Friday, May 18th, happened to be my actual due date for Elise. During the day on Friday, I took a moment to think about the last 3.5 months. Imagining myself still pregnant on Friday? Whoa. Imagining myself still teaching?!?! Double whoa. God certainly had a different plan for us.
Speaking of Miss E, the dilemma right now is her feedings. Ever since we found out that Elise was aspirating (swallowing food into her windpipe) during the swallow study 3 weeks ago, the nurses have been thickening four of Elise's feeds with rice cereal. Right now, she is on the thickest of the thick because her swallow study showed her aspirating on anything less than honey consistency. The doctors have slowly increased the amount of thickened milk (formula) in her bottle. However, thickened formula does not give Elise all the proper nutrition she needs. Therefore, four feeds a day are through bottles with the thickened formula and four feeds a day are on the pump with nutritious (yet thin) breast milk. It would be ideal if Elise could take all her feeds by mouth, however, the nutritious breast milk cannot be thickened. If she would take it through a bottle (instead of it going through the feeding tube directly into her stomach), she would aspirate it into her windpipe due to how thin it is.
Soooooo....Monday we are going to do a repeat swallow study to see if she can take a less thickened formula and not aspirate it. Since the first swallow study, she has gained weight, she is older, more mature, and has been practicing swallowing into her esophagus. If she can take less thickened feeds-- well then wonderful! She will be able to take all her feeds orally and get the proper nutrition. If she continues to only take the thickest of the thick on Monday during the study, then she will still need her pump feeds once she comes home.
This means Grant and I (ok, really just me since Dad knows this stuff) will have to be trained how to place a tube down her nostril that goes directly through her esophagus and on into her stomach. We are then trained on how to listen to her belly with a stethoscope and make sure we inserted the tube down her esophagus and not into her windpipe. We do not want milk going into her lungs! When I've watched the nurses do this in the NICU, of course Elise hates when the tube is inserted. Who wouldn't?
Regardless of getting this news today, we must remain thankful. We dodged a huge bullet: since Elise is doing so well off oxygen, there's a 99% chance we DO NOT have to come home on oxygen! She might be coming home on pump feeds, but HOME is in SIGHT! The last thing I want to be trained on is how to insert a tube down my daughter's nostril and hear her scream and squirm, but my best friend said it so well: "It's amazing what you will get trained on and be able to do for your child" (and might I add...It's amazing what you'll do so your child can come home from a 3 1/2 month NICU stay).
We would just have to insert the tube at night and do four feedings during the middle of the night with the tube. During the day, she can get her thickened bottles. Hopefully she will only have to do pump feeds for a few weeks to possibly one month. Then we will probably repeat the swallow study for a third time and see where she is at and what thickness of milk she can swallow safely. Inch by inch we will get there.
There is still a possibility that we MAY dodge this 'pump feed' bullet on Monday if Elise can show us she CAN take less thickened feeds and not aspirate. However, Elise's primary nurses, who know her inside and out, are not hopeful of this occurring. They think the swallow study won't show much improvement from the initial disastrous swallow study from three weeks ago, and therefore, she will be on the current plan once we come home: 4 thickened formula feeds with rice cereal through a bottle and 4 feeds of the nutritious (thin) breast milk on the pump.
The nurses and doctors are confident in me that I can learn all I need to in order to bring her home and provide her a successful environment. I just need to gain confidence in myself!
On my drive home from the NICU today, I was thinking....women need a set of ovaries AND a set of balls. I think God secretly always gives both to females. I just need to find mine so I can get over my "donotwanttohurtmychild-phobia."
|I'm almost ready for you Mommy and Daddy!|
Onward and Upward~
G & J & E