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!