Day 34: A good day!

Ever since her brain scan came back, I've hesitated to write "Lily is having a good day". No matter how positive, no matter how stable, no matter how relatively boring the day is... I just can't bring myself to write it. How can she have a good day with possible brain damage?

But the fact is, she's the same person she was the day before the brain scan. And no matter what happens, no matter what test results come back, no matter what information we receive, she will ALWAYS be the same person. And even if she does turn out to have white matter damage, she can still be happy... she can still have fun... And she can STILL have good days.

So, today they changed her eating pattern from continuous feeds to what's called "bolus" feeds, whereby about 14 mL of breastmilk is injected into her feeding tube over the course of 30 minutes, every two hours, instead of sending 7.5ml/hr continually through the tube. They move from continual to bolus feeds to get her digestive tract on a "schedule" - to expect food, digest is, and wait for the next meal. Just like us! And... she is tolerating the bolus feeds well! The fact that her digestive system is working well is the biggest thing she has going for her right now. She's growing rapidly, and the three pound mark is in sight... Just 7 ounces away!

Doctors ordered another lung x-ray this morning, since they've had such difficulty weaning her down on the SiPAP ventilator's oxygen setting. Doctors did not see anything new in the x-ray, which is really fantastic. No pneumatocele, no lung collapses, nothing apart from the RDS that we knew she has been fighting. Unfortunately the RDS has not cleared up at all... But it's not getting worse, and she is fighting it with all of her might- after all, she's still on the SiPAP!

What else... Lily turned her head for the first time yesterday! She was facing left, we walked away for a minute, returned - and she was facing right! Tremendous! This whole experience really makes you appreciate the little things... one month into life, my daughter turned her head from left to right. This means she has the ability - the muscular strength and coordination - to turn her head. Hallelujah!


I held Lily for about an hour and a half this evening. She didn't desat too frequently, maybe once or twice. She looked straight into my eyes for about ten minutes - pretty amazing. No words to describe it! 


Lily gained another 40 grams today, so she weights 1220 grams now, or 2 pounds 12 ounces!


So, I'll say it... 

Lily had a good day!

Day 32 & 33: Still on the roller coaster

Yesterday was an ok day- lily put on some weight, 20 grams, now weighs 2 lbs 9 oz. She is tolerating her feeds well, and they moed her to 7.5ml/hr. I went down to the city to catch up with a good friend from college, which was great to do.

Unfortunately lily seems to be developing a fever. Last night it was 99 degrees, this morning it was 100.8, too high for her doctor's comfort. They're hoping it is environmental, so they took her preemie clothes off and turned down her incubator last night. But her fever still rose, so they are going to re-assess at morning rounds. We are praying that lily does not have an infection, which would be bad.

We had planned brunch at my Godfather's house, but are heading down to the hospital instead, due to the fever. My mom's coming over to help out with Addie. Hopefully we can make it for morning rounds. And hopefully it is not an infection. Will update this post when we learn more.

Update: They hooked lily back up to the temperature probe on her incubator, so the incubator will start helping her regulate her temperature more. They're monitoring her closely, and she seems to be stat'ing pretty well at 50% oxygen. She had two Bradycardia's last night, and one this morning- but they keep reminding us that they're expected, and normal. They're going to take her temperature again at noon, to give her some time to regulate. They said it might be something called a "metabolic swing".

Update: They re-took her temperature and it dropped, down to 97.5 - a bit on the cool side, but better than hot!! They are chalking up the overnight swing to environmental, not infection, related causes - which is great!

9pm: We called the NICU and they told us that Lily's temperature rose a bit mid-afternoon, but it stabilized around 98.1 toward the evening. She's still digesting the 7.5ml/hr well, and looks very comfortable!

Prayers and well wishes are working one at a time, thank you!

Day 31: Less bad news

We are very fortunate - truly blessed - to have received 'less bad' news at morning rounds about the extent of the damage to Lily's brain! Right now, Lily's brain damage is NOT PVL, which is the most severe type of this particular brain injury. It still falls under the "white matter damage" umbrella, but it looks more like inflammation than full-blown PVL (which is the most severe type of white matter damage), which is essentially holes, cysts, and dying parts of the white matter that acts as a sort of nerve control center of the brain.

The nurse practictioner and fellow with whom I spoke last night told me what the radiologist said about Lily's brain scan - after my visit, the hospital's neurologist looked at the scan, and determined it was "questionable white matter damage". QUESTIONABLE. That's what we're hoping for - there IS A CHANCE that at next week's scan, it will not show up. That said, there is also a chance it will get worse. We are remaining positive and hopeful, though, and are praying that it doesn't show up again. Or if it does, it regresses or at the very least doesn't get any worse. I'm not sure we could handle progression of it at this point.

Lily's attending physician also looked at the results - amazingly, he happens to specialize his medical research in white matter ventricular damage - he also confirmed that it is not PVL. The attending physician decided not to run an MRI, rather to run an ultrasound in one week. The risks posed by the MRI on such a young brain do not outweigh the benefits of the information an MRI would provide - after all, absolutely nothing can be done about the situation.

Is it frustrating to have been told "it looks like she has PVL", in so many words, last night - of course. Last night was spent in complete anguish. But that's how NICU's work... issues get escalated to experts, whose opinion ultimately overrides those will less expertise than them. So, our prayers have been answered - for the time being - it is not PVL, there are no cysts, and there are no holes or dying parts of her white matter - just inflammation.

As I mentioned, Lily's ultrasound indicated "white matter damage" (WMD) in the white matter that surrounds the left lateral ventricle of her brain. It basically shows up as a hazy, inflamed area on the ultrasound - ultrasounds are not precise instruments, though.

The left ventricle is where math/science/etc. skills are formed. The right ventricle is arts/music/etc. skills are honed. Learning disabilities we can deal with - we are just praying - pleading - for no cerebral palsy or severe neurological challenges. "We have to wait and see", they say.

Wait and see.

There are two types of WMD: Localized or Diffused. Lily's is the less severe - diffused - which refers more to a diffuse area of  inflammation rather than localized holes or cysts. The incidence of cerebral palsy (CP) in infants with localized WMD, or PVL, is 70-80%. The incidence of CP in infants with diffused WMD is 10-20%. There are, however, infants with either localized or diffused WMD that have grown up to lead perfectly normal lives - they may be the minority, but they still exist. I'm about as far from a neuroscientist as it gets, so I'm going to quote a web source here:

"White matter in the brain is made of axons, which are like wires that carry messages between neurons and supporting cells. White matter sits underneath the brain’s cortex, or grey matter. In general, white matter damage (WMD) is caused by a lack of oxygen to that part of the brain.

Periventricular leucomalacia (PVL) is a condition in which decreased blood flow to brain tissue causes it to soften up and eventually die. Although PVL may cause WMD adjacent to the ventricles, resulting in cysts, WMD can occur without cyst formation and also in other areas of the brain for other reasons.

