recovery

We are 2 days out from Sol's surgery, almost 3, and they plan to do his first trach change tomorrow morning. After the first trach change we can start holding him and start doing his cares to prepare for going home, this could still be another month because we will have to wait until he is at a certain weight.

Recovery has been going up and down for little Sol... He has needed some stronger drugs off and on, docs were considering doing another blood transfusion because his hemoglobin was low the day after surgery, we decided to wait and see how he bounced back instead. He was started back on his feeds yesterday and at 6pm tonight is back on full feeds. They were concerned about his lack of peeing and wanted to try doing a catheter. I strongly requested to not because with lua they threatened to do the same thing and at the last minute she peed, so now he has been on track with peeing, his system seems to be starting up and now they are waiting for a good size poop to seal the deal.

But it is hard to see him in pain and discomfort :( . This evening as he was having ups and downs, I tried comforting him as much as i could and around 6pm he got pretty comfy and fell into a nice sleep. Thiago said I comforted him better than morphine! But that only lasted for an hour, after we left we heard he was really uncomfortable and got another dose of some meds. I hope he starts feeling better soon, it is just so hard to see my 2 week old baby in pain, it is beyond unfair!

On a side note, we received a very generous gift from our home church, the congregation did an offering for our family and gave us a very generous donation. I much rather our family not be in this situation to need anything, but since we find ourselves here yet again, it is really touching to know people care for us. For that we thank everyone there so much for all the support and prayers!

I have found this second time journey to be one that is a little more lonely. I have talked to a few people and most of them tell me the truth which is they just dont know what to say. They can't believe this happened to us again and no one has any words for us. Workers at the hospital, that help support parents, don't even know what to say to us. They mostly apologize that we have to go through this again and they admit they don't even know what to say. I don't have much to say either. The hope was, although we knew he was affected, we were hoping the condition would have manifested differently leaving him in better condition. That was the big hope from me, but he is very identical to lua so that didn't happen. Oh well, it is what it is now. He is here and we have to get over it because he deserves the best quality of life that he can get. This makes me nervous, though, because I am not sure if I can give him the best life he can have, although we have better doctors and better tools this time, I am still nervous because I already failed once. Regardless of us not having the right doctors and equipment, I would think a mother just knows better and I can't believe I didn't know best for her. It just makes me nervous to do this again.

I don't think I believe everything happens for a reason, something everyone tells me. I think we had bad luck, unfortunate events, bad genes, and that is just the way it went. I don't think I'm a strong parent, another thing people keep saying. I am just going day by day trying to get by doing what all the other trach parents and families have to put up with, that doesn't make me a 'strong parent', just makes me/us parents, doing what we have to do for our kids that every other parent would do if they found themselves in the same situation. There are other things people, doctors, have said to me that I disagree with and dislike hearing, but I know it is mostly because no one knows what to say. No one knows how to make sense of what has happened, and I don't know how to either, so I understand, and hope others understand why some things we say to people that we think makes them feel better, really doesn't help. One of the best things to say is I'm sorry you are going through this. Or I personally like, congratulations on your baby boy. It is still a big deal to have this little miracle even though he comes with challenges. This last week someone told me that when they were in genetics class, they were told only 3% of babies with genetic issues are even born. Mostly they end up being miscarriages. She said when she heard that it amazed her, these babies that make it through have something extra or special that has made them fight enough to be born. I have had 2 of the strongest babies there are then. They could have easily been miscarriages but there is something extra in, well all of my kids, that make them fight a little more. Not to say anyone else's kids dont have that, but hey I have babies that dont grow skeletal muscle so I think I get the right to brag on them and their extra special something.

I am hoping little sully (may has been calling him this) is feeling better in the morning. I just can't stand seeing his little face crying from being in pain anymore!! I even yelled at a nurse practitioner last night for almost pulling his legs up..... no more! I want no more pain put on him anymore!!!