Meeting the Neonatologist...

We had a great experience meeting with the neonatologist last Tuesday but let me back up a bit and tell you about our last couple appointments

When we had our first ultrasound with our new doctors, it was our first visit to Swedish instead of Valley Medical. We got a better picture of what delivering there was going to look like. It is funny how certain things may “hit” you in different ways. Todd and I both find ourselves struggling in different areas, but again this helps us to be strong for when the other is weak.

Vivien's sweet little profile

I really enjoyed the ultrasound, getting to see her move around, her little profile (she seems to have a cute little turned up nose like Lucie) and just finding out more about her. The big issue that we did discover is that she does have a hole in her heart or a Ventrical Septal Defect – a VSD. This didn’t phase us too much as we knew this was common in babies with T-18. There is a possibility it could close on its own before birth, or in the first year. Surgery can be something to consider but we would have to find a doctor willing to do this which might be difficult. That is something we just won’t know until down the road and can really evaluate after she is born.

It was interesting, that what Todd really struggled with was seeing her hands in the typical T-18 position. It is

Vivien's little hand in 3-D.

 not just a clenched fist but a fist with the index and pinky finger raised up and crossed over the two middle fingers. It was clear on the 3-D ultrasound that this was how she was holding her hand. Todd said that it made it seem more real to him and more final that she truly did have T-18. We know that one of the reasons they hold their hand this way is because at this point, they are so mentally disabled that their brain is not able to communicate to their hand to open. Todd struggled with grief and even some anger over the next couple of days at the fact that our little girl is starting life with such a big mental handicap. He took it to God, but was very honest with me and with Him about his struggle.

What “hit” me was how the NICU was run and the rules that will be set in place. Todd and I will be the only ones who will have full access to Vivien. If we want to bring guests in, they can just come in one at a time and they must be with either one of us. There can be only two adults at her bedside at one time. The only children who can come in are siblings, and they must be free of colds or any type of illness. With 4 kids, it seems like there is always someone starting or finishing something. What if they got colds when she was born and she only lived a short while and they never got to meet her? At this point, my fears were a bit irrational, because we have found out since then that if we needed to and if it really came to that, they have a separate room that we could bring her into where they could meet her without exposing themselves to the other babies. But I know that at least in the NICU their time with her will be limited and so will the Grandparents time with her and it made me sad. I understand that with babies with T-18 on comfort care, they allow the families to hold them and there are really no rules. But if we want to give her a chance and do more aggressive treatment, she will need to be in the NICU.

Again, I had to take a step back and be reminded that God will work things out. I have to trust Him in this and not worry about the unknowns and the what if’s. I haven’t even given birth to her yet, and I can see how easy it would be to want to take control and try to fix things. We will do what we can and have decided to limit some of our social interaction and playdates starting in August. But again, we have to leave it in God’s hands.

I love that God can take it when we feel angry at Him. He’s big enough to deal with it. I really believe that it is ok to be angry at God if it is part of a process and if we continue to communicate with Him about it and move forward through the process of trusting Him. I love how in the Bible David communicated his anger to God. It’s not about going to other people with it, or being angry and withdrawing from Him, but simply being open and honest with Him about how we are feeling even if it’s anger. “In your anger, do not sin" (Eph 4:26). I’ve learned that it’s not wrong to be angry, but it is what you do with it. And I love that Todd went to God with it. – And I had to do some of this myself.

My little temper tantrum with Him was about something I've always wished for, but again, I know that I have to trust Him. With every baby I’ve always prayed for twins. When we ended up needing to use fertility drugs in conceiving Maggie and Silas (we had no problem with this with our later kids), I secretly hoped that the result would be twins. As I got older, I knew my chances for twins were higher with age (as well as higher for Down’s syndrome or other anomalies) and I was so hoping for twins. I don’t enjoy pregnancy, but I love the babies, so a two-for-one deal sounded great for me. Both Todd and I have grandfathers who are identical twins and I have aunts who are twins. So genetically you’d think we would be shoe-ins. After the T-18 diagnosis, I struggled with this. It’s not that I didn’t want Vivien, but how much better would it be if she were healthy and a twin?! My quarrel was with Him. I knew He had control over this. I trusted Him but still felt honestly mad.

Again, Todd was strong where I was weak. He reminded me that truly, God has gifted us with Vivien. Todd feels like it is an honor that God has seen us worthy to care for a special needs child. He knows who Vivien needs and He picked her to be in our family, at this time and for us to be her parents. We are blessed by getting to serve her and love her for as long as we are able. Again, He is trustworthy. My temper tantrum didn’t last long, and thankfully God soothed my ruffled feathers and helped my heart to calm down. I love how He can actually change our emotions when we go to Him. He doesn’t leave us there. And although I resented it at first, I needed Todd’s perspective. It is truly an honor to care for Vivien.

