This whole process of our daughter's condition has been a roller coaster of emotions. We feel hopeful one moment, helpless the next. Confident in the Lord's will, then questioning what His purpose is in all of this. Completely encouraged by the gifts and encouragement of others, and completely in the dark with all the doctors involved in this case. Thankfully, the Lord has allowed one of us to be strong with godly perspective while the other struggles, and I'm even more in love with my husband each day as we grow through this together.
A lot has happened in the past month, but the short of it is this: At 22 weeks in Utah, Caroline measured in the 27th percentile. At 24 weeks in Texas, she measured in the 5th. This disqualified us from surgery and lead them to believe my placenta might not be working well. At 26 weeks in Utah, she measured in the 31st percentile. That kind of weight jump doesn't happen. A mistake was made. We could have gone through with the surgery. But I'm 27 weeks today (3rd trimester), and our window of opportunity is gone.
I feel exhausted even writing about the up-and-down emotions we've experienced since finding this out. Our doctor has a theory as to how it happened, but nothing has been confirmed and right now we really don't know what happened.
The next step is figuring out the details of her birth, post surgery and care thereafter. I have been told that as long as her head and spinal sac don't get too big, I can have a natural delivery. That was the one bit of good news I received in the past two weeks. After birth, they will close up the opening within 24 hours and she will, most likely, spend time in the NICU. I'm struggling with knowing I won't be able to hold my baby for days, but I'm thankful I have a few months to process that knowledge and deal with it. After that, her care will depend on the severity of her hydrocephalus and her neurological function, along with whether or not the chiari malformation has any affect on her (please pray it doesn't).
As we work through knowing we could have helped our daughter and now can't, I remember the blessings God has graciously given us:
* All of you, reading this, who have prayed for our baby, given us gift cards and letters, speaking words of truth and encouragement and forgiving me specifically when I can't remember things (even though I write them down on my calendar).
* The AMAZING doctor we have to deliver Caroline. That's a whole other story, but we should not have had access to him (he's extremely busy), and are completely thankful for the connections that lead us to him. I'm also thankful for another medical professional who has called to check up on us through all of this and will be very involved in our care after Caroline is born.
* Our families, who have sacrificed time and money to care for our children, clean our house, make meals and be here for us as we seek joy in the grief.
* We've had opportunities to share our faith with a lot of people, including every doctor we've come into contact with. We WILL glorify the Lord in all of this as best we can.
* Seeing our church rally around us and take on extra responsibility (especially in Kids ministry). It's really been an honor to see.
* The fact that I am not separated from my children for 4 months. I'm so thankful to be with them every day.
We know God doesn't need this surgery to heal Caroline. We also know that it may have been his plan all along for her to have special needs. In either outcome, we know He is good and we know He is sovereign. Yes, it's very hard. I don't want to watch my baby suffer. But He has created this amazing human that He loves so dearly and she is going to show us what strength and joy really mean.
Please continue to pray for her healing. God is able and we pray this boldly. Please also pray for our confidence in Him if He chooses not to heal her. I have asked God to make her joyful, and would love for you to join me in that one, also. We are so very thankful for you all!
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