (0.004%). My head was spinning. He also explained that there was still a chance that the baby’s bones would catch up so he scheduled another growth appointment in 3 weeks with the MFM doctors to get a second opinion. Since I wasn't fully processing what he was telling me, I didn’t think to ask any questions and Nick was at school during that appointment. On my way home, I started thinking about all of the possibilities (Does our baby have Down Syndrome? Dwarfism? How will our boy’s life be different? Will we need to buy him a special bicycle? Will his social life be any different? What kind of physical challenges will he face? Will there be limitations to the sports he can play?) Needless to say, I was pretty overwhelmed, emotional, and surprised. To make it worse, I called Nick to let him know what Dr. W said, but he didn’t have much of a reaction to the news, just reassuring me that everything is fine and we have a healthy baby. I felt like the worst mom ever for worrying about anything besides having a healthy baby. It turned out that Nick just needed some time to process the news as well and it ended up being just as hard on him as it was on me. We had an emotional evening as we processed the news together. I guess the best way to describe our feelings was NOT disappointment, but just the realization that our son's life might not be what we expected. The next 3 weeks took forever and included a vicious cycle of worry and then feeling guilty about worrying about things other than our baby’s health. I received a priesthood blessing from Nick, his dad, and his brother and we were all overwhelmed with the same feeling: our little boy has the sweetest spirit and he was soooo excited to come to earth, even being fully aware of the physical challenges he might have.

Three weeks had passed and Nick and I nervously went to the appointment. I admit, I was really hoping that the measurements from last time were all a big mistake and we had nothing to worry about. The MFM doctor was extremely nice but she brought us the news we were hoping not to hear. Except this time not only were our son's long leg and arm bones measuring small, but essentially all bones and his stomach were measuring several weeks behind. Amazingly, his ribs and head were the only areas measuring in a normal range. (What a relief, considering those are the most important areas protecting the brain, heart, and lungs). Overall, he was less than the first percentile (<1%). Regardless, I was again pretty emotional (you are going to read that a lot). We had another blood test done to confirm Dempsey didn't have Down Syndrome (I'm still fighting insurance bills for that one). From that point on until Dempsey was born, we believed our sweet little boy had dwarfism and we started doing a lot of reading and research on dwarfism. We were so excited to meet him but it wasn't always easy. Shortly after the appointment that confirmed his small measurements, we went to an Anderson family reunion. We had Nick's dad update all of his siblings on our situation. When we arrived to the reunion a little late, we didn't say much but one of my sister-in-laws came and gave me a hug. Here comes the water works! Most of our immediate family shared tearful hugs (we weren't ready to tell extended family yet so I imagine that some of them were pretty confused if they happened to see our arrival). We felt so much love from family that day. Families on both sides were extremely great through the pregnancy and always kept Dempsey's health in their thoughts, prayers, and fasts. We are so grateful for family.

Unfortunately, this meant my pregnancy was considered "high-risk" and a group of 3 MFM doctors wanted to see me and Dempsey twice a week for ultrasounds until birth. And with my regular OB appointments, I was going to the doctor 2-4 times a week for several weeks! Luckily, my work was super flexible with my schedule. We learned that Dempsey's small measurements were also a result of Intrauterine Growth Restriction (basically, for whatever reason my body wasn't providing Dempsey with all of the nutrients he needed to grow). Interestingly, not every doctor we met with thought that Dempsey had Achondroplasia (he didn't show other physical signs of dwarfism like a protruding forehead or proportionally larger feet). In fact, we were told that if 10 specialist were to look at Dempsey's data, all of them would have a different theory about what was going on. Basically, we wouldn't know until he was born or even later (which turned out to be the case...). We were warned that at any given time, we could have an emergency delivery if one of these frequent Biophysical Profiles showed that the baby was in distress.

25 week baby bump

I got spoiled and got to see 3D images our my little boy twice a week!

