Hi, everyone. My name is Morgan and I am respectfully requesting your help in blessing the Marx-Steinke family as they continue their time in the hospital with their newest babe, Liam. Emilie's maternity leave is coming to an end soon and Liam's time in the hospital continues as his team works hard for him and plans his thoracotomy. Every little blessing we can share will help them to be able to relax and just focus on pouring God's love into Liam and his surgical team's lives. How can you look at that beautiful smile and not want to help? I know that times are REALLY tough for everyone right now but a bunch of smaller donations will make a huge impact. If you want to share directly without fees, please contact me and I can give you their information.
As always, PRAYERS are needed for the whole family!
From Emilie:
Liam came into the world in a fury on June 9th, and his strong energy would stand to serve him as the first few months of his little life are a little tougher than we thought they might be! Liam has Down syndrome, heart defects (AV canal defect: missing the tissue that normally separates the right and left sides of the heart, PDA: hole in the aorta that can cause too much blood to flow to the lungs, and narrowing of the aorta which is borderline coarctation - still figuring this out), right club foot: achilles tendon is too short causing the foot to turn inward and upward). Babies with down syndrome often have low muscle tone and can take longer to learn how to do certain things like eating and other developmental milestones like rolling over, sitting up, walking, talking, etc.
Liam went in for g-tube placement and tenotomy at Riley on Friday, August 26th. A g-tube is a feeding tube so he can get the tube out of his nose (yay!)). A tenotomy procedure involves cutting a tendon is his right foot to help loosen it and make it move a bit better. Both surgeries went well, but he started having fevers after surgery and the doctors couldn't figure out why. Then, he required a little more help breathing and was transferred to the CICU (cardiac intensive care unit), so the heart doctors could pay special attention to him since he has heart defects. They were wondering if the pressure inside his pulmonary vessels (they take blood to the lungs) were too high, and wanted to get a better look at his heart defects to see if maybe this was part of why he needed extra help breathing.
So on Wednesday, Liam had a heart cath, which is a procedure where the doctors put a small flexible tube in a blood vessel to measure the pressure and do other things. They had planned to ligate or close his PDA, but the doctor felt that there was significant enough narrowing of the aorta that he didn't feel comfortable putting in the device to ligate or close the PDA.
The good news is that his pulmonary pressures were only slightly elevated! The not-so-great news is that Liam will likely need some sort of intervention for the narrowing of his aorta, and they weren't able to close the PDA during the cath, so he will need a different procedure do to this. This is called a thoracotomy, where they make an incision in the side of his chest which lets them directly see the defect and fix it.
They were not able to get the breathing tube out right away after his heart cath because of some swelling in his throat, but they did eventually, and now he is back on high flow (no oxygen, but helps push the air through his somewhat floppy airway) to help him breathe. He doesn't like the high flow, and it's really hard for Emilie to see him uncomfortable and mad, so we request prayers for comfort for both of them!
Brian is holding down the fort at home with Charlotte and fur babies and working really hard. They have mastered the divide and conquer, but things have gotten harder since Liam is unexpectedly in the hospital for an extended period of time, so we ask for prayers for strength and guidance! There are no words to express how grateful Em and Brian are for all the support they have received so far from friends and family (especially Baba, Gaga, and Boppa!).
