Crew in Clothes

It is absolutely delightful to have Crew so close to home. I'm so happy and I can't stop smiling. Unfortunately, I can't sleep at night, just thinking about how accessible my baby is. I toss and turn until morning, when I can race to his side. I kangarooed him for 2 and a half hours yesterday. And he put on 30 grams, yay! He has now broken the 1000 gram mark and is 2 pounds, 1 ounce! Hallelujah!

It feels great for us to both be back at our local hospital. I feel like I'm in some Cheers spin-off. We've returned to the "place where everybody knows your name! And they're always glad you came!" He's in good hands and he's doing really well. I spent the morning with him. We cuddled and he pooped on me. His ostomy bag leaked all over the both of us, which didn't bother me much because it gave me an excuse to help give him a bath and then dress him in his new duds.

Here is the pampered prince relaxing after a yummy bath, an ostomy bag change, and a zit lancing (probably a staph infection, great. We're waiting for cultures to return). Mommy is so excited to dress him in clothes for the first time!
Teeny tiny little clothes for his teeny tiny little body.
My sister Lyndsey and a family friend, Debbie, who creates micro-preemie clothes, provided Crew with his very own shamefully cute hospital wardrobe. Thank you so much to you both! For the few hours that I did sleep last night, I was dreaming about dressing him in this outfit. It was every bit as satisfying as I had fantasized, LOL! And, Debbie, the nurses were freaking out about the cuteness and functionality of his clothes. Good work, lady!

"Hello? Hello? Are we almost done here, ladies? I'd like to finish my snooze, if you don't mind."
My burrito baby, snuggled up just the way he likes it!

Sweet Bliss

Ahhh.... I just came home from the hospital. From holding my baby. In my pajamas. Just because I could. And... I held him this morning too. Also because I could. Even though it snowed. And I even had time for a picnic dinner with the big kids while watching Willy Wonka and the Chocolate Factory. What a great day. I'm ready to c-r-a-s-h. After I pump. And maybe have a midnight snack.

Crew is doing great. And he is wearing clothes for the first time. He is so cute! And he just loves playing the part of a baby kangaroo!

Itty Bitty

So, the folks at our local hospital were a little surprised that Crew weighs the same amount that he did a month ago when they shipped him out. At least now it is real weight instead of swelling and bloat.

So, the task at hand is to beef this kid up. He's "supposed" to be approximately 1600 grams right now (3.53 pounds), but he's only 970 grams (2.14). I kept hearing his doctor hollering into the phone, "He's way off the charts! He's so tiny! He's just the itty bittiest little guy!" So much for his future as an offensive lineman. Come on, Crew! Grow! As ridiculously cute as you are as a tiny mewling kitten, Mama wants you big, fat and home! Hopefully more frequent kangaroo care will help with that! It's the theory anyway!

What I Learned At The Children's Hospital

I've been thinking a lot over the last several days of the lessons we've learned through our experience at the children's hospital this last month.

#1 It can always be worse. By spending time with the other NICU parents, I was able to gain a much better perspective on our trials with Crew. There is always someone in a more difficult situation medically, financially, and emotionally.

I learned through talking to the moms and dads that Crew was one of the very lucky ones, one of the very healthy ones. And as much as I hated the commute, it was only an hour. There are plenty of parents who have had their children transported from out of state, several hundred miles away. And last, but not least, not everyone has our phenomenal network of neighborly or family support.

#2 You have to be tough as nails to advocate effectively for your children. Since we went up almost a month ago, I have been slowly becoming more and more vocal about his care. I never wanted to become "that mom" and I have tried to resist the nutcase within, but I've learned that, as in most situations in life, it's the squeaky wheels that get the grease.

It seems to me that this was an important lesson for me to learn: confidence in firm, diplomatic advocacy. It wasn't until I made a stand over the weekend that things finally started to come together. Things that I had stewed privately about, fretted quietly about, and blogged publicly about were finally resolved and the lines of communication were blasted wide open at last. Even if it's uncomfortable, you have to be direct and firm or you'll get nowhere. There are no other options. And... it gets more comfortable with practice. I found my "chi" and my sanity just in time to be discharged. Oh well, lesson learned anyway.

I'm not the same mom that I was a month ago. I'm more educated about what goes on in the NICU, I'm more comfortable with caring physically for my wee little micro-preemie, and I'm a better and stronger advocate for his needs.

I'm excited to be back at our local hospital. It felt like coming home when I walked through the doors tonight for a bedtime peek. After almost a month away, the desk staff and nurses actually recognized me on sight and welcomed me back like a long lost friend. Nurses were fluttering around Crew, oohing and ahhing over how good he looks and how much they have missed him. He was tucked in snug and swaddled up tight, just the way he prefers. It feels really good to be back "home". And I love that they always have free juice in the pumping lounge :)

Christmas Again?

