The ultrasound appointment yesterday for Annelise didn’t bring to light any new issues, so for that, we’re very grateful! She’s measuring small, an average of 3 weeks behind where other typical babies are at, growth wise. Her head size is the smallest, 4 weeks behind as far as the expected size for 24 weeks gestational age. This gives us a direction for prayer. I’d love to see her growth catch up a little by the next appointment, scheduled for April 11th, at 3pm. We’re also praying for her lungs as they develop blood vessels and air sacs. The Spina Bifida is more visible now that she is growing. My prayer is for that to just disappear... that seems the simplest solution to me! But if not, then I’d love Annelise to be born with strong lungs and a heart that wouldn’t impede a surgery to repair the Spina Bifida issue. She has a list of medical issues to assess/deal with after delivery, and a list of issues that make the actual delivery impossible to predict. Kevin and I have been discussing our choice of doctors, and how to get access to surgeons before she’s born. Our doctor’s meeting with the Long Beach Memorial team was postponed until April, but we are on the list. Once he presents Annelise’s case, he will get recommendations and feedback from surgeons who may be called upon to work on Annelise at some point.
This situation makes me feel so out of control. We’re going to look into finding out if we can also present a case for Annelise at CHOC, a little farther away, to see what their surgeons recommend as a second opinion. We’ve already experienced that the medical field in general (not everyone, thankfully!!) has what can only be described as different opinions as far as the best way to treat a child with a Trisomy 18 diagnosis. We are looking for surgeons and specialists who have the opinion that Annelise’s life matters because she has a life, regardless of the physical and cognitive limitations that she would also live with. The Lord helped take some control issues from my heart during the ultrasound. Annelise was so busy moving around that the regular ultrasound images weren’t super clear. I told our ultrasound tech (the one we had the first few times, a treasure of a human, thank you Lord!) that we had people praying for us and I like to add an ultrasound picture to each blog. She couldn’t get a really clear shot, so she surprised us by switching to a 3D image! Seeing that babe’s little nose, and tiny ears, with her hand on her forehead, which is how Kevin often sleeps!☺️ was so incredible. What a powerful visual that was that just took all my “am I enough for this?” feelings and wanting to know exactly what to expect... in that moment and every time I look at that picture, I just love that baby girl so much. I’m reminded that she’s a gift just for being her... medical issues and all, for however long God has designed for her to be with us. And once again, my anxieties are emptied and again I’m filled up with knowing that the Lord sees me as His precious child too, regardless of all the mess and baggage that I carry with me too. We can do this because we aren’t doing it alone.
In addition to the ways my faith in God’s sovereignty has grown this past month, I continue to be reminded that we aren’t alone in this by the beautiful people in our community, and even further, by the people who make up our people’s communities too! I’ve been loaned helpful books that people found while going through their own season of loss to help us navigate the intensity of this season. Sweet handmade gifts, and words of Godly encouragement have come our way from people we haven’t even met, but that do life with our family and are holding us and our sweet baby up in prayer. Talk about seeing the Lord work! The community of parents of babies with Trisomy 18 has also been amazing. I’ve learned so much from the rare trisomy parents page that I joined on facebook. Through that page we got connected to a family nearby who has a 3-year-old living with Trisomy 18. We’re planning to meet them next weekend!
I still have the whole range of emotions on kind of a rotating wheel of feelings. This week, in an attempt to become more familiar with the hospital we’re planning to deliver at... I signed us up for a metenity orientation meeting. It ended up being over an hour of information for typical birth experiences... I’ve worked hard to consciously not compare my pregnancy to others’, and it has been thankfully easy to go to my friends’ baby showers and be overjoyed for the healthy miracles that the Lord has blessed them with. It was not the best environment to sit and listen to all of the experiences that we won’t have at delivery, because our blessing includes medical hurdles and we don’t know what the circumstances will be when we get to meet our daughter. We made it through though, and now I know to contact NICU people to get a more realistic picture of what might be in store for us. The negative feelings are as valid and real as the optimistic and joyful ones. I’m getting more used to managing the ups and downs as they come. I appreciate the friends and family I have that encourage me to have all of my feelings, and don’t rush me through, and who are going through this with us. Thank you!❤️
