Tuesday, May 1, 2012

Patience Pump

Sometimes we forget that Elise was born 15 weeks too early. We also forget that she came out weighing one pound five ounces and was on a ventilator for her first 34 days. Eighty-three days later she weighs four pounds five ounces and requires a little high flow nasal cannula. Although she has traveled many 'miles' in life already, she still is very small and actually should be cooking in the womb for another 2-3 weeks. We forget these (major) points about her because she is a remarkable baby who has made a tremendous amount of progress in 83 days. Simply a miracle. Our miracle.

To add to the joy of her being a miracle, Elise is such a wonderful baby.  She snoozes quietly or has her bright eyes open, looking all around and taking in her surroundings. If she does cry, she is easily calmed down once she is cuddled in some one's arms or tucked in her crib.

Lately, she has been very fussy and irritable. After a day of watching her behaviors (arching her back, crying out when nothing was physically wrong, lots of squirming while being held, etc), we were alarmed to think that her reflux could possibly be worsening. We shared our concerns with Dr. Pyle today and he and the nurses agreed that she hasn't been herself lately. Dr. Pyle ordered a swallow study to check and make sure that when Elise swallows, the milk is going down her esophagus and into her belly. The fear would be that the milk is going down her trachea and into her lungs. This is called aspirating. For adults, this would be similar to getting a piece of food stuck in your windpipe. After you cough and cough and finally get it out of your windpipe and down your esophagus, your windpipe burns and you feel discomfort. Now picture yourself having this problem every time you eat. Eventually, you would not want to put anything in your mouth for fear you would feel that discomfort all over again.

Our fear came true today. I quote Dr. Pyle: "It was a horrible, horrible swallow study. She is taking all the milk straight down her windpipe and into her lungs." During the study, they tested Elise with 3 different thicknesses of milk. The thin milk and the medium thickness went straight down her trachea. The thickest milk (think molasses) successfully did go down her esophagus. Consequently, Elise's feeds now need to be thickened. The doctors can do this, but they cannot thicken breast milk...only formula. Sad news for this momma...my milk will need to be put on the back burner for as long as Elise needs her feeds thickened. However, if this is what will make Elise stronger and get her closer to going home....give her the damn formula!

Although you can tell I'm still quite small, I'm certainly mighty! 

The promising news is Elise WILL grow out of this. It's another "preemie thing." In full term babies, their muscles are strong enough that they close off their tracheas while swallowing. Elise hasn't coordinated that...but she WILL. Finding out this issue will obviously help the feedings, but it will also help the oxygen. Dr. Pyle wants Elise to rest and recover until Monday. At that point, we will slowly start introducing bottles with the thickened milk and see how she does. It is the hope of the doctors (and us) that once the aspiration issue has resolved, she will need way less oxygen support than she does now. It is possible in a couple of weeks that Elise could be respiratory support FREE.

All of this news from today is probably pushing our "going home" date to late May now. We are certainly glad we found out this news today at 37 weeks versus 40 weeks. Nothing like being just days away from going home only to hear you've got a couple more weeks to go. That would be heartbreaking times ten. We already know we have a couple of weeks to go...this just adds more time. We also don't want Elise acquiring a food aversion. We want bottle feeding or breastfeeding to be positive experiences for her so she will continue to want to take food and drink orally. Quite honestly, we figured some not-so-good news was heading our way due to her being extremely fussy and irritable the last few days. All in all, it was good that we figured out the issue today and can get her and her poor trachea some relief.

The teacher in me wants to teach my daughter how to swallow. It comes so natural for us adults. Maybe I should draw some color-coordinated visuals and we should practice daily?

Humor aside, she will get there...and mommy and daddy will too. Lately as parents, we feel like we are taking part in a game of Tetris, and in this game the blocks are piling up out of control. We are relieved to have answers, but we are going to have to take our patient mind-sets and kick them into over-drive.

I wish there was a pump that would give you patience when you press a button, similar to the pain pump I had after my caesarian section. Every time the button is pushed, an extra dose of patience travels into your heart and mind. Anyone else want to join me in pressing the patience button?

How could you not gain a little patience just by seeing this?! 


G & J & E

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