I remember after finding out we were pregnant sitting in the doctor’s office and the doctor giving us his due date. I immediately started laughing, because the date she gave was October 3rd and I thought to myself that hopefully our gummy bear would be a day late! In my family, October 4th is a pretty big deal. It is my birthday, but I also share it with my grandmother, father, and nephew. That is four generations who all get to celebrate the great day that is October 4th. I believe there was even a great great aunt who also had an October 4th birthday. Looking back on it now, I still have to laugh, because Teddy decided four people to celebrate on one day was enough and so he decided he wanted to give Jason a little birthday present instead. So Jason got the best birthday gift ever, seven days before his birthday. And since that day, they get to share a full celebratory birthday week together, which means two parties and two cakes!
As we approached Jason’s birthday, he truly did get the best gift ever, a stable Teddy! Teddy was becoming stronger and more stable every day. We were able to stay with him almost all day and only left when they kicked us out at night. We read to him and sang to him. We tried to take over as many of his cares as they would allow. And as unconventional as it was, we were doing our best to be the best possible parents we could be and poured all of our energy into letting Teddy know we were there and would always be there, no matter what. We even had our first family photo shoot! My sister came back into town and was able to take his first professional photos, which were of course perfect and adorable!
Teddy was improving faster than anyone expected. After his initial surgery on day one, he had two chest tubes to ensure fluid was not building up in his abdominal and plural (area around the lungs) cavities. A few days after surgery he was able to get one removed. Then 10 days after surgery, the second tube was able to be removed. During those first two weeks, he had continuous tests and imaging done. Looking back through his medical records, during his first 14 days he had 36+ x-rays, 4 ultrasounds, 3 heart echos, etc. They seemed constant, and remained that way for months, but were also necessary. Not only were they making sure chest tubes, breathing tubes, PICC lines, and IVs were in place, but also being used to help to unravel the mystery that is Teddy.
It is so fascinating reading back through Teddy’s records and comparing them to what we were being told at the time. The further we got in our medical journey, we began reading all test/imaging reports as soon as they were published in his mychart. In the beginning though, we didn’t really realize that was an option or didn’t fully understand what we were reading. So we were reliant on what the doctors and nurses were telling us directly. Looking back now, our local hospital was keeping things very general with us. After being transferred to Boston, I remember thinking how strange it was that our local hospital had not specifically identified many of Teddy’s congenital anomalies, but going back through the record, I can now see that they did know many of these things, just chose not to explain them to us. I have no idea why, but I can also see that maybe they were trying to not overwhelm us. They could see how we felt like we were drowning under the firehose of medical terms. I can’t fault them for that, but for myself personally I wish we had known some things earlier than we did, because it might have made some of our early choices easier or ultimately changed some of our decisions that ended up not being right.
Aside from Teddy’s EA/TEF that was diagnosed within his first few minutes of life, additional diagnoses started being confirmed over the next few weeks. We were also able to disprove other potential diagnoses. First, we received a lot of positive news in those first few weeks. Thankfully all that magnesium I had to receive during labor worked and neither Teddy or I had a stroke, due to my high blood pressure, which was confirmed by an ultrasound of Teddy’s head. It also showed he did not have a brain bleed, which can be common in premature babies. All of his tests also showed he did not have Trisomy-13. We also found that while he did have congenital heart defects, his heart was able to function efficiently without assistance at that moment.
Aside from all the good news, the positive diagnoses also started to roll in. We were told that Teddy was born without his right kidney, but thankfully his left kidney was functioning well. While we knew he was unable to breath on his own, due to prematurity, we were also told his right lung was underdeveloped significantly. We were told this could mean that he would be on a breathing tube for an extended period of time and may require oxygen long term by a trach in his throat or with a nasal cannula. We were told he had multiple vertebral anomalies and his lower half of his body was much smaller than his upper body, but we would not know more until he was a month old and additional imaging was done. He also had a club foot and possibly a rocker foot. Lastly in those first two weeks, we learned more about his congenital heart defects. We were told he had a large PDA (common in premature babies), a medium sized ASD, and multiple small VSDs. This meant he had multiple holes in various areas of his heart causing the blood to flow incorrectly. Thankfully they determined it was stable enough to not need immediate surgery, so it was something they kept an eye on while they worked to get him stable enough to come off of the breathing tube.
And as a surprise to us all, on August 18th, 2016, Teddy was able to have the breathing tube removed and was placed on high flow oxygen through a nasal cannula. This would not be our last time Teddy was on a breathing tube for extended periods, but what it showed was Teddy had defied the odds yet again, he fought and showed his little lung wasn’t going to hold him back. He shocked everyone yet again and passed his tube removal tests and successfully transferred to high flow oxygen! Everyone watched closely, because he was the energizer bunny of breathing and breathed so fast they were constantly worried he was going to need the breathing tube again. He continued to fight though and showed him that he was ready!
So on August 18th, eight days after his birth, we heard Teddy cry for the first time. It was one of the most beautiful sounds. It was soft and scratchy at first, due to throat trauma from the breathing tube, but it got stronger each day and made us so happy! I realize that saying we were so happy to hear our baby cry is an odd thing to say, but hearing that beautiful cry for the first time was the moment all parents wait for after birth. The signal that their baby is healthy and alive. We had to wait eight days to hear it, so it was one of our happiest days. Because while “healthy” may be a relative term, that cry meant our baby had SURVIVED!
It also meant that finally, on August 21st, eleven days after Teddy was born, I was able to actually hold my baby for the first time. Really hold him. Feel his skin, his warmth, his breathing, his heartbeat against my chest. For eleven days, I stood by his bedside wondering if that moment would ever happen, scared that he may die before I had the chance to feel his skin against mine. The moment they placed him on my chest for the first time is indescribable. The love I felt for this tiny human exploded and my soul intrinsically intertwined with his. It was the most beautiful feeling in the world.
