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!

Free At Last

Things over the last few days are clearly moving in the right direction, and we are seeing some positive developments. So awesome! While we are nowhere near out of the woods by any stretch, optimism is growing and things are improving.

We'll get right to it-



Sara holding Ashlyn 1st time

Ashlyn:
The big news is little Ashyln is making huge strides in the right direction. Today, her 2nd chest was removed!! After seeing no fluid overnight, the doctors decided to pull the tube.....

FREE AT LAST!

This comes with several important ramifications. First, it allows her to sleep on her side and on her tummy (a more natural position for a little preemie, and she seems happier)....Second, and by far the biggest....

MOM got to hold little Ashlyn today for the first time! She is 16 days old today. Mom was THRILLED and was feeling very good about her sweet little girl for the first time after a 2 week hiatus. She looks like a little rhinoceros with her SI-PAP machine on, and is very cute.



Rhinoceros Ashlyn

 The doctors are going to be weening her Fentanyl (her pain medicine) now that she has no chest tubes, and are talking about reintroducing feedings on Monday. Cautiously optimistic that when her feedings are reintroduced, her chylothorax fluids won't restart.

With all the good news, comes a little bad...She scored low on her Thyroid test, (borderline as the doctors say), and they are starting her on a 4-6 week Thyroid medical treatment. They tell us not to be alarmed, and that many preemies in the NICU have similar readings. The hope is that the Thyroid hormone comes back to normal levels and that the treatment can be discontinued down the road.

Given where we have been and how far we have come, I'm not going to worry about this Thyroid issue.

All in all, we are very pleased with Ashlyn's progress!




Daddy & Hanna



Hanna:

Hanna continues to do good things, and is trending well. The big news with her; After some heavy pressure from Sara and especially from the nurses, I held Hanna. It wasn't that I didnt want to hold her, but I was waiting for Mom to get her fill....

It was really great! She's a little squirrel, and fell right asleep on me after a few minutes. She slept on my chest  for about an hour which was nice bonding time. Her heart slowed down nicely when she was on me. She is up to full feeds now, and everything is looking pretty good with her.



Julia



We got a new "resident" who is in charge of our girls for the next month...Her name is Julia, and she is a bright girl from Portland. She explained the girls situation to us today, and seems like she will be a good addition to team tiny mights.

So things are starting to get better....We've been told to not be disappointed by "two steps forward, 1 step back". We have had several steps forward in the last few days, and I'm hoping for none back for now....

Thank you for all the food (everyone is bringing us lots of yummy food), cards, flowers, calls and emails. We are blessed to have such great friends, family, and community.



A Ray Of Sunshine

Thank you for all the wonderful support; We continue to receive emails, calls, texts, letters, cards and are really feeling the love. Its great. And more importantly, its working!!! The positivity is flowing and the girls are feeling it!

The last 48 hours have seen good news. Sara decided to draw a picture for the girls; Her drawing and creative skills remain incredible. She has coined the girls as the "tiny mights", as seen here. This picture hangs next to each of their pods in the NICU, and the nurses and doctors love it. 

Tiny Mights!

Today we said goodbye to two of our doctor "residents", Amy and Stephanie. They are moving over to the children's hospital in their normal "rotations". We are sad to see them go, as they have been instrumental players in our girls care. (We gave them cermonial "team tiny mights" cards to take with them). They are both exceptional individuals, and the level of care that our girls are receiving is incredible. Thanks ladies!

Without further a due, here is the good news:

Ashlyn: 

Showed very low fluid output overnight, almost none. While this does not necessarily mean her chylothorax condition has healed, its certainty a step in the right direction. She is off the Lasix and antibiotics, and is seeing improving oxygen uptake (meaning lower oxygen requirements). 

The big news is that today around 4pm she was extubated! They removed her breathing tube (for the first time in her short 14 day life), and she is now on CPAP and breathing somewhat on her own!! Awesome progress! Even better, they are talking about taking our her chest tube over the weekend! EPIC!