The range of severity and possible subsequent long-term outcomes from WMD is large. In many cases, the area of damage may be more important than the extent of damage; the various functions of the brain are often controlled by very specific and well defined areas. For this reason, a limited amount of damage in the wrong place can mean lasting and possibly even catastrophic effects. Conversely, some premature babies can recover from extensive damage provided no vital areas are affected. The brain, especially in premature babies, is plastic: if a certain neural pathway is damaged, sometimes the brain can find a new route to send information and commands from one part of the brain to another.

As with PVL, while WMD may appear on a magnetic resonance imaging (MRI) scan, the effects of the damage may not appear for up to a year. The more severe the damage, however, the more likely it is that the effects will show early."

- http://www.aboutkidshealth.ca/en/resourcecentres/prematurebabies/understandingdiagnosis/diagnosisofbrainandbehaviourproblems/pages/diagnosis-of-white-matter-damage-wmd.aspx

So, prayers were answered last night - Lily does not have PVL. There is, however, likely damage to her white matter, and we are praying that it regresses. We are praying that the brain's plasticity allows it to re-wire around the damaged area. We are praying for a normal life.

Thank you everyone for the prayers and positive energy, they bolster our hope. Sara and I are taking it one day at a time, and are staying strong.

Wait and see.

Day 30: A very difficult day.

I'm going to preface today's update by saying that we got some pretty bad news today. If you're having a good day, stop reading now.

I wish more than ever I could post some great post about her one month birthday, but that's not possible. Sara and I didn't want to post this update. In a way, writing about it makes it more real. We were going to take a few days to come to terms with the information. But we need to come to terms with it now, because it is very, very real.  It is very difficult to write about the news that we received today, but Lily needs as many prayers and as much positive energy as possible right now, so here goes nothing.

I went to the NICU after work. Asked the nurse how Lily's 30-day brain scan turned out. She wouldn't say anything - asked me to wait for the doctor. Knew it was bad news. While the scan didn't show signs of brain bleeds (thank God), it did show evidence of something called PVL, or periventricular leukomalacia. PVL, which studies say occurs in anywhere from 3-10% of premature infants (the more premature, the more common) is a type of brain damage that can range from regressive, to mild, to moderate, to severe. The presence of cysts, or brain bleeds, makes matters materially worse. Although babies with PVL generally have no outward signs or symptoms of the disorder, they are at elevated risk for motor disorder, delayed mental development, coordination problems, vision/hearing impairments, cerebral palsy, epilepsy, or mental retardation.

The cause of PVL is yet undetermined, but babies born with sepsis, which Lily was, have been shown to be at elevated risk. There is no treatment for PVL other than "symptomatic and supportive" treatment, meaning physical therapy, motor development reinforcement, etc. etc. etc. - so, we wait and see. The doctor made it sound like it very, very few cases the PVL will "regress" - but it never goes away completely. 

We don't know the severity of Lily's PVL right now; we are going in to talk with her doctors during rounds in the morning. They will probably order an MRI to determine the extent of it. They said there is no relation between the PVL and lily's lung issues and oxygenation issues. They are completely separate. 

It goes without saying that today has been a very difficult day. Don't see much in the way of sleep tonight. Sara and I are both feeling pretty nauseous. The sheer improbability of first the 1% likelihood of a chronic placental abruption, and then the 4-10% rate of PVL is pretty shattering. Not only do Sara and I know what it's like to be hit by a freight train a couple of times, we're now know what it's like to have your heart torn out. We are trying to stay strong, and are trying to stay positive. We have no choice.  This is the hand we have been dealt, and if we have been chosen to be parents to a disabled child, then by God - so be it. We're going to be the best parents we can be, regardless of what happens.

This is a good time to list a few positives:
1. Lily is still digesting well. She's on 7ml/hr, and is tolerating it quite well. She put on 40 grams last night, and now weight 2lbs 7oz, just shy of 2.5lbs.
2. Although she is still desat'ing after her sixth and seventh blood transfusion, she pulls out of them. She only had 1 bradycardia today, as opposed to 2/3 a day prior to the transfusion.
3. We know she can hear - she is responsive to sound.
4. We know she can feel - she is responsive to touch
5. No signs of brain bleeds on the brain scan.
6. Though the brain scan is only a rough indicator, it looks like she has PVL in the left ventricle, not both.
7. After her seventh blood transfusion, this morning, her hematocrit levels stabilized at 37%.

So, tonight, today, tomorrow, forever into the future we are praying for a regressive, or at least a very very mild, case of PVL in her left brain ventricle, and we are praying that whatever it turns out to be, Lily can lead a normal life. That she can run, swim, and do gymnastics. That she can laugh, and play on a playground. That she can go to school, college, fall in love, get married, and have children. That's all we're asking for right now.

Well, we're asking for one more thing. Sara and I are asking again for everyone's continued prayers and positive energy sent Lily's way - overdrive prayers, and overdrive positive energy. I hate that I have to keep saying this, but Lily really needs them now more than ever before. Thank you everyone for your support, your prayers, your good energy... thank you.

Day 29: Sixth blood transfusion

Got another lesson in blood chemistry today...

Throughout last night, Lily continued desat'ing and this morning, started getting pale;  doctors determined her hematocrit ('crit') levels were still low, around 22%*, so they administered Lily's sixth blood transfusion.
*22% of Lily's blood was composed of strictly red blood cells; this was determined by centrifuging a small vial of blood. 35% or above is generally OK. 

Prior to the transfusion, doctors noticed that her reticulocyte ('retic'), or immature red blood cell count, was higher than they would expect (which is a good thing); it was so high, they ran a second blood test, which confirmed the high retic levels. A high retic count is good... it means that Lily's bone marrow is trying to create more red blood cells, which will ultimately lead to a higher/better overall crit level. Her bone marrow is yet too immature to generate enough hematocrits, though - hence the transfusion. 

The downside about the transfusion is that is depletes all of her reticulocytes - transfused blood, from mature adults, contains about 1% of reticulocyte, whereas preemie blood should contain around 10%. More frequent transfusions means more frequent retic depletion, which tells the bone marrow to stop generating reticulocytes. I asked Dr. Gio if preemies ever become dependent on transfusion; they don't he said, for reasons I don't recall. 

On the bright side... the constant desat'ing and 2/3 Bradycardia's for the past few days day indicated an underlying issue, and so far, it seems it was the low crit count causing the volatility, rather than an open PDA!

After transfusing, her blood oxygen levels stabilized and she stopped desat'ing as frequently - while I was visiting her, I held her for an hour and her blood oxygen was in the 90s almost the entire time! It did drop a bit at the end, but nothing like the past few days. It's still too early to say the transfusion was a 'success' - that will be determined by how well her new blood holds its crit count, and how fast her bone marrow generates new reticulocytes. Docs are giving her another blood test at midnight, at which point they'll determine whether she needs yet a seventh transfusion on Thursday. She would only need a seventh if for some reason the donor blood didn't provide enough hematocrits - if it didn't, the seventh blood transfusion would come from the same donor (not good to switch donor bloods so quickly). Each transfusion increases the volume of Lily's blood by about 10%... only 10%, because they are essentially transfusing concentrated red blood cells... almost pure hematocrits.

