Prayers, Setbacks, Purell and Blessing - By Todd

I am a blessed Daddy in so many ways. Through this journey with Vivien, I’m reminded how precious life is. I realized I’ve never thanked God for giving my first four kids a complete set of chromosomes or a heart without defect. While I have prayed for the health of our children, I take it for granted that they can breathe on their own and circulate blood without problems. It’s these little things you don’t realize God gives us until something stops working “like it should”.

Our first few days at home have been busy and full with much time spent holding her, feeding her, driving to doctors appointments, friends bringing meals, laundry loads, lots of purell and doing all we can on very little sleep to keep Vivien healthy. Yesterday, we had a follow up appointment with Vivien’s Cardiologist. She’s a great doctor who we feel has been a real advocate for Vivien. The echo-cardiogram showed that she is starting to shunt too much blood to her lungs already, which may lead to congestive heart failure. The doctor prescribed Lasix (a diuretic), which we've started. Over the night, Vivien spiked a temperature and has had some diarrhea. She also had some very low oxygen saturations, which is not good. We are grateful for the pulse oximiter, which alerts us and helps us to wake her slightly to help her oxygen come back up.

While at first, we were so glad to see her make so much progress, it’s been hard to see these setbacks. It’s not that we weren’t warned about what may be ahead, but I’ll admit the positive improvements convinced me our girl would “beat the odds” and not suffer the setbacks so many other kids with T18 endure. We are staying hopeful and trusting God. Please pray with us about what lies ahead and wisdom in how to help her. We don’t want her to suffer needlessly. Ultimately, we know she will be healed and every cell of her body will be complete. We want to work with her and work with God in His will for Vivien as we pray for her healing, whether it is on earth or in heaven. We want to fight with her for her life.

Today, we are celebrating 16 days of a beautiful life. Vivien has only compounded the blessing that comes with being a Daddy. I’m grateful for every moment with her. The kids have sung many songs to her. “Happy Birthday” has become a familiar tune and we now have several stuffed animals with NG tubes and syringes. Our lives have been shaped by nearly 5 pounds of blessing and we are hopeful and prayerful for many more days, months and years. Thank you for your continued prayers for us and for her.

Our prayer warrior Bernie, posted this today: "Fear not, for I am with you. Do not be dismayed. I am your God. I will strengthen you; I will help you; I will uphold you with my victorious right hand."Isaiah 41:10 TLB. We are so glad that Vivien is in His hands.

Home Soon! Simultaneously the scariest and happiest thing ever...

Well, our update is that hopefully Vivien will be going home on MONDAY! This makes me very happy, and at the same time scares me to death. I will explain.

We are so looking forward to going home and not living with our hearts and bodies in two places.  We can't wait to be with all of our children at once, and we know that some of the stress of going back and forth to the hospital will be relieved.

First of all, Vivien is still doing great. The original plan was to “room in” with her on Thursday for a few

nights. This means that Todd and I care for her but under the supervision of nurses, instead of her being in the NICU. This is “intermediate level”. She was doing well with oxygenation, but had a bit of trouble maintaining her temperature so they decided it would be best to keep her in the NICU until tonight (Saturday) rather than Thursday.

 At first it was frustrating, because we’d packed clothes for all the kids and us to be gone, but in the long run, once again, I saw God’s hand in this. It gave Todd and I a couple more days to split time at the hospital where one was home and the other was with Vivien. This gave us time at home with the kids, which was something that they needed. This also gave us two more nights of sleep before we are caring for her all night, which I am pleased to report, has completely gotten rid of my congestion thankfully. It is so good to have sleep under my belt. Thank you for your continued prayers for this as we go home. And she is now doing great with her temperature. She is sleeping in an open crib with no tubes except her feeding tube so today is “the big day” where we start rooming in.

Another interesting thing that happened was that all of our kids (except Iva) got a large chunk of time to visit her with either Todd or I. Maggie was the last, and right after she got to hold her for an hour, the nurse came in to let us know that they’d had reports of enterovirus cases at Children’s Hospital which meant that no children are allowed in the NICU, even siblings. This virus is very dangerous and is only occurring in children. I couldn’t leave Maggie alone and that meant I couldn’t be at Vivien’s care times that day because I’d have to take her home. Todd was home with the kids, but thankfully, two wonderful ladies from our co-op were visiting and were able to bring Maggie home. God’s timing was perfect, as usual.

