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Site created on October 13, 2018
Welcome to Gabriel's Caring Bridge Website. Kevin and I decided to make this site as an easy way to update close family and friends each day on Gabriel's progress. We appreciate your support and words of hope and encouragement. We appreciate you keeping Gabriel in your prayers. Thank you for visiting.
Gabriel's journey actually started last year when I underwent in vitro fertilization. After several months of fertility treatments, I was told that IVF was the only way I could get pregnant. Gabriel was actually "conceived" on August 21st, 2017, the date of the total eclipse. However, it took several more months of failed treatments before my doctor thought I was ready to try embryo transfer. She did not think my chances of conception were good but we decided to give it one attempt. In April, I was finally ready for the procedure, and just 5 days later, we found out I was pregnant. We were thrilled!
At 10 weeks, we found out that I was having a boy and decided to start thinking of names. Kevin and I each made a list of our top five boy names to show to each other and we were surprised to find that we had both listed Gabriel as one of our top five. So the choice was easy and the name stuck. We kept the pregnancy a secret for several months because I was worried that my fertility issues may cause a miscarriage. It took nearly four months before I was ready to share the news.
However, our joy quickly turned to fear when my 16 week blood work showed an abnormally high alpha fetoprotein level. This level can go up for many reasons but one of the most common is a blood flow issue with the placenta. We were told that we would just have to wait to see what the implications of the high level were. We continued to get bad news with each doctor's visit. At my 18 week ultrasound, the baby was only measuring in the 5th percentile for weight, which is quite abnormal since neither Kevin nor I are small. My doctor recommended transfer of my care to the high risk maternal-fetal medicine center at Mercy Hospital. My next ultrasound, done at 20 weeks, showed that Gabriel had completely dropped off the growth chart. The doctor prepared us for the possibility that I would have a late term miscarriage. We were devastated. We decided to discontinue my blood pressure meds to encourage blood flow to the baby. I began monitoring my blood pressure at home. At 22 weeks I had a third ultrasound back at my ob/gyn and the news continued to worsen. Doppler blood flow studies showed stagnant flow through the umbilical arteries and vein, a condition called "absent end-diastolic flow." My doctor feared that I would soon miscarry and had me admitted to Mercy Hospital for overnight monitoring and another appointment with the high risk doctor in the morning. He told me that unfortunately, there was not much that could be done as the poor blood flow through the placenta was just not supporting the baby. He told me to cut back on my work hours and stay horizontal for most of the day. I returned a week later for a 4th scan which showed neither improvement nor regression, so I continued my activity restriction and waited.
One week later, at just 24 weeks gestation, things really took a turn for the worse. Another Doppler study showed that the absent end-diastolic blood flow had progressed to reverse diastolic blood flow, meaning that the blood was actually flowing the wrong way through Gabriel's umbilicus. The doctor warned us that I was on the verge of miscarriage and told us that we had some big decisions to make. She could admit me and start me on steroids as a last minute attempt to encourage Gabriel's lung development. They would place a fetal heart rate monitor on me and watch carefully for the heart beat to drop and perform an emergency c-section when it did. But she warned me that due to his size, he would almost certainly die without the full benefit of the steroids on board. The alternative was for me to go home and take the steroid injections at home and return in two days for another scan and get admitted at that time. I decided to go home and wait it out. The doctor prepared us for the likelihood that there would not be a fetal heart beat in two days and that they would induce me to give birth to a stillborn baby. Once again, Kevin and I were heartbroken.
The next day, things went from bad to worse. I awoke feeling like my legs were swollen with fluid. I asked Kevin where the blood pressure cuff was since we were in the midst of packing for a move. I took a blood pressure reading and it was way too high. I notified my doctor and took a dose of my blood pressure meds and then rechecked an hour later. It had continued to climb. Kevin met me at the hospital early in the afternoon and I was diagnosed with severe preeclampsia and admitted to the hospital. Suddenly, the doctors' focus shifted from keeping Gabriel alive to keeping me alive. For the next three days, the doctors checked my liver and kidney values and platelet levels twice a day and kept track of my blood pressure and the fetal heart beat. On the evening of 9/29, the doctors could not get my blood pressure down and decided that I had to have a c-section immediately.
