Home at Last - Our Faithful God

A few numbers - We have been happily home for 7 days, Vivien is 44 days old, this is day 1 of Todd being at work again and he turns 40 next Monday. (Feel free to send him an encouraging note and tell him how awesome he is as there will be no party at this point in our lives. I’m serious about the note – please do! ;-)

Vivien is doing great and we are so grateful for all your prayers. We are definitely hoping to stay out of the

Photoshoot at home!

hospital for a while. God has truly worked out our hospital stay for good in our lives in so many ways. This time of going home has been SO different than the last time and we are finding it much easier to care for her. Children’s Hospital has connected us with so many people and resources available to us that will help in Vivien’s care. It is true that when you have a special needs child, people talk about their “team” of healthcare supporters and we are definitely gathering a wonderful team around us, including 24 hr nurses on call who can come to our house if we need them.

But getting home still had its hiccups. Last Wednesday as I wrote our last blog post, we were so excited because we were almost home. Vivien had made the goal of 14 ml an hour on breast milk, we were just ready to fortify and then once again, she tested positive for a little blood in her stool with a little diarrhea Thursday morning. At the time, I couldn’t figure out why it hit me so hard, but it truly did. Wednesday we were so hopeful about coming home. I felt like a door had been slammed in my face and we were going to be in the hospital for eternity

Well it just so “happened” that our friend Rosalie had called and set up a meeting with some pastors coming into the area for a conference along with another leader. They wanted to pray with and for local people who wanted prayer for healing and she had suggested Vivien. On Wednesday when the details were being put together for them coming, I thought it was nice, but Thursday morning, I knew it was another God wink, as He knew ahead of time what Vivien would need that morning. I was feeling so low. If she couldn’t eat, how could she get home? I knew that in the hospital, she could get the IV nutrition she needed so she wasn’t in any danger but I wanted her home and that wasn’t going to happen anytime soon with IV nutrition.

They came Thursday morning and prayed powerfully for Vivien. I got there a bit late but was glad to be able to meet them. I spent a little time with Vivien and Todd and then came home again Thursday afternoon for a bit before the kids came home for the evening. I just sat down in our empty house and cried. I felt so discouraged, wondering if we were ever going to figure out what was wrong with her, if she was ever going to come home and we would be a family again. I had talked with Todd about how I felt before I left the hospital that afternoon and he jokingly asked me, “Were you the girl who just wrote that blog post about God’s faithfulness yesterday, with all the amazing things He has done?” Oh yeah. Um hmm… I guess so.

It was true. How quickly we forget. The day before, I’d written pages of stories of how faithful God has been. We judge how easily the Israelites forget God’s goodness after just a few years and it took me what – one day? As I had my little pity party that evening and talked with Jesus about it, He reminded me that she had just had powerful prayers for healing from the wonderful people who had come that morning and I had just written my blog post about His goodness. It’s no wonder that an attack comes. I talked with Rosalie and she was so encouraging. Jesus reminded me that enemy often tries to convince us that all is lost, right before He does something truly good in our lives. We see this often in Scripture and I am usually the one “preaching” this to Todd and we have seen this happen over and over. There have been many times when we get a particular attack of discouragement right before God gives us a new ministry opportunity, or before He does something good and have written these down as reminders.

As we talked about in our last post – this is a battle, it’s not just life. I started wondering if maybe Vivien was going to come home after all and this was an attack right before this “good” happened. Emotionally, it wasn’t cheering me up despite the truth, but mentally it did encourage me. I knew that God was at work, even if my feelings hadn’t quite caught up with this yet. I love how we can believe God even when we don’t feel it.

And – again He proved faithful. The new plan was to try her on a medical grade formula that had the proteins in it already broken down, make it easier on her stomach. I will go off dairy and then after that we will try to reintroduce breast milk. They started the formula slowly on Thursday and she did so well that by Saturday we were able to bring her home! I am so grateful for the prayers for healing from our visitors that morning. I am so grateful for encouraging words from friends.

I love how God answers prayer. He sometimes changes our circumstances and gives us the exact answer we are looking for. Other times, He doesn’t answer prayer by a changed circumstance, but instead a changed heart - with peace for whatever difficulties we are going through. Sometimes He answers immediately, sometimes He says wait, but eventually, He does answer. I truly believe this. I love that we can trust Him for this. Either way we will get relief because of who He is. Jesus is enough. Even if our circumstances hadn't changed, I know that He would be faithful to give us grace for whatever happened. I appreciate that our prayer warrior friends have continued to pray for her complete healing. Sometimes others have faith during times when we need encouragement in our faith because we are not seeing it - and that is why we need the body of Christ.

