Day 50 -Mile 22

Today represents a milestone day in the NICU...Day 50.

Its hard to believe really; Hard to believe the girls are nearing 2 months old and have not moved from the same room about 20 yards down the hall from where they were delivered. Hard to believe that we have been coming down here every day for 50 days; Hard to believe that after all we have been through there is light at the end of the tunnel.

If this was a marathon, we would be around mile 22 now; You've pushed through the "wall" at mile 18, and you know you're going to make it to the finish. Only 4.2 miles to go.....however, you're exhausted; your legs hurt and feel heavy; your mentally drained and time gets very slow. Every mile feels like an eternity.

You begin to feel the emotional joy of knowing you're going to make it to the finish line, but know that you still have some tough miles to go. There still may be some unexpected setbacks; You might get a cramp, a muscle tweak, or you might overheat and have to slow down. You want so desperately to beat your PR (personal record) time, and know you'll have to push hard and keep pace from here to make it happen.

That's pretty much where we are: Tired of coming down here every day; Eager to get the girls home, and hopeful that we don't get any further setbacks.

Today's news is good.




Hanna's touchdown pose

Hanna:
Feeding and growing...Hanna is weighing in at 5 lbs 5oz now, and is looking very good. She is holding her oxygen level well on a very low cannula, and is regulating her temperature perfectly as well.

She is pounding down 45 cc's of mom's breast milk every 3 hours.....Sara is teaching her how to suck on the boob, and she is learning. She has sporadic episodes where she can put together the skill set necessary to breastfeed (suck, swallow, breathe)....but still gets tired doing it and then falls back asleep. She still has some work to do here.

Both girls have 3 requirements to go home are:

1. Be able to breastfeed and/or bottle feed
2. Pass a "room air test"- Have no oxygen for 45 minutes and have good Oxygen levels
3. Have no "A's or B's" for 5 days-These are the apnea or brachacardyria episodes we've become accustomed to-breathing slows and stops, heart rate goes way down, lights flash, warning beeps start dinging, and then she "wakes up" and goes back to normal.



Both girls in cribs w/ Mom



Hanna has some work to do on #1- She's in training for Suck, swallow, breathe......

Right now she has #2 done....she can breathe fine with no O2 for 5-10 minutes, likely longer.

She is close on #3....She's only has a few "episodes" over the last 4 days and they seem to get more infrequent.

Beyond that, her PDA is still large, but still very "asymptomatic"....No action required. Still hoping it closes on its own over time, and getting more comfortable with the likelihood that she is coming home with it.

So, all in all, Hanna is doing GREAT and has a road map to GET OUT OF THE NICU AND COME HOME!!!!!! YES! The Nurses are saying its likely she is coming home in 10-14 days!!!

Ashlyn:



Hi Ashlyn!

 The big news today is that she is out of her isolette! Yep, after 50 days in an incubator, she is finally out in a "mini" crib like Hanna, and looks the best I have seen her.

She's weighing in at 4lbs!

More goods news: She has started to be weened off her enfaport milk and is transitioning to "real" breastmilk in stages this week. Today we are moving from 75% enfaport/25% breastmilk, to a 50-50 concoction.

You will recall the reason for the enfaport was her Chylothorax. Babies with this serious issue are given low fat milk called enfaport so as not to aggravate the condition for 6 weeks. This is her 8th week of life, and thus they have started to introduce the real stuff. So far, she seems to be tolerating it fine, and fingers are crossed that she will continue to react well to "real" breastmilk.

Even more good news: They are moving her to a low flow nasal Cannula today! Remarkable, considering she was intubated after her surgery just a few weeks ago. This means she will be on the same oxygen levels as Hanna, very low....This further suggests that her lung issues may be healing and, and she's on a great, upward trajectory.



Ashlyn with a mouthful of Boob!


Sara reports that Ashlyn is learning how to breastfeed FASTER than Hanna, and who knows; Maybe she'll just leap past her and hit the accelerator pedal to growth. She is VERY alert most of the time we are around now

All in all, Ashlyn is doing great!

