So while we had some positive news today (Riley can see, her chest sounds much better, and all that money I have been paying into Social Security and Medicare all these years may actually pay off), we will have to put today in the bad column.
Riley will most likely be a candidate for a G-Tube - this is the feeding tube that will be surgically put directly into her stomach. That isn't bad and we were expecting and hoping for it - the problem is she has to be 4 kilos or over 8 pounds to receive this type of surgery. She is currently 2.5 kilos and around 5lbs 10oz. There are 16oz in every pound so she has over 38 oz to go. On her best day so far she gained 1.2oz. This all means that our new little girl will be spending at least the next month in the NICU. We can't even attempt the surgery until she reaches this weight, so if she is anything like Zoey (who eats like me and is somehow rail thing) it may be much much longer then a month. If her reflux does not fix itself by then (which the doctor says it may) then they would also have to tighten her stomach's upper sphincter. In about two months we will try another eating test, but most likely her swallowing problem are an issue with her palate that can only be corrected by surgery - and we have no idea when that would be.
This was obviously a devastating blow to Michele and I. We so desperately want to have our newest little girl home with us and celebrate her joining our family and it is yet again pushed away. This is another month of having people telling us it is going to be alright - when they don't know that, the doctors don't know that. This is another month of trying to beat traffic down 400 so I can hold my little flower in the morning when she wakes up. This is another month of seeing my wife cry every single day. This is another month of watching another new baby being put into someone else's car and having to watch it over and over and over again - I never knew that your heart could break so much when you are watching something so joyous. This is another month of my Riley smelling like alcohol rub instead of like a baby. This is another month of having to worry about how long a tube is or is it going to get hooked on something and rip it out of her little body. This is another month of not being able to dance with my daughter. This is another month of trying to explain to Zoey why her little sister isn't here. This is Riley's first Halloween being in a hospital bed instead of with me in her stroller. This is another month or more of my heart breaking every time I have to leave her.
I will continue to spend every minute that I can spare in my life with my newest daughter, but I honestly don't know how much longer my heart can take leaving her in that hospital every night and every day. I'm crying as I write this, not because of the next month of this hospital stay, but because these are just the tip of the iceberg when it comes to my newest little ones' days in hospitals - for those keeping track in the foreseeable future she needs to have a feeding tube surgically placed in her, open heart surgery, and something done to her palate (I don't imagine any of those are outpatient type procedures). I had to ask a doctor today if my daughter was ever going to be able to eat an apple and her answer was she hoped so.....what type of a question is that for a father to have to ask about his newborn?
Thank you again for the wonderful thoughts and even some gifts - we apologize for not having gotten any thank you cards out yet, know that in our hearts we are phenomenally thankful for everything.
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