Saturday, January 31, 2009

Sweet Crewton

My tank is now 2025 ounces or 4 pounds, 7 ounces. Thumb sucker, thumb sucker...
Being surprised!
This bottle that looks so big is only a 2 ounce bottle, about 6 inches high.

He Pooped!

I never thought I'd be so excited over a messy diaper. But I am! Yay! Though they were threatening him with a suppository, in the end (pun intended) he performed all on his own! Hallelujah, bowels are up and running!

They tried to bump him up to 14 cc's every 3 hours but that is more than he is willing to take at the moment. They are being more reasonable than they had previously described, at least today. He'll take 10 cc's with a lot of encouragement and mess, and they'll continue to offer him the additional 4 cc's every feeding until he eventually takes it. No feeding tube is being discussed for now. He's still getting most of his nutrition intravenously. Every time they increase his feeds (and he takes it) they decrease his artificial drip.

I wish I could have my primary nurses once in a while, but everyone that signed up is so good and so experienced that they get pulled for sicker babies so we never ever get them. We wave sadly to each other from across the hall and Crew continues to have a different nurse every 12 hours.

And... I don't know why I feel the need to defend myself, but I do. I need to put it out there that I'm not ever rude to anyone at the hospital, despite how I may describe my outrage. I'm actually terribly diplomatic and polite and only very rarely bare my teeth. Yes, of course my interference my still frustrate them, regardless of how gentle I may be in my approach. I use my blog to fully vent the magnitude of my indignation, but I never risk compromising Crew by insulting people and I only throw someone under the bus when there are absolutely no other options, which is almost never the case. Only once have I completely lost it and made a spectacle (our first day). And, LOL, our new friends in the neighboring isolette were terribly amused :) Despite the sassiness of my blog, I actually hate confrontation. It makes me nauseas and sleepless, so I try really hard to avoid it. This experience has really thrust me out of my comfort zone.

I went shopping for Crew today. I bought him some new clothes because he is ready for preemie clothes! Normal preemie clothes! They are still very big on him, but I'd still say that he fits in them at last! He is also maintaining his body temperature so they are not using the bed warmer any more. Leaps and strides my boy is making! Go, Crew!!

Friday, January 30, 2009

Hernia

Yay. And so it goes. Crew has a Bilateral inguinal hernia that will need to be corrected surgically. He'll have it looked at again a little later today. I have been suspicious for a while and it is very common in preemies, especially little boys.

In other Crew news, he has been upgraded to 10 cc's every 3 hours. He was so frantic and starving and desperate yesterday that he inhaled every drop and cried for more. Today he didn't even appear interested in eating, at least not at his 11:00 feeding. It's such a regimented, unnatural way to feed a child, I think. Eat the exact same amount exactly 3 hours apart. We'll wake you up to eat it and if you don't drink it, we'll shove a tube down your nose and make you take it that way. If you want more, then too bad; you'll have to cry and maybe be sedated. His stomach is going to take time to expand and this learning-to-eat process could take a while. He might go home on a feeding tube. He hasn't pooped since starting to eat. I'm sure that has an affect on his appetite. I want him to poop before they start giving him more suppositories. Babies are easily addicted to suppositories, you know.

The High Maintenance Mom

I give up. Get me the t-shirt and I'll embrace the nutcase within. I've decided that it's ineffective to be any other way in my situatioin.

I mentioned before that I have been suspicious for a while about the hernia. It hasn't looked quite right "down there" for several days and I asked about it a few times. They kept saying that it looked fine, it wasn't a hernia, and went a step farther to say that if it was a hernia, it probably wouldn't be in that spot. I asked again today and while it was hard to find, it was definitely a hernia. And there are two, actually. (This isn't terribly important, but the person who found it first was actually a nurse that I love from our local hospital who happened to be on resident rotation at the Children's Hospital today. I snagged her as she walked by and asked her opinion. Good ol' local hospital.) Now everyone else seems to be able to find it with some effort and the surgery team will evaluate. For all you moms out there who may ever find yourself in a similar situation, trust your instincts!!! I was the only one in a position to recognize that there was a change and a difference from before and I had to push through the resistance (repeatedly) to have the problem properly diagnosed.

After that, I was feeling emboldened, so I marched myself down to the lactation office and had a great conversation with them about the gross disconnect between the lactation team and occupational therapy. I haven't detailed all of the stories and bizarre encounters on the blog yet, because I haven't had the time, but suffice it to say that the lactation specialist was suitably horrified with my stories.