So - she's still tolerating feeds at 7ml/hr, she gained 30 grams last night, and it appears that the doctors are making progress in determining the cause of the blood oxygen volatility; at the very least, it seems the transfusion reduced the severity and frequency of the swings. Lily also hasn't had any bradycardia's since the transfusion!

We have a lot to be positive about - Lily is still fighting, and she's still holding the battle line!

Day 28: Four weeks of life!

Hi everyone... I just hurdled the 4 week mark!

So-so day... Lily is still requiring more oxygen than they'd like to see. She's tolerating her feeds well and is looking great, but she's been needing between 45-50% oxygen (as opposed to the 35-40% needed last week), and is still desat'ing fairly frequently (she didn't desat at all when she first went on the SiPAP). Though the desat's aren't severe (usually 70s), and she pulls out of them herself, they're still frequent enough to cause the doctors to ask "what's going on?" When she should be trending towards room air (21% oxygen) she has not be able to break through the 45% barrier for a few days. She swings fairly severely from the high 90s to the mid 70s, so the doctors are trying to determine what's causing it. 

Importantly, even though her blood oxygen is volatile and is requiring higher vent settings... the NP (nurse practitioner) told Sara this morning that she "has been working in the NICU for 20 years, has seen a lot of babies, and for a 24 weaker, lily is still doing very well." The fact that she is tolerating full feeds is big, they say. She's also trending positively on weight... Although she lost 10 grams last night, she is still holding steady above 1000 grams (1040 today), or in pounds at 2lbs, 5oz as of 8pm.

So, what's causing the blood oxygen volatility?

(side note: I just looked in the isolette and saw Lily's chest wasn't moving - she was mid-apnea. Sure enough, her pulse started dropping, down to about 80. I popped the door open, tapped her back as the nurses started rushing over... she started breathing again, and her pulse and blood oxygen rebounded. Did that really just happen? Wow. That's a Brady/Apnea. It is surreal how 'normal' this rollercoaster is getting.)

Back to blood oxygen volatility & what's causing it...
There are a few possibilities, each of varying severity. It could be either the low hematocrit levels (mentioned yesterday), or there is a chance that her PDA has re-opened. The plan is now to re-check her hematocrit levels at 5am... If they haven't stabilized, they will probably do another blood transfusion to re-up her hematocrits. If that doesn't fix the oxygenation issues, they move on to a chest scan that will determine whether the PDA has re-opened. If the PDA has re-opened, they will explore every possible alternative before surgery, which is really a last resort. It turns out that something like 25% of the PDAs that closed by indocin end up re-opening.


The docs also said that Lily has a soft heart murmur. It's hard to hear over her ventilator - and it's not as though they can turn off the SiPAP. They seem to be less concerned about that, though they aren't sure what's causing it at the moment. Could be the hematocrit levels, could be an open PDA, not sure. To be determined.
A colleague offered a great analogy:
"It sounds like going to the doctor and being told you have terminal cancer. You go back the next day, and they say it's just a really bad cold. Then, you go back the following day and they say it could be a lethal form of pneumonia that will either clear up in a week or so, or get worse."

That pretty much sums it up. You just don't know what each visit will bring. When I arrived at 8:30p, her blood oxygen was in the high 80s. She started a desat'ing episode about 10 minutes into the visit, I gave her a pacifier, and her blood oxygen popped to the high 90s. Then she had a Brady, down to the 70s, then slowly back up to the 90s. Down to the 70s, up to the 90s. Over and over again. 

They say not to look at the monitors. Right. How can you not watch your child's blood oxygen swing around, or  pulse drop to a beat every two seconds? They say the Bradys are "totally normal" and that they'll be happening for a long time. I'm not sure if that's a normal I can get used to.

Normal. Normal? What a bizarre word. Any sense of normalcy has been so distorted by this whole thing. Somehow, Bradys are indeed becoming normal. They're not quite as upsetting as they were last week... they're still upsetting, without question... they're just becoming more routine. The monitors, the bradys...  a continuum of highs and lows. 

So... tonight we're:


- Celebrating 4 weeks of life, full feed tolerance, positively trending weight, and 12 days on the SiPAP!
- Praying for a closed PDA (again),  strong strong bone marrow that can pump out the hematocrits, and less volatile blood oxygen levels. 


Thank you all for the prayers and support... I wish I could respond to each comment, but between work, time with Addie, time at the NICU, and the updates, it's tough. Please know that Sara and I are deeply grateful for all of your prayers and well wishes, coming from all over the world- from the US, to the UK, to France, Russia, Australia, Singapore, Brazil, Oman, the list goes on. Your prayers are working, but they're still needed!

Sleeping beauty

I'm a numbers guy... and I like the trend!

Day 27: Miracles every day

Another pretty good one! Lily's still on the SiPAP, its oxygen setting was at 40-45% for most of the day, and she was stat'ing pretty well. I stopped by the NICU and held Lily for an hour, which was great. She stat'ed in the mid 90s for the most part while I held her, so she liked it today!

She did have two bradycardias, one of which was during Sara's visit in the morning. "Bradys", they're called. They're horrible. Seeing your kid's pulse drop to 35bpm - about one beat every two seconds - is terrifying. But, they're apparently a very typical part of prematurity and RDS (respiratory distress syndrome). It's just a matter of getting them to come out of it... usually by light tapping on her chest or back, like a jump-start.

Lily's hematocrits (crits) are coming in borderline... They like to see a level of 130, she's at 130.5. In the past, they've transfused blood to replace the crit levels, but they're not doing another transfusion just yet. If they keep transfusing blood, her bone marrow may get the wrong message to stop generating crits, in which case she'd become reliant on transfusions- which we obviously don't want to happen.

Otherwise, her sodium levels are still a bit low so she's getting the occasional sodium vial into her feeding tube. She's still tolerating the 6.5 ml/hr breast milk nicely, which is huge.

So, all said... a good day! The fact that she's digesting well, breathing on her own (with some help), and isn't showing any signs of infection or brain bleed - each are miracles! Thank you everyone for the thoughts and prayers. The blog just passed 15,000 views in a bit under a month - amazing!

Day 26: Has it really been 26 days already?

Lily is doing well! Her blood oxygen levels still aren't as stable as docs would like to see, but the settings on her vent don't need to be kept terribly high, and Lily hasn't had any more bradycardias. The doctors are saying she's "stable, but still critical". We ask all the time if she's "out of the woods yet"...

"This is the intensive care unit..." they say, pointing at the sign above their head and smiling a bit. One nurse said she'll be out of the woods "when she turns 21"... guess she's right!

