So where were we? Logan went to the nursery, I went to my room … Fair warning that there may be a few tear educing moments in this post …
By about noon we were starting to get a little worried about Logan, but still just enjoyed the day. We assumed they were waiting for our pediatrician to check him out as she was going to come over her lunch break. We also knew there was a gaggle of nursing students in there so maybe they were all taking turns checking out his vitals. Great to learn, bring my baby back to me please.
We finally pestered a nurse to find out what the hold up was. One of the nursery nurses came in to explain that they were waiting for our pediatrician. One of the other nurses thought she heard a small heart murmur. There seemed to be some confusion because not every nurse heard it and it hadn’t been heard on his initial exam right after birth so they were waiting for the doctor to come in, she was on her way and we would know more soon.
We didn’t want to worry our family so we kind of made up some excuses as to where he was and told them to go have lunch and come back later. We kicked back, a bit concerned by now, but still happy enough to eat some lunch. Jimmy John’s! The first thing I wanted was a good old Beach Club. 9 months of not eating deli meat that hadn’t been microwaved makes you just crave a good deli sandwich sometimes!
One thing I will never forget about that day is our wonderful pediatrician walking into our room while we were eating lunch. She came with a nurse and a textbook and had tears in her eyes. I knew instantly that it wasn’t good news. Andrew knew as well and just sat on the bed with me and squeezed my hand. In those minutes that passed I didn’t really comprehend everything but she said that she did hear a hear a heart murmur and vaguely explained what that might mean. She also took a deep breath and said, “There are also some signs that we feel that Logan may have Down Syndrome.” I'm pretty sure in the 2 minutes she spoke to us the world stopped. Just completely stopped. Tears ran down my cheeks like a faucet and I hung on to Andrew like my life line.
Nothing of course was certain. They had already talked to the pediatric cardiologist and he had ordered an echo to see what was causing the murmur. They had already sent lab work away to test for Down Syndrome, but it wouldn’t be back for days. She said that he had slightly upturned eyes, a slight curve to his pinky finger, a slightly larger gap between his 1st and 2nd toes. It was subtle, but combined with the presence of a heart defect, it was a possibility. The good news of the conversation was that of all things – there seemed to be nothing wrong with his bowels! The one thing that was the catalyst to labor wasn’t even a problem at all.
We tried our best not to panic and just wanted to hold him. We couldn’t take him out of the nursery and he was already hooked up to all sorts of machines monitoring his heart. The nurses were all so fabulous and really encouraged us to cuddle skin to skin. I sat on that hard as a rock chair and rocked my little baby and just cried, completely oblivious to how much physical pain I might be in.
I remember just sitting there and staring. Staring and rocking. Rocking and staring and just silently crying. he looked so perfect. He looked like a perfect, tiny little baby. I was trying to convince myself that it was all just a big mistake. They would do the echo and realize that everything was fine.
It was such a relief though to have some answers and to have him back in our arms. He was so snuggly and wow, did he have hair!! He had (and still does have) this fuzzy, poufy hair that just sticks straight up all over the place. I loved it! I kissed it and kissed it and held on as tightly as I could. I wanted to protect him from everything and make it all go away.
By this point our parents were back from lunch and we couldn’t really hide anything anymore. We still only told them vague details – partially because we really didn’t know much more than that. We told them they thought there may be something wrong with his heart and were running tests. There was no mention of Down Syndrome to them. Why? We knew it would be hard. DS wasn’t something that could be “fixed”. A heart you can fix. You can save someone with a heart defect. Nothing would change if he had DS. It is what it is. We knew that a diagnosis of DS in their generation meant someone who had a grim future and was institutionalized. We were pretty sure that wasn’t what it means today, but one problem at a time right?