Our dolly in Maggie's doll bed.

We still truly don’t know what put Vivien into the hospital and gave her so much trouble in her gut, which brought on the apnea and caused us to almost lose her. It could have been a bacterial infection, but the cultures never grew or proved definitive. It wasn’t the maltrotation. It could be that she couldn’t do the 3 hr feeds and was ok on the continuous, or it could be that she just wasn’t tolerating my milk well. We knew that she’d done fine with it during the first two weeks of her life. But God took a difficult situation of Vivien’s hospitalization and truly turned it around for her and for our benefit.

I remember after the first two or three days at home last time praying and saying, “God, I really don’t know how this is sustainable.” With the amount of time it took to feed her through the NG tube along with the washing and cleaning all of her equipment etc, adding in pumping, along with being up in the night so much I truly felt exhausted after only a few days at home.

But this second time of coming home has been so different. With the introduction of Vivien’s g-tube and pump, feeding her is much easier.  The doctors put her on a continuous feed, which is much gentler on her tummy. We even get much more sleep at night than we did before and are able to travel with her while feeding her if we need to. What the enemy may have meant for evil, God certainly has used for good in our lives and in Vivien’s.

We are all home and are settling into our new normal. The kids just love Vivien and are doing really well with all of us here. Todd and I have had some talks about schedule and our life definitely needs to be simplified from what it was before. The goal is to do only one thing a day, whether it is a doctor appointment, social or family event, kid’s extracurricular activity, play date or weekly CG meeting or Bible study. We know we are going to have to say no to some things we were doing before but we trust that God will lead us. Life can still get crazy but we will look to Him for wisdom in priorities.

Case in point, earlier this week I had my first time alone with all five kids while Todd attended a co-op meeting. It was not without its scare. At one point Vivien spit up out of both her nose and her mouth and she was having a bit of trouble clearing her airway which was alarming. I was trying to hold her upright and saw her eyes widen, but she let out a cry, then stopped, and then cried again so I knew that she was ok. At the same time this was happening, I vaguely heard Lucie’s voice saying, “Mommy, Iva took off her diaper and she is poopy and it is getting all over.” A couple minutes later Iva comes in and starts to crawl up on our sanitized leather love seat where I usually sit with Vivien… So much for a smooth transition to having Todd gone. Thankfully, Vivien was just fine despite her bit of spit up.  The poo was not as widespread as you might suppose. We have acquired lots of cans of sanitizing wipes so the love seat survived. There was little damage to take care of and soon we were back on schedule. Crazy yes! Needless to say though, we will be working on simplifying our activities.

So what is next for Vivien? We met with Vivien’s cardiologist (who is super, by the way) yesterday and she said that the next time we visit; we can start having some conversations about an eventual heart surgery, which is a huge praise. She just needs to grow! She has been slowly gaining weight and when she reaches a good weight they may be able to do a heart repair surgery for her. We would appreciate prayers that she would continue to grow, and continue to do well with her feeding. There are definite risks involved in a heart surgery but so many parents we have talked to have said they are so glad they did it. We will continue to pray for wisdom.

Today was my first 24 hrs without Todd at home so the kids went to my mom’s and thankfully, things have gone fairly smoothly with Vivien and I. In addition to this, the emotions I was feeling last Thursday were unfounded. God is faithful, and I do not need to be discouraged. The truth is, even if we had stayed in the hospital, or worse things had happened, God will still be faithful, He can still give us peace despite the storm and He is trustworthy. I am so glad for His faithfulness!

Thank you for your continued prayers.  Please pray that:

• 1. Vivien will continue to do well with her feeds and that we will know the next steps as we possibly transition to breast milk and shortened feeds.
• 2. That she will keep growing well.
• 3. If surgery is in the future for her that it will be in God’s timing and that He will work out all the details.
• 4. That we will have wisdom as a family in scheduling priorities, and know what to say no to without feeling guilty about it. (This is particularly for me!)
• 5. We will have wisdom with insurance and finances. We are running into a few insurance and Medicaid hiccups so please pray that these will be resolved.
• Lastly  - PRAISE JESUS that we are home and that she is doing so well!

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.

Out of Surgery

 

Vivien in her little pre-op surgery gown.

Just wanted to post a quick update and let everyone know that Vivien is out of surgery and doing well.  The things we were concerned about like her intubation and extubation went really well.  She has a topical anesthesia where her g-tube was placed and is on a little pain medication.  Her vitals are good.