Gabriel Evan Doss was born at 9:57 pm on 9/29. He was 25 weeks gestation and weighed 410 grams (14.4 oz), making him the smallest baby in the NICU. Kevin and I heard him cry right before he was intubated and placed on a ventilator. A team of NICU doctors and nurses worked quickly to get him stabilized and placed catheters in his umbilical artery and vein. After a few minutes, he was whisked away to the NICU.
Gabriel is now two weeks old as a write this. The last two weeks have been an absolute roller coaster ride for me and Kevin. One of his doctors told us today that when it comes to infants as small as Gabriel, good things happen very slowly, and bad things happen very quickly. Positive progression is going to happen over weeks to months, but a serious setback can happen in hours. This is what we've experienced. Gabriel's lungs are severely underdeveloped and congested. After several "good days," Gabriel decompensated last week and was not ventilating well. His oxygen level was increased to 100% and his pressure on his ventilator was raised. They added medications to increase his blood pressure and discontinued his feedings to prioritize blood flow to his brain and away from his GI tract. It was devastating to see his regression. The doctors took blood and sputum samples for cultures, however, they could not wait for the final results to come back and started him on steroids to improve his lung function and blood pressure. Thank God, it was the right choice and he began to improve. The last 48 hours have showed improvement again.
Unfortunately, the doctors have warned us that this is what we can expect for the next several months. Gabriel will likely be in the NICU for 3-6 months and will likely leave the hospital still needing oxygen support. Kevin and I will continue to visit him daily and are grateful for each day that he gets a "good report." We appreciate all of your prayers and will continue to keep you updated through this blog.
It's been a busy week for me and Gabriel. Luckily, my mom has been here to help me get him to all of his appointments and help with his daily care. Unfortunately, we are waiting on some test results that are pretty scary. Gabriel has three main issues right now that we are dealing with: his breathing, his gastrointestinal issues (reflux and painful gas), and his skin. Our first visit on Monday morning was with his pulmonologist. He has not made any progress on his breathing since we left the hospital. If he gets his nasal cannula out or if his oxygen machine malfunctions (this has already happened twice!), his oxygen levels rapidly drop. We got a small piece of good news from this doctor. Since Gabriel is not having any apnea episodes, we were able to get rid of his bulky apnea monitor and swap it out for a slightly less bulky monitor that only checks his pulse ox and heart rate. This eliminated the large belt he had to wear around his chest that seemed really uncomfortable. Unfortunately, the rest of the visit was pretty concerning. The pulmonologist told us that he was concerned that Gabriel could have cystic fibrosis. He told us that Gabriel actually tested positive for CF on his newborn screen. Hospitals must submit blood samples on all babies to the health department shortly after birth to screen for a multitude of genetic and metabolic disorders. The doctor in the NICU warned us that these tests produce a lot of false positives for micropreemies because the reference ranges are the same for term babies. They told us not to worry if some things came up positive because they would retest him at a later date. It turns out, Gabriel had high level of IRT, an enzyme that can suggest CF when elevated. Since he was positive on this screening test, an additional genetic panel was done by the state lab testing for the 39 most common genetic mutations that cause CF. He tested negative for this. I actually had myself tested before I got pregnant to make sure I'm not a carrier and I tested negative as well. So I thought we were in the clear. But the pulmonologist informed us that there are actually at least 1500 genetic mutations that can lead to CF and the newborn screen only checks for the most common 39. I was a bit blindsided by all of this because nobody had informed us that Gabriel had any abnormal results on the newborn screen. The pulmonologist said that generally if a baby is IRT positive but negative for the CF gene, no additional testing is pursued unless the baby is showing symptoms. The doctor stated that all three of Gabriel's conditions (breathing difficulties, GI upset, and poor skin) can be attributed to CF. He said that many people with CF are deficient in zinc which causes a rash so he