I knew going into fertility treatments that pregnancy would be hard. But I had underestimated how hard it would actually be. I started out pregnancy exhausted and beat just from the toll the months of fertility treatments had taken on my body. Then the morning sickness kicked in around 8 weeks. Everyone kept saying I should feel better around 12-15 weeks, but I never did. The doctors prescribed me Zofran to try to help with me keep something down, but that just made me sick too. So that was the beginning of the pregnancy fun.
At 15 weeks we were so excited to find out if Baby Lowell was going to be a boy or a girl! So we went to Fetal Fotos to find out early. There we learned a baby BOY was coming our way! We were so thrilled and it was so fun to see our little guy moving all around and to get some 3D pictures. Everything at this ultrasound looked normal and so far it seemed to be a normal pregnancy.
Around 20 weeks I was still feeling deathly ill. I was trying my best to stay hydrated, but I was still so nauseous and having a hard time eating. I went in for my 20 week ultrasound appointment and I was extremely dehydrated. They found that my body was not absorbing nutrients. They sent me over to the infusion center to get IV fluids. I continued those 3 times per week for several months. I also stuck to a strict gatorade diet to get as much hydration as possible. At the 20 week ultrasound all of the baby’s measurements and testing came back great and we were officially half way done!
After 20 weeks my body started taking pregnancy in a different direction. I have type 1 diabetes that has always been very well controlled, but by 20 weeks my body started becoming insulin resistant (
which is very common in diabetic moms). At this point I was sending in my blood sugars every few days to my diabetes doctors and making daily changes to my insulin intake.
Around 25 weeks I began to feel very big and uncomfortable. I also began having “dizzy spells.” I would be right in the middle of something, and I would get super dizzy and need to lay on the floor to keep from passing out. Around this point of pregnancy I became pretty immobile due to the fact that I couldn’t spend more than about 5 minutes upright before I would need to sit back down and get ahold of my barrings. This all seemed to be a result of my blood pressure dropping. Because it was happening so frequently and because of my crazy symptoms, the doctors wanted to monitor my heart with a halter monitor. I wore the monitor and tracked all of my symptoms over a few days. The results came back that the baby was cutting off my blood flow to my heart, dropping my heart rate, and then causing my blood pressure to drop extremely low.
28 weeks was when everything started falling apart. I felt like this kid was trying to kill me from the inside out. I went in for my 28 week ultrasound and the doctors began noticing abnormalities. The ultrasound tech didn’t really have much to say about the ultrasound other than my amniotic fluid levels were very high and that the doctor would be in to meet with me soon. I didn’t really think anything of it because everything with the baby had been completely normal every other time, it seemed to just be me having trouble with the pregnancy. The doctor shortly came in and he was very stern and to the point. He said that he wanted to go over the baby’s measurements with me. He pointed out that the baby’s head and torso were measuring around 30 weeks (which was normal for a diabetic mom, plus my husband has a huge head) and that the baby’s arms and legs were only measuring around 20 weeks (almost 10 weeks behind where they should be). He didn’t really say what this meant, only that it was concerning. He explained to me that our baby had a definite form of skeletal dysplasia. At this point I was still thinking everything was fine. He said that he suspected that the baby had achondroplasia (I had never heard the term) but that he had never seen it before, and there was no way to know for sure without further testing. At this point the fact that there was a confirmed problem with my baby was beginning to register. I asked the doctor what kind of testing we needed to do to find out. He told me we could do an amniocentesis test that could confirm the achondroplasia, but that there were also over 200 other kinds of skeletal dysplasias. So the test could very well come back negative and we would have no idea what was going on. He then informed me that numerous forms of skeletal dysplasias are fatal and that there was a chance that the baby would not survive after birth and that we really would not even be able to know exactly what we were dealing with until after the delivery. So he also gave me the option to forgo testing and just continue with my pregnancy as normal and come what may after delivery. At that point I opted to run all of the tests possible to find out exactly what was going on. The phrase “this could be fatal” was the only thing that was registering in my head. The doctor left the room to let the nurse know to prepare for the amnio, and also to inform a genetic counselor to come meet with me.
At this point my head was spinning. My sister Kenzley had thankfully came to the appointment with me, but because of the length of this unexpected discovery at the ultrasound appointment, she was needing to leave shortly to make it to another appointment. When the doctor left the room we basically just looked at each other and said “what just happened?”
