Recounting Battles Won - by Molly

I finally finished reading “Beautiful Battlefields (link)”, a book given to me by my friend Serena when we found out that Vivien had T-18. I know I’ve mentioned it several times, but it continues to be a huge source of encouragement for me. Near the end, the author speaks of the importance of recounting the battles that God has already won for us and the things that He has done along the way, because this gives us courage to face the future. God has done so much in these few short weeks since Vivien has been born, and we want to praise Him, recount them here and be reminded.

First of all let me get you up to speed. Right now Vivien is up to 12 ml of breast milk per hour on a continuous feed and she has kept it down. She has also come off her IV nutrition. The last time we tried this she had to stop at 6 ml. The goal is to get her up to 14 per hour, then add the fortification and then come HOME, hopefully by tomorrow or Friday. She has also made it past 5 lbs!

Vivien's one month birthday!  Carnation and candle help us celebrate!

Todd has been staying at the hospital with her as the kids all got sick with fevers and colds last week. When I came down with it as well, we decided that I had better stay home, as it could be dangerous for Vivien right now. Plus the congestion is quite miserable and it’s not helping my sleep habits.

The thing I love about Jesus is that He truly does work things together for good. In recounting, I must say, things that may not be “good” He continues to work for our good and His glory. Even getting sick has had a silver lining. I was struggling with just feeling like I missed normalcy. It has been so good emotionally to just be home with the kids and I've gotten so many much-needed things done to be ready for Vivien to come home. I know it’s been good for the kids as well. While I miss Vivien and Todd and we are doing a lot of texting, video chatting and sending pictures back and forth, both Todd and I have agreed that it is the best thing right now. Todd is in his element at the hospital, meeting with the doctors, nurses, therapists, and audiologists etc and getting lots of daddy daughter time.

I again want to be honest as I write and I will admit have been fighting the nagging thought that the enemy has been throwing at me about the decision we made to do aggressive intervention (link) with Vivien instead of comfort care. The fact that she is 35 days old and has only had 5 days at home and the rest in a hospital has been a struggle for me. But even in this, Jesus reminds me of the truth. First of all, she is 35 days old! There are already two times that she most likely would have died if we had chosen the other path. If we chose not do a cesarean, (which was recommended by the first doctor we saw), she most likely would have been stillborn (birth story here). She also probably wouldn't have made it past Sept 26th if we had not been aggressive that day or had the pulse oximeter and infant bag valve mask (more on that later).

Another “good” that has come out of this hospital stay is the connections that we are getting at Children's Hospital. I cannot say enough about the care we have received there.  Much of her follow up is going to be done there in regards to physical therapy, understanding g-tube care and help with her hearing. We have found that though she is not completely deaf, she most likely cannot hear much and is going to need hearing aids. She has seen an ENT specialist during her stay. This is great for both hearing and an airway evaluation and they have already ordered what she needs to be able to hear.

I have mentioned the impact that the blog by Aleisa Yusko (link) had made on us. She writes about her daughter Nora who had T-18 and passed away earlier this year. She talked a lot about “God winks” when Jesus does something to remind us that He is present and active in our lives. We have definitely experienced those. First I already mentioned the neonatologist who was mainly in charge of Vivien’s care in the NICU at Chidlren's. When he sat down and basically articulated our philosophy on t-18 we were thrilled. He has since told us that he continues to pray for Vivien. We have felt so blessed to have him and this was definitely a “God Wink.”

Since she has been moved to “the floor” away from NICU the doctor who has primarily been over her care is another “God wink”. When he was younger, the child who motivated him to get into pediatrics was an 8 year old girl with T-18. He had been told in medical school that T-18 babies didn’t live. Seeing what had been done for her caused him to want to get into the field of pediatrics.  He has been a huge help and encouragement to us.