My view twice a week for several weeks

Dempsey's Birth

On September 22, I had my last scheduled Biophysical Profile. Things appeared to be okay. That night, Nick and I drove to watch his cousins' undefeated high school football team play a game a few hours away. We got home and went to bed like any other night. I woke up early the next morning (4-5ish am) with my pajama bottoms drenched! It felt like I was peeing really slowly. I was freaking out and tried waking Nick. There was no way my water broke! I was just barely 33 weeks! At first, he thought I just peed my pants but it just kept coming and the fluid was clear and scentless. Sooo we called Nick's brother (who is in residency right now) and he told us to go to the hospital. I switched my pants and put on a pad (pointless- it was soaked in about 2 seconds) and we hurried to the hospital. Of course, I was planning on packing the hospital bag that Saturday so we weren't prepared at all. We also hadn't pre-registered at the hospital yet! When we arrived at labor and delivery, the woman at reception had us casually fill out some paperwork. She didn't realize I was leaving a big puddle on the floor while holding a soaked towel, but once Nick informed her that the carpet was soaked she realized what was happening and took me back to triage. I flooded triage! There was no doubt that my water broke! The nurses kept asking if I had Polyhydramnios (extra fluid)- I was always on the higher end with fluid measurements but nothing too crazy. After the nurse set up my IV, the doctor came in and explained the plan. After the water breaks, it increases the chance of infection to the baby so they didn't want to check my cervix and expose me and the baby to germs. The timeline for when the risk of infection outweighs the underdevelopment of the baby is 34 weeks. Therefore, the doctor wanted to try to prevent labor for another week to give our baby's lungs more time to develop. At the very least, he wanted to prevent labor for the next 48 hours since they gave me a steroid to help Dempsey's lungs that would take 2 days to kick in. Dempsey was on the smaller side as it is! They put me on magnesium which made me super lethargic and it was terrible! And since I was essentially a limp noodle, they had to put in a catheter... while I was contracting!! That was also terrible. While my catheter was being put in, Nick said he thought there was no way I was going to make it 2 days, let alone a week, before having the baby. I was hurting. But eventually, my contractions settled down. They got to the point where I was only having one an hour and couldn't even really feel them anymore. My parents and Nick's mom came to visit.

The next morning, Nick went home to get a few things to make our week-long stay at the hospital more comfortable. We thought we were going to have a relaxing day, watching the Broncos game. However during the night, the nurse noticed Dempsey's heart rate had dropped during some contractions so a Biophysical Profile was ordered for that morning. I had gone through so many biophysicals by that point that I didn't think anything of it. In fact, I was trying to chat with the tech while she was examining Dempsey but she didn't seem very social (I realize now that she was concerned but it's up to the doctor to read the results before I'm informed about what's going on). Without much of an explanation, the nurse rushes in and asks where my husband is and says he needs to get here ASAP. I called Nick, who luckily was in the elevator on his way up. When he entered the room, I was swarmed with nurses preparing me for an emergency c-section. He was in his Broncos jersey holding a bag of games and DVDs (haha), looking a bit frazzled. From the ultrasound, Dempsey had scored 0/8 and was showing signs of distress. They needed to get him out right now! They quickly rolled me out of the room and didn't let Nick come back for the birth since it was emergent. Poor guy was left alone in a matter of minutes, not knowing what was going on.

(*Side note from Nick: This was the worst, most frightening moment of my life! There was no time for them to explain to me why they were needing to do the surgery, and then I was just left alone in the room having a panic attack. I just called parents to tell them to come as soon as possible and then just prayed until a nurse came running and told me to come with her).

From top to bottom, the process was no longer than 10 min and we were told that the time from the start of the incision to Dempsey being out was only 30 seconds!! (Sadly, Dr. W was not on call so didn't deliver our little one). Before being put under, I remember them transferring me to a thin operating table and a nurse holding my hand while I was trembling. Meanwhile, a nurse came to get Nick so that he could get the first glimpse of our baby boy.

(*Nick again. So I went running down the hall with this nurse and came up on a big group of people wheeling Dempsey down the hall in a cart with somebody using a mask to breathe for him. They reassured me that he was OK, that he came out crying, and asked what his name was. I lost it at this point and turned into a blubbering idiot who couldn't connect two words. We got into his pod in the NICU and they transferred him to his isolette (incubator) and I finally got to touch him for the first time. After spending some time with Dempsey I went to check on Rachelle).

I guess that I didn't come out of the anesthesia very easily and they were about ready to roll me off to the ICU to be put on a ventilator since I wasn't waking up! Unfortunately, since the c-section happened so quick, I wasn't given an epidural or spinal or even pain medicine initially. I was just knocked out! I woke up to THE WORST PAIN IN MY LIFE. Nick describes me as "white-knuckled holding the sides of the bed, shaking." They were chasing my pain for a while (it felt like forever) and I was pushing the crap out of that little drug button they gave me. After the pain subsided a bit, they brought Nick and I back to see Dempsey. He was having trouble breathing and they were in the process of giving him Pulmonary Surfactant (a steroid to help his little lungs) when we got there. I honestly don't remember much from that first day. But I do remember getting to see my sweet little boy for the first time. We weren't allowed to hold him. We could only use 2 fingers through a hole in his isolette to touch him with a little pressure (no stroking or rubbing). Several family members came to visit (but again, I was pretty out of it). Our little Dempsey was just too excited to join us that he didn't want to wait another day. We were filled with joy (and slightly traumatized) that day!