Lily is still on the SiPAP, her settings have been anywhere from 35% oxygen to 50% oxygen in the last couple of days - a little up and down. Sara and I are so, SO thankful they haven't needed to intubate her again. They usually have to increase her oxygen when she's being held; today, when I was holding her, her oxygen was set at 50% - she starting desat'ing after the first 30 minutes, and I had to return her to her isolette. Still, that half hour was great! Some days she has 'good holds', some days not - it's really a roll of the dice.

She's starting to pack on the weight! In the last three days, she's gained 100 grams - so she's weighing 2 pounds, 4 ounces now. She put on 50 grams last night - her biggest gain yet! She weighs 980 grams now. Today they increased the rate of her breastmilk to 6.5 ml/hr, and she's still tolerating digesting well.

All said, it was a weekend that started off rough but ended well. Yesterday, Sara and I took Addie down to the river to throw rocks for an hour - she loved that. We made s'mores in the back yard later on in the evening... today was lawn mowing and a nice midday snooze for all of us. Nice to get back to doing some normal things!

Thank you again, everyone, for the prayers, well wishes, and thoughts. Lily is doing well - there are more good days than bad - she still has a long road ahead, but having made it this far is, in a word, miraculous.

Quick rundown of the positives that come to mind...
She's on full feeds and is digesting well
She's breathing on her own, no more intubation!
She's still tolerating the SiPAP on moderate settings
No surgeries, which is amazing
No brain bleeds, also amazing
No infections, amazing trifecta
PDA closed with medicine
We can usually hold her twice a day

Day 25: a good one!

Lily is still on the SiPAP! Both Sara and I got to hold her today, each for about an hour... her blood oxygen is still dropping occasionally, though somewhat less severely, and they were able to wean her down to 35% briefly, before increasing back to 50% during her diaper change.

Lily put on 40 grams yesterday, and 10 grams today- she's holding steady above 2 pounds!

So, all said, a good day! Lily's doctor used the word "stable", despite all of the blood oxygen dips... And she hasn't had any more brandycardias! We have a lot to be thankful for. Here's hoping for another good day tomorrow!

Day 24: The times that try our souls

"These are the times that try men's souls."

Thomas Paine was a pretty smart guy. How right he was, and how timeless a quote that is. Indeed, these are the times that try our souls. It's a real test of the human spirit. 

How much can you stretch it before it breaks? I wish I knew the answer.

Lily is having a rough day. She's de-stating all the time, has had more Bradycardia's in the past 24 hours than she's had in the past week (three). They took a lung x-ray this morning to see if it the difficulties she has been having is caused by anything specific- they didn't see anything in particular, other than the acute RDS that's indicated by cloudy-looking lungs. So their next guess is that she might be starting to fail on the SiPAP... basically just getting tired of doing all the breathing on her own. They're going to keep trying SiPAP, monitoring her very closely, to see if she can pull through it. But if she keeps up like this, there is a fair likelihood that she'll have to go back on the tracheal ventilator.

I think it was Mother Teresa who said "He doesn't throw anything at you that you can't handle, but I'm really beginning to wish He stops thinking that I am so strong".

Now, those of you know know me know that I'm not exactly "saintly" - and I'm sure as hell no Mother Teresa. But I see where she was coming from. I just wish this would all stop, because it absolutely sucks. It's all good and well to stay positive- we're trying- but staying positive and hopeful doesn't negate how overwhelmingly horrible of a situation this is. It's so tempting to ask "why" - but we can't go there. No answers, and no upside, in trying to guess why we were chosen to take this journey. 

But we're on it, we're strapped in, and the brakes don't work. 

I'm ending this post with a few positives that we're trying to focus on right now:

1. Lily is still on full feeds,  is still digesting well, and seems to be holding steady above 2 pounds.

2. No signs of infection in the lungs, and no signs of cranial bleeds.

3. She's receiving all of her nutrition from fortified breastmilk

And most importantly - Lily is 28wks gestational age today, and she is STILL ALIVE, and STILL FIGHTING!!!


Thank you all for the support, and for keeping us and Lily in your prayers. Hoping for a better day tomorrow.



UPDATE: Why wait for tomorrow when today is still fixable? I'm at the NICU now (3:30pm) and Lily seems to have fought past whatever was plaguing her this morning and yesterday! She's on 45% oxygen, and is finally stat'ing well without the frequent dips. I'm seeing mostly 95% blood oxygen and above, with only the seldom dip down to the mid 80s, but she pulls herself right back out of it. Lily hasn't had any more bradycardia's since this morning, which is good. Here's hoping we can end the day on a positive note!

Lily is such a fighter. Strongest kid I know!

Day 23: Date night

Well, today reminded us that we're not out of the woods yet.

I had planned a date night for Sara and me - dinner in Tarrytown - close to the hospital, so we could stop by  for a visit after dinner. The dinner was excellent - I had the branzino, Sara the sea scallops. The restaurant was called Tarry Tavern on Main Street - highly recommended! It was really great to get out, just the two of us. Something we don't do often enough!

We stopped by the hospital afterwards and visited Lily. Her nurse said she's been "doing great", but that they had to increase the oxygen in her ventilator to 50%, and bump it up to 60% for her cares. (She's really sensitive - doesn't like to be messed around with!) So, up from about 30% a few days ago. This gets Sara and me worrying if she's tiring of breathing by herself on the SiPAP... but her nurse said rapid breaths (almost like panting) are usually indicative of tiring, and Lily's not breathing rapidly, which is good.

So, when we arrived at the NICU her oxygen level was in the low-to-mid 80s. All the nurses think parents focus in on the numbers too much... we probably do, but it's really hard not to. Anyhow... we sat with Lily for about a half hour, she was stuck in the 80s, desat'ed* a few times to the 70s, but climbed back into the 80s. (I learned today that it's deSAT'ing, not deSTAT'ing. Desaturation of the blood... )

Then, all of the sudden, those goddamn alarms (I'm really beginning to hate them) started ringing - like the sound of a dying bunny rabbit... that's what those alarms sound like to me. Lily's blood oxygen level started dropping to the low 60s, and then her heart rate started dropping again. It's the worst when her heart rate drops. You don't know if it's going to come back up.

180 beats per minute is normal. But I'm seeing 140, then 120, then 110. Then it's below 100, I'm seeing it drop and drop and drop, down to the 70s. Now the words

*** EXTREME BRADYCARDIA ***

appear in flashing red on her monitor. A bradycardia is when the heartbeat slows below 60 beats per minute, or 1/3 the rate it should be beating at. Sometimes they're caused by brief periods of apnea, or not breathing. Now Sara and I are both freaking out. How can we go from such a good streak back to this? Apparently bradycardias are a "normal" part of the NICU roller coaster.

Normal. Ha. Nothing about this is normal. This is a total nightmare!!