They are going to reintroduce feedings with Enfaport (low fat milk that doesn't aggravate the chylothorax) and we will hope that no fluid begin to re accumulate. They explained that if fluid starts to re accumulate (which means the chylothorax hasn't closed) that they would have to reinsert the chest tube, which would not be so good. 

However, we are going to keep the train rolling and hope and pray that introducing the feedings won't result in fluid, and that the Chylothorax is closed or closing. 

All in all, remarkable progress for our little girl. Lets keep it going!

Hanna:

Still good. She has ramped up to full feedings now, and is pounding down 30ML of Sara's breaks milk every 3 hours. They moved her feeding tube from her mouth to her nose (which she seems to like, not sure why).

She still has a slightly elevated heart rate, and no one is too concerned. Sara is doing Kangaroo care for 1-2 hours a day with her, and we have even put a micro Binky in her mouth a few times.

All in all, she's rocking her 2 week birthday today.....

We'll leave it with some humor tonight....Sara's sister Kathryn snapped this photo today, and the girls all got a good laugh at my rapidly receding hairline.....so much for for getting grey.

Go Team Tiny Mights!

Holding Hanna

I think it might be time for a "Mommy" post.  First, I really do want to thank you all for the love, support and prayers you are sending our way. I believe it is really working and I am so grateful to all of you! I have been pretty silent the last 10 days. I have received a lot of calls, emails, and texts from friends asking how I am and offering to help in any way. Thank you all for your kindness! This has been very hard but I know we will get through this and I have my eyes on the prize..bringing our girls home.

My multi- talented husband has been great at keeping you all informed and even I learn from reading his posts. While Cary thrives off the doctors rounds and all the names, conditions, medications etc keeping our girls going, I thrive on the moments I get to hold Hanna. I am looking forward to the day I get to do Kangaroo Care with both of my sweet girls.

The girls have staggered care times every 4 hours. Between these care times they should not be disturbed so they can rest and grow and recover from all these stressful procedures.  I  try to participate in these care times when I can. I take their temperature and change the worlds tiniest diapers. Today they adjusted one of Ashlyn's many lines and I helped by putting my hand on her head and bringing her arms into center for comfort. Every day I do Kangaroo Care with Hanna for around an hour. We are skin to skin and it is the sweetest feeling. In the womb a baby gets about 20 hours of deep sleep. In the NICU they get about 2 hours that are made up of short 20 minute snatches here and there. During Kangaroo Care your baby regulates to your heart beat and falls into this much needed deep sleep. Within a minute Hanna is asleep on me. She usually does not stir the whole time we are together. I am glad I can hold Hanna and she is taking more and more of my stock pile of milk.

 Due to Ashlyn's chylothorax she can not tolerate my breast milk. She can not process the fat in my breast milk -it actually will cause the chyle fluid to increase. This makes me feel even more helpless to care for Ashlyn. I have been talking to the Mother's Milk Bank about a process they may be able  to do to my milk to make it Fat Free. ( One skinny latte coming right up Ashlyn!) So I am hoping I can start feeding her.

As hard as this journey has been I am glad my girls are here! I know if I was not living in the hospital being monitored closely and if I did not have Dr Galan and his amazing team making the right decision for my girls, they would not be here. They truly are miracle MoMos and I know they are tough and they give me courage, strength and inspiration. Go Girls! Mommy Loves You!

Ashlyn's Care Time

Holding Hanna

Emotional charting

I have followed the stock market for the better part of 20 years now. My dad, a true market master, instilled in me the desire to be an observer and participant of the grand game.

One of the most fascinating things about the market is to look at stock price charts. They tell the "emotional" story of price discovery in the markets. Candlestick charts, which originated in Japan some 500 years ago, are a meaningful window in the market participants emotional reality.

If I was to chart my own personal emotional index with the events of the last 12 days, it might look like this....

Cary's emotional index

It shows a steady decline; Then a quick uptick, followed by a crash to new lows....Stocks usually hit a bottom when fear and panic set in, and I'm hoping the same hold true in my own emotional index, which hit new lows two days ago. After all the bad news is out and priced in, how much lower can you go?

I have received calls, emails, and texts from friends and neighbors, and seen alot of people. They all kind of look at me funny and say "Wow, I can't even imagine what your going through right now...."