Sara and I are walking for the March of Dimes on Saturday in Broomfield. We have a "Tiny Mights" team of friends, neighbors, and school folks joining us. Sara has raised over $1000 and the Journey School has hit $10,000....Most of the NICU nurses and staff are walking as well, but they are going to be at a separate location in Denver's city park. We will be wearing our tiny mights gear, capes, and all very proud...Pictures to come.

Thanks for the good wishes, prayers, thoughts, and good vibes....The girls are feeling the love!

Feeding & Growing

Things in the NICU continue to roll along-Most of the news is good.

Its been almost a full week since the last update, and perhaps surprisingly, there is not alot to report. No news is good news.

I was able to catch the morning "rounds" on Saturday, and it lasted no more than about 3 minutes. Apparently, there is not much to say....A far cry from just a few short weeks ago, when there would be a 20 minute de-brief on the various ailments that the girls, particularly Ashlyn, were facing.



Ashlyn with Bink



Here is where we stand:

Ashlyn:



Ashlyn bath



She is starting to look pretty good! She had her first bath a few days ago, and is very alert many times when we are there. She is on high flow oxygen at 1.5 lites, which is a nice downgrade from her Cpap machine. She is weighing in at 3lbs and 11oz and is just starting to enter the "feeder and grower" stage.

The plan is to introduce "real" breast milk on Monday-She has been on Enfaport (a synthetic breast milk substitute) for around 30 days now, because of the risks of her Chlothorax. The hope is that the Chlothorax has healed itself by now, and that introducing "real" breastmilk won't aggravate anything.

Other than that she is looking good!



Dad & Hanna



Hanna:

Hanna is growing fast.....She's up to 4lbs 14oz, and should be cresting 5lbs this weekend! She really looks like a "real" baby now.....She is sucking on mom's boob intermittently, and is still practicing this craft. This is one of the key skills she needs to learn to be able to go home.....She's getting there!



Hanna



Her PDA murmur is still "loud", but she remains "asymptomatic" so no action. The hope continues that it will close on its own over the next month or two....Since it's not causing her any distress, no one is really concerned. It lingers on my mind however, as I know its going to have to be closed-either by her or by medical intervention.

For some kids where it doesn't close on its own, they can do a less invasive "angioplasty" type surgery where they stick a coil into the duct to block it. Its usually done before 1 year of age...Hoping and praying that we don't have to go there.

All in all, things are good in the NICU...we are starting consider when we might be taking our girls home.The girls were born 44 days ago and have lived their entire little life's  Hanna will likely come home first, and I'm guessing we are still 2-3 weeks out...Ashlyn is probably a week or two behind that. Cant wait!




The whole family!



Day 38 Momentum

The hockey playoffs are here, and there is little better than watching your team win incredibly exciting playoff games.



Blackhawks

The Chicago Blackhawks are my team; My dad started taking me to games when I wasn't much older than Rylan is. I fondly recall Sunday nights back in Chicago growing up; Heading down to greektown for dinner (with bread and saganaki flaming cheese), driving west over to the old Chicago Stadium; My dad paying the local black kids on the corner to "watch" our car during the game; Then later bribing the parking lot guys for "EZ out" parking....
 The stadium really used to rock....The singing of the national anthem produced an absolutely deafening roar, which at times was the highlight of the whole game. Sitting in the mezzanine directly under the 2nd level, we usually sat in the "beer zone" seats, where the drunks upstairs would spill their beers and shower us down on the main floor.

I saw alot of games at that old barn, and grew to love hockey. Hockey is an interesting sport...Some of it is about skill; But equally important is hard work, momentum and confidence, combined with a little luck. Games where one team is dominating can change so quickly; the other team can score a quick goal or two, and the whole complexion of the game can turn on a dime. The momentum can carry throughout individual games or series of games, and the difference between winning and losing can be nothing more than a bounce of the puck.