Where was I... so, she's right in the middle of a bradycardia. Lily's nurse is adjusting her SiPAP mask, I think she was tapping her on the chest to try and 'jump-start' her. She suctioned Lily's mouth out and the numbers start rising... blood oxygen at 60.... 70.... 80.... 90.... 95! And pulse right back where it should be. She had some pooled saliva or something at the back of her mouth.

And that's what it's like to take a dip on the NICU roller coaster. It's the most nerve-wracking, horrible experience imaginable. Goes without saying that it's difficult to leave the hospital after an episode like that.

We just called, and her nurse said Lily's blood oxygen is in the mid 90s, with the ventilator set to 50%. She's doing well for the time being... great news!

So that was date night. Still staying positive, but still on the NICU roller coaster. Thank you all for the prayers, the positive energy, the notes of support and stories of hope - they keep us strong!

So.... what happened?

So... what happened?

That's a question we've been hearing a lot of recently. It occurred to me that I never explained why Sara went into labor so early. 

Throughout the pregnancy, starting at about 18 weeks, there were progressively severe issues. Sara has an excellent OB and midwife, who referred her to another excellent high-risk pregancy specialist in Mount Kisco. After 5 or 6 ultrasounds, still nothing could be identified, though the symptoms persisted. The doctors were looking for bleeding around the baby (in the uterus), but saw nothing. They thought it might be what's called a placental abruption, whereby parts of the placenta (which provides nutrients and oxygen to the baby) tear away from the uterus. Abruptions occur in 1% of pregnancies. Typically, abruptions would be indicated by pooling of blood in the uterus - but doctors saw nothing. As a precautionary measure, they put Sara on modified bedrest, told her to take it easy, not go into the city, not pick Addie up - just take it easy.

And she did. She really committed to it. I was a bit of a drill sergeant about it, but generally speaking she was really good about taking it easy. The symptoms began to pass, and Sara was getting ready to go back to work in a week. And then June 25th came. 

I had just gotten to the city, landed at my desk after the commute. My cell phone rings - it's my neighbor, Pat. 

My neighbor? Pat never calls me. I picked up the phone. 

"Max, you gotta come home now. Addie's ok, Sara's ok, but there's an ambulance here, Sara's really upset, and you gotta come home now."

Here's where it gets kind of blurry. I grabbed up my stuff, raced out the office door to Grand Central, and caught the next train to Tarrytown. A cab at that time of day would have taken an eternity. Sara and I must have spoken, because I knew she was going to Westchester Medical Center (WMC) instead of the regional hospital close to us; we'd planned previously to go to WMC since it has the level IV NICU, and the regional medical center doesn't have a NICU. 

I should pause here to highlight something - Sara felt that something was very, very wrong. She laid herself down on the couch and called 911.  When they got there, the ambulance drivers didn't want to take her to WMC. By law, they have to drive to the nearest hospital. I don't know how she convinced them - but she convinced them to take her to WMC. In doing so, with that one decision, she saved Lily's life. Had she been taken to the regional hospital (which has a MUCH slower ER and labor/delivery section), Sara would not have received the steroid shots that act as a booster for prenatal lungs. 

So where was I...  I jumped in a train to Tarrytown, which is the closest train stop to WMC. Must have been about 10am by this time. I only remember that I had no idea what was happening. For about an hour, I didn't know if Sara had delivered - had no idea. Just knew she was in an ambulance on her way to WMC.

When I arrived at WMC, I ran up to Labor & Delivery and found Sara, still pregnant, in bed with contraction monitors and a prenatal heartbeat monitor. I remembered the scene all too well from her pregnancy with Addie, which was also fraught with complication (though she carried Addie 99% to term). 

There were no contractions on the graph, and the baby's heartbeat was nice and strong. They told us there was a 50% chance the baby was coming, because Sara was 4" dilated and the diameter of the baby's head was only a touch over that. Sara's water had not completely broken, but amniotic fluid was present so they suspected a leak or small tear. I distinctly remember them sitting us down and giving us what I call the "hell talk". It was the first time I'd met someone who worked in the NICU. She gave us all the statistics - 50% chance of survival, 80% chance of developmental issues, ventilators, IVs, monitors, resuscitation out of the womb, and so forth. 

The hell talk. That was the first time it really hit me, but somehow, I still didn't think she was coming. Looking back, I was in total denial. 

Sara was still in Labor and Delivery, which is different from the Maternity ward. I could sleep in the same room as her in L&D, but not in maternity. I remember sleeping until about 2am, at which point they moved her to maternity, and I drove home. 

The next morning, around 9am, I got a text message from Sara:

Come now. 

Grabbed my stuff, raced off in flip-flops to the hospital. Flip-flops. 

Got to the hospital, still no signs of contractions. Doctors didn't want to examine Sara too often for risk of infection, so there was no way of knowing whether she was progressing towards full-on labor. She didn't feel like she was in labor - no contractions - so the baby wasn't coming, right?

WRONG.

Sara started feeling a little pinching in her back around noon. Nothing major, nothing like labor pains. As a precautionary measure, they moved her back to Labor & Delivery. I still didn't think the baby was coming. I still thought she'd go to 30 weeks. 

In L&D, an obstetrician examined Sara. 

"You're fully dilated. The baby is coming."

(I'm just commenting to Sara how insane it to be reliving this whole thing. Crazy.)

So, this is where the freight train hits us. Sara's 24 weeks, the baby is coming, and there's no stopping it. 

Not a freight train. The hell talk was a freight train. This is more like a hydrogen bomb exploding right under your feet. The doctor started asking Sara if she wanted to deliver naturally or by cesarean. The baby was breached (feet down), so he explained there was a higher risk to the baby of delivering naturally - if the umbilical cord came out first, it would be a full scale emergency for both mother and child. Delivery by cesarean has its own risks - it's serious abdominal surgery, after all - and they would be doing a 'classical' cesarean, which has a much longer recovery time than a normal c-section. 

Sara elected for the cesarean. I supported whatever her decision was, and agreed completely that the baby's  inevitable rough start shouldn't be at further risk. I, however, was not the one going under the knife, so I left the decision entirely in her hands. 

Lily was delivered at 3:58pm on the 26th. As soon as the docs opened Sara up, the surgeon immediately said "we have a chronic abruption". They saved her life that day by taking her out - she would not have survived in the womb. 

After they delivered Lily, I was able to look at her for about 10 seconds. Sara didn't get to see her. She didn't look that bad at first - just a little tube in her mouth. At first. The docs told me I could go see Lily in 45 minutes, but that Sara would take about an hour to recover. I waited. 

And waited. And waited. 45 minutes goes by. 

"They're still working on her".

An hour. Still working on her. 

Another hour. Still working on her. 

The fact that they hadn't come to get us to urgently be with Lily was good - we took comfort in that - but we had no idea why it was taking so long. Little did we know that Lily was very difficult to resuscitate out of the womb - that's what took so long. 

