Tuesday we had our first of many appointments at Children’s Mercy Hospital after the initial referral to make Layla’s diagnosis. It was over 4 hours long. Needless to say we covered a lot of ground and got a lot of information.
The main things we learned about our adventure ahead –
- Other than her heart condition, she appears to be very healthy. She’s growing at a great rate (which is a concern with the single artery umbilical cord), all other organs and circulatory functions look to be working great, and she’s moving and “practice breathing” just as she should be. She’s a little badass, basically, much like her sister! They surprised me with a 3D ultrasound where I got to peek at her face – I cried. I was overjoyed to see her familiar features – she already looks so much like Skyler as a baby! She’s so real and chubby and adorable. Not that I didn’t love her already but I fell in love and it brought some much needed joy to this otherwise scary situation.
- Due to her current healthy growth rate, my OB suggested it’s likely they would schedule labor induction around 39 weeks so they could plan for her arrival and have the full medical staff ready for her so she gets off to the smoothest start. This could change – we will know more at another big appointment scheduled early October. As long as it’s the healthiest thing for Layla, the planner in me loves the idea of induction. We have a lot of nerves about all this on top of just bringing a new person into our family, and it’s gonna shake up our lifestyle and routine for quite awhile. This helps us plan and make sure things at work and at home with Skyler can be coordinated. Super relieving so fingers crossed on this part!
- We toured the delivery rooms and NICU and learned a lot about logistics for those first few days prior to her surgery. When she’s born, they will be able to do a lot of the work they need to do with her in an adjoining room with glass sliders that I’ll be able to see from my bed. Ronnie will be able to go over there and observe, but I’ll be stuck for the first couple hours after delivery. They said it usually takes a few hours to get her tested and situated and stable and then they can bring her back to me for 30 minutes or so before sending her off to stay in the NICU. As I’m up for it, I’ll have 24-7 access to her in the NICU (as will Ronnie), where there is a recliner next to her station and a curtain to pull for privacy. She’ll stay in the NICU till surgery day, which is likely near the end of the first week. After surgery she’ll go to the PICU, and then at some point be released from the PICU to a regular patient room for the remainder of her recovery. We will learn more about her surgery and recovery in early October when we meet with the surgeon and NICU staff.Seeing how things are setup helped to clarify a lot of questions for me and provide some expectations so I don’t get my hopes up and find myself disappointed. However, now I am preparing for a very emotionally and physically demanding first week with her, on top of what a regular birth would entail. I can no longer put much hope in bonding with her in the ways a healthy mother and healthy baby can – our proximity and time and comfort will be limited. I’m thankful for the setup they have and for technology and it is all what it must be for her sake, but after carrying her this long and clinging to the hope of holding her close outside my body to help as I cope with the discomforts of pregnancy, realizing that reward is going to be diminished and/or delayed is something I’m really struggling with. I have to relinquish being her primary source of survival, and not even in the joyful way of sharing her care with my husband in a normal post-partum time. It’s clinical and outside of our control. It’s scary and uncomfortable. And I know enough about physiology and hormones and the things that happen between a mother and baby when they have close physical contact and nursing to know that some level of these benefits will be sacrificed just so she can survive. It’s all one big confusing but necessary mess and all I can do is give it to God. I cry about this one a LOT and when I’m hurting and uncomfortable in my skin as her growth stretches my abdominals and makes me want to rip out my ribcage, I stop and remember how close we are, and right now I am her survival and take joy in being that, as much as it hurts.
- We learned they close the hospital patient rooms to visiting children during cold and flu season (October – March). So Skyler will not be able to come meet or visit her new sister at any point while we are there. This too breaks my heart. Skyler is so excited to meet her and tickle her feet as she just said yesterday. We haven’t broken this news to her yet. I know it’s temporary but I also have fears – what if something goes horribly wrong and she never gets to meet her? I know I should stop with the what if’s but I can’t help where my mind goes. Again, I just have to give it to God as it’s out of my control. We will definitely do as much Skype with Skyler and Layla so she can see what things are like there and see her sister, but it’s just going to make it that much harder on all of us.
- Finally, maybe the craziest thing about this so far, is we met with the genetics counselor (who happens to be a friend from highschool), and basically they can’t find any connection or reason why we would have two babies with heart defects, and that their two heart defects are completely unrelated. It’s like lightning striking the same place twice, in a place that isn’t known for thunderstorms! Admittedly, she said the field of genetics is in its infancy and maybe someday they will be able to know the causes for our girls’ heart issues, but for now, it’s a mystery as to why either of them happened, in addition to why we went two for two with kids with special hearts. I honestly don’t know how I feel about this. We are blessed? We are cursed? We are chosen? I do believe God has a plan for everyone and this all fits into that but I don’t know why yet. I know I don’t have to know why yet and I do have faith in this journey as all my previous adventures have brought me to where I am today and I wouldn’t change a thing. But, it’s just mind-blowing right now that the smart people can’t connect these heart issues to anything – not environmental, not anything I did, nor anything about Ronnie’s and my family health history. We aren’t meant to know it all but it just seems like there would be something to make this all make sense, even if just a loose theory…
So there’s my puke of information and emotions for now. I’m exhausted. It’s time for a relaxing bath, since I can’t have wine and sleeping isn’t really that comfy either. And I probably shouldn’t be allowed to write when I’m grumpy but maybe it’s therapeutic too. Signing off!