The girls in the NICU are clearly gaining some momentum. Hanna is currently the team MVP, while Ashlyn is a "role" player trying to catch up to her all-star sister. Things have improved dramatically since last week, and are accelerating in a very positive direction. It looks like the Hayes girls are players after all.....

Hanna:

Is rocking; She is really porking up, and gaining weight very consistently. She is putting on nearly 2 ounces a day, and is weighing in today at 4 lbs 7 oz. She really looks like a "real" baby now; She's got some fat on her legs, her head has really grown big from where she was.

She is OUT of her isolette incubator, and is just lying in a "mini" crib now...She wears a cute pink hat, and is learning to suck on mom's boob. She has daily "boob" sessions now, and is learning her new trade slowly but surely....



Sara holding both girls for the first time!



The reality that she is transitioning to mom's boob for her feedings,  brings a new reality check....Mom needs to be at the NICU all the time, and Hanna is going to be coming home at some point in the not so distant future. I'm guessing she is still 2-3 weeks out; However her momentum is strong and at the rate she is growing and progressing, it could be sooner.



Her PDA "murmur" is reporting to be getting "louder", which may be a good thing. We know she has it, and despite being "asymptomatic", it remains a concern. The louder nature of it may mean that's its trying to close. Time will tell.

All in all, she is the team MVP....

Ashlyn:

The junior partner is improving; She has faced some serious challenges, and as such, it comes as no surprise that she is behind in her development from her sister.



Ashlyn's staples...ouch



She is weighing in at 3lb 6 OZ, and seems to taking her enfaport feeds well. She remains on enfaport rather than mom's milk as a precaution; We believe that her Chlylothorax situation has resolved itself, but will still wait another week or two to introduce "real" breast milk.

Her CPAP  oxygen needs seem to be reducing, and this they are going to try and pull the CPAP this week. She will transition to a high flow nasal cannula.



Also, I watched today as they pulled her staples out of her side, where the PDA surgery incision is. It was hard to watch as the staples were WAY in there, and they pulled them using a clamp thing-she winced as every one came out, and there were about 12......But its over, and she is now staple free with a nice scar across her side. They say as the skin grows over time, that the scar will actually "move" around to her back....She'll still look great in a bikini, although I'm not sure I would approve of her in a bikini anyway....



Staples coming out



Even better, she is almost tube free! She still has her feeding tube down her throat, but has NO IV's and no other lines!!!!!! YAY!!!

All in all she is improving....She is still small, but getting her staples out and having her oxygen needs diminish, as well as being tube free means she is starting to play in the big leagues now. Go girl!




Rylan meets his sisters



The NICU lifted the "cold and flu" season restrictions which meant that Rylan got to come meet his sisters for the first time yesterday. At home he often says "sisters" and "eyer" which means elevator.

You see, he know how to get to the hospital; He gets in the "car", the doors "open and close", he goes on the "eyer", to see his "sisters"......He knows his sisters names now and can say "Ashlyn" and "Hanna" very well.

Upon first introduction, he stared at Hanna for a good 3-4 minutes...He wasn't quite sure at first, but then figured out it was "Hanna" and starting pointing and waving...so cute.



Holding hands...



Also, Sara got to hold both girls TOGETHER for the first few times this weekend. Its a really cute sight to see, let me tell you.

Just like in the womb, the girls nestled nearly skin to skin seems to make them very calm and happy.....Mom too!

The girls decided they liked it so much, they wanted to hold hands......So adorable!

I'm away on business this week...next update on Friday.

GO TINY MIGHTS!

Through the wall and around the corner



Cary holding Hanna



Many of you know that I enjoy running. From 10k's, marathons, and even 50 mile ultra's, running is great exercise and really calms the mind.

If you have ever run a marathon, then you know about "the wall"; Somewhere between miles 17-20, after you've been out there for awhile, your legs start to tire, as does your mind, and you hit it. That's when the real suffering begins; your legs say I don't feel like doing this anymore, despite what your brain says. You start having doubts, despite how hard you've trained. Time slows down, and you wonder why you're putting yourself through this ordeal.