My sister-in-law Kayla has been here all week and it's been so nice to have her here with her kids. I've been able to be at the hospital so much, which has been really important this week. It's nice to have live-in help that you can abuse. I introduced her to our mountain of laundry and she made friends with it. I have even seen the bottom of my kitchen sink this week, LOL! I love you, Kayla!!! I was also able to spend the night with my friend Hilary last night. She came to visit us at the hospital and I spent the night at her place, which is half the distance to the hospital. The shorter commute this morning was very nice.

Thursday, January 29, 2009

Who's Got a Fat Baby Now?

Oink, oink!

I'm glad I pressed them to at least get clear liquids started yesterday. They are starting him on milk this morning (yay!) and (this should come as no surprise to any frequent readers of this blog) no one knows why they didn't do it yesterday. Argh!!

Wednesday, January 28, 2009

Pedialyte

Some things about the Children's Hospital will never change. Their slogan is "the child first and always" but I think a more accurate slogan would be "inconsistency, first and always." Long, aggravating day. Lots of diplomacy and fake smiles while I tried to sort through the various messages about when Crew can finally eat.

Before surgery they tell me that he can eat when he finally poops or farts the first time, indicating plumbing is working. He farts all the time. Doesn't count. He pooped on Saturday spontaneously. Too close to his Thursday surgery. He pooped on Sunday spontaneously. Too close to his surgery. What? Seriously? No poop on Monday (what is he supposed to poop anyway??) Gave suppository on Tuesday, pooped within 30 minutes. Doesn't count because it was with suppository. Pooped 4 hours later spontaneously. Half the people say it doesn't count because it was too close to the suppository, half say that's ridiculous. Er? Stop giving him suppositories if those poops aren't going to count! Tuesday the legendary surgeon who did the surgery says "he'll eat tomorrow". Mom arrives early Wednesday morning to be sure to be there for surgical rounds that are almost always early in the morning. Wait at bedside. It's now 5 pm and they still haven't come. Legendary surgeon (the one on Wednesday rounds rotation, hallelujah) in surgery all day Wednesday so can't discuss clarification, so surgical resident seems to be making subjective decisions. No one can agree on the requirements for eating, no one can agree on what should be counted as spontaneous poop or not. Baby starving. Mom slightly pissy. Finally get authorization to start clear liquids. Gave 5 cc's of pedialyte.

Tuesday, January 27, 2009

4 Pounds!

I'd like to introduce to you my big fat baby. He is now FOUR POUNDS and FOUR OUNCES!!

It was so nice to see him back to his spry little self today. Holy smokes, when this kid decides to rebound, he takes it very seriously. Two nights ago they were having to emergency crash bag him with extra oxygen even on the ventilator. Today, he is on 1/2 liter pressure cannula, 21% oxygen, which is practically nothing at all. He's nothing if not totally unpredictable. He's kept us on our toes from the beginning!

We are keeping our fingers crossed that they will start feeding him tomorrow. He is ravenous. Now that he's feeling better and more energetic, he is trying to gnaw is arm off.

I had an unexpected conversation today. (Please remember that no one can predict anything, and even if they could, no two people ever agree anyway). With that caveat... we discussed the very real possibility that Crew won't be transported back down to our local hospital. Once he's on full feeds, as long as he's getting all of his nutrition through nursing or a bottle, he should meet all of their other discharge criteria and... are you sitting down? They can send him home instead. Yikes! Justin and I aren't sure we're quite ready for that step yet! I was excited to get him back down closer to home, but home home?? Anyway, there are a lot of digestive hurdles to be leaped before we have any kind of serious discussion on that issue, but it was interesting to think about anyway.

Well, Justin is home, so I better run. Here is my little guy, bright eyed and bushy tailed! So nice to see him with good skin color and open eyes again at last!


Monday, January 26, 2009

Off The Vent!!

Apparently I must have needed to get "just discouraged enough" for Crew to make the swing the other way. Thanks for your thoughts and prayers on his behalf. He is OFF the ventilator and is quickly returning to his old, happy, vibrant self! He is on a regular cannula at 21% and having a grand old time. I didn't get to the hospital today (groceries must be purchased, doctors appts must be attended, sanity must be sought) so the nurses are having a delightful time without me, rocking him and telling him what a brave, strong boy he's being. Sigh... up, down, up, down, up. And on we go! I can't wait to see him tomorrow and tell him how proud I am of him and how sorry I am that my faith in his resiliency wavered! See, I told you I wouldn't be gloomy forever :) And I think I've decided that tonight I'm going to willfully forfeit the middle of the night pumping sessions. The dairy is closing for the night; I need some sleep.