Eventually, I went to see Lily. Sara was still in bed, recovering from surgery. If the pre-delivery news was hydrogen bomb #1, seeing my daughter for the first time was hydrogen bomb #2, #3, #4, and #5. But she was alive. 

And so began the dark days. I didn't write too much about day 1, 2, and 3. They were very dark, empty days. But things are better now - Lily's still fighting, Sara and I are still strengthened by her battle and are still laughing by Addie's antics. Staying strong!

Day 22: Wait... did he say stable?

Another good day... Sara got to hold Lily for the first time today, which she did for about an hour. I haven't seen her this happy in what feels like ages! Good stuff. What else... Lily's nurse used the word "stable" yesterday! Yes, STABLE!!! He (no, his name wasn't Focker) said there's a chance Lily could be moved up to the next room as early as next week, since she is on full feeds, the SiPAP, and is doing well- all very good things!

Otherwise, Lily lost 10 grams last night, so she's weighing in at exactly 2 pounds. Docs tell us those small weight drops aren't anything to be concerned about. She's stat'ing pretty well in the mid 80s, on only 30% oxygen, less than 10% above room air. Unfortunately the nurses said I shouldn't hold Lily today, since I have a little something going on in my upper chest. Just a bit of congestion, but not worth the risk of passing anything to Lily.

Sara was at the NICU and met with a few of the board members at Hailey's Hope Foundation today, who stopped by to drop off packages for the NICU families. It's really an amazing foundation... they help out 30-40 NICU families a month with anything from gas cards, to lunch vouchers, to stays at the Ronald McDonald house. They've never denied a single application! I did the math on what we're spending on gas- two trips a day, 16 miles each way, $3.80 gas, our car is averaging 18 miles per gallon (we weren't exactly planning on driving 1,000 miles a week when we bought a SUV the week before lily was born...) So, we're spending just shy of $400 a month on gas alone. HHF gave us gas cards that cut that cost in half! 

So, a BIG thank you to the folks over at HHF, and especially to those who have donated. I was told of another $260 in donations made in Lily's name today... Amazing! Thank you, so much, for your generosity! Know that you are helping dozens of NICU families with the little things- a few full gas tanks, or a quick bite to eat after a morning at the NICU - that stuff's priceless. HHF is a small, local foundation, so every dollar really does make a difference. Thank you!

And another big thank you to my old friend Hillary in Massachusetts, who is running a half-marathon in Lily's honor! In doing so, she is also raising money for HHF. She is supporting a truly good cause, and I can't thank her enough for running for Lily and Hailey's Hope Foundation. Really, just awesome!

Well... so far, so good! She's pulling through. The prayers and positive energy sent Lily's way are definitely, definitely working miracles! Please keep them coming... each one is a miracle breath, and she needs as many as she can get!

Day 21: Three weeks, and two pounds!

Lily is now three weeks old, and she crossed the two pound mark today! She weighs two pounds, one ounce, having added five ounces to her birthweight - a gain of about 17%. 

Five ounces... the biggest five ounces I've ever encountered! 

She's still around the 30-40% range on her SiPAP, and I was able to hold her again today for about a half an hour. She's digesting the 6mL/hr of breastmilk at a good rate, and all of her plumbing is working. The doctors and nurses keep telling us how well she is doing - "my, what a difference three weeks makes", Lily's attending physician said today. Things are really looking up! The first week of life is all about survival - the second week of life is about reaching critical stability - the third is transitioning to full feeds - from here on out, it's all about Lily packing on weight and growing!

All in, it was another very good day. Slowly but surely, more normalcy is returning to life. I went golfing with a client in central jersey, had a great round (for me) and shot a 102... breaking 100 isn't that far away! It was a great day for it - not a cloud in the sky. Had a blast! It is, indeed, still possible to enjoy life a bit. 

I stopped by the NICU on the way home from NJ and stayed for about an hour and a half, came home, cleaned the pool (again), played with Addie, and am now about to crash! 

So... these posts are getting shorter... boring is GOOD!

Day 20: An amazing day

Another good day! I stopped in for Lily's 8pm care and got to hold her for the first time! She's still doing well on the SiPAP at moderate pressure settings and oxygen of between 35-40%. She's not really de-stat'ing too much, and when she does it's only to the 70s - she generally pulls right out of it without needing any additional oxygen.

Lily's sodium level did come up a little low in last night's blood test, so the doctors have her a small booster of sodium chloride.

It's been a few posts since I've listed out all the positives, here's another quick run of the top 5 - we have so, so much to be thankful for. Each breath is a miracle breath - each day is a gift.

1. Lily is doing well on the SiPAP, and she isn't de-stat'ing often or with great severity. She's breathing on her own!
2. Lily is now off of the electrolyte/nutrient solution (the gatorade looking stuff) - which means all of her nutrition is now coming from breastmilk!
3. We're able to hold her now! When I held her this evening, she really seemed to really enjoy it. It was one of the happiest times of my life.
4. Lily is up to full feeds, and is tolerating it well so far! She is now receiving 6mL/hr of fortified breast milk, and if she tolerates it well through the night they're going to remove the PICC line tomorrow! Amazing!
5. No brain bleeds and no infections to speak of!

And, we are about to celebrate three weeks of life!

When I look into Lily's eyes, I see a warrior. I see someone up against all odds, fighting for her life... and so far, she is winning. When I started writing this blog, I had no idea how the story was going to end... it was a terrifying, horrible thing, but I just felt like I had to write it down. Here we are, 20 days into Lily's Battle... about to celebrate three weeks of life! Thousands of people all over the world are rooting for, and praying for, Lily - and I am confident that this story will have a happy ending. Here's another picture of our rather peaceful looking fighter - (it looks like her skin is peeling around her nose, but it's not - it's protective tape for her breathing mask.) 

Thank you everyone for your prayers and well wishes - they are working miracles, one breath at a time!

Also - A huge huge thank you to the very generous family who today donated $5,000 in Lily's name to benefit Tri-State NICU families. Our family is deeply touched - thank you.

Day 19: A Good Week Behind Us! ***Hailey's Hope***

Another good day, could it really be true? Seven good days in a row, and Lily is still doing well on the SiPAP! They stepped her up to 5ml/hr of breastmilk today, which is almost a full feed (6ml/hr), and she's tolerating it nicely! Seeing Lily doing so well really keeps Sara and me going. We're more hopeful than even before that Lily will make it though this ordeal. Barring any unforeseen turns for the worse, things are really beginning to look up!

This whole experience really has made me believe more strongly in the power of prayer, hope, faith - in short, the power of good energy! Thousands of people, all of the world, continue to pray for Lily and hold her in their thoughts- at home, at church, in prayer groups, and around the dinner table- family, friends, colleagues and even strangers have been rooting for and praying for our Lily... and she is doing really well!! Against all odds, she's winning the fight for her life one day at a time, thanks to all of you - in America, Canada, the UK, Russia, Germany, Brazil, Singapore, India, Italy, Jordan, the list goes on... Thank you all for your prayers and well-wishes - THEY ARE WORKING MIRACLES!!

