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.