Sunday, January 25, 2009

Slow Progress

Crew is making progress, albeit much more slowly than any of us had hoped. He remains on the ventilator and I can see that it does no good to speculate about when he might be extubated. He's had major abdominal surgery, which makes it painful to breathe, and he just feels icky and tired all around. Can't say that I blame him. I hope he comes off the ventilator soon and I really really hope that he feels better soon. He still hasn't had anything to eat as he is waiting for his bowels to heal and strengthen. No nursing whatsoever and no bottles. He's on intravenous nutrition until sometime later this week, hopefully.

I hate seeing my poor little guy look so lethargic and weak. I've been so spoiled with his robust and vibrant behavior over the last many weeks that seeing him return to his less stable, weak state brings back bad memories. He definitely breathes better when I am with him, so even though it was a major ordeal to get him out of his bed, I was able to hold him for two and a half hours today. He was much more stable in my arms than in his bed. I was touched that as soon as he heard my voice when I got there this morning, they had to reduce his oxygen from his consistent rate of 29% down to 21% (room air) and he was still high-satting. He couldn't keep it up for long, but it let me know that he needs his mommy and even though he appeared sedated and semi-oblivious, he knew that I was there.


Today is "day of life 76." I can't believe we have been doing this for 76 days. I'm so tired. My hip is out of joint from the way I sit in the car for the commute and from the ergonomically totally incorrect rocking chairs in the NICU. I nap during the day when I can and I go to bed early and it makes no difference. I can't seem to make a dent in the level of exhaustion. I'm so tired that I can't focus on anything.

I know that Crew is my blessing and my miracle. This has been such a marvelous week for so many reasons, but it has also been draining. When I am not so exhausted, it is easy for me to trust that all is going to be well and to be blinded by all the brilliancy of the silver linings in my life and situation. When I'm in a disheveled mental place where I'm falling asleep while pumping, it's easy to get caught up in the drama of the NICU. When people tell you all of the horrible things that are happening or could be happening in his brain and body, you can only shut it out so long. The front line of the NICU sucks.

I know that he is going to be fine. And yet in the very very back of my mind I remember that I can no longer pretend that only "other people's" babies die because it's already happened to me. When he looks pale and he won't breathe and no one can tell me why he's not improving, the nurses don't realize that I'm demanding action and answers because I lost his brother only 76 days ago and I'm not ready to lose him too. I'm too tired and worn down to find my own compass this week. I really really do know that I need to not worry, but sometimes it's just too hard to fight the tide. Please forgive me if I'm not totally sane about the precariousness of Crew's life, considering my unique perspective. And some days I'm simply too tired to find any kind of peace and solace. That takes focus and energy and I'm running desperately short on both of those right now.

A lot of this is coming from the fact that he is so far away. When he was closer to home, I felt like we could endure it indefinitely. Running over to the hospital was almost a happy thing. This situation of having him far away, in a facility that I don't like or trust nearly as much, is much more difficult. Do you remember when I said "we have had so much more consistency with nurses this time!"? Well, that ended that very day. Since the day of that post, we have returned to having a different nurse every single 12 hours.

I just want to bring him closer to home. After that, I just want to bring my baby home and have all professional busybodies leave us alone. I fantasize about sending Kinley off to school and then climbing into my bed with Crew and Tanner to watch Curious George. Really, that's what I think about in the shower these days. Crew, Tanner, The Man in the Yellow Hat, and me. Alas, I know that I am not destined to live a life of solitude with Crew. Once he's home, it's into the arms of the pediatrician, occupational therapists, physical therapists, etc. I have had the strangest conversations with occupational therapists recently. I have a few longwinded stories about their counterproductive philosophies on breastfeeding that will wait for another day.

Don't worry, I'm not always so morose. It's just been building up this week and I needed to vent. You know, like the volcano that I can be sometimes. I promise I'll be less gloomy in a few days.

Saturday, January 24, 2009

More Pix



Thumb Sucking

These pix were on the CD that those silly night-shift nurses gave me. They are a few weeks old, the same photo session the night that they took the 007 pictures. This is my little thumb sucker!