DEMPSEY Q ANDERSON

09.24.17 | 3 lbs 7 oz | 16 in

Hanging out in our first hospital room

First ever picture of Dempsey

NICU | Part 1

Dempsey's first stay in the NICU was from September 24 - Nov 9 (his due date). He started in an isolette that controlled his temperature. For breathing, he needed surfactant (mentioned before) and a CPAP ventilator. Though he was on the smaller side, the doctors no longer thought he had Achondroplasia from a visual examination. However quickly after birth, the Neonatologist noticed several unique things about Dempsey (I'll get to that a little later). There is no set time that each baby needs to stay in the NICU. Every baby develops at their own pace but they typically come home around their due date plus or minus 2 weeks. The goal was to get Dempsey eating and breathing on his own (and gaining weight).

Day 2 was extremely overwhelming. I was instructed to do a bunch of things that I couldn't do on my own because I was recovering from my c-section (take a shower to get the gauze off my incision so that it can air out, start pumping, etc) and at the same time Dempsey was getting a PIC line placed and Nick was with him for that. It took much longer to add the PIC than it typically takes. Dempsey's little veins were making it difficult and they had to prick him several times. Poor little guy was covered in pricks and bruises. Meanwhile, I still had an IV in and needed to start pumping so that Dempsey would have milk. My first attempt at pumping was a disaster. While trying to adjust the pump settings and hold the pump pieces in place with one arm, my IV got rubbed the wrong way and poked out of the vein. I was low on iron so they were trying to give me extra iron through the IV at the time which is a dark brown color. My forearm started filling up with brown iron. I called the nurse in tears and she removed the IV and flushed my arm (which is still discolored from the iron to this day). We quickly realized that we would need more help so we called my mama (who has been so much help with everything)!

The NICU is open essentially around the clock so we were able to go visit Dempsey whenever we wanted. Nick and I have learned A LOT about the NICU. We learned how to read the monitors and the purpose of most of the machines. As most babies do, Dempsey dropped some weight on day 2 (to just under 3 lbs). After a few days, Dempsey was able to come off the CPAP ventilator and was switched to a Vapotherm which meant that we finally got to hold him! He was so sweet and so little! The first several times holding him were actually pretty nerve wracking. He had a feeding tube (through his mouth at first, later moved to his nose), heavy nasal cannula, several leads attached to his body, a pulse oximeter on his foot, an IV, and a sticky on his chest that checked his temperature in the isolette. Nick and I were the only ones allowed to hold him for a while.

The days in the NICU were a roller coaster! He would have several days where he was making a lot of progress and then he'd have days where he was frequently dropping oxygen levels and heart rate (Bradycardia). He would be gaining weight and learning to eat and then would lose weight several days in a row and eat nothing on his own. We were just so excited to bring him home and snuggle him in the place we are most comfortable so when he would regress, it was super disappointing. The thing that I didn't anticipate was constantly feeling guilty any moment that we couldn't be at the hospital with him. It also got hard when Nick went back to school for several weeks. We would spend his only free time in the evenings at the hospital with Dempsey which was especially exhausting for Nick. There was a particularly bad week when nothing seemed to be going right. Dempsey wasn't developing as the doctors and nurses would have expected. He rarely opened his eyes and when he did, they were just tiny slits. Sight is sooo important for the development of an infant (they respond to what they can see, learn about their surroundings, and reach for things). He also wasn't feeding like he should have. Other preemies his age were nippling most of their feedings at this time (nippling = drinking from a bottle or from the breast). Dempsey was not nippling anywhere close to the expected amount for his gestational age, instead he was getting most of his food from a feeding tube. His breathing was going up and down as well. They kept attempting to get him off the higher pressure Vapotherm to a normal nasal cannula but within the first hour, his sats would tank. Nick and I were feeling super discouraged. The NICU docs decided to loop in a Pediatric Neurologist to look at his brain development. They did an MRI and EEG to check the anatomy and functionality of Dempsey's brain. According the the Neurologist, Dempsey's brain was premature, appearing 3-4 weeks behind his gestational age. That would explain some of the things he was struggling with (for example, a baby 3-4 younger than Dempsey would not know how to feed). Unfortunately, the brain is so complex that he wasn't able to tell us what that means for Dempsey's future. (Would his brain maturity always be proportionally behind or would he eventually catch up)? He informed us that we might expect that Dempsey won't walk or talk as quickly as most kids. We were instructed to follow up with a Neurologist after Dempsey gets released.

