Day 82-False Summit

Summertime has arrived in Colorado, and its beautiful out. High in 70's and 80's, no humidity, sunny days, and snow capped peaks in the distance. The snow is melting early this year, as it was a one of the least snowy winters in some 20 years. This is bad for the rivers and reservoirs, but great for early season mountaineering. I love to run around in the mountains, and climbing in the Colorado 14'ers has been a favorite pastime for many years.

If you have ever spent anytime climbing peaks in the mountains, then you're familiar with "false summits". You've ascended the mountain through multiple different zones, popped out of the forest at treeline, and can now see a long ridge that leads to the summit. You angle towards the ridge, but the difficulty unexpectedly increases. You persevere onwards, and after battling through altitude, fatigue, potential weather, and various other obstacles, you arrive at the summit. But wait, this isn't the top?!?!



The girls



As you arrive at what you thought was the summit, you see before you see a sight to behold...Another long ridge, that ascends towards what looks like the "true summit". It looks deceivingly easy and close, however the very top of the mountain is shrouded in clouds and mist, making it difficult to tell how close you really are. With a sigh and a renewed push, you set forth from the ridge into the unknown above.




Hanna gives the finger to the bottle...



The last 20 days or so in the NICU has indeed been a push to a "false summit". I honestly didn't write in this blog the last 2 weeks or so, because they wasn't much to report. The girls are "feeder/growers", and are growing nicely. There were no issues to speak of, and all indications were that they were going to get of of the NICU by "around" Sara's original due date, which was May 24th.  However, last week things got interesting with Hanna, and indeed we hit the false summit. The good news is that the girls are relatively good, and are coming home soon. Maybe as soon as this week. The bad news is that they are not quite ready yet.

I know that Sara and I are ready.

As we reminisced about last night, this has been a difficult adventure for both of us; no doubt the hardest thing we have been through both individually and as a team. Starting out in October of 2011 when we learned about our "momo twins", it has been a long and painful journey of unrelenting fear, uncertainty, hardship, and stress. I explained it to a colleague the other day as "Instead of feeling all the joy associated with the birth of your daughters, you get about 10 minutes of pleasure and then get immersed back into the muck."As Sara put it, its like living in 2 worlds. One world is your "normal" life....House in Boulder, beautiful son, great friends and family around, and sunny days. The "other" world is the NICU where your 2 daughters live. Its a windowless world of beeps, alarms, IV's, oxygen tanks, worried faces, and scary sights. It's a weird double life.



Hanna all cuddled up


That said, Sara has been an incredible rockstar throughout. I always have known her to be tough, but she has clearly arrived at a new level now. Commuting down to the NICU every day, always a hopeful smile on her face. "Pumping" breast milk all day/night every day for the last 3 months to feed the girls, despite them not living under the same roof as us. Most women I know would have cracked by now. The girls and I are lucky to have such tough mama.

We are close....Tantalizingly close to having the girls come.

Hanna:



PT for bottle feeding for Hanna

She's 7 1/2 lbs now, and looks great. However, she has been the primary source of worry in the last few weeks, as she pulled a "freaky Friday" with her sister Ashlyn. That means she changed places with her sister and has amazingly assumed the "most worried about" status.
Her primary issue is feeding. Early last week, she was not eating well, and showed all kinds of discomfort after getting her feeds. Writhing around, hiccups, squirming, gas...all of it. Preemie babies don't know how to "suck/swallow" until around 34-36 weeks, when they begin to learn how to do it. At 40 weeks "gestation" now, Hanna should be putting together the "suck, swallow, breathe" trifecta and be either sucking on the boob or taking a bottle. This is her last hurdle to master, and then she can be sprung from her prison of the NICU.



 However last week, she had a few bad feeds and began to "aspirate". This happens when fluid she is getting by mouth can't be swallowed correctly, and partially drains down the trachea into the lungs. Very bad. This can lead to all kinds of nasty infections, pneumonia, and all kinds of bad juju. Worse, she emotionally then makes a associatrion of eating with pain, and then doesnt want to eat. This can cascade downhill fairly fast.

In addition to this, she likely has moderate/severe reflux so she is being given "Prevacid" to help with it. This reflux may be a contributing factor as well to her general unhappiness with feeds.

So last Wednesday, mouth feedings were discontinued, and Dr Rosenberg came to talk with us. He said its not all that uncommon to see this, but that she need to "figure out" how to eat via mouth soon. Aspiration is a dangerous condition to bring a baby home with, and his suggestion is that is she can't figure it out pretty soon he will recommend a "G"tube. This is a gastric tube that is a direct line into the stomach from outside the chest. It looks like a plastic button on the stomach and you essentially put an feed in directly through a line into it. Not wonderful news, and certainly not a reality we want to face.

Better news: Today, working with the speech therapist and a PT, Hanna was able to successfully, albeit very slowly, take about 1/4 of a bottle. She had to go extremely slowly, had to be prepped with a binky to get her "cues" going, but the operation was deemed a success. A huge relief! She can do it! It's likely that she simply needs more time to "learn" the suck/swallow/feed" reflexes, and she doesn't want to be rushed.

So, she is on a "feeding" PT schedule and the hope is this week she can "learn" how to feed properly, which will be her final exam to get out of here. We will see.

Ashlyn:

She's 5.5 LBS now, her growing is slow....but steady. She looking good!

She is an all-star with bottle and the boob, and has far surpassed her sister in the this department. I'm sure this won't be the only she thing she "one-up's her sister on later in life. She got her feeding tube OUT a few days ago, and no has just her nasal cannula left.

Her main issue is her oxygen requirement. One of the test they do before they can release a baby is called the "room air challenge". They basically turn off the O2 and see how long the baby can maintain their oxygen level above a certain threshold for 45 minutes.

Ashlyn made it 6 minutes the first time about a week ago, and then 16 minutes a few days ago. She is showing improvement here, and they will do it again tomorrow. Lung development is ongoing with preemies, and they try to grow/regrow lung cells that were not properly formed in utero. When she comes home, she will definitely come home on Oxygen (both likely will), and then the challenge will be how long she needs it. Hopefully for only a few weeks or months.

Other than that, she's doing amazingly well for what's she's been through. Near death several times over, and now showing her sister she is indeed the tough one. Unreal.

Thank you for all thew good wishes, prayers and support. We need another round of help to get Hanna and Ashlyn over the hump...Please channel lots of good thoughts and prayers for healthy eating and breathing for both them! It Works!