With that, Sara and I are very proud to share with you Lily's first unobstructed picture :) They switch her air mask occasionally, and Sara and I were able to snap a few pictures! Here is our beautiful baby girl, our fighter, our little warrior - and my personal heroine - strongest kid I know!

You can see the PIC line in her left arm - hopefully, it comes out this week since Lily is almost up to full feeds. Her stomach looks a little large, that's in part due to the positive air pressure in her SiPAP.  The other wires on her chest are just monitors, and you can see the line of breastmilk going into her mouth, into her stomach.

She usually looks this peaceful now that she's on the SiPAP - mostly snoozing away, which is good. She isn't flailing around as much as she was on the tracheal ventilator - she much be more comfortable without the big tube down her throat.

So many of you have asked how you can help. The fact is, you have already helped - by your prayers, emails, calls of support, and stories of hope. The support we have received from all of you has been amazing, and my wife and I thank you for it from the bottom of our hearts. We would not be able to do this without our support network. Frankly, one of the things that kept me from losing my wits during those first few dark days was seeing the hits on this blog adding up by the thousands. Does it sound silly? Maybe. But knowing that a thousand people were reading Lily's story every day, saying a thousand prayers and sending a thousand well wishes... in a way, it made the emptiest days feel a little less empty. Knowing that so many people were (and are) rooting for Lily helps tremendously.

We are very fortunate to have excellent insurance that will cover all of Lily's medical expenses, without cap. Considering the NICU bill will be north of $1 million, that is a real blessing to say the least!! For the expenses that are not covered by insurance, but add up quickly (basically gas & 2x daily parking at the hospital), a really fantastic foundation called Hailey's Hope (http://www.haileyshopefoundation.org/) is sending us a few gas cards and parking permits.

Hailey's Hope Foundation (HHF) is a NY-based 501(c)(3) organization that benefits families with premature and seriously ill babies in the Neonatal Intensive Care Unit (NICU) at the Maria Fareri Children's Hospital at Westchester Medical Center, where Lily is receiving care. The foundation's benefits aren't need-based... Hailey's Hope supports any and all NICU families with the 'little things' that tend to add up.

The Maria Fareri NICU annually cares for about 60% of all premature and seriously ill babies born in the region, treating about 1000 babies each year. That figure is comprised of about 700 infants born above 3 pounds with complications, 225 infants weighing below 3 pounds, and 100 infants weighing below 2 pounds. While Hailey's Hope currently focuses on supporting families at the Maria Fareri NICU, they have the goal of expanding their reach to provide assistance to NICU families in other hospitals. I will be the first to say that the care that Lily has received has been top-notch, truly amazing and the epitome of healthcare as far as I have experienced it. We spoke with a doctor a few weeks ago who has taught for the past 30 years at the UCLA, Harvard, and Yale NICUs; he told us that in his experience, he has found Westchester Med Center to have the best Level IV NICU in the country.

In support of Lily's Battle and other NICU families, and with the aim of raising awareness for your local NICU and the miracle workers within its walls, I am trying to help raise funds for Hailey's Hope. I don't have any specific goal in mind - anything will help NICU families. All donations to Hailey's Hope are fully tax-deductible (their tax ID number is 26-1387176). This link describes how donations were spent during 2011.

Donation Form (http://www.haileyshopefoundation.org/pdfs/donation_form2.pdf)

Information Brochure (http://www.haileyshopefoundation.org/HH_brochure_3-10.pdf)

If you would like to donate in Lily's name:

i) By check: Please mail the completed form and check directly to the Foundation, their address is: Hailey's Hope Foundation, P.O. Box 32, Goshen, NY 10924

ii) By credit card: Please email the completed form directly to info@haileyshopefoundation.org

iii) By PayPal*, please refer to the link on this website (http://www.haileyshopefoundation.org/donate.htm)

* Note: Paypal takes a small (2%, I think?) processing fee out of all donations. If you choose the Paypal link, you will be able to designate the donation in Lily's name after clicking 'submit'.

Any amount, even $5 dollars, helps a NICU family. I hope you'll consider supporting Hailey's Hope, it is truly a fantastic organization, by making a donation celebrating the birth of Lilliana Hope Schlubach. Please don't forget to note her full name, so I know to thank you personally!

Whether or not you donate - know that Sara and I are deeply appreciative of your prayers, your thoughts, and your well-wishes. They have an immediate and noticeable impact on Lily's battle - they are working - they give her strength to keep fighting her battle, and they give us strength too!

Day 18: Beating the odds

Slowly but surely, it feels like we're getting out of the thick of the woods! Lily is still doing well on the SiPAP, and they've been able to wean her down to 35% oxygen on the ventilator, just a bit above room air. They also turned the rate on the SiPAP down from 30 to 20 small bursts of air per minute, because Lily is doing more of the breathing on her own.

She's stat'ing fantastically, and the nurses are saying things like "doing very well", which is music to our ears! I think the doctors notice us getting more optimistic; they give us little "reality chats" every now and then, reminding us that although lily has been on a nice run the past few days, we still have a long way to go. The doctors there are excellent; they'll sit and talk for 30 minutes about different things.

They've increased Lily's feed rate to 4ml/hr today, she's tolerating it well. They increase by one half a milliliter per hour every day- half a milliliter... about one drop. If they're able to get her to 5.0ml/hr by Monday, they might take out the PIC line that feeds her electrolytes/nutrients, because she'll be getting enough from the fortified breastmilk. It's called a 'full feed'.

We learned the main reason they need fortifer: calcium. Lily's bones grow at such a rate that breastmilk doesn't have enough calcium/calories/protein.

We decided not to do the milk fortifier research study. If Lily had a setback - any setback, whether or not it was related to the study - how could we live with ourselves? We hate not to contribute to science, and frankly we felt selfish after telling the docs we weren't going to do it. It would be one thing if Lily was having difficulty gaining weight, but right now everyone is running relatively smoothly- why introduce an unknown? The more I think about it, the crazier I think I was to consider it for a few hours.

In any case, Lily is doing really well! I heard her cry a little bit, for the first time, yesterday. It was a hoarse cry, due to the irritation in her throat from the jet ventilator. Her eyes are opening wider, and she looks alert! We should be able to hold her in a few days... as soon as Addie's cough clears up, and we can be sure we aren't carrying anything.

Here are those pictures I promised a few days ago

Thank you everone for the prayers, and notes of support - they really are working miracles every day!

Day 17: Another good one!

Another good day... we're on a hot streak! Lily is still doing well on the nasal ventilator, which I learned today is a SiPAP, rather than a CPAP. Her oxygen is set at 45%, so they've been able to wean her down nicely since yesterday. She's up on her feeds, to 3.5mL/hr, and they are going to start fortifying her breastmilk with calories and proteins tomorrow. And no major de-stats!