Images of Dempsey's EEG

I mentioned before that Dempsey was born with some unique attributes. Here is a high-level list of the main challenges he faced in the NICU, in addition to some of those unique features:

1. His small size- Even smaller than a typical 33 week preemie (he was still under the 10th percentile to other 33 week preemies the whole time he was in the NICU). Dempsey's body and limbs measured more around the size of a 29 or 30 weeker.

2. He has a Simian Crease in both hands. This single crease is most typically found in people with Down Syndrome but not always the case.

3. Sacral Dimples/Creases- Dempsey also got a spinal MRI done since his sacral dimples turned into sacral creases. The doctor was concerned that this might indicate a tethered cord but the results came back normal- phew! Dempsey's butt-crack actually splits into two creases at the top, so it looks like a "Y". Fitting since he was born into a BYU household!

4. Hypospadias- His urinary opening is not at the usual location on the head of the penis. He is going to need a surgery once he gets a little bigger to relocate the urinary opening. We will follow-up with a Pediatric Urologist around 6 months to see if he's big enough to get that fixed. Because of this, he hasn't been circumcised yet (they will do it during the surgery).

5. Brain Maturity- MRI & EEG showed his brain is 3-4 weeks behind. We don't if his brain maturity will always be proportionally behind or if it will catch up.

6. Large soft spot and extra fluid- Ever since he was born, Dempsey has had an extra large fontanelle. Turns out he has extra fluid on the outside of the membrane of his brain between the scull.

7. Heart murmurs

8. He rarely opens his eyes- He saw a pediatric Ophthalmologist while in the NICU because of this. It's hard to tell if further action is needed because he is so young. We have a follow-up around 3-4 months. The nurses got a kick out of him trying so hard to open his eyes though! His eyebrows would be all the way up to his hairline!

9. Feeding Issues

10. Reflux (More on this later)

A lot of these features led Dempsey's doctors to believe that he may have some sort of genetic syndrome. While in the NICU, they performed a Chromosomal Microarray which tests for some of the most common syndromes, including Down Syndrome. It came back negative. If he does have a Syndrome it will be up to the Geneticist to diagnose him. The Neonatologist and his Pediatrician have both decided not to take an x-ray of his bones to investigate measurements further. They believe this is something the Geneticist will want to do and they don't want to expose him to extra radiation. We are looking forward to the Genetics appointment more than anything! Maybe we will start to get some answers or even learn that Dempsey doesn't have a syndrome and just has some special features!

Shortly after one of the worst weeks, Dempsey turned a corner super quick and was ready to come home right on time for his due date! They were able to send him home on a low flow oxygen tank since he still needed some help breathing. Dempsey had several really amazing nurses and doctors that we are so grateful for! We got to spend a night at the hospital with him before bringing him home (we didn't get a wink of sleep that night). He came home on Nov 9th, 2017 :) Dempsey has appointments with his Pediatrician, Neurology, Urology, Cardiology, Physical Therapy, GI, & Ophthalmology! Busy boy (and mama)!

Dempsey with the CPAP ventilator

So tragic- look at those ribs!

Under the bili lights, showing perspective to Nick

NICU | Part 2

The morning after our first night at home was the worst. We were then on 2 nights with little to no sleep. I set Dempsey down in his little rocker so that I could sit down for a minute. A few seconds later, I looked over and saw him bright blue and not breathing. He had thick foamy milk coming out of his nose and mouth. His airway was completely blocked and he didn't make a single sound when it happened. I grabbed him and started screaming- he was completely limp. Nick, who was taking his turn to sleep next to me woke up right away and started helping. Let me tell ya, he was way cooler under the pressure than I was that time. Nick started to clear Dempsey's airway while I was just crying and yelling "He's blue, he's blue, he's blue". I snapped out of it eventually and ran around the corner to turn his oxygen up. We had to stimulate him to get him to breath again. From that point on, we were both sooo paranoid. We didn't want to leave Dempsey for a second without watching him. We had to quickly clean up and take Dempsey to his first appointment with the Pediatrician (his Pediatrician is AMAZING by the way). We had a long meeting with her to go over his whole history and we brought up what had happened that morning. She told us that if it happened again that we need to give her office a call right away.