On a good day, you can run through the wall, and after suffering for a few miles, you can get past it and finish strong.

Hanna



Today at the NICU, we ran right through the wall...... and finally turned the corner.....

The race is far from over, but we got some very positive news and it feels like there light at the end of the tunnel. It was a milestone type of day, where everything seems to trending positively and we actually may take home 2 healthy girls!!!!!!!!

 It was one of the best days we have had in the NICU since we started this journey!



Hanna:

Hanna crossed a big threshold today as she crossed the 4 LB mark! 4lbs and 1 oz....She is gaining very steadily now, around 1.5 to 2 oz a day.....She is really to starting to look like a "real" baby, instead of a preemie...She's filling out, her head is growing alot, and she is putting a little fat on her once scrawny legs. All good.



Hanna eyes open



She has entered the "feeder/grower" stage now, and just needs to concentrate on growing and learning how to suck on mom's boob. Once she can figure out how to suck, she can likely think about coming home....Probably still 3 weeks away or so, but the reality that it might actually happen hit today. Awesome.

The only bad news we got is that her previously seen brain bleed has not completely resolved but is "resolving". They said its small anyway, and is nothing to be concerned about. A few weeks ago I would  probably be freaking out over something like this, but they seem clear that its not bad. So, I'm not worrying about it.



Ashlyn:

The real good news.....She is was extubated 2 days ago, and is back on her C-PAP "rhinoceros" air. Her lungs seem to be clearing, and her oxygen requirements are going down. Her possible infection never materialized, and they are going to finish out the anti-biotic treatment for the next 2 days and then be done. They are increasing her feeds slowly, and going to be removing her surgery staples late this week.

More importantly, she looks GOOD. She had her eyes open today, and seemed alert and responsive. Poor girl has been on Fentanyl, a heavy barbituarte for pain, on and off for most of her young 34 day life. Its good she is off it, hopefully for good. She's awake, and looking around. She is noticeably smaller than her sister, but hopefully she can catch up.



All in all, a great today and we are filled with alot of hope. Hope that the girls will OK, and hope that one day we will bring the ladies home. Day 34 in the NICU was good!





Easter Capes



Rylan Egg Hunting



It's Easter today, and Rylan has been really having a ball....He had no less than 4 Easter egg hunts, and has discovered chocolate for the first time. He was running all over the parks looking for Easter eggs and generally having a blast.



We found him him yesterday, after he had strayed off a little, with a chocolate face that looked like Augustus Gloop from Willy Wonka...Upon further inspection, he had bits of tin foil wrap in his mouth, so we knew he had found some chocolate and devoured it, wrapping and all. Hilarious.



This week we received a wonderful gift from my work crew at REC Solar. A UPS box arrived on Friday, and low and behold; a nice signed card from a group of REC friends/colleagues, and Tiny Mights Capes. That's right...Capes.



TM!



Sara had drawn the "Tiny Might's" a few weeks ago, and its become a hit....The twins dressed up as superhero girls, wearing their TM capes.....



TM Capes Front



Apparently one of the REC Solar crew, one Matthew Woods, had taken the drawing and sent it to a friend who is a seamstress in Redondo Beach, CA....She replicated Sara's drawing to perfection, and voila! We have the TM capes!

I can't wait till the girls get older and don their capes for Halloween....They will need to be continued superheroes to get out of the NICU, with full wonder twin powers activating! Now they have their capes to take them on their way......Awesome! Thank you to the REC team for such a heartwarming gift....Lots of smiles created now and in the future!



TM Capes Back





Easter has brought some better news from NICU.

Ashlyn:



As a recap:   Ashlyn had PDA surgery last Tuesday afternoon, and her recovery was pretty rough. There were some very dark moments on Wednesday, Thursday and Friday.  Last I wrote, she was very sick and in trouble.

