This week we were busy finishing up everything that needs to be done before we can get discharged. We needed to do a car seat trial, I needed to do 24 hour cares with him, and also a road trip. Today we finished everything off that list. Wednesday I spent 24 hours with sol, thiago did his last weekend. What it is, is we spend 24 hours with him using all our home equipment and doing everything for him with out having nurses to remind us or do it for us. Both mine and thaigos cares went fine, nothing interesting, just a little exhausting. I actually spent 32 hours with him, getting maybe 3 hours of sleep since people kept coming in and I needed to pump and do his feeds. So what this care taught me is that we will need to do something a little different for his overnight feed. We decided on a feeding pump, we would need it if he gets sick anyways, and hope this will help us all get sleep. He sleeps HARD, he goes out at 8 and he doesn't wake for anything until 6am, so he's a good sleeper. I thank the nicu for that!
Today we did our road trip. It went well! Much better than the first time we took lua out... Soooo much better. We decided to keep him on the vent, I felt it would be easier for him and not exhausted him out with all the new things he would have to be tolerating. Honestly it was a good idea, we had an easy trip, suctioned once, where with lua we could be suctioning every 2 mins. It makes it a lot easier for all of us to not have to be constantly suctioning. Plus, he doesn't need to be wearing himself out! That is something I learned with him this time around about the condition him and lua have, they tire out fast. He can get stronger but not if he is constantly getting worn out. This is what we did wrong with Lua. I thought she had to constantly be strong to get stronger... But really what we need to do is let him have his strong moments and when he is done, let him be done. If we keep doing that he can build endurance compared to keeping him running on fumes.
This is a lot of me just rambling, but it was an Ah ha moment for me. I'm learning more about the condition and that will only help him in the future. I still so badly wish I could have had the knowledge I have now for Lua. But still, we had a good time, we went and saw the Easter bunny and he posed with sol for us. We walked around the mall and ate some food. The problem with this little guy is he doesn't like to sleep in the car seat. He likes to look around too much, then he gets tired, then he gets cranky, then he cries. Until he falls asleep that is. Poor guy. The other problem we had is we had so much medical equipment we forgot to bring a diaper bag with diapers and wipes... So we had to head back before his diaper exploded!
Now that we have done all of that, we are talking about being able to leave the hospital Wednesday or Thursday. As long as everything keeps going well. May is sick, again, I actually took her to the ER today to get checked out. She has a upper airway virus, so as long as sol doesn't get sick from that we should be good to go. We decided to not wait on nursing because it could take 2 to 4 months before we could get it going and we cant do that, we are doing everything anyways so we will just be looking for some help from whoever until we find some nurses.
I am so happy sol is doing well, I am disappointed that we didn't do this for Lua, as I have said many times before, but sometimes I still really cant believe this happened again. It makes me feel like an inadequate parent. I know it isn't my fault this happened to them, because if I could have picked the genes they could have gotten I never would have picked those crappy genes, it just seems that having two kids like this is the universe telling you you dont deserve to have kids, at least you dont deserve to have more than 2 kids, we don't do society any good by reproducing, and it just sucks. Even if those feelings are silly, I can't help it and it can get really depressing every now and then thinking about all of this. I love the progress sol is making, I wish he didn't need to be making this progress though, that he could be a healthy happy baby. But at least I think we learned our lesson on having kids, we will let those who are successful and can actually have healthy kids do the work in making the next generation. We will stay on the sidelines.
At least we can hopefully be home soon and hope for the best from here on out.
You and Thiago are good Parents. Your children are beautiful and lots of Family's have children with special needs. It isn't fair that you had two of them and I feel that if whoever was working on your Gene make-up was doing their job properly and would have given you the correct info. this wouldn't have happened again...But your little Blessing Sol is here, and he is just the sweetest little guy. There are parents out there who wouldn't even have tried to take care of Lua or Sol. There are heartless, hideous people who call themselves parents but wont even try to help their baby's. You and Thiago are Golden. You put every ounce of love and care into your children and you are the best Parent's in the world. You think that most parent's would do this but that is not true. Think positive thoughts of yourselves...You guys amaze me and I am very proud to be related to you :) I know it sucks at times (I of course don't know how much it sucks at times) but I know you are doing what you can and that is all that is required of you. You give your children so much love and care and that is what makes an excellent Parent. I Love you guys!
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