Easy! - Loving Vivien...

As you read through this update, I want to point to Jesus and His character and His plan. My mom had been reminded lately of a place in 2 Kings, which talked about how God was going to fill the valley with pools of water for the Israelites and their cattle to drink, yet with no wind or rain. Then in 3:18 it says, “This is an easy thing in the eyes of the Lord.” My mom was reminded that if this is an easy thing for God, then taking care of Vivien and healing her and making her strong is also easy for him. When she told this to Maggie, Maggie’s response was, “Grandma, 2 Kings 3:18! “Tri” means three! 3:18 is for Trisomy 18. This is for Vivien!” So grateful for Grandma and Maggie’s faith.

In these days of anxiousness and feeling a bit heavy at times with the responsibility of thinking about learning how to bring Vivien home, we cling to this – that this is “easy” for God and he can make it easy for us. His yoke is “easy” and his burden is light. We trust Him with Vivien’s future and we can rest in these promises.

This is a long update so I have separated it into sections. Feel free to skip to the sections that you most want to hear about. The birth story is on a separate post below and the rest of the details are in this post.

We also wanted to share a couple of links. The first is a beautiful slideshow. Our friend Serena Harkless came and did an amazing photo shoot of Vivien and has made it into a slideshow that can be watched here:
Vivien's Slide Show

She has also put together a meal calendar for us. So many of you have offered to help and we appreciate it so much. Thank you in advance! You can access it here:
Meal Train

Diagnosis

In the first couple of days after Viven was born she had some tests done and we had consultations with different doctors. The echocardiogram confirmed what was seen in utero, which is that Vivien has a fairly large VSD (hole in her heart), an overriding aorta and right ventricular hypertrophy. What this means in layman’s terms is that she is circulating blood that is less oxygenated than it should be, because a portion of the blood skips by the lungs (where it would normally be oxygenated). The doctor who spoke with us said that he would give her 1-4 weeks or so. This was difficult to hear. We were so excited to have her born alive and fairly well stabilized that to think she could leave us so quickly was hard to take.

Day two was difficult for both of us, and we both spent the morning crying, holding her and praying. We want to be realistic, but we also want to trust that God can do miracles and know that there are many who have received difficult diagnoses and have lived longer. The meeting with her pediatric cardiologist Dr. Allen caused us to be a little more hopeful. She explained it to us in greater detail, with drawings of Vivien’s heart. By this time we’d gone online. We found a sweet little girl with t-18 who is turning 3 soon that has all of the issues that Viven has, plus a couple more. They were able to use medicines such as lasix that helped to keep her alive, along with other things – until 9 months when she was able to have a surgery for repair. While there is much that has to go into her care and she still has a lot of medical needs, she is doing well, and has even begun potty training.

We told her story to the cardiologist who was great. We told her we understand that each child is different and that just because one is doing well, doesn’t mean that all will respond to the same treatment. We asked if at some point she thought surgery might be something that they could consider, or at least not rule out. She said that she always wants to give kids a chance and depending on how Vivien does, she wouldn’t absolutely rule it out. It wouldn’t be all her decision, as her case would have to go before a board, but it doesn’t mean that there is no hope and every child is different. We appreciated her outlook so much. My voice quivered as I thanked her for “not saying no.”

We know that God would definitely have to do some miracles to get Vivien to the point where she could tolerate and be considered for surgery, but He is the ultimate Healer and it would be an easy thing for Him, should He choose.

The Present

We are trying to be realistic about Vivien’s condition, but also looking at things with a long term perspective. Despite her diagnosis, we are making plans toward bringing her home and learning how to care for her.

Over the past few days they worked on turning down her oxygen flow. She was on high flow room air for a while and yesterday they took her completely off oxygen and air. She is just breathing room air and doing well with her oxygen saturations right now, which is a really big deal. We are not sure how long this will last, but we will take what we can get day by day. It was so fun to see her without any tubes. Her feeding tube was out for a couple hours too so we got some good pictures.

A couple of other encouraging things are that while the first feeding she took she spit completely up, since then I have been able to pump and she is doing well on breastmilk and up to an ounce at every 3 hr feeding with nothing coming up. She gets it through a tube going from her nose to her stomach. At the beginning they had her on intravenous nutrition with sugar water for calories, but she is at the point now where she is only on my milk, with the IV completely gone. Lastly, though she is a long ways from being able to take a bottle, she has been sucking a bit on a pacifier, which is a big deal as far as her reflexes go. It would be amazing if at some point we could bottle feed her. Each day brings new possibilities and challenges.

We are going to meet with a group who will discuss what is needed in helping care for her at home. We are also asking lots of questions on our Trisomy 18 Facebook boards and these have been incredibly helpful.