  
I keep having to look to these “small things” that God 
does to work situations out even when I think I have every detail planned out, because I can see that He is trustworthy and remind myself that He is going to take care of all the things ahead that scare me. As I go to sleep at night, I willfully take my mind off the details that are swarming through my head and think “You will keep in perfect peace whose mind is set on You because he trusts in You.” And “Keeping your eyes on Jesus, the author and perfecter of your faith…” Often these are the last thoughts before I drift off, and they are exactly what I need. The nights I’ve laid awake are those in which I am panicking but more recently, He has given peace and sleep. But anxiety is still a battle.

When we go into the NICU, we scrub our hands. Then if we touch anything other than Vivien (face, phone etc) we sanitize with purell. Everything is extremely sanitary. We had a housecleaner come in to our home a couple days ago to be ready.  A day later, I was at home for a few hours and Todd was with Vivien, the kids were playing in the backyard and the next thing I know, Iva is dripping mud and dirt from a bucket, all over the kitchen floor. Later as I am wiping her nose after crying and then changing dirty pants, another crisis happens with the older kids involving feces as well and I feel like throwing up my hands in surrender because I have absolutely no idea how Vivien is going to survive our household! We are emphasizing hand washing habits, and helping the kids to see the importance of being sanitary but I know that things will happen because they are kids. The anxiety creeps in… And Jesus keeps reminding me that he put Vivien into a family of 4 children and no matter what happens, we can trust His will and his plan.

In addition to this, I am struggling with my weakness in the area of forgetfulness. We have had amazing nurses (the care here has been great) who have been very good and patient teachers. I can try so hard to remember things, but I am just plain random in my thinking at times. Even in areas where I really try to be conscientious, I will forget things and it seems worse than usual lately. There are so many little things to remember with Vivien’s care, especially with having to tube feed her and check her breathing and make sure that the tube is in the right place. I will be very candid here (probably too honest) and tell you that despite my best efforts, in the last couple of years, I have literally gotten 5 or 6 tickets from going too fast in a school zone. You'd think after the first couple I'd motivated to remember to slow down because these are a lot of money! This is a small example, but again, I am asking God – why did you give me this little girl whose very life can sometimes depend on my conscientiousness when I am so weak in this area? Todd is SO good at this and I am truly at a loss. The anxiety creeps in….and Jesus keeps reminding me (through my tears of frustration) that he put Vivien into our family with me as her mother, He already knows my weakness, and no matter what happens, we can trust His will and His plan.

The last area that I am struggling in is sort of two-fold. It has to do with time and sleep. When I am at home caring for our kids there are times when I feel like I am just holding on, barely keeping up with everything that needs to happen to keep our household going. But here at the hospital, I can’t believe how crazy life has been. I have a baby that nurses are watching 24/7 and I feel like I hardly have time to sit down and breathe, between being there for her care and feeding times, pumping (which is another full paragraph in itself) calling about doctor appointments and insurance and meeting with social workers and dieticians and medical equipment providers. Much less find moments to eat… and sleep…. Sleep! I already have enough trouble sleeping. With our other children – as we worked them into a schedule and sleeping through the night – sometimes early on they’d go for 4 or 5 hrs at a time. With Vivien, for a while, she needs round the clock feedings, which we do have to get up for and it’s a bit of a process. When Todd is home we can switch off and on. But I have no idea how it is going to work when he starts going to work and he is up all night, and I am up all night. But I also know that in the area of time, we have been blessed with amazing people offering to help in so many ways, and I am thankful for our parents, family and friends. I also know that the stress of going back and forth to the hospital will be gone. The anxiety creeps in …. and Jesus keeps reminding me, that despite my worry about sleep and time, He put Vivien into our family and this too we will survive. He will give grace and again, no matter what happens, we can trust His will and plan.

Todd is much less worried than I am about everything and as I talk through my fears with him and he tries to settle me, I can’t say it’s always comforting. I jokingly told him about a study I read recently (true) that when someone verbalizes their worry, and the other person also begins to worry and talk about it it too, the first person’s stress level goes down. But when the first person explains their worry and the other person isn’t worried – the worrier’s stress level stays the same…. But this is just another reminder that Todd is not my salvation, despite my great relief at all that he knows and my ability to lean on him. If he were going to be home all the time I’d be ok, but eventually, he goes back to work for 24 hrs at a time. Todd can’t be my salvation. Both of us have felt especially thankful for our marriage during this time, and very close to one another emotionally and have verbalized this quite a bit to each other. I am thankful for a husband that is truly my friend. But he is not my Savior and I am reminded of this often. The anxiety creeps in….and Jesus truly is the One who can give me peace in this situation. He is my salvation.  He is the one who can give us strategies (as I was reminded this morning) on how to care for Vivien well, to love her and to be who we need to be for her.