Crew Post-Op

This is my poor little peanut immediately after surgery. He may look terrible, but believe me when I say that he looks a whole lot better than he did after the first surgery. Sleepy and a little swollen one day later.

Riding the Vent

Crew is still on the ventilator. We all expected him to come off more than 24 hours ago, but he refuses to breathe on his own even now. In fact, he was breathing better yesterday than he is today. His eyes remain at a higher risk for ROP while he is on the ventilator. Breathe, boy, breathe! He hasn't had any sedation since yesterday, but he's still sleeeeeeeeping very deeply.

Friday, January 23, 2009

MRI Results

Because Crew was already on a ventilator and sedated because of the surgery, they chose to get the brain MRI done today. They called this afternoon with the promising results. It looked "beautiful"! Yay! They were concerned about his large ventricles, as shown in the ultrasound, particularly the right one. There is evidence of a past brain bleed, previously undetected because of its position. While we don't know if it was stage 1, 2, or 3, we do know that it never reached stage 4, leaking into the surrounding brain tissue, and the current nature of it leads them to believe that this should have no longterm effect on Crew's development. I didn't understand all of the explanation, but I heard "beautiful" and "should have no longterm effects whatsoever" very clearly!

Thursday, January 22, 2009

Surgery Hurdled!

We just returned home after a long day at the hospital. There were a few emergency surgeries that bumped our hungry little guy to a little later in the day, but the deed is done. (Hey, I'm just glad I wasn't the emergency surgery case this time!) He is all put back together and we are thrilled! Dr. D. said several times that it was "very smooth, very smooth". He looks great; we hope to have him off the ventilator soon, eating, and back down closer to home in a few weeks. Crew determines the pace, and we've been whispering hints to his subconscious!

Wednesday, January 21, 2009

Surgery Tomorrow!

Crew is scheduled for surgery tomorrow at 11 in the morning!

Monday, January 19, 2009

The First Bottle

Today we decided to give Crew his first crack at a bottle. For best results, the preemie should be wide awake. I present to you... Crew: After many many many exhaustive attempts to wake him up...
Several hours later, 20 minutes before I had to get in the car to go home. Finally!!
Thinking about it...
Only Grandparents and die-hard fans of Crew are obligated to watch this video of Crew taking his first bottle :) videoAfter having successfully eaten 5 mls of milk, he's getting the very first burp pat of his life. It was a momentous occasion!
My handsome guy. Or girl? The occupational therapist tried to convince me that this hat is "neutral" because it has pink AND blue. Er? Yeah, and nice lady bugs. That's ok; Crew can be in touch with his feminine side this week. Tanner is.
Surgery is still scheduled for later this week. The sooner the better, I say. We're already so weary of this schedule. I'm not going to the hospital tomorrow; I'm going to suffer withdrawals.

Sunday, January 18, 2009

Children's Hospital, Round Two

Time drags when you have to commute to see your baby. I was sitting by his bed this afternoon, having a good snuggle, and I thought to myself "ok, so we've been here for a week and a half so far. Right? Roughly. Almost two weeks? Right? I think that's right. CRAP!! Oh my goodness! We've been here for almost 5 days! Sigh..."

It hasn't been so bad this time (first day total melt-down notwithstanding). I think it's a much different experience being on the nurse practitioner "green" team instead instead of the "purple" resident team. Plus, I have had a lot more consistency with the nurses this time. I have had one nurse three days in a row and one nurse the other two days. It makes a gigantic difference when you can't be there all the time.

The other difference? Well... I received confirmation from a secret source that I am on the high-maintenance mom list. I'm not exactly sure how I feel about that. But, when it comes down to it, I suppose that if it gets me the information that I need and the best care possible for Crew, I'll take the bullet, social hit notwithstanding. I'm very lovable once you get to know me. I've only yelled and pounded my fist once... and frankly, they totally deserved it that first day.

I still find myself having odd conversations on occasion, and their philosophies and approaches are sometimes in sharp contrast to what I am familiar and comfortable with. Their approach on breastfeeding, for example, is quite different than the one at our local hospital. Based on the differences in philosophy, it's not surprising to me that their success rates are so different. Our local hospital has a very high breastfeeding success rate. The Children's Hospital, by their own statistics, has very very low success. If I was dead set on being a successful breastfeeder, I'd be in a more difficult spot right now. Fortunately, I'm kind of wishy washy on the whole breastfeeding thing anyway, and I know my milk is probably on its way out.