The better news today is that she may turned the corner for the better. Her O2 requirements have decreased, and although still on a breathing tube, she is stable. They are even talking about extubation tomorrow, which is good. Her xrays and looking a bit better, so her potential fluid in the lungs is small. There are still treating her for an infection, although they don't seem to be able to verify that she has one. This is also very good news.

All in all, good news-especially from where we were a few nights ago, which was fearing the worst. If she can get extubated tomorrow, and back on the CPAP things will be moving back in the right direction.
Hanna:

Growing! She's weighing in now at 3 lb and 13oz, so nearing the important 4 lb mark. They have increased her feeds, and she continues to grow. Most of the news is good.

Her problem, as identified last week by her first ever echocardiagram (echo), is her PDA.....We now know its there, and she still has a loud murmur. Nothing to be done about now, as her condition is known as an "asymptomatic PDA", in which she isn't showing distress. She is actually doing great!

However, one way or another, her PDA duct is going to have to close. She is either going to be able to do it on her own, which may take weeks/months...perhaps even a few years. Or, she is going to have to have some sort of surgery to close it. The doctors say they there is a less invasive surgery than Ashlyn had, that places a "coil" in the PDA duct to block it, that kids can have when they are 6 months- 2 years old.  She may be a candidate for if her duct does not close on its own. We'll keep our fingers crossed that she stays "asymptomatic", and that that damn duct closes on its own....CLOSE DUCT CLOSE!

Sara is trying to get her to nipple a bit during the "care times", and Hanna has even suckled a little here and there.

Happy Easter to everyone-Thanks for all the love and support.

1 month & no repreive

Its been exactly 1 month that the girls have been here. Born Thursday March 8th...Therefore their "chronological age" is 1 month, but their In "adjusted" age terms, they are still 0...not even born. "Real" age vs "adjusted age" is a very interesting concept. Here is the definition from the March of Dimes website:

The premature infant: How old is my baby?

Babies who are born prematurely often have two ages:

• Chronological age is the age of the baby from the day of birth—the number of days, weeks or years old the baby is.
• Adjusted age is the age of the baby based on his due date. Health care providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months.

Their original due date was May 24th.....a long 7 weeks from now.  Therefore, despite being a month old, they still are are -7 weeks "adjusted".....

Sara stayed home today, as she has down down with my cold/strep; She is not pleased to away from the girls, but knows its not good to be in the NICU with a potential sickness. I made it down to catch the tail end of the rounds for Ashlyn and Hanna.

The news in the NICU is not particularly good, which is a nice way of saying that its bad. We'll drop right in:

Ashlyn hammered on 6 meds

Ashlyn:

Is having problems......The surgery on Tuesday went well, and her recovery was looking good until last night. Apparently overnight, she started deteriorating, and is now facing some serious new challenges in her recovery from her PDA surgery.

She had some unfavorable xrays this morning which show fluid accumulating in her lungs...The thought is that this is from an infection. Bad bad bad......They are starting anti-biotics now as a precaution, and are expecting test results back within an hour or two.

Further analysis this morning indicates a very high CPG reading (not sure what that even means) of around 5.8 with a "normal" range of 0-1....off the charts.

The doctor's initially hypothesis is that she has some sort of bronchial infection, maybe pneumonia. I asked if it could be from me or Sara and she likely not; Anytime they re-introduce a breathing tube, the risk of infection is fairly high. As a classic doctor she says "the good news is an infection is fully treatable." 




Ashlyn-Bad O2 of 39 and high BP


If the fluid continues to accumulate, they are talking about re-introducing a chest tube.

Poor girl is getting so hammered.....She is getting several blood draws done every few hours, and looks very unhappy. They have increased her Fentanyl and is on about 6 meds at this point. It feels like the poor thing is a human lab experiment. Its really hard to see.

Bottom line: She's sick, alot sicker than she was yesterday and in critical condition; Once again she's fighting for her life.