Who says that "Christmas comes but once a year?"

They are really short on beds at the children's hospital right now so they are transporting a few of the more stable babies back to their hospitals of origin. GUESS WHO IS BACK IN TOWN????

Aaaaaaack!! I'm positively giddy! I cannot believe that he is only 8 minutes from my house at this very moment! Insurance approved the transport because it is cheaper for them to transport him back to grow and feed and wait for surgery at our local hospital than to keep him at the much more expensive medical center for another 45+ days until they think he might be ready for his surgery. I'm absolutely elated.

These are bye-bye children's hospital pictures. One final snuggle this afternoon before they packed him up and shipped him "home". What a wonderful surprise.

Gift From God

Hanging on the wall of the NICU in our local hospital is a painting called "Gift from God" by Derek Hegsted. It depicts the Savior holding a very tiny baby in his hands, looking at the baby with such love, such compassion for this child and, in my opinion, for the parents of this child. I spent many long moments lingering at this painting during my stay at the hospital, many times in the middle of the night. Every time I looked at it, I really felt that the Savior truly understood the pain I felt over losing Dex. Justin spent time staring at this painting as well, though we never did it together and never discussed it with one another. It was a source of personal, private peace and strength to both of us.

Apparently Justin's family noticed our fascination with this painting and realized the importance of its message to us during this unexpected and difficult journey. His family combined their resources and their love to provide us with our own painting to hang in our home to remind us of the Savior's love for us and for our children.

They presented it to us on Thanksgiving, but the framing was finished this week. Danny and Mardie delivered it to us yesterday, just as we were in our frantic preparations to get up to the hospital. It couldn't have come at a better time. While I have always previously considered it a representation of Dex, yesterday I was reminded that the Lord is mindful of Crew's struggles and he is every bit as much in the Lord's care as Dex is. And while I'm at it, I know that he is watching over Kinley and Tanner as well, helping them to be strong and resilient while we continue to fight alongside Crew.

And I certainly can't deny that He has been supporting the parents of these great kids. We have felt His love, His peace, His generosity, His compassion, His strength, and His understanding. We have been greatly blessed in this adversity. We'll survive this and we'll be stronger, happier, and more grateful in the end. I really believe that. I love my family.

A New Monday

I find that Crew remains my anti-anxiety medication of choice. Being near him calms me. I was supposed to go see him again this morning, but Tanner is still sick.

It's hard having Crew be so far away. If my big kids get sick, I can't see him. If it snows, I can't see him. I wasn't able to see him last Friday or Saturday. I can't see him today because Tanner is sick and I won't be able to go up tomorrow because of the storm rolling in tonight. I was so happy, so deliriously happy to see him and hold him yesterday, but 2 hours in a 5-day period is simply not enough, especially when you feel like you have to be there to protect him and be on top of things.

All that complaining aside, I'm actually feeling much more sane and happy today than I did all last week. I've been working on "finding my chi" as my sister Heather puts it. I started circling the drain emotionally, starting last Monday (like that hasn't been obvious from my posts??) But this weekend I decided that none of us are going to survive the next two months if I continued down that path, so I've been trying to climb back up to my happy place, or at least my "stable place", LOL! I may have gently exploded all over the hospital staff yesterday (which apparently needs to be done once in a while) and I think we're on the same page again. At least for now.

Of course, this is much easier when Crew has a few really good days in a row, like he has just happened to have had. He put on 40 grams yesterday, which is starting to make up for recently lost ground. He had no Brady/desat episodes at all yesterday or last night, and he's on 21% oxygen (which is about the same as room air) and 1.5 liters on the cannula. That is really really good and and fantastically, surprisingly stable.

Of interest, he threw a major fit last night at the nurse. It seems that all he wanted was for her to visit with him, sit him up and interact with him a little. I've noticed a pattern; he has started to do this on days when I visit and hold him. I'll confess that I'm sneakily satisfied about this development... Oh, little Crewton. Mama loves you and misses you so much. Soon we'll be together every day and I can't wait!

So today, instead of moping and spinning in aimless circles, I'm going to finish the laundry that Justin started this weekend and spend some quality time with the equally lovable kids that are within kissing distance.

Tear Soup

This book, Tear Soup, was given to me at the hospital after Dex died. If anyone you know ever suffers a significant loss (and it doesn't have to be death; everyone suffers major losses of some sort at one time or another, be it death, illness, divorce, infertility, etc), I found this book to be very helpful as the person going through the loss. I also think it's really helpful for loved ones connected to the situation. Very informative and thought provoking. And nice illustrations to boot.

Held My Baby

I held my baby today. All is well.

And guess what? All the residents swap out for a brand new batch tomorrow. HA HA HA HA HA HA HA HA! I'm taking a note from Elder Wirthlin's talk. I'm laughing in the face of insanity. HA HA HA HA HA HA HA!

