We are home! For being only 6 days post op she is doing amazing. We are trying to make things as easy as possible for her around the house as her mobility is slightly hampered. She is not allowed to raise both arms above her head or use both arms at the same time to support herself. She also is not allowed to lay on her belly. So lots of step stools and low tables. We got out the training potty so that she doesn't have to climb up to the toilet every time she has to go. We don't want her holding it and waiting to go just because it's hard to get there! We just want to make things as easy as possible for her because we also don't want her to try and do things she isn't ready for yet. She will get up and walk around and play. She played beads and drawing. But we are also having a lot of TV time on the couch. She is still a little bit shaky on her feet sometimes so I try to keep an eye on her at all times. She doesn't like taking her medicine but she will with some coaxing. Part of the Fontan recovery is stomach ache and intestinal issues. The change in her circulation this time affects the lower half of the body and causes different issues. So getting her to eat has been an issue. Now she will eat but small portions and snacks. She is starting to feel better but still gets tummy aches and gassy. I think the gas has been the most painful thing lately. But that is a blessing! She rarely seems bothered in her chest and ibuprofen has been managing that pain well. It seems like her incisions scare her more that hurt her. They are a little itchy and that reminds her that they are there. Taking the bandaids, sticker and tape off was traumatic for her so we are trying not to put anything over her scabs and bruises by just wearing long sleeves.
Yesterday she took a bath and was a little scared that it would hurt her but she did fine and I feel better now that she is clean! She didn't sleep well last night because she kept saying she was scared. This is actually normal for her but we were hoping she would be so tired she wouldn't even wake up. I think she is more scared than normal and waking up more times at night than normal. She liked having one of us sleep in her room with her at the hospital. Pray we get back to normal routine.
The boys have been good with her. They like all the extra TV time! Nora took a little while to warm up to us when we got home. So much changes in a week when you are not even 1 yet. She seems so much bigger and different. She is getting much more independent, or I should say thinking she is independent! It is hard to keep an eye on this super mobile baby and also give Maelyn the extra care she needs. We were told that two weeks post op her incision is considered healed, and six weeks post op her bone is considered healed. So September 12 is the magic date when she is considered recovered and all of her restrictions are lifted. Just in time for back to school to be in full swing!
If you've read this far you care about us and how Maelyn is doing. And if you care about Maelyn and have been praying for her I want you to understand one thing. This surgery didn't really "fix" her, she still only has half a heart. The series of surgeries are palliative care for complex congenital heart defects. It will give her better quality of life and longer life, but it is not a fix. There is nothing else to do now but watch and wait. And if something comes up, we figure out what to do. The older she gets, the bigger she gets, the more pressure on her heart and lungs, the more risk of complications. This circulation has also been linked to liver damage and increases risk of stoke. She will be on heart medication and closely followed by cardiologist her whole life. She is part of a small but growing population of people with this type of circulation, so research is still being done to figure out what the best course of action is and what the length and quality of life will be. Maelyn is one of the best cases and doing remarkably well. We have no reason to expect any future problems or complications but she still is and will always be considered medically fragile. Her situation can easily become critical and complicated. So we pray everyday that God would protect her can keep her heart healthy and functioning perfectly. We know God created her and gave her this heart and we don't know why, but we trust in his plan for her. We pray that he would help us to parent her and her siblings and that we would be able to get her the medical help she needs.