The level of attention she is getting and the looks on the faces of the doctors that are treating her tell the story. She was in a similarly precarious spot a few weeks ago, related to her chylothorax. Now she's in the same spot, with new issues. If she makes it out of the NICU it will be a miracle.

Hanna:

Our rockstar finally got some bad news....I figured it was only a matter of time;

Her echo revealed a "moderate to severe" PDA.....

No surprise really; We knew she had a "loud" murmur, and knew that since she is an identical twin and that her sister Ashlyn had one, that this was a distinct possibility. However, it still sucks.

She is not showing any distress, and actually, is doing really well. She is actually is growing like a weed and all the way to 3 1/2 lbs now! Everything she is doing is good.

It's one of those "too much information" moments. Since she is growing so well, and all her stats look great, no one is eager to do anything about the PDA. Around 80% of PDA's close on their own; It might take weeks, months even a few years; I talked with my buddy Tim today, who told me his son had a PDA and it eventually closed. It took almost 2 years.

Not much else to say on Hanna. It sucks to hear that she has a big PDA. It's good to see that she continues to well.

That's it for today...will update as events warrant over the next day or two.

For now all, as my friend Becca says, all we can do "wait and see".

Please continue to send your thought and prayers for our little girls, particularly Ashlyn. Thanks for all the support.

Ashlyn had her PDA surgery-she is OK



Ashlyn reintubated right before surgery



Another crazy day in the NICU.....Ashlyn had her PDA surgery today at around 3:15pm MST.

Sara called and said she needed some moral support. I knew I wasn't going to be allowed into the NICU (due to my strep throat), but I knew Sara needed me down there. I arrived and Sara came out of the NICU doors in tears; She was saying she had to sign all these consent forms, and that she had watched the doctors get Ashlyn ready for surgery. In some ways, I'm glad I wasn't in there.



Ashlyn not happy about going into surgery

 I waited in a "parents room" while the surgery happened; Sara was inside the NICU and sat near Hanna. The surgery only lasted about 25 minutes, which is pretty amazing.The doctors came out and found me in the room and delivered the surgical report.

The surgeon, Dr David Fullerton is an old pro. 31 years in practice and he has won numerous awards etc.....its good that we got one of the best docs. Her surgery went well. The doctor tied off her PDA duct and it said it was "the largest duct opening I have seen in 30 years of doing this". I'll give Ashlyn a medal when she's older for having one of the largest PDA's in history. Unreal.



Blurry surgery shot

He also said he is slightly concerned she may have an aortic coarctation, which may restrict blood flow to the emtremities. He said they were not too worried about it, but something he noticed while he was in there. As I have learned, any time they start talking about something, there is a reason behind it. I'll do some homework on that later.

The most unusual part of the whole experience, is what the nurses and Sara reported about Hanna's behavior during Ashlyn's the surgery. Apparently, Hanna became very agitated when they took Ashlyn out of "their" room for the surgery. During the surgery, Hanna was very restless and upset; she started triggering her alarms, had a bunch of desats in a row, and was twisting and turning and uncomfortable. After the surgery ended, Hanna relaxed and went right back to sleep, like she normally does.

They say that "mirror" twins like these two girls can "feel" things about their twin, and it seems that it might actually be true. We had heard about unusual phenomenon like this, and this may be our first "strange twin" moment. Very interesting.

Subsequently, they took an echo (echocardiogram) and an xray and are initially very pleased by the results immediately after the surgery. As you can see below; The picture on the right is before surgery. Note the very large heart size, the white cloudy look of the lungs (which means poor air intake/uptake).

The picture on the left is about 15 minutes after surgery. You can see the staples in her side, where the incision was. Her heart is noticeably smaller (working less hard), the lungs have re inflated (as evidenced by the darker lung picture). First look reveals a big improvement!

Before on right, after on left-note staples

The next 24-48 hours are once again critical. She is listed in "critcal" condition in the NICU, as the first 24 hours after heart surgery for ANYONE, much less a 2.75lb, 3 week old baby is sketchy. Please keep our little Ashlyn in your thoughts, prayers, in these critical hours over the next day or two. The poor girl has already been through more at 3 weeks than many people go through their entire lives, and she sure deserves to catch a break.

