Neonatologist & Hospice

What a week! We were finally getting back to a "normal" schedule after the Holiday Break when I received a phone call at school on Monday that Bryce had a fever. I picked him up as soon as I could and took him to the Doctor - she said he had an Upper Respiratory Infection and that we'd just have to wait it out. So we did... until Wednesday, when he still had a fever (after Tylenol or Ibuprofen had worn off)! I took him back to the Doctor's where she gave us a prescription in case it turned into something else (bronchitis or another sinus infection) and by the next day he was looking & feeling better and fever free! We never have an issue with staying at home with Bryce when he's sick because that always means extra cuddles for us (which are rare these days as he's more interested in climbing & playing!). However, we had two important appointments scheduled on Wednesday with a Neonatologist and Hospice. We had yet to take Bryce to an appointment with us because he's always been able to be at school. And with the way he was feeling, there was no way that we could allow ourselves to leave him with someone else!

First, was our appointment with the Neonatologist. We were ushered into a large conference room, and began wondering exactly how many people we'd be meeting with. Only one person walked in, introduced himself, shook our hands, and apologized for the large room stating that "they didn't know where else to put us." (Apparently, these types of meeting don't happen too often.) He asked us to tell him what we already knew about Leah's diagnosis and what we wanted to find out. We basically said that we understand that her form of dwarfism will cause her chest & ribs to be small and that her lungs & possibly heart won't be able to grow or function properly. (Our typical response when explaining her diagnosis to anyone.) We told him that we've spoken to two perinatologists, two genetic counselors, and done our own research and we understand her diagnosis. What we're not getting from anyone is "what can we do" to help her, what is considered ethical in treating her without causing pain & suffering, and what are our options should we decide to accept medical intervention. He also asked us if Bryce was healthy when he was born. ("Perfectly healthy & still is".. but I guess that's just how sick the poor little guy looked that day.) It honestly stunned me that the first statement he made was "did we understand that terminating the pregnancy was considered perfectly ethical at this point considering the diagnosis." I could feel my blood begin to boil (This was the last thing that I wanted to discuss). We said that yes, we understood, and that we chose to continue to full term. I think that fact that both Jason & I said it together and so matter-of-factly got him off that topic real quick!

From there he proceeded to tell us that comfort care was a great option for a baby considered to not be able to withstand life. The baby would be kept warm and cuddled and be able to be with Jason & I. She would be able to receive medication to ease any discomfort, but not be sedated or anything extreme. She would just pass away naturally. He then told us that other options included intebation or a tracheotomy which would mean sedation because she would feel discomfort and pain because her lungs won't be designed to breathe. He has had the experience of delivering 2 babies with the same diagnosis and said that both options have been taken and the baby that was intebated clearly suffered and had to be sedated. I really appreciated how he was speaking so honestly to us and almost seemed as if he was telling us what he'd do if this was his baby (which I would have asked eventually). We told him that we wanted to spend as much time with Leah as possible and wanted to know the "usual game plan" for a baby in a situation like this and how quickly I can hold her. He said that depends on how well I do during the delivery or c-section and how well Baby Leah is doing. As long as I am okay and she is okay and not sent to the NICU, then we should be able to be united quickly. (This really bothers me, because I want to be with her EVERY second and not miss ANYTHING! I can't imagine not being the one to hold her as she passes or having to hear about it second hand.) The last question that we had was whether or not Leah's organs could be donated. He said, "That's a really good question" and that he'd have to look into it. Because of the gene that is affected, he wasn't sure if it would affect all organs. We are anxiously awaiting his answer! Jason asked the question that I was dreading to ask about what we should expect when she's born. He told us that anything is possible. We didn't want her to arrive and everyone in the room know what was happening except us. We know that it's a very real possibility that she could be born still. But hoping & praying that she is born alive, he said it just depends. She may be able to hold her own for a little while. But otherwise would have trouble breathing right away. It would be fast and forced, but they could give her medicine to slow it down. Doing this would slow her breathing & also slow down her heart allowing her to breathe more comfortably. By this time Bryce was squirming and ready to go, so we thanked the Doctor and made our way out. Even more interesting about this appointment is that there was no reception area and no where to "check out." We asked several people who were working in their offices if we needed to check out and no one had a clue. We just didn't want to leave and "skip out on the bill." (Although I'm sure they'll mail us one later, lol.) But it just made us appreciate the Doctor's time even more for meeting with us to discuss our concerns!

