Tuesday, May 8, 2012

Our Textbook Feeder

As a new parent, I wasn't aware of the signs a baby would give if she was aspirating during a feeding session. I just assumed Elise's squirming, fussy face, and intermittent coughing during bottle feedings were signs of her getting used to eating through a bottle. Practice? I didn't realize she was taking that milk into her trachea, and the feeding sessions that I thought were successful were actually very painful and uncomfortable for her. As a result of her agitation getting worse during feeding sessions, a swallow study was performed and determined that she was indeed aspirating. The doctors gave her last week to rest and ordered small thickened feeds to start this Monday.

Now that Elise is on day #2 of thickened feeds, she is a new baby! She lays calmly, never chokes, and is described by all the professionals working with her as a 'textbook bottle feeder.' She sucks slowly, swallows, pauses to breathe, and repeats. As a teacher, to hear that my daughter was a textbook ANYTHING, was music to my ears. I find myself wanting to kiss her face off after every successful (this time around, TRULY successful) feeding session.

Her oxygen continues to be weaned down this week. She is now on 1.5 liters of Vapotherm. Next step will be nasal cannula. Once she is successfully on the nasal cannula, she will be weaned by quarters of liters. Her final step will be an eighth of a liter of oxygen before they will try her out on NO respiratory support. We are hoping and praying that her lungs are mature enough to handle 'this whole breathing thing' on their own. If we get to a point that she is taking all her feeds by mouth, but still requires a slight whiff of nasal cannula, they will send us home-- BUT we will come home with oxygen tanks and a monitor to measure her oxygen level. Again, we hope and pray her lungs are ready to come home oxygen-free. No one wants to carry a car seat around AND an oxygen tank. However, if it comes down to coming home on a little oxygen or spending another month in the NICU, we would choose to get our baby girl home. We have learned during our journey that many preemies go home on oxygen for a few months. After some time home and subsequent re-evaluation at St. Vincent's, many times the tanks and monitors can be returned.

We asked Dr. Ben Saad on Monday if he thinks there is a good chance Elise will come home on some amount of oxygen? He was straightforward with us and said his opinion would be, 'most likely, yes.' Bummer. Big bummer.

We are still holding out hope that Elise is going to hit her "launch pad" weight and maturity and NOT need oxygen once we come home. She has never required a ton of oxygen in the NICU. Yes, her lungs were teeny tiny when she was born, but we hope and pray she is going to prove the doctors wrong. Dr. Ben Saad did go on and say that Elise could surprise us and not need it, but he envisions that she will need some support for the first few months at home.

Like I said, I would rather have Elise home on a little oxygen than be stuck in the NICU for another month. However, coming home on oxygen is like getting a golden ticket with a bite out of it. We absolutely cannot wait to be home with Elise, but we are so ready to be a traditional family raising our baby at home. I hate to use the word "deserving," but after sitting in the NICU for 3+ months, I think we should be able to come home attachment-free. Although I've dealt with oxygen tanks for many years with my mother, I'd rather not carry on the tradition with my daughter. It is a tradition that could bury itself and I wouldn't miss it.

Elise has already proven herself as a miracle baby. We know she will continue this trend. Let's prove those nurses and doctors wrong, and instead, come home oxygen-free!

Sleepy eyes! Maybe it was from all the preemie cupcakes we put in her bottle today? After all, when you are THREE MONTHS OLD TODAY, you need a little birthday fun, right?! ha! 

G & J & E

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