How we are Doing

Yesterday I woke up with huge anxiety because my goal was to be at every “care time” for Vivien, asking questions and doing all of the things that are done to care for her myself. We had limited our guests for the day and Todd went home to be with the kids. I cannot tell you how much this scares me. Todd is in his element in taking care of people’s practical physical needs and I am in my element in helping people emotionally. He knows medical issues and so much more than I do in this area. This is not my forte and I felt completely inadequate and spent a good deal of the morning crying and praying and asking Jesus to help me. At my first “care time” there were a few tears, but over the course of the day I was feeling a little more confident. The nurses are wonderful at trying to teach me what to do and answering my questions. We are going to try “rooming in” with Vivien, starting Thursday, which means that she will be in the same room with us here at the hospital, with doctors and nurses on call, but we will be giving her care. We will see how this goes.

While we are looking toward taking her home, we don’t want to be premature. Because “comfort care” is the normal course, we need to be a little more aware of recommendations by the doctors as we want to work toward long term medical care, not just making her comfortable. They have been great and told us that while they want to encourage us to work toward taking her home, we are free to take our time and they will not push us out at all.

Molly - For me, I feel like God has sent me a huge life curveball. I know natural birth, so having to induce, given pitocin and having a C-section is a little outside by world of familiarity. I know newborns and how to get them to nurse well and sleep through the night quickly. My friends call for advice when they have their babies and I love sharing because it is my passion. And God says, “how about a newborn with special needs where you feel absolutely lost as to how to care for her?” He is keeping me on my toes and reminding me how much I need Him. Now I am the one reaching out to special needs moms, asking questions and getting encouragement, as if I am starting on a first baby again. We never stop learning in life. In addition to this, c-section recovery is definitely much harder than natural birth, both physically and emotionally and I am working at getting my strength up in both areas. Again, this kind of care is not my element. Thankfully, it is Todd’s.

Todd - Both Todd and I were excited after her birth, just knowing she’d made it through alive and well. But the first couple of days and diagnosis was hard on both of us, especially Todd. I love my strong, sensitive man and we are able to cry together and pray together. But as Vivien has improved over the past couple of days, he just seems to have this joy filled energy. He LOVES caring for her and wants to be by her side at every moment. He said that when people hear about her and say “I’m sorry” he feels like responding, “I’m not,” because he feels so honored to care for her and loves her so much and loves doing it. Like I said, this is his element. It doesn’t mean that he doesn’t get discouraged by a setback, but Todd receives energy from caring for others’ needs and I love his heart. Serving others is his gifting from God and I am so blessed by him.

The Kids - Our kids are doing well overall. They have had some tears as we have shared with them Vivien’s diagnosis and the fact that death is a very real possibility. At the same time, we are trying to help them be joyful. They have loved visiting her, though colds were going around at certain times, and so Silas had to wait a few days until he was better to see her. They have made her cards and pictures and already love her so much.

We are so blessed by our amazing parents who are taking such good care of the kids. The good news is, our kids love their grandparents. Iva especially has no problem going to their houses. I have to say it seems like she is not missing us at all, because it’s like Christmas to her to get to go to Grandma Merry’s house and play with the dogs, or Pada and Grandma’s or to have Grandma Melquist over. It’s actually a little harder on the older ones. You’d think it would be the opposite. I am also really struggling with missing the kids and normal life. On Saturday I went home for the afternoon and just the “goodness” of being at home with them for a bit actually made me feel worse because I miss them so much and can’t be with them. It is hard to have your heart in two places. My sweet kids cried with me as I sat on the couch holding them and talking to them and telling them how much I loved them. And then Iva – funny and adorable little thing – noticed all of us crying so she crinkled up her nose and fake cried and whimpered with us, kind of teasing us jokingly. She makes me laugh. We had to end the time on a better note, so we put on some music and they all danced for me and we were able to end the afternoon much happier.

We are thankful for Grandparents who care for them well and are available and supportive and love to have them. They even get to go to the fair today and are all excited about that.

YOU!

We have been so blessed by all the cards, gifts, visits, texts, email, and Facebook encouragements and prayers. Though we haven’t responded to everything, we are reading them all and feel so amazingly supported. Thank you in advance for all of your love and support!


Prayer Requests:

- Continue to pray that Vivien will get stronger every day, especially in her breathing and oxygenation.
- Pray for healing for her heart, and that if surgery is in the future, she would be able to grow long enough and strong enough. (One of the nurses said, “We see little miracles every day.”)
- Pray against anxiety in the thought of taking her home and being responsible for her care.
- Pray that we would learn all we need to learn in order to do this, and that God would put the right medical staff in place for us to call on as well.
- Pray for health and strength, especially for Molly as the kids have had colds and she feels like she is coming down with one, as well as recovering from the c-section. Pray for good sleep especially as this can sometimes be elusive.