After lunchtime and nap time, we went to our appointment at Hospice. We met with the Social Worker who had us fill out some papers and gave her an overview of our situation while we waited for the Doula to arrive. We met in a small room that had comfy chairs and toys for Bryce. We talked about how we are doing whatever we can to celebrate Leah's life and to make as many memories as we can. They gave us resources to read and offered us other parents to talk to who were in similar situations. There is even a nurse who works with Hospice who had a patient with the exact diagnosis Leah has who has offered to talk to us as well. The nice thing about all of this is that we can choose what we want and when we want to do it. They also are aware that our grieving process started when we got the initial diagnosis. The Doula was very sympathetic and quite experienced in situations like ours and that was comforting. She said she would help us write a Birth Plan so that all of the Doctors, Nurses, and anyone else involved is on the same page with us. She even told me that I'd be able to hold my baby in the operating room if I wanted to. She has privileges at the hospital that I'll be delivering at, so she can see to it that it happens. She also offered to give us a tour of the hospital on our own time vs. the scheduled tours for new parents. We jumped at this opportunity due to the fact that this will be a different hospital than I had Bryce at. Also because I can't imagine taking a tour with other families who are so overjoyed at their new bundles of joy coming that we wouldn't want to interfere with our questions about "How can we see our baby before she passes? Where can our family wait? Where will they keep her until I am discharged from the hospital?"

The other information that they provided us with was information about funeral arrangements. This is actually our 2nd priority aside from Leah's care because we don't even know what we want to do with ourselves when we die! There are just so many options as far as where to bury her? Here in Florida where we may not live forever or back in Pennsylvania where all of our family lives? Do we bury her or cremate her? Do we have a funeral mass, a private service, or are there other options? They went through the packet of information briefly with us and had organized a list of places for us to contact (narrowing down our search). It was at this moment that tears began to roll down my face and sobs emerged. I think it finally hit me that this is REALLY happening to us. WE have to decide how & where to bury our Baby Girl. Jason and Bryce comforted me, as did the Doula and the Social Worker. The Doula said that though she never experienced this personally, the only way she knows how to describe it is that "It just SUCKS." I think Jason and I both laughed at this because we have said that to each other SO many times, not knowing what else to say. She also confirmed our thoughts that it just isn't right to have to bury your child - it's totally backwards. We left that meeting feeling understood. No one judged us. No one said the wrong thing. No one just stared at us blankly. No one offered words of wisdom or "what they would do." The only thing that could have made this better was if Bryce hadn't been sick. He normally is very well behaved and can entertain himself or sit quietly on our laps for a bit - but that night he was "something else"! LOL... he was spilling & throwing the toys everywhere, his nose running all over (though he was covering his mouth when he coughed), running, yelling, and climbing on EVERYTHING in sight! Poor Jason was on Super Dad duty as he followed Bryce around the room, cleaning up Legos, taking tissues from his mouth that he was trying to eat, feeding him a snack and then cleaning it up off the floor, and finally sitting down once Bryce laid down on the floor on his blanket and said, "Night night." (Seriously...whose kid was this?) I felt really bad at the end of the meeting when the Doula asked Jason if he had any questions and he answered with " I don't know... I couldn't really pay attention to everything."

I think this day was definitely a turning point for me as I am finally starting to accept what is REALLY going to happen. I explained it to a friend like this: "It's almost as if I've been approaching this like going to a training or a class. Trying to look at it all from a medical or scientific stand point. Seeming as if this is not really my life and my family that this is happening to. The only time I really get upset and cry is when I think of her trying to breathe or taking her last breath, not being able to nurse her, or the moments that we won't get to have with her." But lately it's getting harder and harder to accept what is going to happen. I do LOVE being pregnant (I loved it with Bryce too!), so maybe I can just keep her in my belly forever? To love her and protect her. I know this obviously isn't realistic, but wouldn't it be nice?

PS: Bryce is feeling better and had fun back at school on Friday!