That being said, we've been "practicing" breastfeeding a lot over the last few weeks. Crew does super duper well at it (when he's awake) and he'll be trying out a bottle tomorrow. When he's in the mood, he's a little boobie barracuda (sorry, is that crass?). My milk production is really struggling with the stress of the last couple of weeks. I'm working on building it back up, and fortunately I have a pretty good freezer stash should things go completely south, which I expect to happen eventually. I'm not willing to take medications or herbs, pump every 45 minutes, or otherwise do what is necessary to build and maintain my weak supply. Please, no advice on this issue. Seriously.

Being at the Children's Hospital is still exhausting. Our entire family was in bed, lights out, last night at 8. And I'm still so tired today. This arrangement is also a lot harder on the kids because trips to the hospital are so much more time intensive. Kinley and Tanner are already starting to fray and Kinley is being far less supportive when I go to the hospital "again???"

He hasn't gained any weight at all since he went up on Tuesday. In fact, he's lost a few grams. I'm really glad that I was able to convince the surgeon to do the surgery before we hit 2000 grams because I just don't know how long it will take to get there when he has so little bowel to work with. We have had to fight for every gram along the way and he is plateauing again. He is slated for surgery this week; no date or time has been set quite yet. Since he'll already be on a ventilator and sedated, they plan to do his MRI as well.

Overall, it hasn't been as miserable this time around. What does that mean exactly? It means that I'm comfortable enough with his care that I don't have to take prescription medication to sleep at night. If it means that I have to be on a naughty list of overly involved moms for that to happen, so be it.

My Prince

Thursday, January 15, 2009

The Silver Lining

Well.... since he didn't have surgery today, they decided to do a follow-up brain ultrasound on my baby to check out his progress. I am thrilled beyond measure and weepy with gratitude to report:

"All findings within normal parameters".

My Big Fat NICU Baby

Surgery is Off Again

All other screens were negative, but the culture on the picc line came back positive this morning before surgery. Surgery is cancelled, antibiotics continued.

His First Hunger Pains

They discontinued Crew's feeding at midnight. Three and a half hours later and he is experiencing his first hunger pains of life and he is not happy. Ok, so his first hunger pains were actually yesterday during a window when we were hoping we could get him into surgery in the late afternoon or evening.

Today is going to be a long day for the little guy. The sad and frustrating thing is that he is going to starve until he gets to surgery. He's an "add-on" with no set time for surgery, so he could be rolled in at 8 in the morning or 8 at night. Ugh! If it goes on too long, they will sedate him.

He's never been hungry before. And he hasn't had a poopy diaper in quite some time either, for that matter. His unusually agreeable and mellow disposition may undergo some overhaul in the coming weeks...

Wednesday, January 14, 2009

Not Off To a Great Start

I have the longest, most convoluted, most insane story to share. I don't even know where to begin, so I think I'm going to leave the story untold for now. Suffice it to say that today has been an extremely long day.

Nasty miscommunication in both hospitals (our local hospital doesn't stand perfect and blameless today). Good news is no infection and they are going to operate tomorrow. For most of the day, however, the company line was "Well, his stoma actually doesn't look very bad at all any more. Hmmm... guess he doesn't need surgery after all, so we'll just keep him here until February when he's bigger and and tougher, when we planned on doing it originally. This is the very best thing that could have happened!"

Tears. Lots of tears. Maybe a few cuss words.

We waited at Crew's bedside for five hours to talk to the surgeon. There was much weeping and wailing and gnashing of teeth when he arrived to deliver a repeat of the company line. Justin intervened before the surgeon and I actually got to physical blows (mostly kidding). After considering all factors, risks, and benefits, the surgery will move forward tomorrow.

Tuesday, January 13, 2009

Surgery is Off

When Crew arrived at the children's hospital this morning, the skin around his picc line looked a little irritated and the white blood cell count on his labs looked low, indicating the possible beginnings of an infection. They thought the redness was probably tape irritation. Throughout the day the redness has spread, a small lump has developed, and his arm is swollen. There is almost no question that he has an infection.

If infection is even suspected, the surgery team will not operate.

He has been started on antibiotics and blood cultures will be finalized in 3 days. If they are negative (meaning that it is only a peripheral infection), they will talk to the surgery team again. If they come back positive, they will repeat the cultures and it means we are looking at 7-10 days from the first negative culture until they will consider surgery again.