She did not have a malrotation as suspected.  This is both bad and good news.  We are disappointed that we don't have a definitive answer to what is going on with her, but we are glad that her intestines look good.  We knew that there was a possibility going into this that she didn't have it, and we are glad that they were able to place the g-tube, which she most likely would have had surgery for at some point anyway.

The assumption is that she did have the bacterial infection and when we started the breast milk a few days ago that her tummy was just not quite ready for it.  She is still on IV nutrition but they will try her feeds again soon.  Please be praying that she would tolerate her feeds well and that if there is anything else wrong that we can figure out what it is.  Her last test for infection levels (white blood cell count and CRP) were very good so hopefully her tummy will be able to handle milk well again.

We've had a few tears here, but are glad that she seems to be comfortable and that the surgery went well.  Thank you for your continued prayers that God will give us and the doctors insight into her little body and what she needs.  Jesus loves her more than we do and we know that the Holy Spirit can reveal to us what is going on and give us ideas.

A Twist - Surgery for Vivien - Please Pray

After writing a new blog post and then seeing an e-mail that Todd wrote to our co-op, I realized that he wrote in a few sentences what took me a whole page to post. So here is the short version and then the more detailed medical layman’s version. Thank you SO much for all of your prayers!

Short Version by Todd:
What the doctors figured was a bacterial infection has likely been intestinal malrotation all along. The Ladd's procedure, to repair the malrotation, is frequently done on newborns, even those with compromised hearts, like Vivien. At the same time, they'll be placing a G-Tube, which will make feedings much easier. Please pray for stabilization during the procedure, especially for her heart. Also, that she would ventilate herself well once the surgery is over. And, of course for wisdom and skill for all those involved.

Long Detailed Version by Molly:
Instead of coming home early this week, the Vivien storyline has another plot twist - literally. After antibiotics and gut rest, the doctors began to reintroduce breast milk to Vivien very slowly. She seemed to be doing well for a couple of days and then on Sunday she began to throw up again and it turned yellow and then green. This was incredibly frustrating and the doctors were puzzled again and I just felt so grieved and upset that she was not getting better. Maybe she just hadn't healed and we reintroduced too soon? Could she be allergic to something in the breast milk?

They did another ultrasound and x-ray and thankfully, they saw something that made them take another route. Earlier on, a doctor that Todd had consulted on the phone with suggested an intestinal malrotation.

Vivien getting her ultrasound yesterday.
Picture via Todd's phone...

This means that her intestines would have somehow twisted or bent. She did well with eating and with her diapers in the first couple of weeks, but sometimes when something has not developed well in the womb, a malrotation can happen later on. While they had looked into this, they ruled it out as unlikely because of the way she was presenting, but after this second ultrasound they decided to go ahead and do the barium test. The result of the test is not completely conclusive but most likely she does have the malrotation and will require surgery.

At first this sounded very scary, but after hearing more, both Todd and I are very optimistic that this will solve the problem, and even be a benefit to Vivien and her care because at the same time they do the surgery, they are going to place a g-tube. A g-tube goes in the stomach and makes feeding much easier. The surgeon and the cardiologist both feel confident that Vivien will do well. The malrotation surgery called Ladd's repair  is often done on babies a week old and the surgeon told us that she has personally done this surgery on babies with Teratology of Fallot. (Vivien has three of the four heart conditions of Teratology of Fallot).

Because they are not absolutely certain this is a malrotation, they will only make a small incision and place a camera inside to make sure that it is. If it is, they will make a larger incision and do the repair, as well as the g-tube placement. A g-tube placement is a surgery that most likely we would be considering down the road. Most of the babies and children with T-18 that we know have a g-tube in and some have it placed when they are just a few weeks old. We are glad they made this suggestion since they are going to be opening her up anyway.

If she does have the malrotation, it would explain a lot and while surgery is not something I am happy about, it would mean that there is nothing wrong with my breast milk or the way we were feeding her. If it is not, we are back at square one, trying to figure out how to feed her again.

Vivien's surgery will be this Thursday at 1:00 so we would definitely appreciate your prayers at that time. Pray for Jesus’ protection on all involved. Pray that this will truly resolve this issue and that there will be no surprises when they open her up. Pray for the surgeon's hands, the anesthesiologist, for wisdom for all involved well as an uneventful full recovery. Pray that we will understand what her pain level is as she recovers and that we would not over or under medicate her. Pray for peace for her as well as for us. Thank you for all of your love and support!