Unknown Caller-Again

The Iphone said "unknown caller" again this morning. As a veteran of the NICU, I know what that means. Michael was calling from the NICU to tell us some bad news.

Ashlyn has been slightly deteriorating over the last 3 days, with her oxygen requirements going slightly up, fluid issues going up, and overall health going down. Not good.

He was calling this morning to tell us the plan. SURGERY. TODAY.


He said they want to move forward with the PDA ligation surgery. He termed it as "our hands are pretty much tied, and were running out of options."

On one hand, we know this surgery is a 20 minute surgery, and the medical side of it is not that complicated. You go in, tie off the duct, and get out.

On the other hand, the risks are all over the map. Ashlyn will need to be re-intubated, put back on pain medication, and is having heart surgery at age 3.5 weeks of life. Ugh.

The other risks of this surgery shake out like this:

• Major surgery risks
• Bleeding
• Infection
• Vocal Chord paralysis-Doesn't mean she wont be able to talk, but may have a raspy voice
• 5-10% chance...maybe higher.
• Neurodevelopmental issues
• Some correlation between PDA surgery and longer term developmental problems
• Doctors don't really know why
• Say that putting small babies under anesthesia might be a contributing factor
• They also say that closing the PDA results in a radical hemodynanmic change in the body-resulting in much more blood flow, a "push" of blood if you will. This "push" can be a contributing factor to longer term problems as well.

This is what they will be doing....

http://www.youtube.com/watch?v=SOj6K_BoIAc

Even better, I have come down with a strep throat-That's twice in 3 months. If my little niece wasn't so cute I would hold it against her.

The bad part is that this will prevent me from going to the hospital to be there for my little girl. They wont let me in the NICU being sick, so I'm not going to be there today. Sara is there now.

So, here we go.....Please send thoughts and prayers. the next 48-72 hours are going to be critical once again.

Day 23 in the NICU



Mom Hayes & Rylan



Can't believe we have been in the NICU for over 3 weeks now with our little ladies; In some ways it feels like about 3 years. The commute from Boulder down to Aurora we now know all too well. It's 45 minutes from the house, depending on traffic, and all I think I could do this drive in my sleep now.



Sara's parents left yesterday, and flew home to California. I have to admit, I'm lucky to have some pretty amazing in laws. They are super fun, positive people who really help out. Ann & Tony watched and played with Rylan a ton, in addition to; cooking, cleaning, painting, laundry, handyman projects (Tony is really good), errands, and everything else. The nicest thing about having them around was that we could get up and go to the hospital at any time, because they would watch Rylan. So now, the burden will shift to my parents, who are equally awesome in their help factor. We have amazing parents on both sides.

I think its pretty rare for your in laws move into your house for a month and that you don't get sick of them. Not to say it wouldn't be nice if they just MOVED out here permanatly and/or split their time between CA and CO (I know you're reading this guys!), but nonetheless, they are pretty awesome and always welcome.

Some more ups and down in the NICU to report, so here goes:

Hanna:

• She continues to be a rockstar....No major issues. Growing now and weighing in around 3 lbs 3 Oz now..Feeds continue to increase. She still has a higher hear rate, but that's old news.
• Sara did her first breastfeeding session today with her! The goal was just to get her lips latched onto the boob. However, as the outperformer she is, she even sucked! Pretty unusual for a 32 week old preemie, but a good sign for the future.



