In the Trenches

One of the hard things about this experience so far (there are many of them), is trying to get a grip on the the big picture. It's hard to know what the bigger picture looks like.

Spending the better part of every day in the NICU for the last 5 days is a very heavy experience. I still get spontaneous moments where I well up like I'm about to cry, but usually just hold most of it in. NICU nurses, who are some of the most amazing people I have met (more on that later), always say that life in the NICU is measured in hours not days. They are concerned with very immediate issues of life and death. I suppose ICU for adults is the same way, however it seems to be even more dramatic here. So, living "in the trenches", on the front lines with the NICU nurses provides a very unique perspective.

NICU screen

This is the main NICU screen that keeps me in suspense and fear....The green  number at the top measures heart rate; next down the blue number is oxygen saturation; next is the red blood pressure and finally the yellow number at the bottom is measuring breaths per minute. You want the heart rate to stay between 140-170 or so; the oxygen between 84-94; The BP around 35-40; and I'm not sure on the breaths per minute...This is Ashlyn's screen today, and is registering pretty normal here.

These screens have most horrific alarms that go off if the vitals stray from the norms...Its starts beeping with flashing red lights. It's a noise and feeling that I'm sure I will live with the rest of my life.

Alot has happened in 48 hours or so since my last post.....some good and some bad. Thanks for the amazing outreach and support.





 

Good Chest

 Ashlyn: She continues to have a rough entry to the planet. Monday night they took another round of Xrays and found these results. Her draining left side (you can see the chest tube on her right side that wraps up around her arm and shoulder) was doing fairly well and the oxygen was getting into her lungs. The darker space in the xrays shows air in the lungs and is good. The "white" shows no air penetration and is bad.

These were taken Monday night, and showed a serious deterioration in Ashlyn's left lung. Very bad. The doctors didn't quite know what to make of it when we left Monday evening when these were taken.



Bad chest



We got the call Tuesday morning; They had  found lots of fluid on the her LEFT side, and that what was causing the lung to not inflate. They had done a procedure overnight to drain the LEFT side by sticking in a needle to drain it, and she seemed to respond well. We were not thrilled to hear this news, but it happened during the night and we didn't even know till the next day.

This is only 1 of her various issues she is facing. She finished her 2nd round (of 3 doses) of indomethacin to try to close her PDA. The PDA has now changed from "severe" to "moderate", which is moving in the right direction, albeit not completely closed. They are hesitant to give a 3rd round as it has side effects. Talking to the Doctor this morning, he said they will do another echocardiogram this afternoon to look and see if the PDA is closing. If the Indomethacin doesn't work, they are talking about surgery. I can't quite get my head around what surgery looks like a tenny preemie, and the risks associated and I hope we don't go there. Close PDA CLOSE!!!!!!



Chest tube tank



Here is the chest train draining tank, and as you can see, has drained around 90CC's worth of yucky brown Chyle from her chest. This is issue #3, her Chylothorax. The doctors say that this isnt a huge amount (it sure looks like it to me), and that it seems to be slowing. You can see the black lines that are drawn on it to mark its progress at various time intervals.

So overall Ashlyn's status is stable. You might say the lung drain and re inflation is  baby step towards improvement, but new issues compounded on top of things is not good in my book.

This morning (Wednesday) they changed her intubation tube to a larger size that fits better down her throat. This has helped her Oxygen levels, and they seem pleased. Her blood gases are coming back fairly good. She is a fighter, and continues to fight through a rough, rough, rough, start to her young life.

I continue to tell her she needs to "get it together" and "turn the corner" for us. Telling her that I'm going to kick her ass when she's older doesn't seem to be working, so I'm trying bribery. "Ashlyn, you can pick out ANY car you want from the auto dealership when you're 16, which would you like?!"

Hanna: Continues to move forward, and we are pleased by the good news. She got her CPAP machine OFF today, and has now downgraded her Oxygen needs to just a "nasal Cannula"...This means she is breathing almost entirely on her own!!! This is great progress. Go girl!

They are removing her white feed line from her umbilical cord today, and are replacing with what they call a "pick" line that is a normal IV in arm. This is OK, and actually a step in the right direction. They are going to start increasing her feeds today with mom's breast milk, and will only need the pick line in until they have her on full feeds.  I am so so so happy she is progressing and am sending her all the best vibes to keep going forward.



Sara's message



All in all, she is doing everything RIGHT! (Like a good little girl should)..........

Speaking of Mom, we got Sara home on Monday night, which was amazing. She spent nearly a month in the hospital, and was happy to sleep in her own bed. Rylan was very happy to see mommy as well.

She has responded incredibly well to her C-section...She is walking around at normal speed, and is recovering much faster than a "normal" woman. But then again, we always knew that Sara is not "normal" woman....She's a superhero!

This was the note we wrote on her whiteboard in her hospital room before we left........

Meet Lauren....She talks with a little bit of a southern drawl, and has an intense personality. She is quick and bit sharp around the edges, but an incredible woman. She lives in Denver, has a son attending UC Santa Cruz, and and is a ski instructor at Copper Mtn when not in the NICU. She is one of the most remarkable and caring people I have ever met.

She suffers from Cancer, and is undergoing Chemo. She met Ashlyn over the last few days, and has decided to become Ashlyn's "primary nurse"....She explained that she likes the "hard cases", and that she has seen much worse.

She asked when Sara's "normal" due date was and we replied May 24th. That's when, if she was having a "normal" singleton pregnancy, that she was due to deliver.....The NICU staff keeps saying that you can expect babies in the NICU to go home no earlier than their "normal" due date, so we are expecting a lengthy stay....She then continued that she is rescheduling her next round of chemo until early June, so she can take this journey with Ashlyn.....I almost broke down and cried. This woman is postposing her own health care decisions, so she can take care of my daughter...AMAZING.



Dr Rosenberg w/ Sara



Finally, meet Adam Rosenberg, the cheif of the NICU and I believe the president of the entire Neonatal practice in Denver. From my vantage point "in the trenches' I asked about the big picture...."Is Ashlyn going to be OK?"

"Probably" he says

Is Ashlyn going to have a "normal" life?

"Probably" he says

He assured me that Ashlyn is stable and that the issues she is facing are not insurmountable. He then started to set expectations a bit...It was something like this:

"Ashlyn is doing OK, and she is likely to make it out of here in a few months. Is she going to have see more doctors when she is growing up? Most likely yes...Is she going to have lung problems....Maybe. Is she going to have cognitive issues...Maybe....Is she going to play soccer when she is 4 years old....probably....Its possible that she may end up being a very normal kid. Only time will tell."

Thats it for today....Thanks for all the love and support. Keep rooting for Ashlyn and Hanna!





Hanna with just the nasal cannula