On our last night at home, before coming back to the hospital for the last stretch, we made sure the crib was ready and above her bed we hung this.  A couple months ago my sister Anna saw this, knew it was for us, and for Vivien and bought it for us.  It is exactly what we need to remember right now.

As we move into the sleep room tonight with her, and plan on bringing her home on Monday, I know that I can trust Jesus for what is ahead for my sweet little doll baby. Whatever that is, He is trustworthy.

Thank you for continuing to pray for peace and health for Vivien, for us, and for our kids. We desperately need it. But we know Who is an expert at answering desperate prayers and relieving our anxiety – and I am grateful.

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.

Vivien's Birth Story! - Sept 10, 2014 12:48am

Short Version: Vivien arrived via c-section at 12:48am Wednesday September 10, 2014. She was 4 lbs, 12 oz and though she needed oxygen, didn’t need intubation. We praise Jesus for her arrival!

Long Version:

This birth was such a strange paradox for me. I love natural birth, I am anti-induction, anti-c-section and my friends think I’m crazy because I really do love labor and the drama and the empowerment that comes from birthing all four of my kids naturally. So going from this to deciding to induce as well as encouraging my nurses and doctors to not hesitate to do a c-section if there are any signs of distress was such a paradigm shift. At 41 weeks, we know the chances of stillbirth go up dramatically. Because of this, we decided to go ahead and do what we could to induce. Many T-18 babies die in the process of birth alone, due to the strength of contractions. Knowing that pitocin could induce stronger contractions, we began with only a “whiff” of pitocin. We had also shared our desire to have a C-section if there were any signs of distress on Vivien. If having a C-section gave us 30 seconds of her alive with us, that was well worth it. If we only had the opportunity to tell her “You are loved, you are beautiful, Jesus is waiting for your”, that would far outweigh the recovery of a C-section.

So Tuesday morning began with a stripping of my membranes, which certainly didn’t hurt like I expected. We didn’t get much but checked into labor and delivery soon after that. The doctor did do a pitocin induced stress test (0.1 units/hour) in the afternoon to check Vivien’s heart rate when I did have a contraction and see how she tolerated them. After about an hour, I dilated a little and started contracting on my own. These contractions were surprisingly easy and got me up to 4 centimeters. They turned it off again and let my body labor on its own. I was so glad my body responded well to this little nudge.

At 8:00pm, they decided to go ahead and break my water, which was fine with me. Though I’ve gone natural with all my babies, I have only had my water break naturally once; I’ve always had to have it broken by the doctor at some point, often after I was fully dilated. My bag of waters is unusually strong and this one proved to be no different. It was one of the most painful parts because they had to push Vivien down as they did it to make sure she engaged well in the birth canal. In addition to this, they had a hard time breaking it because they wanted to do it very slowly and they weren’t even sure that they had broken it because they used such a small prick. However, once my fluid started draining out things did start to pick up. And I had a LOT of fluid. Normal fluid ranges at birth are measured by 12-25. Mine had been in the low thirties, but as with most babies with t-18 I had extra fluid and that morning I’d measured at a whopping 42. I was definitely full.

My mom arrived soon after this and so did Todd’s mom and Maggie. After much asking and pleading over the past few months, we decided that Maggie could wait in the waiting room with Mom Merry during Vivien’s labor. She came in twice absolutely thrilled and excited to be there. I was happy to see both of them and she came at just the right time when the contractions were light enough that I could interact and say hi and give her a kiss. They got serious soon after she went back out into the waiting room. My labor slowed down a little so they turned the pitocin back on for an hour or so and then turned it off because my body responded again. No pitocin was needed for the rest of my labor. I was grateful for the little “nudge” but also grateful that I was able to have my own contractions for the rest of labor.

I tend to labor slow and Vivien was no different. Even near the end, my contractions were 5-7 minutes apart, which is typical for my births. They are just super strong. I have found the farther they are apart, the stronger they are. In the last hour or two, Vivien started to have some trouble after each contraction. It was interesting that her heart rate would drop right after each one, rather than during the contraction. The nurse finally changed my birth position to lying down on my side (not my preference) because Vivien handled these better. Though her heart rate would go down, it would pop back up so the doctor wasn’t too worried, but as I got further along, her heart rate was dropping more often and for longer periods. I made it to 8cm, but at about 12:30pm, the doctor made the call for a C-section as her heart rate was getting lower and lower.