I immediately took out my phone and typed in the word ACHONDROPLASIA. All sorts of scary images popped up and there was one word that I kept seeing that I did recognize: DWARFISM. Not once did the doctor every say the word dwarfism. Maybe if he had I would have know what he was talking about. And maybe then I would have started crying and the panic would set in. At that time the genetic counselor came in. She was a young girl with a large packet of papers. She came right in and asked how I was doing. I said I was fine. Honestly I was just in shock. I didn’t know what was even happening. She handed me a bunch of paperwork and told me that she would help to set us up with a geneticist to help answer questions about the diagnosis. I asked if she had ever seen this or knew anything about it, and her answer was pretty vague and that she didn’t really know much about it other that it can cause numerous problems. The doctor then interrupted ready to do the amnio and my sister then had to leave. The genetic counselor left and told me she would make some calls to set us up with the geneticist and would find someone who could answer questions for us. At this point all I was thinking was that I didn’t even know what questions to ask. The doctor warned me that there were several risks associated with doing an amnio and because of how much fluid I had it could very well put me into labor immediately. I didn’t care at that point. He also said it would probably give me some relief to drain some of the fluid, but that it would just come back in the next few days. He did another ultrasound to make sure the baby wasn’t in the way of the large needle he needed to stick in to get the fluid out. The second the needle punctured my uterus strong contractions immediately began. The pain from the contractions were all that I really felt, the needle part didn’t really seem to be a part of the pain. Once he pulled the needle back out, the contractions lessened, but they did continue on and off for several hours after. They had me stay at the office about an hour after the amnio to monitor me and to make sure we were both stable. At this point I sent out a mass text to my family to inform them that the ultrasound didn’t go good, and I also called Tommy and asked him to meet me at the hospital to drive me to my car which was on the complete opposite side of the hospital. I knew there was no way I would be able to make it alone to my car because of my blood pressure, the contractions and the chaos of what had just happened. The doctor said it would take about a week to get the amnio results back.
I was able to hold it together until Tommy got there. Once he arrived I completely lost it. It’s even hard to revisit those feelings I was feeling at that time just writing this. I completely shut down and felt and sudden disconnect from my pregnancy. I fully expected the worse case scenario and did not want to continue to be pregnant. I was so sick, constantly throwing up, never even feeling remotely good, and now my baby was probably not even going to live after delivery. Tommy just kept telling me the doctors had made a mistake. That once we got the results back we would see that they were just wrong because everyone in his family has large head measurements. Tommy was the rock during that long hard week. I cried pretty much non-stop throughout the week and I couldn’t understand why this devastating news wasn’t even seeming to phase Tommy. We decided to withhold our news from our friends and family until we got the results back. It was so hard to not even know what was actually going on or even what to anticipate for the rest of this pregnancy and even our future baby. Everyone we know knew we were so happy we were finally pregnant with this baby we had waited for for so long, so naturally everyone’s first question to us was “how is the baby?” During this week I stayed in the house depressed and not communicating with anyone besides immediate family, but Tommy went out and had to lie to friends when they would ask how things were going. This was so hard.
At the end of that week I was so anxious to get my amnio results back I called my doctors office just to check if there was a chance they were already in. I was to the point I was having full-on panic attacks every time my phone would even ring anticipating the results. They transferred me to the genetics department because they said they would be the ones to relay the results. I left them a message, but didn’t expect to hear anything until the beginning of the next week. At this point I had been praying that the test would come back positive. I had been doing constant research (what little info I could actually find) and I was praying that our baby did have achondroplasia. It seemed like individuals with achondroplasia seemed to live normal lives and it seemed like the best case scenario of what seemed like our only option.
To my surprise my phone rang later that afternoon and the hospitals number was on my called ID. It was one of the genetic counselors. She told me our results had come back, and wanted me to sit (this was the second time I had been told this). The results were POSITIVE for ACHONDROPLASIA. I immediately felt the biggest sense of relieve and comfort that everything was going to be ok. I suddenly felt a connection to my baby again (the baby that I never could even feel because I had so much amniotic fluid). I was ready to come out from my hole I had buried myself in and try to find out as much as I could about this new condition we were going to have to help our “little” guy face.
I relayed the diagnosis to Tommy. At this point he was devastated. This was the first time he actually realized this wasn’t all a mistake and our baby was not going to be “normal.” Our roles as the rock completely reversed. He then fell into his period of shock and depression, just as I finally began to heal.
Between 29 and 30 weeks I was officially put on modified bed rest and restricted from driving because of my low blood pressure and I really wasn’t able to even do anything because of my excessive fluid levels. Normal levels were supposed to be around 24-25, mine were measuring closer to 30, even reaching as high as 34.
We had a few more measurement ultrasounds since my 28 week appointment just to check on baby’s progress and to try to give the doctors a better idea of what they would be dealing with after delivery. I was finding that there were resources explaining achondroplasia, but we still had NO idea what to expect or how to prepare. Several other POLP’s (parents of little people) reached out to us and were so helpful in sharing their stories after we put our news on social media. We quickly found out that this condition wasn’t as rare even though the doctors couldn’t really tell us much that was helpful, except for “what if’s” and worse case scenarios.