A doctor approached me at the nicu and asked if I'd be interested in Lily taking part in a medical research study being run by Abbot Labs; the intent of the study is to research the effects of a new experimental breast milk fortifier that is supposed to help preemies gain weight more quickly. The control group gets the standard fortifier, which derives its protein from nonfat milk and whey protein, which provides 3g protein/100cal. The  experimental fortifier derives its protein from hydrolyzed casein (alimentum protein). It also has lutein and beta-carotene, extra vitamin D and added DHA.

It's a double blind randomized study, so we wouldn't know if lily is getting the control or experimental fortifier. The doctors said that 150 babies have been on the study so far. Sara and I are going to ask the doctors a few more questions tomorrow- either way, she'll be getting breast milk fortifier of some sort, which is great!

Lily looks much more comfortable on the SiPAP- she sleeps more, too. So, we have another good day behind us! The prayers are working, each one is a miracle breath... Thank you all!

Day 16: Not only good... Great!

Today was a great day for Lily! Her best day yet :) She was set at the lowest pressure settings on the jet ventilator, so they took her tracheal ventilator out and moved her to the CPAP- and she's tolerating. Seeing her breathe on her own was an amazing feeling... they're miracle breaths.

Still, we have to remind ourselves it's just one day. Tomorrow is another day, and we're still on the NICU roller coaster. There are ups, there are downs - as long as the good/bad day ratio is higher than 1, we're moving forward, and Lily is winning her battle.

Right before they extubated her, the physician told gave us a straightforward talk: this is a step, but it's just a step. It doesn't always work out, and some babies need to get intubated again... "don't be surprised if you walk in and see her back on the ventilator."

They call it "failing the CPAP". Some babies fail within a few hours, some a few days, others after a few weeks. They just get tired of breathing. That said, the doctor also said she's seen "a lot" of babies stay on the CPAP until they can breathe without any assistance. The CPAP mask looks like a sleep apnea mask, fits right over the nose.

On the jet ventilator this afternoon, lily was stat'ing really well in the 90s (no dips) with the ventilator set at 30% oxygen and a PEEP of about 15 cmH2O; PEEP is a measure of the force of the air being pushed into her lungs. The PEEP on the CPAP is much lower (~5), because she is doing the rest of her breathing on her own.

When they switched her to CPAP around 5pm, they initially had to dial up her oxygen to 75-80% to keep her blood oxygen in the 80s... they called it the transition period. We saw a few dips to the 70s, but nothing too bad. I visited her at 8pm, and she was stat'ing well (90s) with about 60% oxygen. We just called to check in (11pm), and she's still tolerating it nicely without de-stat's!

So we have a lot to be positive about today. Seeing Lily breathe on her own gave me a sense of joy that I haven't had in what feels like a lifetime... baby's steps, but this is a great one. Sara's wound is healing, slowly but surely; Addie is still a crazy toddler, so if that's any indication of her mood I'm pretty sure she's happy as ever :)

The blog passed 10,000 views today... amazing! Your prayers and positive vibes are working... each one is a miracle breath! Thank you all for the support and for following Lily's story. I'll be loading up some pictures tomorrow, so check back!

Day 15: Three in a row!

Today makes three good days in a row! Here are today's steps in the right direction:

1) Lily is up on her feeds, to 2.5mL/hr, almost to where she was a few days ago. She's tolerating them well, digesting at a good rate.

2) Her nurses were able to wean down further on both the ventilator's air pressure and its oxygen saturation. She's been stat'ing well at between 25% and 30% oxygen for most of the day, with the occasional de-stat down to the 60s or 50s (blood oxygen saturation). Right now, I'm at the NICU and her ventilator is set at 28%, just 7% above room air, and she's stat'ing well... mid 90s!

(I stopped writing for a minute and she de-stat'ed, down to mid 60s, but then she bounced back up to 92... roller coaster)

3) There's another positive- even though she de-stats, she's been mostly pulling out of them on her own, without the nurses needing to crank up her oxygen.

4) Lily gained 30 grams! She's now 850 grams, or 1 pound 14 ounces

It's strange that this is starting to seem so normal. Never in a million years would I have guessed that Sara and I would be NICU parents. But they're not as uncommon as I thought... Every day, I hear stories of hope - they always put a smile on my face!

The docs are talking about switching lily to the CPAP (continuous positive air pressure) ventilator, which would get the breathing tube out of her throat. She would still have the feeding tube, but that's much smaller. The thing that worries Sara and me about the CPAP is that since it's only positive air pressure, and all the in/out movements are left to lily, she may have episodes of what are known as "Brady/apneas". During Brady apneas she basically would stop breathing for 15 or so seconds, and heart rate sometimes falls. I heard s few other NICU parents talking about them in the elevator- apparently they can continue after preemies are sent home, and sometimes preemies are sent home with monitors for their sleep.

Sara and I saw a family leaving the NICU with their baby the other day. Hard to describe how much we want to be in those shoes.

Thanks everyone for the support and prayers-- they are working!

Day 14: Two weeks, and a good day!

Another good day, and we're celebrating two weeks of life today! Huge, and even though we're just at the beginning of the journey, it feels like a major milestone. Lily was on 30-35% oxygen (9 to 14% above room air) for most of the day, and her blood oxygen stayed in the 80s/90s for the most part, without extreme de-stat'ing. The nurses even got her down to 28% oxygen in the ventilator for a few hours!

She's noticeably starting to wake up to the world... she's very active, flailing her arms and legs around when she's on her back. She tugs at her ventilator tube sometimes, but the nurses say all preemies do that since there is some throat irritation. If a little throat irritation is today's biggest problem, I'd call today a good one and hope for another one tomorrow :)

There are times when we've seen lily cry- for instance, when she gets a new IV line, when they have to remove (slowly) adhesive tape, or when she has a wet diaper. Just like 'normal' babies (Sara and I now call them 'giants') - preemies cry! Only they do it without making a sound, since the breathing tube blocks their voice box. We mentioned the crying to a few folks and they became really uPset. It doesn't bother Sara and me though. After all, babies cry... not necessarily because they're in pain. Same goes for preemies. Lily is still a baby... just a very, very small baby for the time being.

In honesty, we're far from sad when we see lily cry a bit. Maybe it's hard for people to understand why we aren't upset - if anything, it gives us more hope, seeing that ine aspect of normalcy. After all, she is reacting to her environment... that's a good thing!! She knows when her diaper is wet, she knows when she is uncomfortable and wants to be moved around, and yes she feels pain when she gets an IV prick... just like a normal baby. I'd be much more concerned if she wasn't crying, or reacting to external stimulus. But so far, she is. And that's a blessing.

This blog is rapidly approaching 10,000 views. Thank you, everyone, for your prayers and well wishes. The support, stories of hope, prayers and words of strength that we are receiving from family, friends, colleagues, and strangers has been amazing.

One day at a time... we have two good ones behind us. Let's hope for three in a row!