Both Todd and I were looking forward to our appointment at Swedish this week, because from the very beginning we were hoping that meeting the neonatologist would tell us a lot about what direction we will be headed with this hospital. Like I said in the previous post, we are there because we know that this group of physicians specialize in high risk births and babies but at this point we had only met one doctor. There is a team of 10 doctors in our group and 13 neonatologists at the hospital. If I go into labor naturally, we will just go with whatever doctor is on call that day so we really did want to meet as many doctors as we could.

We had another ultrasound and not much has changed with regard to the VSD or her smaller size. The new doctor we met with again assured that while many parents choose comfort care, they are quite willing to do what we wish when it comes to more aggressive care for her as far as oxygen, intubation and stabilizing her after birth. We are still considering the c-section route and he gave us some good pros and cons, but said that ultimately, the decision was up to us. He encouraged us to write a very clear birth plan and have it in place so that both the doctors and nurses will understand that we are not going to be going with the usual comfort care route.

But we felt like the neonatologist was going to be the kingpin. While the doctor is responsible for me and for birth itself, the neonatologist will be the one who really oversees Vivien’s care after she is born. What was great is that the neonatologist we met with also happened to be the medical director for the NICU. We were looking forward to hearing from him where he stood.

He was a man who might do well doubling for Santa Claus with his white hair, beard and fatherly manner. He spent quite a bit of time talking with us and listening to our perspective. Todd explained that we truly appreciate how all of the doctors here have been open to us wanting to take a more aggressive approach to her care. We said that we have spent quite a bit of time researching and talking to parents, both of babies with T-18 who have passed away, as well as parents with living children. He was very interested to find out if there were any who were local and we were able to tell him about a couple that we have met with or are meeting with.

He seemed quite open to hearing us and then explained some of the more specific things that they would be able to do for us, but was also clear about things that they didn’t have the equipment or capacity to do that somewhere more specialized, such as Children’s Hospital would. He did make it clear that if it came to heart surgery, we would have to find a physician who would be willing to take her case and that would most likely be through Children’s. But he assured us that as far as stabilizing her well after birth and then doing a thorough evaluation of her overall health would definitely be something they would be thorough in and able to do. From there we could make some decisions as to what to pursue to help her and support her life.

It didn’t seem at all like he was pressuring us to consider the comfort care route. He said that it seemed like we had done our research and while they worry about young couple of first time parents who don’t fully understand the ramifications of carrying for a baby with T-18 or the full extent of the handicaps, he felt confident that we had a good grasp on the gravity of the situation and the long term expectations for a baby living with T-18.

At one point, when he was explaining things to us and after I’d responded positively to some of the terms he was using, he asked if we had medical background. I laughed and said that I didn’t but that we have been studying so much that we have definitely become familiar with some of the medical care that Vivien will need (although I know we have so much to learn). I explained that Todd is a paramedic and we have already heard plenty of jokes about parents of special needs children becoming “physicians without a degree” simply because of what they have to learn. I’m grateful for Todd’s knowledge as a paramedic. I felt complimented though.

But the real jewel of the conversation came when he encouraged us to be aggressive in making sure the doctors and nurses that are on duty when we go into labor truly understand what we want. He said something like “Don’t be afraid to speak up. You may need to be your baby’s advocate just to make sure that everyone understands the kind of care you want, even if you have a birth plan written up.” What surprising advice from a medical director! We were so encouraged. He said that he will be telling his colleagues, but it is always important, not just to write it out, but to verbally remind everyone of the route we are taking, that we do want the neonatologist present and want her stabilized after birth. He told us that we could tell them that we’ve had a conversation with him. It sounded more like we wouldn’t have to be convincing them to give us the care Vivien needs, but that we would just need to make it clear what we want so that there is no confusion.

I know that each doctor, nurse or neonatologist will have different personalities and ideas, but so far, every person we’ve talked with has assured us that their philosophy here is that they do defer to the parents’ wishes. Again, we will be alert, prayerful and watchful, but we came away feeling very happy with the conversation.

As Todd and I talked on the way home, he said that it still sometimes doesn’t seem real. Like it isn’t truly happening to us, that we will have a baby that we will have to meet and love and then someday let go. While we hope she will live a long time, the probability of her outliving us is very slim. Even if she grows into childhood and teen years and at some point, we will most likely have to say goodbye. He struggles with this thought.

My struggle is not with her living or dying, but with wanting to understand her and care for her in a way that she has as little suffering as possible while she is here. I know that she would be happy in heaven and in some ways I would honestly feel that any of our children would be safer or more secure in heaven. I know that from both a spiritual and emotional standpoint – heaven is the happiest and best place to be. As Scripture says, it is “gain.” But in reading the FB pages so much of the parents’ conversations have to do with figuring out what is going on with their child with this or that issue, and this or that medication or reaction. Sometimes I feel very helpless to think that she could be in real trouble and I wouldn’t know what to do. And sometimes the doctors are stumped as well. Todd has often reminding me that it is called “the practice” of medicine for a reason. While we look to medical professionals for their expertise, they don’t know all. But the Holy Spirit does – and we are going to lean hard on Him and trust Him to lead us and show us how to care for Viven well.