I did receive a call from Primary Children’s Medical Center genetics department to schedule us an appointment with Dr. John Carey. I knew this was the doing of the genetic counselor who had said she would get us in touch with someone who could answer our questions. We were very excited for this appointment. Dr. Carey we were told didn’t have any opening for months, but would meet with us that very week during his lunch break. We were amazed. Tommy and I brought our parents with us to the appointment as well because everyone had so many questions. We figured with so many of us there we would have a better chance of having everyone on the same page and that way our parents could hear their concerns straight from the doctor. This appointment was the first sense of relief we felt since the diagnosis. Dr. Carey was incredible and was so happy and excited for us. He let us know it was going to be ok and went over every possibility of what to expect from delivery through the first few years of our baby’s life. We finally had an idea of what to expect and felt ready and that we could deal with what was coming. And it was reassuring to know that we had the best doctors and hospitals to help us every step of the way.
At 32 weeks I began going in for non-stress tests (NST’s) twice per week to monitor the baby. At this time my blood pressure started transitioning from being low to climbing dangerously high. The dizzy spells subsided but I still felt awful and started to develop horrible acid reflux. When I would go in for my NST’s they would always ask me if the baby was moving, and I really couldn’t feel the baby move unless he was directly kicking me. Once they did the ultrasound and measured my fluid they were always relieved to see the baby was actively moving, I just couldn’t feel it. I failed the majority of the NST’s. The baby would never quite cooperate and his heart rate would never accelerate as they would like it to. When this would happen they would do a biophysical profile (basically just a long ultrasound to observe the baby’s well-being). Baby Lowell always did great on the biophysical profile because he was such a mover, but I was always hoping they would just tell me it was time to have the baby. I was done.
Towards the end the acid reflux was horrible to deal with. I couldn’t eat, what I did eat I threw back up, I couldn’t sleep, I was constantly feeling like I was being burned from the inside out. I also just felt that my body was completely toxic from all of the acid. The doctors prescribed medication to help and I felt like I was living on the prescribed medication as well as over the counters just to make it through each day (I didn’t know that this was probably the forewarning of all of that gorgeous hair that we were soon to see!). We also had a serious discussion with our doctor and finally agreed on a birth plan. I had opted for a scheduled c-section since the very beginning of the pregnancy. My doctor was very against it and wanted me to try for a vaginal delivery first before just jumping to a cesarian. As problems with the pregnancy developed his thoughts began to be more considerate of the cesarian delivery. As we approached the end the baby’s head was measuring at 41 weeks when he was actually only 35 weeks (arms and legs around 25 weeks, always about 10 weeks delayed). Because of baby’s large head the doctors finally agreed on the cesarian and we had a set birth plan that I would not have to attempt labor. I felt so relieved.
At this point I was huge and so sick. My blood pressure was getting out of control and the doctors seemed to be getting concerned. They were having me monitor it several times per day and telling me to come into labor and delivery if it was continually above 150/90. We made several trips to labor and delivery, and were sent home disappointed and without a baby. They kept asking me if I was having any pre-eclampsia symptoms, but I wasn’t. I just felt like I was going to die, and they said that didn’t count as a symptom. Tommy was also so ready for us to have this baby because of the toll it was taking on me. I had no idea how I was going to care for a baby after this. I felt like I was never going to be me again and that I was going to need a very long time to recover.
At 36 weeks the doctors were following me very closely and I was going pretty much daily for NST’s, for crazy blood pressures, and for lots of blood work. At the beginning of my pregnancy my doctor had said that because of my diabetes I would not go past 37 weeks of pregnancy. I would either be induced or have a cesarian at 37 weeks because that is typical for diabetic moms. But because my diabetes was so well controlled during pregnancy (A1C’s at 5.6) my doctor no longer planned on taking the baby at 37 weeks and wanted me to hold off delivery as long as possible. This was devastating because I was thinking the end was much nearer than it actually was.
36 weeks and 6 days. I went in for another NST and appointment. The nurse had taken about 6 blood pressure readings and just kept shaking her head and asking if the readings had been that high before. I told her yes, they have been for weeks, and they just kept sending me home from labor and delivery. Soon after the doctor came in and said the happiest news – “we are having a birthday either tonight, or first thing in the morning.” I could have cried. I was so so happy. He sent me down to the lab to get final blood work. He said they would call me in a few hours once the results were back if I needed to come to the hospital tonight, if not I was scheduled for the first cesarian in the morning and I needed to be to the hospital by 6am. We rushed to the lab, and then home to finish packing.
Side note- when I got back home I found that the baby’s room was flooded. Awesome. The bathroom toilet next to the baby’s room had somehow started leaking while we were at the doctor’s and had soaked through the wall and into the freshly finished baby’s room onto the brand new carpet. So I quickly used every towel in the house to soak up as much water as possible. Family, friends, and neighbors reached out to help pull up the carpet and get fans in the room to dry out the carpet. I didn’t have the energy to worry about things, we were having a baby- in just a matter of hours!