Its true: this is an intensely difficult and painful chapter. There is no sugarcoating the feelings of helplessness, sadness, and fear. It sucks. However, the good news is that Sara and I are handling it all pretty well. And we will get through this.

This blog started as a way to tell our story to other MOMO families, whose blogs we read, to provide guidance and comfort through these uncharted waters. Then it was a way to keep folks updated about the progress of the girls and to avoid 40 phone calls a day.....Some part of it has now turned into a release mechanism; It feels good to write about the roller coaster of emotion through these pages, and we hope that other families that go through difficult situations like this will share some comfort that they are not alone.



Kathryn, Sara's Mom, & Megan

 Many of the previous posts have been fairly dark I admit; but hey, this isn't exactly rainbow and unicorn territory right now. The good news is we still have a sense of humor, no one is jumping off any cliffs, and we still have a sense of excitement about the future with our new ladies. Thanks for all the wonderful outreach and support.


Sara, Kathryn, and Megan



Sara parents have been in town for several weeks now, and this past weekend her sisters came to visit; Megan in from Park City for the weekend, and Kathryn who is in from California for a week. I know Sara is happy to see them, and its great that they are here.

With that said, it has been a happily "uneventful" two days. Here is the update:

Ashlyn:

• After discontinuing her feeds and inserting the 2nd chest tube 2 days ago, her fluid drainage has slowed to around 20 CC's as of last night-Relatively good news
• Her lungs look pretty good, and she is off antibiotics-good news
• They have decided to remove her original chest tube (right side) tomorrow! This should be GREAT news, but I am tabling my enthusiasm as they say the tube is now clogged and most of the drainage is coming out of the other side. So, an incremental improvement I suppose.
• Lasik treatments to act as a diuretic

Her main problem continues to be this Chylothorax, which is serious. It needs to close, and soon.

Everyone repeat after me: "Attention Ashlyn Hayes's Thoracic duct-CLOSE NOW!!!!! Thank you for your cooperation."



Sara "Kangarooing" with Hanna



Hanna:

No major issues, other than her high heart rate. Every time I try to get excited about it, and worry about it, the doctors tell me to chill. So I'm not worrying about it.

Sara is doing daily Kangaroo care and she is increasing her feeds. She may get her "pick line" IV out soon!

All in all, things are stable with incremental improvements.

Thanks for all the love ands support. Please pray and send power to our girls!

The Junior Partner

My Mom & Dad came down to visit the girls in the NICU last week. My dad is is a very funny guy, and remains among the most entertaining people I know. He is always cheerful, talking about his favorite pastimes; the Blackhawks or the Bears, the stock market, or current events. He was a lawyer in his career for the better part 35 years, and still speaks the tongue.

Sitting in Hanna's "pod" in the NICU, my dad motioned to the "pod" next door was Ashlyn lives, and says "How is the Junior partner?" I laughed out loud for a good minute or two.....It was a much needed good belly laugh, and a funny and very accurate description of Ashlyn.

She has been the junior partner right from the start. Our first real indication of trouble came around 22 weeks, when ultrasound first indicated she was much smaller than her sister; Her head, stomach, and estimated weight were all lower than Hanna's. It was estimated at one point she was 30% smaller than her twin. She came out only 20% smaller than her sister, however, that hasn't changed the hard reality. She continues to be the "junior partner" and get the short end of the stick.

My Iphone read "unknown caller" around 10am this morning, and I knew instantly who it was. The hospital NICU has called several times, and it always reads the same. They don't call to give you happy, cheerful status updates on your children in intensive care; they only call to tell you about problems.

Hanna on Saturday

I answered, and a Amanda, a new "resident" introduced herself on the other end of the line. She explained that Ashlyn had had a rough night....A whopping 80 CC's of fluid had drained out of her chest tube, and she was having increasingly difficulty breathing. they had turned her ventilator all the way to 50 to compensate. They had done a round of xrays and seen a large fluid buildup; Not on the side with the chest tube, the right....... but on the left side. She was calling for permission to insert a 2nd chest tube, this time on the left. She went through all the standard disclaimer; risk of infection, risk of bleeding blah blah blah....Then said "besides that, she's doing great!"