One of the most touching aspects of the day happened during all of the tests. I was missing out on all of this bonding time with Logan. All of those first moments where he learns my smell and my touch, lies on my chest listing to my heart beat with his. One of the nurses came in with a small piece of flannel and told me to put it under my shirt. He needed to bond with me and if I couldn’t spend my day cuddling away and chatting with visitors, he would cuddle with a piece of cloth that smelled like me. It turns out that he had one with him too. Every few hours we would switch. We would always be together. I could still be with him and be a comfort to him even as he was going through all of these tests. It works both ways though too. He was there to comfort me, because we both needed each other. Are you crying?? I am, that’s for sure and I’ve been sitting with it for 2 months now!
I also wasn’t allowed to nurse him at all in case he needed heart surgery. Let me tell you, a breast pump while you are babyless is awful, especially when one of the nurses brings you photographs they had just taken of Logan to help stimulate your milk producing hormones. Stare at the pictures of your sick baby while you are hooked up to a cold machine yanking away at you. In theory it was supposed to help my milk come in, but all it really did was make me cry even more.
Around dinner time our pediatrician came back. We left Logan with our parents in the nursery and went to another room to speak with her alone. It wasn’t good news. The details were very much a blur then, but she came to tell us that the echo confirmed that Logan had a heart defect. He had 3 separate issues – a PDA, VSD and ASD.
The most critical problem was the PDA – Patent Ductus Arteriosus. In English?? Before babies are born they have a tiny blood vessel that connects the aorta to the pulmonary artery. In most babies this closes off within minutes or hours of birth. If it stays open the blood full of oxygen mixes with the blood void of oxygen and it causes stress on the heart. Now they expected this to close at some point and not be a problem, however he had along with that a coarctation or narrowing of his aorta. The location of this narrowing point was quite close to the PDA so they were afraid that as the PDA closed it may make the narrowing even more severe. Major problem.
The other two problems? Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD). These were two small holes between the two lower and two upper chambers of the heart respectively. Not an immediate problem, but could be in the future if they don’t close on their own.
OK, so now what? Unfortunately we live in a smaller town and our hospital was not equipped for this type of scenario. That meant that a flight team was on the way from St. Louis Children’s Hospital and would be there within an hour to transfer him to the NICU there. He was not in an emergent need for care, but there was a chance that might change as his PDA started to close and he needed to be monitored carefully.
She also again mentioned the DS and how about 50% of babies born with DS also have these types of heart defects, but we didn’t really hear that part. Down Syndrome? Whatever. I don’t care. Put my baby's heart back together. Make him whole. Make sure he lives.
We were a hot mess by this point and were so incredibly thankful that our pediatrician offered to explain what was happening to our family, DS and all. There were lots of shocked faces. Tears. A few questions. Lots of hugs. Our parents were all sitting in various chairs taking turns with Logan. Andrew and I stood in the center and just clung to each other and cried. And cried. And cried even more.
Over the next hour, I am still impressed at everything that happened. My parents immediately said they were staying in town until we were back home, no questions asked. Andrew’s parents were going to drive us to St. Louis after the plane took Logan – no ifs ands or buts. By some miracle, even before all the drama started, I was in very little pain and my OB discharged me over the phone without ever seeing me again after I delivered. Yep. about 9 hours after I delivered a baby, just 12 hours after I arrived, I was (thankfully) discharged. Logan – I thank you for being a fast and easy delivery!
One thing I will never forget is that Andrew’s mom asked if our parish priest could come and pray with us. At the time I thought, “Oh, how nice. That would be lovely. The prayer of the sick. He really needs this. Let’s do it.” But when Fr. Leo got there, reality really sunk in. Yes, he was there to pray for him and heal him, but he also came prepared to baptize him. He came in with a solo cup of water and a sea shell and in the name of God, we baptized him. It was at that moment that I thought I was going to lose it completely. He was there to baptize him, just in case we didn’t have the opportunity to do so later. Logan might die. My perfect little boy that I had been dreaming about for months, might not make it and we were preparing him for eternal life if that was what God had planned on.
It’s a moment you will never forget. That sea shell will be with me forever. I will never forget.