The Curtain Has Been Torn - by Todd & Vivien Prayer Requests - by Molly

The Curtain has Been Torn - by Todd

With every newborn child of ours, I’ve loved studying their face, while holding them in my lap.

Vivien yesterday.  Feeling better!

Watching their eyes move, studying their facial expressions and wondering about their lives ahead. It’s been no different with Vivien. I love her nose and large eyes and thank God for every day we have with her. She is truly beautiful.

While I see some resemblance of Molly or I in her face, I also admit that the Trisomy 18 has created its own characteristics. From her webbed toes to her persistently-clenched fists, there are some physical aspects that would not be there had she not had the extra chromosome. The impact of her syndrome will continue all her days, since every single cell of hers has been given a “broken” set of blueprints.

In those times of holding and studying her, I can’t help but wonder how she would be without the syndrome. I can only explain it as “parting the curtain” of her syndrome to see who Vivien really is. I believe this is the Vivien who will run, dance and sing in heaven without being bound by the disease of genetic error.

I have a good friend, Seth Esvelt (link) who was in a near-fatal car wreck 11 years ago. Before the accident, Seth was a vibrant, smart, athletic man who had a zeal for life. But his traumatic brain injury has left him in a persistent vegetative state. The trauma of not enough oxygen to his brain caused the curtain to be closed in front of the real Seth. It’s hard to see the Seth we all remember, through the curtain. Occasionally, you get a glimpse of the real Seth showing through, but the curtain dominates the majority of the time.

In a greater sense, there is a curtain that covers the true people we were each created to be. This curtain of sin has been put in front of us all and keeps us from living the lives we were intended to live. It’s the result of being born in a broken world. For Vivien and Seth, their curtain has manifested itself with physical limitations. But it can take form differently in each of our lives. We may have curtains of shame, guilt, fear and countless other issues that continue to infect us. Without the redeeming power of Jesus, we are permanently bound behind these curtains of sin – and we suffer from them daily. Unfortunately, we’ve gotten so used to each others' curtains, that we fail to see one another as we were truly created to be (but that’s a whole other topic).

On that dark afternoon when Jesus shrieked out his last breath, we are told that the curtain of the temple was torn from top to bottom (Matthew 27:51, Mark 15:38). This curtain was a physical division between the Holy Place and the Most Holy Place within the temple. It represented a division, a boundary, by which certain men could not go. The ark of the covenant, representing the presence of God rested behind the curtain, but was inaccessible to those on the other side. The tearing of that curtain was a physical demonstration that no longer would we be kept from coming into His presence. Our sin was put on Jesus and He received the just punishment for it. His death gave us life. Because of Jesus we can now know God intimately, in ways we were never able to before (Hebrews 4:16).

While the tearing of the temple curtain represents our ability to approach God, there are still aspects of our broken world that, for the time, dominate our lives. There is a tension between the “already/not yet” effects of redemption. But one day, all things will be redeemed. Revelation 21 says: “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, nether shall there be mourning, nor crying, nor pain anymore, for the former things have passed away” (v. 3-4).

When we were first told of Vivien's diagnosis, I read If God is Good by Randy Alcorn. It was a huge help in sorting out questions and frustrations I wrestled with. After reading it, I wrote an email of appreciation to Randy. I was quite surprised to get this reply from him:

"Oh, Todd, my heart breaks with you and yet I also rejoice with you. I am deeply moved to hear you say, "I am truly filled with joy every time I see her." That's as it should be. I know she and you are in the hands of our God of sovereign grace. Please greet your wife warmly from me. God is with you, and will be. I look forward to meeting your daughter one day in a far better world.
In the grace of Jesus,
Randy Alcorn"

One day the curtain of Trisomy 18 will be torn away and my little girl will be free to dance and sing in ways she may not here on earth. One day the curtain that keeps Seth bound in a broken body will be torn and he will be the life-filled man God created him to be. One day all those who have given Him their lives will be free from our curtain of shame, guilt, fear and all the other maladies that keep us from living the life we were created for. Until then, we live with hope. Our hope rests not in ourselves, but in the redeeming power of Jesus’ death on the cross – and his triumphant conquering of death.


Prayer Requests and a Vivien Update – by Molly

Vivien is doing so much better and we are hoping to go home in the next few days. The doctors say that this is likely. Her CRP percentages (which help measure infection) are very low; she has no fever, and is tolerating a small amount of breast milk along with intravenous feeding. We are hoping to transition to all breast milk in the next week or so, possibly at home. We are also learning to use a pump for her feedings, so that she can have some that are continuous. This is easier on her stomach. The intravenous feedings also mean that she might still have her PICC line in at home for a short time. I am so grateful for Todd’s medical training. He continues to have time off to help care for her thanks to his generous colleagues at work who donated some of their sick leave to him.