The PICU nurse Nicole, who was assigned to us immediately following Vivien’s surgery again was another “God Wink”. I was incredulous as she related her story. We found yet another person motivated to get into their field by a child with T-18. Back in the 90’s she had a little brother who was born with t-18. She was 7 at the time and she remembered it very vividly. Her mother was told that there was nothing they could do for him and he died two days later. She went into nursing because she wanted to do something to help. When I told her I felt like God put her together with Vivien we talked more and by the time she and I finished, both of us were in tears.

Again, T-18 is truly not that common to encounter. Nicole told me that Vivien was only the second baby with T-18 that she had come across. Yet God keeps bringing us these wonderful people. We didn't run into people at Swedish who had been motivated by kids with T-18 but we did have some wonderful nurses. Jen was one of those people who genuinely loves her job and loves the babies she works with. She loved Vivien and we loved her back because of how much she enjoyed our little girl. Kathleen was the nurse who helped us (me especially) be more confident in how to care for Vivien. She was such a patient teacher, always had a laid back smile and truly enjoyed educating us on what we could do as we tried to prepare to bring her home.

Another “God wink” was the acquisition of the pulse oximeter for Vivien. This machine reads Vivien’s heart rate and her oxygen saturation levels. There are “spot check” oximeters, but we wanted one that we could use at night that would alarm if Vivien went too low. Many who have living children with T-18 use them at night. Up until recently it sounds like insurance would pay for them, but when we talked with the discharge nurses at Swedish they said that it was pretty much impossible to get one now – at least a medical grade one that insurance would pay for. We tried several sources, but hadn’t had much luck. We really felt like we were “supposed” to get one for Vivien and requested on Facebook that people pray. We literally had hundreds praying for this.

Saturday I listened to a voice-mail from an 800 number that I’d ignored on my phone. It was the case manager assigned to us by our insurance company. She was a former NICU nurse assigned to our care We’d never had a case manager before and I was so glad to have a real person to talk to. Unfortunately Vivien’s discharge was going to be Monday and I was crestfallen that I’d ignored (as I usually do) the 800 number and it was the weekend. When we did speak with her she completely came through for us and it was quite the story. Monday we were supposed to be discharged and there wasn't much hope that we’d be able to get it that day. It would most likely be Tuesday. She started working on it and said she would call us back that day. It was important to us that we have it before we left the hospital and Todd felt especially strong about this. Todd and I prayed together aloud, really wanting to be able to leave Monday not Tuesday. It appeared at first that there was not even a supplier in WA State.

As we were getting ready to be discharged, we hadn't heard back from her but Todd told the attending doctor that he didn't feel comfortable with leaving without it. The discharge note had already been written, but Todd was firm. I was starting to feel uncomfortable with the whole situation and rather amazed by Todd’s fortitude. The doctor and nurses were expecting us to leave soon. It was getting a little tense and awkward. However, right before it was time to leave we heard back from our case manager. She had been able to find a supplier, a machine and even someone to train us how to use it! The discharge nurses were amazed that we got it and the supply company said they usually don’t give this out unless someone is on oxygen, but they were willing to this once. Our wonderful case manager was persuasive! Providentially they were able to pull someone out of a meeting and both the machine and the man were on their way to our house!

Additionally the attending doctor said to me (not to Todd), as an aside, “She doesn’t need this.” I just smiled and said, “You don’t think so?” and he shook his head and said, “No, she just needs to go home and enjoy her family.” I could tell he was a bit frustrated with the hold up. Because of comments he’d made earlier, we knew he liked our family and kids, but we also knew from earlier discussions, that he didn’t believe she’d live long. I felt like I got a glimpse of his heart that day. He didn’t really believe that Vivien would live very long but because of this, it was important to him that she get home and be with her siblings and love and be loved. Todd and I believe that statistical odds for babies with T-18 are better with medical intervention. Even if we disagreed with him about the type of medical intervention we wanted for Vivien, or about the length of her life, I felt like it was good to see that he wanted her to be loved. It was obvious that he thought staying another day was just keeping her away from her family and I appreciated his heart. He actually ended up being the doctor who signed the order for the insurance company to let us get the pulse ox – despite his personal opinions. We were so grateful to him that he did sign for it, even with his reservations.

