Four weeks have passed since our last ultrasound. I’ve been able to see that Annelise is growing, because I sure am growing! It’s still really hard to feel her moving around. My guess is that she may not have use of her legs due to the Spina Bifida, and the anterior placenta is still buffering her movements. The lack of any real kicks has led to some anxiety filled days for me, as I would wait and focus on the lack of movement, which gave me lots of time to think about the worst case scenario of losing her in the womb. Eventually, she always did make a movement thankfully! So I know she’s here, and today marks the last day of our 2nd trimester!
After weeks and weeks of waiting for any new information, we’re expecting tomorrow to bring a lot to think about. Kevin is taking the day off work (so thankful that he has a manager at work who supports him taking time off for these appointments) so we can go to 3 meetings tomorrow!
At 10:30, we’ll be at Children’s Hospital Orange County (CHOC) cardiology, getting a fetal echocardiogram. We haven’t had one done yet, so it seemed like a great opportunity to get more info about her heart defect, as well as get introduced to cardiologists at CHOC. They will give us recommendations based on what they find in the echocardiogram.
After lunch, at 1:30, we have an appointment to meet the palliative care coordinator, Annie, at Miller Children’s Hospital in Long Beach to get a tour of the NICU, meet some NICU staff, and possibly have a meeting with the cardiologist there, if he is available. From my understanding so far, Annie’s job is to find out what our wishes are for the care of Annelise, and help communicate our wishes to the specialists. Not all parents choose to request interventions for their babies with trisomy 18. Some parents choose to spend as much time with their baby as possible, and just keep them comfortable for as long as they can survive on their own. Kevin and I have decided to provide as many interventions as could possibly help Annelise, such as Spina Bifida surgeries, intubation if necessary (often necessary for babies with T18 due to floppy airways), g-tube to help her eat if needed... and whatever else comes up if we’re lucky enough to care for her on this side of the womb. After being a part of a Facebook group for Trisomy parents, and seeing that some of their little ones make it through interventions to come home and have a place in their families, we can’t NOT try all that is available in 2019. So since there is such a great difference in how families choose to address the issues that come from having T18, I like the idea of having Annie at Miller Children’s to help us make it known that our goal is to get Annelise healthy enough to come home..
We’ve been counseled by an incredible couple who has been through their own Trisomy 18 experience 3 years ago with their son, that we will have to be our own advocates and make it very known, and probably over and over, our desires to treat Annelise’s health issues. We’d love prayer for wisdom about who we will plan to have on Annelise’s team of specialists. I could also use some extra wisdom about how to let go of trying to get all the details squared away, since so much of the story will just need to unfold in real time, and decisions will need to be made as issues come up or don’t, but we won’t know until we get there... I’ve been able to see over and over the dance I do with the Lord where I add things to my to-do list, research and plan, then inevitably freak out, and as I feel totally overwhelmed, give the pieces left of me over to God, and He puts the pieces back together by reminding me of just how big He is, and how big his plans are for me, and that He may be asking me to trust beyond what I think I’m capable of... but that He will always give me His strength and comfort when I don’t have any more of my own. Some days I feel stronger than ever, and other days I’m just scraping by. I heard a song that has a line that I love: “life is not a snapshot”, and that is so true of this season! It helps during the times when I’m feeling anxious and overwhelmed to recognize that this isn’t the whole picture of my life or my relationship with God, or my mental health! I’m going to have hard moments because this is a hard thing!! I’m so grateful for my amazing husband. My favorite interaction recently was when I was feeling particularly vulnerable and shared with Kevin “what if God knows I can’t handle seeing her uncomfortable or hurting in the hospital, so He takes her before she’s born because He knows it’s more than I can do?” His response was just to throw out another what-if scenario.... “what if God’s plan is for her to live so that God can show us that He’s the one getting us through”. Oh man, there’s that perspective shift again, thank you husband!🥰
At 3pm we’ll go to get a growth check ultrasound to see how Annelise is growing. I can’t wait to see her!
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