Ashlyn's "Echo"



Ashlyn:

• Ahhhhh...The problem child.
• Yesterday brought good news, then bad news, then good news, then bad news. That's right, double good-double bad. Such is life on the NICU roller coaster.
• Good news: She took her first POOP! Yes, imagine if you had to hold it for 22 days...Yikes! This is great news that the plumbing is working and her feeds are taking.
• Bad news: Late yesterday afternoon, Ashlyn started deteriorating...Oxygen requirements increased, heart was enlarged, heart rate was high....The doctors stopped feeds and were thinking the very worst; The chylothorax had returned. They immediately requested an echo (echocardiagram, basically an ultrasound of the heart.)
• We were anxious to hear last night what the Echo showed, but didn't learn anything until today.
• We came in this morning to catch the morning rounds and were greeted with another round of good/bad.
• She is not showing effusion in the plural space....AKA they feel fairly confident that she is not showing any sign of a Chylothorax! This is great news, as Chylothorax is potentially deadly.
• The bad news: The echo revealed she has a moderate/severe PDA "duct".....Her indomethacin treatments from 2 weeks ago had seemed to close the duct, but it has reopened. Bad. The plan for treatment is a diaretic medication called aldactaside...The hope is some blood thinning will reduce her symptoms and give her time to let the PDA close.
• The doctors are saying they would like to give it about a week to see if the duct will close on its own....If not, the only way to really get it closed is surgery. Not fun.

So in summary: Hanna is good, and Ashlyn's Chylothorax might have closed, but she has a PDA.

For those who love the details, like me...I'll leave you with some educational reading.

 Next update midweek.



Amanda visits the NICU



What is a Patent Ductus Arteriosus (PDA)?

Answer: Patent ductus arteriosus, or PDA, is a heart condition that is common in premature babies. Babies born very early have a greater risk of patent ductus arteriosus than babies born closer to term; about half of all micro preemies have a PDA, about 15% of babies born at 30 weeks have a PDA, and only a small percentage of late preterm babies have a PDA.

What Causes a Patent Ductus Arteriosus?

Before birth, a baby’s blood is oxygenated by the placenta, not the lungs. Because of this, the circulatory system of a fetus is very different from that of a newborn baby. A small amount of blood goes to the lungs to nourish them, but most of a fetus’s blood bypasses the lungs completely. Instead of going to the lungs, blood flows through the ductus arteriosus (a hole between the pulmonary artery and the aorta) and out to the rest of the body.
After birth, the baby begins to breathe and the lungs start to oxygenate the blood. When this happens, the PDA should close, allowing blood to flow freely to the lungs. However, when the ductus arteriosus does not close, deoxygenated blood flows through the PDA, into the aorta, and out to the body instead of going to the lungs to become oxygenated.

What Symptoms does a Patent Ductus Arteriosus Cause?

A heart murmur is usually the first symptom of a PDA. A small PDA may not cause any other symptoms, so it is usually not treated. A larger PDA can cause other symptoms, including:

• Low oxygen saturation
• Fast or labored breathing
• Poor feeding
• Bounding (very strong) pulses
• Weight loss
• Lethargy

How is a Patent Ductus Arteriosus Diagnosed?

Doctors and nurses may suspect a PDA when a baby has a heart murmur, especially if the baby is also breathing fast, has bounding pulses, and periods of low oxygen saturation. If a patent ductus arteriosus is suspected, an echocardiogram of the heart will be ordered. Also called a cardiac echo, this painless test is a sonogram of the heart.

How is a Patent Ductus Arteriosus Treated?

Most small PDAs will close on their own, with no treatment. Unless a baby is having a lot of symptoms from a PDA, doctors will simply monitor the baby closely and wait for the ductus arteriosus to close. A baby may be put on fluid restriction while doctors wait for a PDA to close. This helps reduce the symptoms of a PDA because the heart has less blood to pump and doesn’t have to work as hard.
If a PDA is causing a lot of symptoms, then doctors will try to treat it with medication. NeoProfen, a special form of ibuprofen, is the medication most commonly used to close a PDA. In fact, that’s one reason why moms in their third trimester of pregnancy should stay away from ibuprofen - the fetus needs to have an open ductus! If NeoProfen doesn’t work, doctors may try another medication called Indocin.
In some cases, surgery may be needed to close a PDA. Called PDA ligation surgery, this is a relatively common surgical procedure that usually has very good results.