They have had to remove the picc line and will be feeding him through an IV. They have to reduce the nutritional content because of that, so he will very likely lose weight. Good thing he put on that 7 ounces over the weekend because he's going to need it.

We're trapped at Primary's. Silver lining... silver lining... hmmm... thinking, thinking, thinking...

More Pix of Crew

I take too many pictures of Crew. It's because I just can't capture what I see every day. Every once in a while I come kind of close. He kills everyone with those big, dark, wise eyes.
My friend Christi came to town to visit Crew and our little world.

Nana and Papa Came To Visit

Nana and Papa B. came to visit this weekend. They haven't ever been able to hold little Crewton before.

Crew Has Left The Building

Crew was transported early this morning to the children's hospital. He had an uneventful ride in the ambulance with staff who know him well and he arrived safely. He is happily sleeping and we are awaiting an update on the surgery schedule for tomorrow.

I'll be glad to have this surgery behind us and I'm excited that he's getting put back together. We're praying all goes smoothly tomorrow. This will really improve his recovery! We had a wonderful cuddling visit late last night. It will be a few days until he is stable enough to hold again.

Big Headed Boy

Would you believe that my baby's head circumference grew by 3/4 of a centimeter in 24 hours? What? That doesn't sound like a lot? That's a week's worth of head growth for him.

Don't tell me that miracles don't happen because I'm not buyin' what you are sellin'!

Mother Claims

While talking into his dictaphone, doing rounds on Crew...

Dr. M: Blah blah blah, blood pressure, blah blah, heart functions, blah blah, weight, blah blah...

(Pausing the recorder and calling for a nurse) Dr. M: What's with this 170 gram weight gain? Has he been reweighed? Did someone check the scale settings? This is impossible!

The nurse scurries to show him verification of several reweighings, documentation of using the same scale every night, assurance that he wasn't puffy with extra fluid.

Dr. M: This doesn't make any sense!

(Timidly raising hand to interrupt) Megan: Uh, Dr. M? Um... we've been praying really hard. And it's not a faulty scale. He looked fat when I saw him before the weigh-in and he no longer fit into his clothes. We had to bump him up to the next size.

(Turning recorder back on) Dr. M: Mother claims this is the result of prayer.

(Somewhat aghast, wondering if I might be being mocked--which turned out not to be the case) Megan: Ack! Did you really have to put that in the dictaphone??

Dr. M: Why not? It's as good an answer as anything I can come up with! I sure don't have anything better to explain it!

Monday, January 12, 2009

Bond. Crew Bond.

Seriously? Have I told you lately how much I love the staff at UVRMC? The nurses were busy last night making mischief while the rest of us were sleeping.

In honor of Crew's fantastic 7 ounce weight gain, they dressed him up as 007 and took some hilarious pictures! Get it? 007? 7 ounces? I laughed so hard!! Isn't he so handsome in his swank Build-a-Bear tux?


*I've been assured that no NICU babies were harmed or removed from their isolettes in the creation of this display, LOL!

Kids Visiting Crew

Tonight was the last chance for Kinley and Tanner to be able to visit Crew before he leaves. Tanner only wanted to sing the ABC song, so that's what we have recorded. Even when Kinley sang other songs, he continued on with endless loops of ABC's. Having the children come to see Crew is such a good thing for them, but I'll tell you that I'm always in a sweat by the time our 10-minute visits come to an end. When he comes back I'm going to try to take Kinley a few more times by herself without Tanner Tornado in tow.
video

Sunday, January 11, 2009

I Believe In Miracles

Like I said, I believe in miracles.

So who's been praying that my baby would get fat?? I'm very appreciative to you because my little miracle put on SEVEN OUNCES (170 grams) in one day. I thought he looked awfully fat when I saw him in the morning before his weigh-in! It does not look like water weight or puffy bloat to anyone's eye and he has maintained it through another day. He is now 3 pounds and 10 and a half ounces!

We have spent weeks scrapping for every gram, trying every possible avenue to beef him up. Even putting him on artificial nutrition wasn't the home run ticket. There is simply no logical explanation for this astonishing weight gain in 24 hours' time. Perhaps if he had started gaining so well as soon as we put in the picc line, we would have been thankful for the picc line and for the wisdom of the neo who made that decision. Because we have continued to struggle so mightily even with the picc line, we can have no doubt of the Lord's loving and merciful intervention now.