That familiar feeling started again; the deep pain starting to well up inside me. I went upstairs and told Sara and she started to cry. We went down to the NICU soon therafter.

Weekend "rounds"

We arrived just in time for "rounds". It's a different crew on the weekends. They went through the standard routine; Ashlyn had:

• 80 CC's fluid drain from chest tube
• 20 CC's from 2nd chest tube
• on 55% oxygen
• Recommended stopping feeds
• Off Antibiotics
• Visibly Bloated
• Adding Hydro cortisone

Hanna's report was better: No major issues-a slight concern with an elevated heart rate (tachycardia), and murmur related to a hopefully closing PDA, but otherwise increasing feeds and gaining weight.

Looking at poor little Ashlyn was painful. She was totally bloated, and didn't look like the same micro girl we had left the day before. With 2 chest tubes sticking out of both sides of her chest, and asleep on pain meds, she didn't look so good.

I chatted with the doctor for awhile, and he told me they say "5 or 10" Chylothorax's per year in the NICU in Denver. He says "Its really a weird one.....but the good thing is it's treatable. It just takes time, maybe weeks. The lymph system simply has to plug the hole and heal itself...not much we can do but wait."

Sara and I spent a few hours at the NICU; Sara pumped and did "Kangaroo care" with Hanna. We put our hands on poor little Ashlyn, but 9 days into her life, have yet to hold her. We drove home in silence, the emotional tidal wave of it all crashing over us.

All in all, a very difficult day, maybe the worst yet since we started this journey.

Please give our "junior partner" some good vibes and prayer.

The glass is half

Perspective. Its hard thing to come by in the trenches of the NICU. Flashing lights, beeping alerts, lots of IV's and tubes running everywhere. And varying information that elicits varied response... Its hard to know if the glass is half full or half empty. Maybe its just half.



Dr Rosenberg presiding over morning NICU "rounds"



After last nights bad news about the brain bleeds, Sara and I didn't sleep too well. She was up pumping in the middle of the night, and I was fidgeting around in the bed. We awoke and stepped into the NICU just in time for the morning rounds. This is where the main doctors, the fellows, residents, nurses, and pretty much everyone go around the whole NICU. They form a circle near the particular baby they are going to be talking about;laptop computers are rolled up on stands, and notebooks are out.

The presiding "resident" doctor then explains the "case" on that particular baby, and develops his/her recommended treatment course and actions. The overseeing doctors then challenge the "resident" into why his/her thinking is such, and challenge the group to think about alternate solutions. After some insightful debate, the overseeing doctor stamps his approval on the "resident's" course of action, and they move on to the next case.

I've found the "rounds" to be the best opportunity to glean the purest information about Ashlyn & Hanna. There is no candycoating, no subjective emotional talk; It's straight up clinical diagnosis and course of action. Its fascinating.



"Resident" Stephanie working on  Hanna



Being the good student I am (my mother might disagree), I had my laptop open during the rounds and took notes. The whole group kept looking over at me as I was furiously making notes about their discussion, and laughed at the end as they asked if I had gotten it all. This is what I gleaned:

Ashlyn:

• PDA duct minor, no more treatment for now
• Gained 40 grams overnight, all fluid related
• drained 18CC's of Chlyle overnight from chest tube
• Urine was low and concerning
• Possible adrenal gland issues
• Pulling UA line today
• Trying to advance feeds with non fat enfamil as to not aggravate Chylothorax
• Start Albumin

Cary's interpretation- Fairly stable, but with a new issue; Fluid retention. Her drain increased overnight, and they are replacing more fluid than she is losing, and she's not urinating out the excess. Troubling. She is semi-bloated. Both Stephanie and Amy, the two "residents" that care for Ashlyn, say she still is an "active player" in the NICU. I take that as she is sick and struggling.



