So baby girl is three weeks and 1 day old .. I must apologize for such a long time since the last update. Its really difficult to keep you guys up to date. She will have a wonderful day and just as Im ready to write a post we will have a bit of a set back. With Nicu babies and any human for that matter there is no perfect formula that will work for everyone. This is a very true statement in Olivia's case, but let me start with all the wonderful progress that she has made. I am very pleased to announce that she is now 2lbs 4oz. It has taken a lot of discomfort and work on her part getting to this number so Im very proud of her. You should see her Daddy and I when they are weighing her (this is a very unique process they actually leave her in her incubator, technology really is amazing). We are both holding our breath and loud cheers errupt even if she only gains a few grams lol. They are literally force feeding her one nurse explained it to us, she said "imagine having Thanksgiving every meal". Her Daddy described her as looking like an African Bushmen. Oh her arms and legs are so skinny and her poor belly is so big. She really looks so uncomfortable. I have questioned every single doctor and nurse asking them if it just might be too much food. Dont worry I never over step my boundaries and I totally respect every person that works with her its just difficult to see her to uncomfortable. The theory behind this force feeding is the importance of the nutrition for brain and bone development. This obviously takes higher priority over discomfort which is understandable. It doesnt make it any easier to water her gagging and spitting up all the time.
She is now breathing 20-21% oxygen which is room air just like what you and I breath. Amazing progress for only being 30 weeks gestational age. Her lungs are clear and completely open which I am so very thankful for this is not usually the case in babies of her age and size. She is still wearing what they call a high flow nasal cannula. This machine creates pressure and pushes the air into her lungs it on 3 1/2 Liters per Min. All this being said she is breathing very well most of the time, but she is still having the appenic spells. They have now decided that these spells are directly related to her feedings. She becomes so full and begins having reflux. She intentionally closes her air way to protect it as this is happening. Unfortunately some times she forgets to start breathing again. She has had many incidents where she self recovers but there are a few times that the nurse or myself have to get in there and stimulate her reminding her to take a deep breath. While we were there the other day she started having an incident alarms are going off like crazy I went to reach in to wake her and the nurse said "No no let her try to recover on her own" honestly the longest 12 seconds of my life. Looking at her not seeing that little chest heave up and down with breath and watching the numbers drop was terrifying but again I must put trust in the professionals taking care of her and I did what I was told. She did self recover and was fine after that. As of yesterday they started spreading her feedings out over 2 1/2 hours in hopes that she will have less appenic spells. Now keep in mind she gets fed every 3 hours so there is only a short 30 min window that my poor girl isnt getting stuffed with food. Again all of this stuff is trial and error and its just a matter of trying different things until we find what works for her. A very frustrating and emotionally draining process but the doctors have told us that she should out grow this and in 4 weeks will be a lot more comfortable. Until then I am really trying to stay focused on the positive and not dwell on what we cant change. Yesterday a friend of mine said "Aleesha I honestly dont know how you are holding it together and havent completely fallen apart" "Falling apart is not an option Olivia needs a Mom and not just any Mom she needs one that is strong and believes in her and believes in the process that we are going threw, that envisions the future that lies ahead of all of us, and most of all that loves her unconditionally and will never give up...."
So often you hear parents say "I would die for my children" this is a powerful statement, but I would challenge it and say "You should "live" for your children.... Live the fullest happiest life possible for them, they need you here alive and well to love and teach them"
ReplyDeleteMy thought and prayers are with you Aleesha and your family.
ReplyDeleteMany strong power hugs to you from me.
Kaj