We have been fasting and praying for a miracle for Crew and I believe we are on our way. Do you have any idea how important fat on the body is for brain development in babies??

We have had a wonderful weekend. Justin's parents came into town and Justin joined his father and his brothers in giving Crew a beautiful priesthood blessing this afternoon. We have such hope for him and peace about his future. I hope it's not inappropriate to mention that Dex and a few others joined us for the occasion.

Crew's surgery is still scheduled for this week. Once he returns from Primary's, he won't have many more milestones to achieve before he can come home to us. I now believe it could be possible to bring him home as our Valentine's Day surprise instead of our Saint Patrick's Day present or in our Easter basket!

As always, we are so grateful for your prayers on Crew's behalf. I can tell you from the front lines that your prayers and faith are making a critical difference in his life and in ours. Our family is going to make it through this. We're going to be ok.

Happy Birthday!


Aunt Mardie Came To Visit

Crew loves visitors. He sometimes hams it up for them, like he did with his Aunt Mardie over the weekend. He was being kind of flirty, opening his big eyes, showing off his finger-sucking skills.

Saturday, January 10, 2009

In Other Crew News

I've been so preoccupied with the big brain stuff, that I haven't updated on other Crew info. Last night he hit 1486 grams (I think that's the exact number, but I called at 4 in the morning, so don't hold me to the exact gram), which is 3 pounds and 4 and a half ounces! He is growing growing growing!

He saw the pediatric cardiologist and received a mostly clean bill of health. He has pulmonary stenosis, but it is presenting as a very mild case, and he has no evidence of aortic stenosis.

He has been uncharacteristically cranky this week. During one of his fussy spells I discovered when he was squawking that he has thrush (he just started breastfeeding, but that's for another post), so I'm sure it's made him uncomfortable. He should hopefully be feeling better from that by now because we started him on Nystatin on Wednesday.

I already mentioned that his stoma is having some problems. It is retracting, which is affecting how well the seal is on his ostomy bag. It has caused some skin breakdown that looks quite painful to my eye. Add to that the burning of additional leakage and owie owie!! Between the thrush and this, I'm not surprised that he is being fussy. He's on Tylenol and that seems to help some. I'll be glad for him to have his stoma taken down and taken care of.

He is back on oxygen, as you may have noticed from the pictures. His respiratory rate has been abnormally high this week, as has his heart rate. Since returning to the cannula, his breathing has slowed down some, but not all the way. His heart rate seems about the same. You can't ever be sure of what causes these things, but pain is a common factor. Just think about what you do when you are in pain.

So there you have it. The good, bad, and the unknown.

Friday, January 9, 2009

Nekkid Babies Are So Cute


Crew had an exploratory enema today (icky) in preparation for his surgery next week. The monitor in the upper left shows his bowels, if you're interested :) Do you see what a big moose my 3-pound baby is now??? And do you love my stylish lead apron?

A Little More Hope For Crew

Neonatologist #1 met with us the other day and told us of the finding on the scan. He said it was quite concerning, potentially very problematic, but ultimately means nothing yet as far as Crew's longterm potential.

Neonatologist #2 said that this was basically a worst case scenario. She said there was no hope, he would be devastatingly damaged, both physically and mentally, and that she didn't want me living in a fantasy land, thinking that this wasn't going to be very very bad.

I was so confused about the mixed messages that I requested a visit with Neonatologist #3 this morning, whom I greatly respect. He was very very firmly in agreement with Neo #1. He said we don't know enough about the brain to know how this is going to turn out. He has seen worse cases that turn out well and better cases that turn out very bad. I pleaded with him for the truth because I don't want to be molly coddled and I don't want someone to fill me with fluffy false hopes just so that my spirits aren't crushed. He firmly stood (physically and figuratively) beside Neo #1. The message is "we just don't know, but there absolutely is hope."

That's enough for me today.

I think it's all worked out for the best, even with the mixed messages. Meeting with Neo #1 was horrible and very sobering. Talking to Neo #2 was devastating. Meeting with Neo #3 and #1 and hearing the original message repeated didn't sound so bad the second time after spending a day trying to absorb the message from #2!

I simply cannot look into those big brown eyes and see what I see, and believe that there is no hope. I believe in miracles and this little guy needs one.

Thursday, January 8, 2009

Hope For Crew

I held my baby tonight. I snuggled him while he wrestled with his binky and then when he woke up and looked right into my eyes. He exudes peace and hope. I believe in miracles. I've experienced them before and I'm not giving up hope yet.