I love seeing Vivien back to her normal self. She doesn’t seem like she is in any pain, she has some occasional long periods of wake time and is very content. The only concern the doctors have is that her White Blood Cell count is still pretty high. This is strange, because her WBC count was actually low when she had the infection and has gone up as she’s gotten better. It is normal for it to go down as the infection does. This is a bit puzzling, but because she is presenting well and the infection seems to be gone, the doctors are not terribly concerned. We will keep an eye on it.

Lastly, our kids have all come down with low grade fevers and sore throats / colds. This is not great timing. I am home with them now and Todd is at the hospital. We have been switching back and forth but I may stay with them for the next couple of days.

So please pray that:
1. The children’s colds would be healed and that Todd and I will stay healthy as well.
2.Vivien’s white blood cell count would go down.
3. If she comes home with PICC line in, we would care for it well and learn how to use the pump without error as we come home.
4. Her transition home would be smooth, we would learn her “normal” and have God’s wisdom to catch anything that goes wrong and that she would stay healthy.
5. Freedom from anxiety and striving. I am grateful that I am feeling more peace.

A Scare, New Perspective and New Strategies

I don’t even know where to begin this update since so much has happened since the last time I wrote. We are now at Children’s Hospital where Vivien has been a little fighter. We almost lost her on Friday (Sept. 26th), and when we talked to the neonatologist afterwards he said that most likely, if Todd hadn’t done what he did she would have died.

We are facing more days in the hospital at least and it has definitely been an emotional roller coaster in the past few days. We have asked God so many questions and pondered so much about life and death and decisions we are making for Vivien. We have cried buckets of tears and I feel like my heart is more and more knitted to hers as I love her so much and she is so beautiful and I have hated to see her in pain.

As of today, she is stabilized and getting much better so we are grateful for this. It looks like she will be able to go back on actual breast milk in a few days and maybe come home soon after that. We are rejoicing that God is healing her and so relieved and looking to a more hopeful future.

I will back up a bit though and share about our last couple of weeks. We were both happy and scared to bring her home from the hospital on Monday (Sept 22nd) . The next few days were very full of lots of laundry, Purell, hand washing, sanitizing wipes, pumping, feeding Vivien, reuniting with our kids and trying very hard to figure out what our new normal would be. We made rules about the kids asking permission to even go into our room where Vivien was and they had to wash up and Purell all the time. Todd called me a “Purell Nazi” and I took it as a compliment.

I felt a little bit lost the first day, not knowing where to start, but we got our room set up, with the crib, pulse oximiter, drawers (thanks to Pada and Grandma Linen) for all of her medical “accessories”, NG tubes, syringes and pumping things (pole for giving her feeds through her tube and tables to put everything on) lots of purell and sanitizing wipes and her little “car bed” under her crib. Our kids enjoyed holding her and Todd loved just sitting with her during her feedings, often reading the Bible to her or putting praise music on his phone for her to listen to.

I can definitely tell you that I felt overwhelmed to say the least. We had several doctor appointments and I literally felt like from the moment I got up in the morning until I went to bed, I was running on adrenaline, thinking about what had to happen next, between putting lots of loads of laundry in (thankfully my kids sort and put it all away), pumping, feeding, washing everything between each pumping and feeding, packing for the trips to the doctor etc and making sure things were going well with our other kids. At night we were also up pumping and feeding. I was getting an average of about 4 or 5 hrs sleep a night, By Thursday afternoon I was struggling a bit wondering how this was going to be sustainable. I truly felt like I hardly had one minute of downtime. In addition to this, my mom or Todd’s mom were also helping out and it was truly hard to understand how with so many helpers, I was still feeling so overwhelmed. Parents of kids with T-18 on our websites have been very encouraging in letting us know that we would eventually settle into a “new normal” and it wasn’t going to always be like this. And in between doing all these things, I felt like I wasn’t spending much time with Vivien as Todd often did during her feedings and changing, charting her food, diapers, temperature etc.

