Seat belt sign is off...for now

A fairly uneventful last few days since I wrote last, which is a very welcome relief. Not much news is good news.

After putting the last 2.5 weeks into perspective, I feel like I was riding on an airplane through some nasty weather; Lots of turbulence, scary bumps, a few hair raising dives, and then a recovery.The captain turned the seat belt sign off a few days ago, and I have been up stretching my legs, enjoying flying through the "eye" of the storm. However, the captain just got back on the intercom and reported more potential heavy weather ahead, and to prepare for some turbulence. So, despite still being sunny and blue out the window, I am preparing for some thunderstorms I hope don't come.....



Blurry bath

The doctors did some housecleaning in the NICU and moved Hanna & Ashlyn into their own private little room, which is cozy. Its nice to have them both is the same room, and makes it easier for Lauren (our primary nurse) to keep tabs on the ladies...

Hanna got her first bath yesterday! Lauren ran some warm water in a little plastic tub, and we gave Hanna a rubdown right in her little isolette. This picture shows some good scale; Despite doing so well and taking to her feedings well, she is still a very small tiny might! She seemed to enjoy it very much, and got all snuggled in and swaddled afterwards.

Hanna continues to do well and generally be a rock star. She weighed in today at 3, count em, 3 Pounds!!!! She is gaining almost an ounce per day (right on track), and is looking good. Sara commented today "She's starting to look like a real baby!".....



Hanna bath rubdown



She is taking 30CC feeds of Sara's breastmilk every 3 hours, and is pooping nice big green yucky poos. Perfect! I usually try to disappear when it's diaper changing time......

Ashlyn (the problem child as I call her): Doing fairly well. She has all her chest tubes out, and has stabilized from some very dark moments and scary times last week. After her Chylothorax fluid problems, feeds were discontinued as they aggravate the potential fluid output. Over the course of the last 10 days, her fluid has dried up, and she now faces her biggest challenge to date. Reintroducing feeds.

Since she hasn't really eaten a thing in 10 days, how does she survive? Its a question I have asked several times....They give this fluid called TPN via her "Pick line" IV. Here is the definition:

Definition: TPN, or total parenteral nutrition, is a type of IV fluid that provides total nutrition to someone who cannot take any nourishment by mouth. TPN contains sugars, electrolytes, vitamins, proteins, and fats (called lipids), and can supply all of the nutrients that the body needs. Premature babies often receive TPN while their intestines mature. The TPN will be given through an IV, an umbilical catheter, or a PICC line. When milk feedings are started, the amount of TPN that a baby receives will gradually be tapered down as the milk feedings are increased.


Hanna big eyes



So, the TPN keeps her going, but its not enough for her to grow. And its not forcing her to use her intestines to digest anything, which she needs very much to learn how to do. The doctors reintroduced feedings yesterday, and the plan is to increase through the week. They are feeding her with Enfaport, which is a synthetic breast milk make with very little fat, but high in protein, carbs, minerals etc.....They do this because babies suffering from a chylothorax condition do not react well to "natural", high fat breastmilk as it tends to aggravate fluid production. The hope is to start with enfaport for a period of weeks, and then switch down the line to "real" breast milk. As long as that Chylothorax has sealed itself.

Where this is all going, is a very critical window we are now entering with little Ashlyn. We fought through the first 2 weeks, with several very difficult moments and thoughts she wasn't go to make it. Now she faces her newest challenge. Digest the milk, and not re-develop any fluid related to the chylothorax.




Sara w/ our favorite doc Terry

 This might be the most critical time in her young life. She pretty much has to do it.

Unfortunately, the backup plans are not good to non-existent. I had a long talk one of the doctors today, Michael, who is very bright. I think I caught him at a relaxed moment as he was very candid with me, perhaps more than he had been in the past. He basically said, the Chylothorax "hole" needs to seal itself. If Ashlyn redevelops fluid related to the feedings, this means her Chylothorax has not closed. There are no good treatments were this to occur, that don't have very high risks and very uncertain outcomes.

Backup plan B is trying a drug called Octerotide. He says they probably wouldn't even do it anyway because its so high risk; It reduces perfusion and restricts blood flow. Might close the hole. But also is very experimental, and slows down growth hormones, pituitary glands, and can have long term effects. But the real answer is they simply don't know. Its only been used on about 30 babies her size and age EVER...in the world. And he's not keen on trying it if we come to that.

Backup plan C is surgery. However, he says the surgery doesn't solve the problem. The Thoracic duct (in which the hole exists/existed) is the size of 1 piece of hair, and runs down the spinal column. The surgery requires going in there, finding it, and then cutting it off below the hole. This results in the fluid spilling in the stomach area, rather than the chest cavity. This ensures that the fluid does not restrict breathing  as there is no fluid there) but simply moves the problem to a different place. The "cut line" would still have to close on its own. He's not keen on that either.

So, from what I'm hearing, she doesn't have much of a choice. She has to fix this issue on her own, and only she can do it for herself. The next 3-7 days will be critical in determining the outcome.

Once again, we ask for your help. Ashlyn needs your prayers, support, love, guidance, power, healing, and affirmations. Tell little Ashlyn she CAN DO THIS, and SHE WILL DO THIS. Tell her to close that hole the size of a pinprick on a duct the size of a piece of hair. Tell her she has the will, the power and the means to make this happen. Tell her that you love her and you want to meet her one day.

And please god; give her your strength and your power.

Thanks for all the gifts and well wishes from all over the world once again, we are grateful for such wonderful family and friends! Go Ashlyn and GO TINY MIGHTS!