The next day, I was holding Dempsey and yet again, he severely refluxed. Milk came through his nose but I was able to catch it before he turned blue. Because it wasn't as bad as his first episode, we didn't call the doctor. I rearranged the living room for the night so that the couch where I would sleep lined up with his crib. We dreaded the nighttime. Before bed, Nick and I brought Dempsey to his changing table to change his diaper. He had the worst episode of them all. Large amounts of milk came through his nose and mouth, he went limp and turned blue. This time his eyes were as wide as we had every seen them, he was so scared. After we cleared his airway and got him breathing again, Nick called the doctor's office and we were instructed to bring him to the emergency room immediately. Around 4 in the morning, Dempsey was re-admitted to the NICU (this was now night 4 of no sleep and we were complete zombies). Within a half an hour of being hooked back up to all of the NICU machines, he had another reflux episode and now we were able to see exactly what he was going through. His oxygen saturation levels were below 50% and his heart rate dropped to the 30's (and he typically had a rather high heart rate- it was normal for him to spike over 200 during diaper changes)! Without intervention, he could have died. Nick and I had to just stand there while the nurse revived him. They were not going to let him go home like this. The nurses pretty much told us how horrible we looked so they arranged for us to get a few hours of sleep in a labor and delivery room down the hall.

Dempsey's second stay in the NICU was little over 3 weeks and Nick took some time off of school. The doctors were trying to determine what was causing this severe reflux. Not only were the episodes preventing him from breathing, but Dempsey was also in a lot of pain. Because of Dempsey's prematurity and size, we were fortifying my breast milk with extra calories to help him grow. During his first stay in the NICU, the fortifier that was used was a liquid. This liquid is extremely expensive and hard to come by so the hospital likes to transition babies to a powered version of the fortifier before being sent home. This was the only notable change so we all suspected the reflux had to do with an intolerance to the powder. Over the course of his second stay at the NICU, we tried so many combinations of milk and fortifier. It got to the point where Dempsey was not even feeding on his own again and they had to put the feeding tube back. The nurses stopped putting clothes on him because he was refluxing so much (even when fed through the tube). In the second week, he had another terrible episode during the night. We woke up to a call with the news. During this episode, he wasn't able to start breathing on his own with just stimulation so they had to bag him. (We heard that the night nurse assigned to him was pretty shooken up about it so I can't imagine how I would have handled it if I was there). They decided to give him a break from feeding and put in an IV for nutrients. He did not like going hungry!

From there, a nurse suggested that maybe it wasn't the fortifier that was causing the issue but that it could be my breast milk, the doctor agreed. Dempsey was around the age that he could develop a milk protein allergy. So we switched him to a hypoallergenic formula and started him on reflux medication for the pain. This combination did seem to help quite a bit. He was in less pain, and throwing up a little less (he was still throwing up much more than a typical baby, but the consistency of the refluxed milk was a lot less thick and foamy than before). I started talking to hospital dietitians about cutting dairy and soy from my diet so that I could continue breast feeding him for some of his feedings (he was allowed 2 unfortified feedings per day). After several days on this new diet, Dempsey was sent home a second time right on time for the Christmas season! (Though he spent Thanksgiving in the NICU). We were sooo scared to bring Dempsey home this time around (the first time, we couldn't wait to get him out of there!). I honestly think there was a level of PTSD for me. With a lot of help from family, Nick and I keep an eye on Dempsey at all hours by taking shifts (yes, it's as exhausting as it sounds). When we brought Dempsey home the first time, I thought it had been a pretty rough experience and if I had known that in the future I would see my baby blue as often as I did, I don't think I would have thought that we'd be able to make it through it. But we did. I know that others go through challenges even harder than what we faced and I know that we were blessed in so many ways. We love having Dempsey home and the happy sweet spirit he brings! He is our world now and we love him so so so much!

*Nick again. My intention isn't to be a Debbie Downer here, but the reality of this whole experience is that it has been overwhelmingly difficult. I feel that if nothing else, we have learned to be a little more open minded to other people who are going through different challenges that we might not have perceived as difficult. I never knew how scary, draining, and isolating something like this could be. A common thought that I've had through all of this is that while we try to be positive and optimistic through trials, the reality is that life is hard, and sometimes just making it to the next day is all you can do. By no means have we reacted perfectly to this challenge, or taken it in stride and still excelled in life. It's felt more like we've been crawling along the ground barely surviving more often than not. But we're both surprised that we've made it this far, so we'll take that as a win. We appreciate all of the love, prayers, and thoughtful messages we've received through all of this, and we feel incredibly blessed to be surrounded by amazing people in our lives. We can't wait to see all of the things that Dempsey goes on to accomplish in his life, and we feel so humbled and blessed that he was sent to us to be his parents. With all of the difficulties he's had so far, he must be a much more valiant spirit than I am, and we love our little fighter!