Thursday night was very difficult and I slept only a couple hours because Vivien was having some trouble “desating” which means that her oxygen saturation on her pulse ox (oximiter) was getting low and we needed to slightly wake her up to make sure she was breathing well. We had to do this about every 15 minutes, and it was always worse during her feedings. She had had a little diarrhea but we didn’t think too much of it as after that she had some full diapers with solids that were ok. Wednesday we met with the pediatrician and Thursday we’d also met with her cardiologist who had said that her heart was starting to shunt blood to the lungs and wanted to start her on Lasix. Both Todd and I were feeling discouraged by being up all night and were hoping that this desating was not going to be normal. We were worried about her going downhill, but looking back on it now, we understand more of what was going on and realize now that it was not normal at all. We were worried about apnea, but it was a totally different problem.

Friday morning, she was desating even worse during her feedings and just wasn’t doing well. We usually only keep the pulse ox on at night, but we decided to keep it on her during the day as she kept desating. We had an appointment with her pediatrician for a weight check. Todd ran over to Medic 5 to get a bag valve mask for Vivien, just in case.

We started feeding her right before the appointment, but she kept desatng and we were getting too close to time to go so we decided to go ahead and take her and finish feeding there. We kept the pulse ox on her and I realized that I needed to sit in the back with her to wake her and stimulate her as she kept desating in her little car bed. But we only made it a little ways onto the on-ramp of the freeway when we realized we had to get her out of the car bed as she was getting dangerously low. Todd pulled over and pulled her out, grabbed the bag valve mask and tried to get her to wake up. She was obviously going in and out of consciousness. She’d come out of her desaturation but every time we’d try to lay her down again, her numbers would go dangerously low.

Todd said we should probably drive to Children’s Hospital, but quickly changed his mind to calling 911 and going in the medic unit. She kept going lower and lower and he kept giving her breaths with the bag valve mask. It was so scary to watch the numbers go down and her eyes roll back in her head. A healthy saturation is 96-100 and Vivien’s normal is in the upper 80’s to the 90’s because of her heart condition. It went slowly lower and lower until it reached 14. I was crying softly and praying and wishing I could do more. It was terrible to watch and feel so helpless.

God is always good and kind to us however, and sent our friends Dave and Tiffany (my wonderful prayer warrior friend) who just “happened” to be getting onto the freeway the same time we did. They stopped and offered to help, but Todd told them the medics were coming and they went on their way, but I was so glad to see their faces for a moment and know we now had people praying. Vivien stabilized a little on the way to Children’s Hospital and as long as Todd kept her upright and awake she was doing ok.

When we arrived there were about 15 people there to greet us and immediately began working on her. She had tubes and leads and all sorts of things connecting her. They were able to stabilize her and talk about the next steps.

Over the next couple of days we had to watch and wait. At first they had a very hard time figuring out what was going on with her. What Todd and I had both thought respiratory, ended up being a bacterial infection in her gut, that manifested itself with her desating. It is easier to look back in hindsight but those first couple of days were all question marks. They knew something was wrong with her stomach, but weren’t sure if it was something very dangerous called NEC, or a twisted intestine (which could mean surgery) or merely a bug that she will get over and be ok with. Thankfully we know now that it is a very bad bacterial infection that seems to be getting better with gut rest and antibiotics. Because of T-18, her immune system is already compromised and so this hit her hard.

3rd day in the Hospital - Stabilized, pale and with IV

Those first couple of days were very dark. I had gotten maybe one or two hours sleep on Thursday night and I felt like I’d been running on adrenaline all week anyway. I also felt heavy with guilt for not seeing this sooner and I hated seeing her in pain. This was one of the things that I was most afraid of in reading people’s stories on Facebook groups about their child with T-18. Often things would come up and because of their child’s inability to communicate exactly where things hurt or what was going on, they would end up with false diagnoses or not catching things. For instance Vivien kept throwing up yellow liquid, but we had given her new lasix medicine for her heart that morning and I thought that it was her milk mixed with the yellowish tinge of the liquid. In addition to this, all of my babies have been spitters and so I didn’t think a lot of it. She’d had a small amount of diarrhea, but had more solid stool after that. When we got there we found out that her bowels were distended. I felt sick that we hadn’t caught this sooner and I hated watching her suffer. She also doesn’t cry much and even during this sickness, she didn’t cry much.

There were also thoughts of heaven. Honestly, this may sound terrible, but I just wanted her to go to heaven and be cared for by Jesus. It is very difficult to admit but I felt like since I was so incapable in caring for her, despite my efforts and she was in pain, I just felt that heaven would be a happier place for her and I wanted her to go there. I was so exhausted from just the few days I’d cared for her and was struggling with heavy guilt, wondering what I’d done wrong. We didn’t know if what she had was life threatening. Even after we found out that it was most likely a bacterial infection, all I could think about was if I hadn’t washed hands enough or made things sanitary enough for her. I could hardly stop from crying the first few days here. The doctor has assured us that it wasn’t what we did and that often you never know where this kind of infection comes from. But I still struggled.