But seriously, I held that little baby and he sprawled lazily across my chest. Peace returned to my chaotic soul. He was so sweet, so strong. So tiny. He's been a very good boy today. Speaking of tiny, I was visiting for a few minutes with a fellow NICU mom, looking at her adorable little girl. She looked massive, hardy, almost fat. I asked her how much she weighs now. 3 and a half pounds. Boy, is my perspective messed up!

GET YOUR INFORMATION RIGHT

I'm relieved. And angry. And happy. And frustrated.

I just talked to the night nurse (yet another new one). I mentioned Crew's really bad night with 8 episodes last night, so similar to the night before that, in the hope that he would do better tonight. She was completely confused because she has record of only 2 episodes on that shift and the other night nurses in the room while I was on the phone, who had been there last night, confirmed that he was a good boy all night long. What???

The daytime nurse that I talked to today, who had me all concerned about his terrible night? She was looking at the wrong day. She was telling me data from the night before. I've been a distressed mess all day today based on incorrect information??? I've had staff put me on the Neurotic NICU Mom Who Needs Special Handling List because of it? No wonder the resident who called today wasn't very concerned about his episodes today. Argh!!!

I just called the on-call resident (the one who called earlier) to confirm that Crew actually had a good night last night and she did, and of course tried to put it on me that I must have misunderstood, and that she can understand how confusing it must have been. I was even gracious about the mix-up, being understanding of how those things could happen, and that I just needed to know what the right information was so was calling her because I figured she'd have the master records and personally spent time reviewing what he did last night, and she again threw it back on me that the nurse couldn't possibly have messed up, and was very forceful that I obviously misunderstood, "which is so easy to do sometimes". Um... thanks for the patronization, but I absolutely did not misunderstand. I was very VERY clear and asked very specific questions about what position he was in and what times he had his episodes. Seriously? On top of everything else we endure as parents with children in the NICU, do you have to be insulting and condescending as well?

I know they are starting to hate me up there. That's totally ok. The feeling is mutual. I don't know how much longer I can keep myself composed with them. I can't stand being at their mercy. Time to go settle down so that I can get some sleep tonight.

What A Wild Ride

I'm getting motion sickness on this roller coaster. He's had a great day, only two episodes all day and they were both in the last two hours. In the end, he did have too much stool output yesterday, so they are decreasing his milk fortification from 24 to 22 calories per ounce. Hopefully he'll digest this better. It's better for him to have fewer calories and absorb it and grow from it than to have higher calories and absorb none of it.

Today's resident and nurse don't seem very concerned about his brady/desats. I expressed my frustration that some days everyone is alarmed and other days no one seems concerned. Am I supposed to be alarmed? Am I supposed to be composed and patient and unworried? If they are all over the map about it, how am I supposed to keep up??? Yet another resident just called me back after I grated all over the nurse, to tell me that I'm not supposed to be worried right now about these episodes because all the labs are coming back normal (and because nothing else they are trying is really fixing it). No spinal tap is in the immediate future and they are (for this moment, at least) chalking his behavior up to being very small and very young. I wonder what the radically different, totally insane story will be tomorrow.

And I hate the snow. I'm afraid to drive in the snow.

Sorry, I'm having an I'm-so-tired, end-of-my-rope, want-to-hold-my-baby, want-some-definitive-answers, need-some-consistency, Crew-is-too-far-away, I-hate-the-snow, feel-to-scream kind of day.

Sigh...

After a great day yesterday, Crew had 8 spells last night. And... he's got yet another new nurse today that knows nothing about him.

Knocking on Wood

Since they put Crew on his belly at 7 this morning, he hasn't had any extra poop output and has had no more brady/desat spells!!!

More Encouraged

I just talked to his resident and in that conversation I found out that his spells last night were all clustered in one 2 hour block. Once they repositioned his body, he didn't have any more the entire night. That's important information, and more encouraging. He had one episode this morning at 7am and they put him on his belly. He hasn't had a single one since then. Also encouraging.

I also found out that even through these episodes where his saturation tanks and his heart rate plummets, he is continuing to breathe. He wasn't doing that a few days ago, so this is an improvement because it's no longer full apnea, just bradycardia and desats (which are alarming enough). I wish he didn't have so many rotating nurses who don't know anything about him. I really believe it compromises his care. He has two primary night nurses, who don't work all the time, and one of them was the one who came up with the feeding correlation. Who knows what tests and other interventions they would have subjected him to before they thought of that without her help? His one primary daytime nurse doesn't work many days either, so there just isn't very much consistency for him at this hospital and it annoys me.

His poop output is too high, probably due to the high calorie fortifier they just started adding. He isn't putting on any weight, nor probably absorbing enough nutrients. They are going to let things ride through the weekend to see how it shakes out. It's not alarming at this point, but will be if it continues very long or gets any worse.

