Monday, May 21, 2012

Working Out the Last Kink

Today (Monday) was the day of Elise's swallow study to redetermine what thickness of milk she could successfully swallow into her esophagus. Grant and I actually got to attend the swallow study this time. We stood behind the glass window with the radiologist and watched the X-ray monitor. Nurse Donna fed Elise the different thicknesses while Elise laid on a big X-ray table. Elise was such a trouper! As the radiologist would ask for different nipples and different thicknesses, Elise would accept each one and swallow away. For Grant and I, it was very neat to watch Miss Elise's insides working so hard!

The radiologist started with the honey thick milk which is what Elise has been successful with since the first swallow study. As usual, she performed great with the honey thick. Then the radiologist moved to a step down from honey thick-- nectar. With nectar, Elise did OK, but not fabulous. After a few good swallows, the formula started to penetrate her windpipe. She certainly wasn't as strong on the nectar as she was on the honey thick.

Therefore, she needs to stay with the honey thick for a while longer. This means we will go home with that consistency. The problem with the honey thick would be that she can't get all the nutrients that she needs from honey thick bottles. She needs some nutrients from breast milk, but as I last wrote, breast milk cannot be thickened with the thickener we are currently using. We thought this would mean she would need to come home and be on the pump for a few of her feeds.

HOWEVER, it is a possibility that we could use a different type of thickener and thicken the breast milk for 1-2 feeds per day. Therefore, she would get the nutrients from the breast milk AND the milk would be thickened so she could successfully take it through a bottle. Tomorrow, we will know for sure if this is possible when the doctors meet with the dietitian and discuss Elise's proper nutrition.

Really Mom?! Possibly no pump feeds?? Yahooooo! 

All in all, it looks promising! Elise took 6 bottles today and did great. Tomorrow, they will try all 8 feeds through a bottle (and hopefully work out the pump feeds so they are through bottles as well). She is OFF all respiratory treatments and lung medicines! It is POSSIBLE that when the time comes, we will come home on vitamins, Prilosec, and thickened feeds...that's it. To think of all the things we could have come home with (oxygen, monitor, pump feeds, medicines, respiratory breathing treatments, etc), we are very, very blessed.

The next step will be feeding Elise ad lib. Meaning, instead of feeding her on the dot every 3 hours and giving her exactly 45 mLs, we would watch for cues from her as to when to feed her and how much. Most likely, it will be close to every 3 hours, but the amounts per bottle may vary. She may be super hungry and take 60 mLs one time, but the next time she may only take 40 mLs. We will make sure on average she is taking full feeds. I'm excited for this...something traditional mommies do :)

You might be reading this post and thinking, "When is this little lady going to come home??" Soon! We have a few more kinks to work out and then we will be making that celebratory post that we've been waiting to write for many, many weeks.

On the ride home this evening, I found myself thinking about making the drive home with a little peanut in the back seat, all buckled into her new polka dot car seat. It still seems soooooo surreal at times. Even though we've had Elise in our lives for 3 1/2 months, my schedule hasn't resembled that of a "traditional" mother. On my days spent at home, I can sleep in if I need to, and I'm certainly not woken up in the middle of the night unless my bladder starts to scream. When I run errands, I jump in and out of the car and do whatever I need to do. Basically what I'm saying is, when I'm in the NICU, it's 'Elise time' and I'm all about rocking and holding her. When I'm home, it's easy to forget about full-time, 24/7 motherhood.

I do know one thing: I am beyond excited to get my baby girl home so we can cuddle and play in our pj's all day long with no nurses, doctors, monitors, or other crying babies to be seen or heard!

Our pink-legging chunker: 5 lbs. 9 oz! 

Patiently Waiting,

G & J & E

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