It was amazing to think that if we hadn’t been so insistent on getting the pulse ox that she would have died. We would have put her in the car bed, gone to the appointment, not realizing that she was desating and just assuming that she was asleep. In addition to this, we’d talked about going to get the bag valve mask from Medic 5 on the way to the doctor, but Todd had decided to run and get it earlier. Again, if we’d waited, he wouldn’t have had that to give her breaths. I felt like I just couldn’t believe that she could have gotten so near death without us catching it and I just felt so horrible and responsible. Every time I held her or looked at her, I would cry. I was struggling with seeing that Jesus was leading us in these things and was still in control...

Over the last few days however Jesus has brought me comfort in several ways. He brought me to Ps 127 and I have been pondering it. I am familiar with the first couple of verses:

Unless the Lord builds the house,
those who build it labor in vain.
Unless the Lord watches over the city,
the watchman stays awake in vain.
2 It is in vain that you rise up early
and go late to rest,
eating the bread of anxious toil;
for he gives to his beloved sleep.

And I am familiar with the last 3 as well:

3 Behold, children are a heritage from the Lord,
the fruit of the womb a reward.
4 Like arrows in the hand of a warrior
are the children of one's youth.
5 Blessed is the man
who fills his quiver with them!
He shall not be put to shame
when he speaks with his enemies in the gate.

But though I have read it many times, I never realized that those two passages actually go together. Vivien and my other children are my heritage, my reward, and I am so blessed to have them. I love and enjoy them so much and do feel so incredibly happy and pleased with them. But when I came home from the hospital with Vivien, I feel like Jesus pointed out to me that I was striving. I was rising early, going to bed late and I was toiling anxiously. I was trying to “build” my house in my own strength. I felt like I was juggling a whole bunch of balls in the air and if I dropped any it could mean life or death for Vivien. I was taking it all on my shoulders and hoping that by my own effort I could somehow keep her healthy. I struggled with so much fear in coming home with her that for those few days I was pushing myself to the limit physically and emotionally, trying to keep it all together. I was guarding the door to our room, shooing the kids out, making sure they washed up to their elbows and changed into clean clothes before touching her. I was making runs to the store buying more hand towels to change them out, lots of antibacterial soap, purell and disinfectant wipes. I was sanitizing everything I touched when pumping and doing mounds of laundry. I was staying up late trying to get it all done. She’d only been home for a few days and I was exhausted.

I feel like Jesus brought me to this passage and gently asked me, “Did it work? Were you able to keep her safe by all of your toil and efforts and sanitizing?” It was obvious to me that she still developed this infection, despite my best efforts. It says, “Unless the Lord builds the house.” My children are HIS. My home is HIS home. He is the builder, He is the sustainer. He wants me to rest in HIM. He gives his beloved sleep. The “house” is the children that follow. Every harried mother needs to put these verses in context and realize that God has got this. It isn’t all on me. I can rest in His love for Vivien. He loves her more than I do. All my sanitizing didn’t keep her from getting an infection. Jesus is still in control and she is getting better, but it is not because of my efforts.

Please hear me. I am NOT saying that Jesus brought this on Vivien or that somehow this is my consequence for striving. Jesus loves Vivien and I know that He is caring for her. He has reminded me several times that He gives grace to me when I am sick, and He can give grace to her. He loves her more than I do. And He is healing her. But what I AM saying is that He is gently showing me that all of my efforts and toil and fear need to be laid on His shoulders. What the enemy means for evil (sickness), the Holy Spirit uses to say that when we take Vivien home again; my attitude needs to be different. I may be doing some of the same things (I am still planning on being very sanitary) but my outlook cannot be one of fear but of trust. It cannot be one of striving, but of rest in Him. It cannot be one of being anxiously toiling and believing that it’s all on me, but in holding Vivien (and my whole household) out to Him with open hands and saying, “I trust You, I rest in You, You have this Jesus.”

