Wednesday, July 14, 2010

Wednesday Again

Saturday night Natalie's O2 requirements climbed overnight. She went from consistently being in the low 30's back to the 50's. Since Saturday she has been in the mid 40's to 60's. It was a big disappointment but I am reminding myself of how much higher those numbers can be. Sunday her CO2 was crazy. We got the morning update and I immediately dressed and went to the hospital. Her ET tube was 11 days old and I knew it needed changing. I was not leaving the hospital until it was done. Her tube was changed, it was "gunky" and the CO2 came right back down. Unfortunately this was the first time there was difficulty reintubating her. Just one more reason for us to anxiously await the day she can have a trach.

There is no explanation for why her Os were so good when her stomach was so bad. One doctor had a theory that while her body was mounting its response to the NEC her adrenal glands released high levels of natural steroids and the steroids helped her lungs as steroids will do. It's a theory but not one that can be proven and it also does no mean she should go back on steroids. Steroids leave her vulnerable to infection and can actually slow lung growth.

Her perfusion has improved over the past few days. I was feeling frustrated by her getting lasix, having poor perfusion and then needing a bolus of fluid to improve things. What exactly is the point of chasing fluid out only to replace it a few hours later? Eventually things were reevaluated and her perfusion was checked BEFORE she received lasix. She missed a few doses and did not need the boluses. Yeah for logic!

Her drains are letting out some yellowish fluid. It does not look like pus or anything infection related. The surgeons are happy with how her belly is soft and the redness has cleared up.

Well, you know I have been anxiously awaiting the MAP being turned down. This has been postponed every day for nearly 2 weeks. Natalie is just not going to give a perfect day for weaning.

Yesterday she had another cut down to place a new central line. During all the X-rays to check line placement they felt her lungs looked very expanded and agreed to try for a one point reduction in MAP. She seems to have tolerated it well.

Today will be a chest X-ray and belly X-ray. Hopefully all looks great and we can get some reassuring news.

Sorry this is so choppy. Mostly she is stable and we are waiting to see what her belly does. The surgeon is mostly concerned with her clinical signs and feels the next big step will be a bowel movement. That can take up to another week or more, especially with all the sedation she is on. I swear when she does dirty a diaper we may go out for dinner to celebrate.

As for her respiratory status, that too is wait and see. They are holding nitric oxide weanings for the time being. Hopefully she can manage a few more weans in MAP. Her CO2s have been all over the place but nothing crazy.

In other news, Natalie has lost her hair and now has a big, beautiful and lumpy head. The lumps are unavoidable because of being in bed all the time but I have promised her the reshaping helmets even if we have to take out a loan. I will not make her go through life with a wonky head. At any rate, the bald look is pretty darn cute and I love to rub her head.


  1. I think about you everyday sweet sweet lady. I cry for you and my heart is so heavy. I just cant imagine what you are going through. I wish I could be there to help in any way I could. Please email me if you ever need an ear. Love and hugs your way

  2. Still praying for all! Reassuring that they were able to reduce the MAP once. I pray it continues as long as the belly improvement. So weird how we pray for poops, right? Maybe now her hair can grow in even. Im sure they have shaved or pulled some out placing the head IVs. Ugh!

  3. You need to have them get you a soft rubber round thing that sits under the head with a hole in it like a flat doughnut on one side and the round part on the other. I can not think what it is called but it's like a pink mushy yet firm rubber and it will keep her head from being to flat. Insist on rolling her from side to side as much as is possible. We even did tummy time with a trach but with drain tubes and NEC it might have to wait. Keep hanging on your are doing great. I will try to find out the name of it.

  4. Your sweet baby girl has been on my mind constantly this past week. It sounds to me that even though she's still in shaky territory, things are looking up...and that just means our prayers are being answered. Hang in there, you are one amazing mama. Lots of love coming your way!

  5. Bald is beautiful Natters! Love and prayers your way!