Sara's twin drawing posted on the wall in NICU

Hanna:

• Weighs 1120 grams, down 80 grams from birthweight
• On high flow oxygen, reducing from 3 to 2.5
• Murmer still apparent
• increasing feeds
• continuing Caffeine

Cary's interpretation: Continuing well, increasing feeds. No major issues. Heart murmer is PDA that is likely closing, no treatment. Doing most everything right.

On a final note, we did get some good news I suppose today from Dr Rosenberg. After "rounds", I cornered him to ask about the brain bleed news we received last night. He said "Its probably just an "artifact", and so small anyway, I wouldn't lose any sleep over it." An "artifact" is apparently a shadow or a misprint on the ultrasound machine. So after the freakout of last night, hearing about brain bleeds and thinking very bad thoughts about brain damage, he re-assured us that he is not that concerned about it. Hard to know, and we woul'nt know about any consequences from it for a matter of months/years anyway, so I'm going to try and not worry about it.

So, is the glass half full or half empty? Right now, its just half.

NICU Punching Bag

Sara and I came down to the NICU late this afternoon;They have have special "family" rooms...Little rooms with a bed and bathroom, maybe a little better than motel 6. Families with NICU kids are allowed to stay in  for up to 2 nights a week, which makes it easier to catch a nighttime "care time" and the morning rounds. So, we are settling in for the night.

The "family room"

Every day in the NICU that goes by, we are faced with new challenges. I think the trenches of the NICU are similar to the stepping in the ring with Muhammed Ali....A right hook, a few body blows, a left, then an uppercut.....You get knocked down, get up, then get knocked down again.....Your simply trying to stay alive; keep your head down, dodge the next haymaker knockout blow, and keep going. I liken the feeling to be a punching bag. Every time I get get punched, I absorb it, and then get ready for the next one. They seem to never end.

Its been exactly one week since the girls were born. In a "normal" pregnancy we would be home by now, enjoying no sleep and a crying baby all night. Instead, we are spending nights getting restless sleep. I never thought I would yearn for the sound of a crying baby in the middle of the night.

Sara is pumping every 4 or 5 hours in the night, and storing the milk in little containers to bring down to the NICU. Her milk has really come in, and she is getting plenty of milk for both girls in their tiny situations.

Donna & Ashlyn

Ashlyn: We left the NICU last night with some positive news on Ashlyn. One of the doctors came running down the hall after us as we were leaving to tell something good. Her PDA, the duct in the heart, had reacted well to the indomethacin treatments. It had been downgraded 2 stages. From Severe to moderate and then from moderate to minor! This was welcome good news, really the first we have received. It was great to go home to. This essentially takes the PDA out of play, as its closed enough that unless she showed very bad symptoms, they would not do anything further about it. I'm calling that a win, and checking the PDA off the list.

Tonight we came in and were feeling optimistic about last nights events. Unfortunately, we learned some more bad news.

They stopped one of the two antibiotics Ashlyn is on because she doesn't need it. Why doesn't she need it? Because they found something, and this particular antibiotic
doesn't treat it. They have found a very small Staph infection near near breathing tube. As Amy, one of the NICU doctors put it, "we grew just a very few small cultures from it, so its very small. We are treating it, and don't expect it to worsen."

Hanna

Anytime you hear staph infection, you don't get all warm and fuzzy.

After the infection news, the two NICU doctors continued how well Hanna was doing, and how stable Ashlyn was................

I saw it coming.....I could see that they had rehearsed their lines, and were forming a delivery.........Sara was oblivious, but I saw the body language of these ladies, and my fighter instinct kicked in....I braced myself, tightened my stomach, and got ready for the next big punch to the gut.

They told us that a scan had revealed small brain bleeds in both girls cerebellums. Hanna on the right and Ashlyn on the left. The first thing I thought of was "wow, this means they really are mirror twins...they really have almost identical characteristics on differing sides, how cool..." Then I thought again, and decided not so cool. They explained that these brain bleeds were small, and found in the cerebellum, the motor control area of the brain.

Hanna closeup

My heart sank; I felt the familiar feeling of the tears coming, but I held them back. 7 days in the NICU has taught me to be a pro-fighter, and I took the blow and didn't squeak. I saw the look on Sara's face;  I knew she was caught by surprise by that punch, and was knocked to the ground.