So many people prayed that we would be able to get the pulse ox and we know Who really enabled us to obtain it. We are so thankful to Jesus. We realized Thursday night after we got home that Vivien was having trouble. Because of this, we brought the pulse ox along Friday as we were going out with her to her doctor appointment. If we had not had it, we probably would have put her in the car and thought she was asleep and she would have died. The pulse ox showed us how dangerously low she was getting and we were able to get her the help she needed. I love that God had put it on Todd's heart so strongly to be firm about getting it and that so many people we a part of this process.  We know that once again, Vivien's life is in God's hands. Todd had run to the station that morning and gotten a bag valve mask. We’d almost planned to do it on the way, but if we had, he wouldn't have been able to breathe for her – again God inspiring him to get it earlier. After telling the story to the doctor at Children’s he agreed that she probably would have died if we had not known about her oxygen saturations. Recounting His sovereignty in keeping her alive helps me to look to the future and know that her time to stay on earth or go to heaven is in His hands. I don’t have to fear either one. I’m not saying that I don’t struggle with fear but that by His grace, I don’t have to.

He continues to provide for us through insurance as well. A day after Vivien was born I received a call about a nursing pump. Later that day, a woman shows up in our room with a medical grade breast pump, kit and case and tells us that she is with such and such rental company and that we can use this pump for as long as we need. She said, “Usually the insurance company you have doesn’t cover this, but I was so surprised that on your policy, it is completely covered.” I didn’t even know I’d need it but God did and again made a way and I am still very grateful to be using it, despite my love/hate relationship with pumping. We also didn’t know we’d need a “car bed” instead of a car seat for Vivien because of her size and muscle tone, but the wonderful discharge nurses had one all ready for us when it was time to go.

Even the perceived “delays” that keep coming up in getting home from the hospital, both from our first stay at Swedish, and now our second stay at Children’s, God has used for good. When we were at Swedish, we thought we’d start rooming in with her a few days earlier. I was disappointed when it had to be moved back because Vivien wasn't maintaining her temperature well. What I didn’t realize was that those extra days gave me a couple more nights of sleep which I desperately needed. When it was time to room in with her, I felt much more prepared physically and emotionally to get up and help care for her, despite recovering from the cesarean.

Sleeping Beauty

At Children’s Todd and I have wondered about the diagnosis first of the bacterial infection, then the possible malrotation and surgery. Why the confusion? While surgery is never something we desire, the fact that they decided to go ahead and put the g-tube in when they did the surgery to check for the malroation has been very helpful. The pros and cons of this surgery are something that we would have had to consider and think about when it was best to do it. This way, the decision was made for us and it just worked out to have it done. Many T-18 parents have told us that feeding is so much easier with a g-tube as opposed to an NG tube. Because of what Vivien went through, insurance provides a feeding pump as well, which will enable continuous feeding at night which is easier on her stomach and will make it easier on our sleep at night as well.

I truly feel like with each setback that the enemy may throw at us, Jesus continues to come through for us. He uses His body – all of You – through prayers and meals and love. He even uses those who we may not see eye to eye with to work out His purposes – and we are so grateful!

Please pray that she would continue to do well with her feeds, that we would learn how to use the g-tube and pump and that we would all be healthy by the time she comes home, with colds completely gone.

We are excited to hopefully have her home soon. Today when a picture of Vivien popped up on the computer Iva gasped and said, “Ohhhh So cute. I love you. (Reaching out her hand and looking at me….) I love her.” She calls her “Wiwian” and always pats the phone when she sees her on the video chat with Todd. All the kids including Iva got to hold her when she was home and are so looking forward to seeing her again.

This recounting –enables us to move forward into the next season with Vivien despite the threat of colds and germs. I know that my faith is weak without his grace, but He will continue to strengthen us and help to build us up. And when we look at what He has done, we can look to the future knowing that He will continue to care for us and for her.