Todd and I have been so impressed with the medical personnel here at Swedish. The nurses and doctors have been just great overall. You hear so many nightmare stories about how doctors respond when they find out that you have a baby with t-18 and while the doctors here do give some of the normal recommendations, when we have told them what we want for Vivien, they have been more than willing to accommodate to our plan and what our wishes are. This was no exception and they were urgent about getting her out. It was literally about 5 minutes from the time I was in the labor and delivery room and the doctor made the call for c-section, until Vivien was delivered in the operating room.

As they rushed me out, I felt both a sense of relief and peace from God. I remember as they moved me onto the operating table, I remember thinking, “people must be praying for me” because I didn’t feel scared at all and I smiled encouragingly at Todd. The only part I didn’t like was when they put a full oxygen mask on me and told me to take deep breaths and it felt like I couldn’t breathe. The anesthesiologist was super assuring as we were wheeled out and told me they were going to take good care of me. He told Todd in no uncertain terms to sit down in a nearby chair. He reminded him to sit down again when Todd tried to stand up and look. Normally women are awake during c-sections and just have a spinal, but because I’d opted for no epidural, I had no spinal access in my back. I just had the IV in place, so I had to go completely out for a general. It sounds like normally husbands aren’t even allowed in the room for a general but he allowed Todd to be there – sitting down! I can only assume he didn’t want him to faint or get in the way. I went easily and quickly to sleep.

Todd had to tell me about the rest. He said it was less than 2 minutes from the time they cut me open to her coming out. She was very blue, but they were able to give her oxygen and stimulate her enough for her to pink up and start breathing on her own. She didn’t need to be intubated which was a relief.

Both the Grandma’s and Maggie got to meet Vivien before I did, but when I woke up about an hour later back in the labor and delivery room on my back the only thing I remember was whimpering because the incision hurt so badly. I pleaded to be turned on my side and the curling up gave me the ability to get comfortable. I heard later that when I first woke up, I was combative, doing the karate chop thing. It makes me laugh when I think about it, but I don’t remember that part at all.

Soon after I woke up, I was able to go meet Vivien and hold her. They took me on a gurney right into the NICU and put me skin to skin with her for a little bit. I was still very groggy, and I loved seeing her but the memory is faint because of how drugged I was. I remember her big eyes as she was fairly alert and how tiny she was but not much more than that. Todd and I got to sleep for about 3 hours before the day started and we had lots of doctors and nurses checking on me and visitors in and out.

The next couple of days were a bit of a blur as the following day I was still super tired, sleepy and could hardly keep my eyes open as family and friends came to meet her and I worked on pumping and visiting her when I could. She is so beautiful and I loved holding her though I felt like I couldn’t do it for more than a few minutes before I felt exhausted.

So grateful that Jesus has let us meet her!

Vivien is Here!

Vivien arrived early this morning 12:45 am Sept 10 by c-section.  We were excited to meet her and we love her so much.  Not to be biased or anything but we think she is beautiful!  She weighs 4 lbs 11 oz and is 17 inches.  Molly was able to labor quite a while but Vivien's heart rate kept going down after contractions so we had to move quickly into a c-section.  She is breathing well at the moment, with oxygen.  She doesn't need to be intubated, which we are grateful for  We have been able to hold her and though she doesn't move a lot because of her low muscle tone she was alert and when she heard Todd's voice for the first time, looked around for him and made direct eye contact, which was very sweet.

She has had a few tests done and we recently met with the doctor.  The prognosis for her living long doesn't look good at this point, because of the seriousness of her heart defects.  This has been difficult to hear, but we will continue to celebrate her life as long as we can and try to enjoy every day we have with her.  We will keep researching and seeking good counsel.  We also know that God can surprise us and continue to lean on his mercy.  We will try to write a more detailed update later about where she is at medically and how we are doing, how the kids are doing and what the future looks like.

We thank everyone for continued prayers and how supportive you have all been.  We love reading all the notes on facebook, via texts and e-mails.  Thank you for all your love.

September 8, 2014

We will be going in tomorrow to discuss with the doctor our options (and if you read the below posts, we have a few options).  Most likely we will be doing something to bring Vivien into the world as the stillbirth rate goes up significantly after 41 weeks.  Thank you for praying!  We know that Jesus is in control and we will update when we can.

A Quick Update

We are now home and the doctor appointment went well.  Thankfully, my fluid levels are still high but have gone down to 30, so I didn’t need a reduction.  Vivien's heart rate was good and she seems to be doing fine.  I am 2 cm dilated, which is progress, although she has not dropped.  They offered to induce, but we are opting to wait one more week.  I will go in next week and most likely do an elective c-section at 41 weeks.  We are still praying about our options at that point, (possibly stripping membranes or breaking water) but hoping to go into labor naturally this week.  God knows if Vivien will do better with a c-secion or normal labor and we trust Him to show us.  In the meantime, thank you everyone for your prayers for His will to be done and for her continued safety in my womb until the perfect time for her to arrive!