A quick "google doctor" on the subject shows higher risks of cerebral palsy, other motor control issues, and lots of other fun problems. The NICU nurses reassure us that brain bleeds are very common in premature babies under 32 weeks, and usually will heal themselves. They keep trying to reassure us that everything will be fine.

We went to chipolte for dinner, and sat in silence eating burritos. I asked, "Are we having fun yet?"

I'm left tonight with the following from a preemie blog post on a support group site....

Anonymous (8:17am) wrote: "what's the point of this? so, if your preemie has a bleed in the first few days of life you are supposed to...
A) discontinue life support
B) become depressed b/c studies show you *might* be raising a special needs child
C) nothing
D) Tuck the info away in my mind so I may better understand my child in the future.

If this was a multiple choice test, I'd take B and C.....But it;s not so my answer has to be D.

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







 











87 Hours

First, I want to thank everyone for the amazing outreach of love and support that Sara and I have received over the last 87 hours. That's how long the girls have been in "the outside world", and we thank everyone. We have received phone calls and emails from literally around the world, and its great to not only know we have lots of people that care for us, but we have a team that is united in praying for and rooting for the Ashlyn and Hanna.

Yesterday afternoon/evening was pretty rough....The reality of everything came crashing down on us, and the emotional intensity began to take its toll. Several rounds of tears. I had the chance to go home for a few hours last night and hang with Rylan. This relived the pressure valve a bit, which was good.

Sara is checking out of the hospital today, which is also good. She will be happy to be home after 3.5 weeks in the hospital, and to see Rylan. She is pumping every 3-4 hours now, and getting good milk.

It's likely going to be a weird deal to go home after all of this with no babies with you. The reality is that we have 2 daughters in intensive care, which is a pretty tough deal. But, we know that they are getting the best care possible in one of the best NICU's in the country, so that is reassuring.

Hanna: Is doing well.....and is providing us with lots positivity. She is tracking nicely on her markers for her age so far, and is showing us no real issues which is fantastic. She has accepted her first few "trophic feeds" (these are small breast milk feeds given through a tube down her throat) to acclimate her to larger feeds later. She got her main arterial tube removed yesterday evening (less tubes is good!).

The big news is that we got to hold her for the first time!!! Its a little clunky to hold her with the tubes/wires, but the nurses help so its fine.

All in all, she is reacting to the outside world fairly well and hanging tough.We are proud she is so strong, and fingers are crossed that she continues to do well.

Ashlyn-The problem child. If she makes it to older age, I will be sure to kick her in the ass because she is definitely creating elevated blood pressure by not only mom & dad, but by the collective universe watching.

She continues to be sick. She has been getting the short end of the stick from her time inutero to now,and that certainly hasn't changed.

To summarize her challenges:

1. She has a potential chylothorax, and has a chest tube
2. She has a potential PDA, and indomethacin hasn't worked
3. She has only "OK" blood gases, and is semi toxic
4. She is intubated and has a collapsed left lung

And Now??? There's more.

She might now have an infection.

That's the big, not so good news as of 11am MDT Monday 3/12. The doctors said she had an "OK" night, and then saw a high white blood count this morning. They say they take everything very aggressively, and then recommending doing a spinal tap to test for Meningitis and other fun infections.

When I asked Kim, one of the doctors what this means, in conjunction with everything else she has going on she said "concerning, but not unusual. Many NICU babies develop infections and recover to do fine."

                                                                    (Ashlyn with mom's hands)

Not sure what else to say....She's a tiny little preemie who is sick, and fighting for her life. All we can is hope, pray and send her strength and love to keep fighting. I had a good talk with her today that went as follows:

 "C'mon girl, get it together....You can do this. You are a strong little girl, and I'm not taking no for an answer. My hair is getting gray, and I'm aging about 1 year for every day I'm in this damn place, so stop going downhill already, and lets start moving forward, shall we?!"

Please unite in delivering all your prayers and energy to give strength to little Ashlyn, as she needs it now more than ever.

I will be updating this blog once a day going forward, likely in the afternoons. Stay tuned.