Another comfort came through the neonatologist who has been overseeing a lot of Vivien’s care. At one point, he came into our room and chatted with us about his philosophy about babies and children with T-18. If we had tried to tell someone our own philosophy about T-18, life and genetic disorders, loving Vivien in a very wise thought out and articulate way, we couldn’t have said it better than he did. He talked about the life and value that these babies and children add to the world, and to their families. He talked about how much love they have to give and receive and how we do not know the outcome of their lives or how long they will live, so we can give them the same care and help that we’d give any child who needed it. While we know now that Vivien is making progress and getting better, at the beginning we didn’t know if this was going to be the end of Vivien’s life, or merely a hiccup at the beginning. We don’t know if she will live many years from now and we will look back on this as a difficult beginning, in which we are so glad that we gave her the care she needed. He articulately explained that however long they live, we can enjoy them and they can add value to our world.

Todd and I have thought so much about Vivien’s life. There are some with T-18 who feel like we need to do anything we can to keep our kids alive and stand for life, and others who feel like it’s best to only give comfort care, without aggressive life saving measures. We have come to the conclusion that either way it would be easy to strive to “play God” or have the attitude that somehow we need to be in control. We want to hold Vivien with an open hand that says we want to work with God. If it is her time to go, we don’t want her to suffer by keeping her here at all costs to satisfy our desire to have her to ourselves. We know that heaven is a happy beautiful place. At the same time, we want to fight for her life, enjoy her if He wants us to and give her a chance to live and love and glorify God here on earth. We know that her life has purpose, no matter how long or short it may be and we want her to live out the purpose.

In this case, those first couple of days after she almost died it is easy to question yourself. If we had it to do over again, we of course wouldn’t choose to let her die, but we still questioned ourselves, in those first couple days, wondering if we’d kept her alive just to watch her suffer. Now that she is getting better and doing well, of course we are glad that this looks like it is going to be the “hiccup” not the end of life sickness. It is easier to see how the enemy was trying to discourage us and give us guilt and fear. We are praying for greater faith and trust in the Holy Spirit. We don’t know what the future holds and we are glad that He continues to lead us.

My dear friend Christy asked God for a Scripture for me and the one that she gave me wasn’t one I would have thought of for a sick baby, but again, what the enemy means for evil, God always redeems for those who love Him. “19 Or do you not know that your body is a temple of the Holy Spirit within you, whom you have from God? You are not your own, 20 for you were bought with a price. So glorify God in your body.”. We have dedicated Vivien to Jesus. We can trust that even her little body can be His temple (John the Baptist was filled with the Holy Spirit from his mother’s womb. We have prayed this for Vivien). She can glorify God through her life. He is continuing to heal her of this infection and we trust that if He does, she can glorify Him and fulfill her purpose in her life and we can enjoy her longer.

The book, “Beautiful Battlefields” given to me by my friend, continues to counsel me as well. She talks about “strategies” that God gives us in our battles and cites Gideon, Jehosophat and Joshua as having different strategies and methods for each battle – but all in obedience. I want my new strategy to be one in which I am still diligent, but not anxiously striving. To rest in Jesus’s sovereignty and not my own effort. Please pray with me that I will rest in His peace for our family and for Vivien and for her future. Again, I know that He is trustworthy.

In addition to this, Christine Caine writes, “Some people think that the promised land will devour them, others think it will nourish them. Perspective is everything. (Num 13:30-31.)” When God gives us good things, the enemy wants us to believe that they are not good for us, and that they are going to consume us instead of nourish us. I know that my perspective on my home life, and kids needs to continue to come from God. The feelings of being overwhelmed, fear and anxiety that I felt in taking Vivien home – the busy-ness in caring for all of our kids and making sure Vivien is ok – need to change. My kids and home is my joy and reward. I truly do enjoy them so much. They are part of God’s gifts to me – my promised land. Those of you who know us well know that God gave Todd and I as singles Deut 30 and 11 as promises about our future family – our promised land. The gift of my family is from Him. I need to see that it will not “devour”. You are joining me on this journey. Just reading my last blogpost is evidence that I need His grace and peace instead of fear. I may be doing some of the same things I did in those first few days at home as far as caring for Vivien and our kids (hopefully with a little more sleep) but with a different heart, outlook and perspective.

Today!  Alert and on the mend....

In sitting here looking at our little girl, we are so grateful and relieved that she is doing better. She has no more blood or tissue in her stool, her bile is not green but yellow. She is more alert with her wide eyes, more herself, her color is good and we are so glad for the good care we are getting here. Her infection numbers are down and hopefully we can bring her home next week. Please continue to pray with us for her transition to breastmilk again (most likely Friday) as she has been fed intravenously. Please pray also for her transition home, for peace and joy and health for all of us, especially at this time of year. Thank you for your continued love and prayers!