We’re back at it sitting with Annelise in the hospital. Waiting for rounds to happen. Every day sometime between 9:30-11:30 we go to a conference room with the nurse, neonatologist, nurse practitioner, and sometimes other specialists like the nutritionist and respiratory therapist, to talk about Annelise’s case. Every baby on the 4th floor NICU has a spot in rounds, and we’re usually either one of the first, or one of the last people to go, depending on which end of the NICU they start with. Today they started with the other end... so we’re still waiting for them to get to us.
Yesterday, before rounds happened, the neurosurgeon that performed Annelise’s repair of the Spina bifida opening (myelomeningocele for those of you that like technical terms) came to talk to Kevin and I about the results of her head ultrasound. They can see that the ventricles in her brain are growing slowly in size, so since that means she’ll need a shunt at some point... they want to schedule it now when she is relatively healthy with no infections like a UTI... because if she got an infection, that would postpone the surgery, and they wouldn’t want the situation to turn into an emergency situation. As I’m typing this, the neurosurgeon came by again and said she’s penciled in for shunt surgery on Monday at noon!
Kevin and I were talking about how there’s so much we don’t know about what she needs medically. So what do we ask for specifically in prayer? We know God answers prayer always... so our answer could be a yes, a no, or a wait. I forget about the “wait” option sometimes. I remember not being entirely happy and patient about the waiting for someone to share my life with before I met Kevin... if I had known who I was waiting for all those years, it would have been much easier to wait! I had no idea where my choices and circumstances were going to lead me, but God knew! The feeling is similar now because we don’t know what to expect with Annelise’s story... but God does! I keep thinking that this shunt surgery could be one of those blessings in disguise. The idea of something so large that it can be seen as a lump under her skin on her head is really undesirable to me... but what if it makes her feel more comfortable, and what if being intubated again for awhile helps her to grow? If it’s something that will be good... and it IS so good that modern medicine exists so this fix is even an option for her... and it IS so good that we’re here in Omaha where the specialists see her as the valuable person that she is, and don’t hesitate to perform the same surgeries on her that they would give to any typical child with a closed myelomeningocele.... then if I’m spending so much time praying that she doesn’t need the shunt, I’m using all this energy to ask that something good not take place for her!
So specifically, but a little bit generally, since I have such a limited perspective on her medical needs, and the Lord knows everything, we’re praying for God to intervene in a way that will lead to health for Annelise’s brain, lungs, and keep any infection away, and for wisdom for her medical team and Kevin and I to determine what the next steps will be for her. I want to bring my requests to the Lord, for no surgery, but I also want to live in a place where I trust God first, and keep talking to Him, and letting Him do the carrying of our hearts, instead of trying to use my mental and emotional energy to carry us through. I have limited emotional and mental capacity for the intense measure of this situation! That has become apparent! Sleep and time with my hubby definitely helped me last night, and having a cuddle with my little one while listening to worship music helped end yesterday on a good note. I’ll leave you with the two songs that really helped repair the leak in my soul yesterday. The “breath back” YouTube video is one that speaks so closely to where we’re at and where I want to be, and I wouldn’t know about it if not for another mama friend that I met here!
Another reason Omaha is so amazing, is the people we are connecting with who are walking a similar walk with their babies too.
It really helps to have a growing community around us that stretches from home to Omaha, and wherever our people are all over the states and even abroad! 🥰💖🥰
Here’s the update from Sarah Catherine’s mama:
“Sarah Catherine is enjoying her new room and old friends here in the PICU today. She had a few heart rate fluctuations overnight and we stuck by her like glue. No code events so far this time. The morning x-rays show her lungs to be a little cloudy, but expected post heart surgery. Her cardiac surgeon came in this morning and continues to be pleased. He wants her off the vent ASAP. We sit and wait for her to dictate next steps. They are weaning her support slowly working toward extubation as soon as is safe. They also continue to wean off sedation, but again, they are following her lead. We have seen God work in miraculous ways this week. Please keep her covered in prayer.”
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