Natalie and I prayed for a child and it didn’t take long for God to approve the idea. After a few exciting doctor visits we were well on our way planning for our new arrival. At the 16 week appointment we were offered a blood test that screens for the possibility of some of the scarier genetic defects like Trisomy-18 and Spina Bifida. Knowing that age is a risk factor and wanting to do all we can to do the very best for our child we opted in for screening. We expected to hear that everything looked fine and continue picking our nursery colors and car seats.
I’ll never forget the day Natalie called me at work after the nurse had called to tell her the results indicated a high risk of both Spina Bifida and Trisomy-18. We were sent to the Fetal Diagnostic Center for an ultrasound and consultation.
In the two weeks between the test results and the scan we prayed and became confident that the test was wrong and the ultrasound would show that our little baby was perfectly healthy. When the day came we got to see much clearer images of our baby and he just seemed so perfect to us. When the doctor came in with more seasoned eyes he immediately saw several problems. The baby was very small for gestational age, there were potential signs of Spina Bifida in the skull, possible heart defects and very probably clubbing of at least one foot. The signs pointed to Spina Bifida and we were devastated.
Appointments were made at Cincinnati Children’s hospital for a two day round of scans and tests followed by meetings with the fetal care team to determine a more certain diagnosis. A fetal MRI was done followed by a detailed heart ultrasound. The first bit of good news came with the heart ultrasound that the heart looked good and had no defects that they could see.
A normal growth ultrasound was done and then we had meetings with various specialists. The geneticist came in and gave us the news that our child did NOT have spina bifida which was amazing news. We knew that there was still something wrong but we were thankful for this news. After we met with the full team we learned the diagnosis was severe early onset intra-uterine growth restriction. (SIUGR) This means that the baby is small for gestation age due to some unknown placental issue. One element that often goes along with this condition in absent end diastolic flow in the umbilical cord. They recommended we follow up with the Fetal Diagnostic Center and Central Baptist in Lexington for the time being to see how the pregnancy progressed.
Throughout the next several weeks we went for scans every two weeks to see how baby was progressing and to see if the umbilical cord flow was reversing. To our delight throughout these visits our baby seemed to be growing at its own pace, behind but steady. At 26 weeks we were referred back up to the University of Cincinnati as we wanted to deliver at UC due to their highly capable NICU and proximity of Cincinnati Children's Hospital should we need any services from them.
Our second appointment in Cincinnati at 28 weeks was a huge milestone as they estimated his weight at around 483 grams which making him admittable to the NICU and considered to have much better odds or survival and better health. They gave the first round of steroids at this appointment to help his lungs develop in case deliver was imminent.
During a follow up appointment at the clinic in Somerset they found the diastolic blood flow was reversed. After monitoring the baby for an hour they sent us to UC Medical Center for monitoring. After being on the fetal heart rate monitor overnight an ultrasound showed the cord flow back to absent and we were sent home.
We had another appointment the following Monday where the blood flow was absent again and that sent us to the hospital to stay. We stayed in the antenatal unit from Monday April 22nd until delivery on Wednesday, May 1st. Our routine consisted of daily ultrasounds and monitoring as the heart tracing warranted. The longest stretch was about 29 hours continuous.
As the second week began there was a notable increase in the frequency of heart rate dips and more common findings if reversed diastolic flow. Wednesday morning’s ultrasound seemed a little worse but we hadn’t seen the doctors again by lunch time so Natalie ordered her tray and I went down to the Cafeteria to get a bite.
About halfway into my lunch Natalie called me because Doctor Snyder was there to talk to us. I ran up and she said they believed it was time to deliver. Baby was not in trouble but they were seeing worrying signs in the heart monitoring. Natalie had already eaten so they were planning on delivering around 8:00 that evening.
As we were packing the room up to move to post-partum they grabbed me and said the tracing was getting worse and it was time to go now. They were already prepping Natalie for surgery and giving magnesium to protect Avery against brain bleeds. Natalie and I prayed together before they took her back and then I had to wait until her spinal was done and she was prepped to come in and join her.
After about half an hour of trying to ignore the sounds and smells of an operating room we heard “baby” and then we heard the softest little cry you’ve ever ever imagined. Our son was here. The nurse anesthetist put his hand on my shoulder and said I could stand up and have a look at him.
As I peaked over the surgical tent, fumbling through the hole in my scrub overalls to grab my phone and take the first pictures of our baby boy. It was shocking how small he was but he waved his arm, peed a little and cried again. I could see we had a strong boy who was going to surprise everyone
After they resuscitated him he was doing so well they were able to bring him near enough to mom so she could look. They finished sewing Natalie back together and sent me off to see our family and finally go and visit our son in the NICU.
Our journey to the NICU was frightening and trying but with the strength we draw from God, our families and our Christian Family we are here and amazed at what God has done for us.
Our journey out of the NICU is also going to be long and have its ups and downs but God is watching over our sweet Avery. He has the best medical team we could ask for, our family and friends are supporting us wonderfully and we are excited to see how Amazing Avery will bring glory to God.
Thank you for caring about our son and us. We hope you will be encouraged by this journey.
Hello friends! Avery says Happy 4th! He is getting so big! 4.3 lbs and growing! He has graduated from the isolette to the French fry warmer (it’s an open crib with radiant warmer) so its much easier to scoop him up and love him or change his stinky diapers. He is also off the high flow cannula and on one liter of regular cannula.
His liver numbers continue to do well and thank God for that. He is beginning to learn to feed by mouth and making many great strides with everything he does. We appreciate your continued prayers for our sweet boy. We are in awe of what God has done for him.
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