ordered Gabriel's zinc level to be tested. The doctor said that the definitive tests for CF are a sweat test or a full genetic test for the 1500+ mutations. He said that the genetic test is really expensive and insurance won't cover it unless there is high suspicion of CF. He said he didn't have that yet, but would check the zinc level and if that was low, would order the full genetic test. Kevin and I held our breath until Wednesday waiting for those test results, and unfortunately, his zinc level came back just slightly low. He said this could also be because Gabriel is taking acid blockers for his reflux, they could be inhibiting absorption of dietary zinc. He prescribed zinc supplements and ordered full genetic testing. However, we were told it would need to be pre-approved by our insurance company which would take at least a week, and then the test would take another 2-3 weeks to get results. I was not prepared to wait that long to find out if my kid has a terminal illness so I asked the doctor if we could do a sweat test while we wait. Patients will CF have extra salty sweat, and sweat production can be stimulated by applying an electric current to the skin. The doctor did not want to order this test at first because Gabriel's skin is so damaged and he didn't want to hurt him. But we came in for the test today anyway. And after torturing Gabriel for at least a half hour (or so you'd think by his reaction), they were not able to collect even a drop of sweat. Despite him screaming and thrashing, he did not produce sweat. So now we must wait. We just found out today that his insurance will cover the test, so we have to take him back tomorrow for another blood sample. We are also waiting on the results of a stool test that we submitted today. Many patients will CF have low elastase in their stool. This is a pancreatic enzyme that is deficient in patients with CF. While it will not give us a definitive diagnosis, a normal result will provide this mama with a lot of peace of mind. I asked Gabriel's pulmonologist what he thought the likelihood was of Gabriel having CF, and he would not provide me with any kind of answer. So I went to my genetic counselor (Stephanie) who said that the chance of him having CF while being negative on the genetic screen would be extremely low. He would have had to inherit a rare mutation from both Kevin and me to have the disease. But it would stop us from being worried sick until we get the genetic results.
After the visit with the pulmonologist on Monday, we went straight to his appointment with his gastroenterologist. I was pleased that she was taking his abdominal pain and reflux very seriously and not just writing it off as colic. She ordered a full GI contrast series to check for a hiatal hernia or any GI obstructions. She also switched him to a hypoallergenic formula that contains pure amino acids rather than proteins. This will help if he has a allergy that is causing his GI signs or his skin irritation. She also ordered the fecal elastase test. She too was concerned about CF and wanted to cover all the bases.
On Tuesday, we brought Gabriel in for his barium study. He was a champ! He drank 5 ounces of barium in about an hour. The whole test took about two hours and he did great for it! No anatomical abnormalities were found!
On Wednesday, Gabriel gave us a little scare in the morning. His oxygen level dropped to 85% even though he was completely calm. I switched over his oxygen from the large concentrator machine (which had malfunctioned in the past) to his portable tanks. His level did not rise. I then switched his monitor to his other foot which woke him up, but his level still did not go up. I then double checked his level with a different monitor with no better luck. He had no fever and his nurse was on her way to see him so we waited for her to arrive. She felt that his lungs sounded clear. I offered him a bottle and turned up his oxygen level and he immediately satted to 100%. We turned his oxygen back down and continued to hold steady. I was worried we were going to be headed back to the hospital, but thankfully not. I wondered if Gabriel might have a little virus starting. The nurse weighed Gabriel in at ten pounds, which is awesome!
Wednesday afternoon, with the blessing of the GI doc and the recommendation of my ob/gyn, we took a trip to the chiropractor so she could try to make Gabriel more comfortable. Gabriel was incredibly relaxed by the entire experience and really enjoyed it! Afterwords, we went home and mom and I took him and the dogs for a nice walk.
Today, went to the hospital for a failed sweat test and tomorrow we go back for more blood work. Overall a very busy week for us!