I've been on my own personal roller coaster for the last 24 hours. I go from "this can't possibly be true, they must be wrong" to "we can handle whatever comes, no matter how bad it is" to "we can't possibly survive this and if I get one more piece of bad news, I will completely break." And then the cycle starts over again. There aren't a lot of tissues left in the house today.

All I know is that the Lord is mindful of us and that has to be enough for now. I don't know what our future holds and the unknown is pretty overwhelming. For now we'll try to ignore the scans (ha ha) and focus on his behaviors and milestones because it's all that we can do. I love him so much. So so so so so so much.

I know there are those of you who pray for Crew. Please please don't stop. They have made such a difference in his life already and he can use all of the faith and hope that he can get right now.

Back To The Children's Hospital

Crew's stoma is starting to have some real problems. It's retracting at the surrounding scar tissue. The pediatric surgeon who did his original surgery evaluated him this morning and decided to put him back together next week, provided the Children's Hospital will keep the schedule. Right now the plan is for him to transport first thing next Tuesday morning and have the surgery Wednesday. Then there will be a few weeks of recovery and then hopefully he will come back down here. There is a tiny chance that he might just make a small modification to the stoma and then wait longer to put him completely back together. I would hate that scenario and am praying that they will be able to put him all the way back together without any complications.

Small Enough

Brutal Honesty

I spoke at length this morning with another of his neonatologists and she was even less hopeful than the one I spoke to yesterday. Her comment was "I never say never because miracles can happen, but based upon what I'm seeing on the scans and the signs he is already exhibiting (severe stiffness in his legs), I would anticipate that he will be very severely compromised physically and mentally. But there is always that sliver of hope."

Wednesday, January 7, 2009

What The Doctor Said

I woke up this morning on the wrong side of the bed. I was agitated and didn't want to go to the hospital. When I got there, I stayed for less than two hours and then left. I was just filled with grumpiness and I couldn't put my finger on the official cause so I chalked it up to general burn out... much like the morning Crew was transferred. A mother's intuition often knows when something is coming.

This afternoon the hospital called and let me know that one of the neonatologists wanted to sit down with Justin and me together to go over the results of Crew's most recent brain ultrasound. Yeah, I knew that couldn't be good.

Cerebral Atrophy. That's what the ultrasound showed. It doesn't sound very good, does it? Basically, his brain is not developing as it should; the development of the brain folds are very delayed and the rate of development appears to be slowing down as well, when compared to previous ultrasounds. His 36-week old brain has the characteristics of a 29 week fetus.

What does it mean? Who knows.

Might he be "normal"? Yes

Might he be profoundly retarded or otherwise catastrophically deficient? Yes

Might he be something in between, with mild physical or mental disabilities? Yes

When will we have answers about these things? In time. Lots and lots of time.

Might I sleep tonight? Not a chance.

Gaining Weight!

Crew has finally hit 3 pounds!! Tonight he weighed in at 1420 grams, which is 3 pounds and 2 ounces. Oink, oink!!

Monday, January 5, 2009

You Would Be Addicted Too

The lighting is really bad because I'm still learning this fun new way to capture my little prince. Pay no attention to his idiot mother cooing in the background.
video

Sunday, January 4, 2009

Crew's Evening

Our friend Bethany came down to meet Crew this weekend and we had a blast at the NICU. That sounds so weird. Anyway, she agreed with his previous visitors that the blog just doesn't come close to capturing his cuteness or tinyness. She was there for the exciting moment of his nightly weigh-in (1301 grams or 2 pounds and 14 ounces!) as well as the less exciting changing of a leaky stoma bag. I have finally found something that I like better at the children's hospital than at our local one. The staff down here can't keep a bag on his belly for anything!!

I couldn't resist taking a picture of his Royal Nakedness while he was on the scale. Bethany reminded me that I have video capabilities on my camera to at least capture his wiggles! DUH!! Without further ado, I present to you "Crew Saying Goodnight". In this debut movie, he is getting sleepy and starting to settle in for the night. The climax of the story is his sweet little hand wave.
video

Baby Barracuda and His Bitty Bum

My baby barracuda loves his binky. I can't believe he is using the big one now!
My sleeping little prince.
The first picture is the diaper he had when he was first born. He was wearing one of them last night, but he usually wears the second one. His backside is actually almost starting to look vaguely like a bum instead of a creepily wrinkly sac with a hole in it.