Labor Day Labor Update

Warning: Lots of detailed birthing Information ahead for those who are interested! For those who want the short version: Please pray for us this Wednesday the 3rd as we will most likely be doing an amniotic fluid reduction, which could produce labor. Thank you!

Tomorrow is Vivien’s due date and though I am having scads of contractions, both the high, tight Braxton Hicks, and the low painful real ones at times, nothing really definite is happening. I am so ready to meet her, as well as feel comfortable again. I have not been sleeping well, because when I don’t eat enough, I stay awake, and there is not much room left for food in my overcrowded mid section! I also had some bad stomach cramps a couple of days ago, that were different than contractions. I was hoping my body was getting ready for something, but no such luck.

My last labor with Iva was very odd. I had contractions 5 minutes apart for several hours, went to the hospital and was not in labor (only about 3 cm dilated). I came home for a couple of days and then woke up in the night two nights later later with contractions fully 30 minutes apart, but definitely whoppers as far as pain went. The 30 minute ones were actual labor and I got to the hospital and was 7 cm. Talk about crazy confusing signs. So needless to say, I am ignoring everything with my current contractions, until they get really bad. (Today Maggie jokingly put a big ball under her dress and started going around with her face screwed up and her eyes shut, taking deep breaths saying, “just a minute…I’m having a contraction”)

We’ve discovered via the last couple appointments that I do have a very high amount of amniotic fluid. Normal levels are 10 average to 25 on the high end. My last measurement was 34, and I most likely have more by now, rendering me feeling like I’ve eaten a 6 course dinner all the time. I feel like my mid section is stretched to capacity. I’d love to believe that this is the only reason that I have gained more weight than with any of my other kids, but I know there is a good amount of not-baby pounds in my body makeup. However, I know it is worth it.

The doctor s told us that with the excessive amniotic fluid, uterus muscles can get distended, which basically means that they are so stretched out that they are unable to contract well. They recommended an amniotic fluid reduction and then induction. The reason they want to induce is because after you’ve had a reduction, the fluid often will replace itself fairly quickly. We’ve never been fan of induction so we proposed a different plan and the doc tor we spoke to last feels like it is reasonable.

We will go ahead and have the fluid reduction (most likely) on Wednesday. This sometimes puts women into labor, which would be just fine with me. If it doesn’t, I will stay for a bit for observation and go home, hoping to go into labor when I have less fluid in me and my uterus will be able to work properly. If I don’t go into labor and the fluid comes back, then we will wait one more week and go ahead and schedule a c-section for the following week. Viven would be 41 weeks and plenty viable at that point.

I asked what would happen if we do nothing, and they said that eventually, if my fluids get really high and my uterus can’t contract properly, my water would break. While that sounds great, I know my body and I generally have an extra strong bag of waters. Silas was the only one that my water broke with, and even that is debatable. Usually the doctor has to break it for me. With Iva my contractions got harder and harder and I was fully dilated without it broken, begging my doctor to break it. When she did, Iva came in less than a minute! Needless to say, I have no desire to pit my strong bag of waters with extra amniotic fluid, against a distended uterus and see who wins while I blow up like a balloon…

The reason we’d rather do a c-section than an induction is because we’ve already been told that contractions are much more difficult for babies with T-18 to handle. Many opt for an elective c-section because of this. Our original plan was to go into labor naturally, but with the caveat that there would be no hesitation for a c-section if she shows any signs of distress. My problem with induction is that with pitocin or other drugs of induction, my contractions would be synthetic instead of natural, and therefore possibly stronger. We’d rather not risk this for Vivien and just go straight to c-section rather than induce.

So that is where we are at. Please pray for us that God would use this to bring Vivien into the world in the easiest possible way for her. Best case scenario, I go into labor naturally sometime between now and Wednesday. It would also be great if I could go into labor after the fluid reduction, rather than having to wait and do a c-section. But we trust God and know that if a c-section is in the plans, that that is what Vivien needs and we are glad to do it. Thankfully, I feel her kicking away fairly often and her heart rate has been good at every appointment.

Thank you again for all your prayers and support. We’ve had many texts and messages from friends asking how I am doing and saying they are praying. We are so grateful for all of you!

Maggie and her "contractions"today.

8/14/14