I found out this morning that his resident (you know, his primary care physician) didn't have it in her file that Crew was born at 28 weeks but measured 26 weeks in size and development. I know the nurses have that information and I have seen his age listed differently depending on what papers I am reviewing. This morning when the resident kept saying "he's 32 weeks", I finally stopped her and said, "now you know that he is really only 30 weeks because he measured only 26 weeks at birth, right, not 28?" Silence. She said that that information actually changes a few things, including her expectations of what he could/should be accomplishing right now. Ugh. Kind of an important detail, don't you think? I don't really blame her for not having the information, but I'm a little horrified that she didn't have it, nonetheless. How does the information not get to everyone involved with his care? It got passed to the nurses; how did it not get passed to the doctors at the same time??? I think that's pretty critical information.

Apnea WHY?

Well, we thought we had stumbled on the culprit causing the bradycardia and desats. One of the nurses pointed out that the spells started when switched his feeds from continuous to condensed. When they returned to continuous feeds, there was a noticable decrease. I thought (and really really hoped) that we had found the panacea. There were only 3 during the day shift yesterday and three the night before. But he had 7 last night that had to be intervened on. Sigh... come on, little guy! Tell us what's going on!

Justin and I were able to go to the hospital together yesterday. It was nice for Crew to see his Daddy because with Daddy's schedule, that's a rare treat. I got to hold my little kangaroo. I noticed that he was exceptionally wide awake yesterday and spent some hours awake after I left. It's so hard to leave him when he's wiggly and looking around, especially if doesn't appear content or starts to fuss. At my request, they are going to be discussing decreasing that kid's caffeine level today. Not like it's fixing what they hoped it would fix anyway. He was on 3.5 mgs per day when he was doing well, then they discontinued it. When he started this apnea nonsense, they put him back on and raised it to 10 mgs per day. In my opinion, that's a few too many Diet Cokes for this baby.

Happy Birthday!

It's hard to believe that it has been a whole month since the twins were born. So much has happened since then. All that I can really say is what a wild journey, eh?

I finally got the obligatory "dollar bill" shot this morning to show how teeny tiny my Crewton (crouton) is. I wish I had gotten one when he was born. From now on I'll try to take a dollar shot every month. As always, the pics are poor quality because I didn't use a flash and I took these pics through the glass of his isolette. Not bad, considering. Can you believe he was actually half a pound smaller at birth? He's a giant now, LOL! It's kind of a strange place to be in your life when you think 2 pounds seems sturdy. He looks and feels so much bigger and stronger than he used to. Either he really is getting bigger and stronger, or I'm getting braver. Probably a little of both.

Speaking of brave, I sucked poop out of his ostomy bag today. And... I threw up a little in my mouth while doing it. Maybe it's because it's the same style of syringe that they use to put food in his feeding tube. Something connected really poorly with that mental image in my brain. Blech.

Here I am, the mama kangaroo with my little joey. The first time I held him, he cried for half an hour. The next time, when I held him kangaroo style, he cried for about 5 minutes. This time he cried only until I got him nestled and situated and he went immediately to sleep, snug as a wee little bug. It was a fantastic hour... well, except for that one apnea crash. I had to rub him all over to wake him up and remind him to breathe.
Precious baby. Thanks for the hat, Aunt Lyndsey!!
So, I finally decided that I was ready to attend my first NICU parent support luncheon. The speaker today was a music therapist, which I actually found very interesting, informative, and validating. I also liked meeting the other NICU parents. And hey, free lunch. Thank goodness no one said "I know exactly how you feel" because I would have bolted, potato bar or not. I'll probably go again next week. I also picked up a sweet little knitted hat for Crew to grow into and a Christmas baby quilt.

I signed up Crew to get his picture taken with Santa in the upcoming weeks. As the neurotic Grinch Mom, I refused consent to allow Mr. Claus to actually touch my baby, but it will make a sweet picture with him peering into the isolette, don't you think?

Apnea, Apnea...

Well, he has had 14 episodes in the last 24 hours where they have had to intervene with extra oxygen and physical stimulation. I was there for one of them and it was a little unnerving to see his oxygen saturation and his heart rate take such a quick nose dive. Tests came back negative for infection, but that doesn't mean there isn't one. In a few days they'll do a spinal tap (again) and they are now running a virus panel.

And sometimes preemies just do this because they are preemies. BUT, it's odd for him because he has never done this before and 14 in one 24 hour period all of a sudden is a LOT. So they are looking for other possible causes. Maybe reflux, but he has been tolerating his feeds so well until (possibly) now that they think that probably isn't it either. Crew has a tendency to not behave the way the text books say he is supposed to, so we're trying to be patient as this sorts itself out. He has started to have fewer episodes (9 yesterday, 3 last night and only 2 that I know of so far today), but everyone still thinks it's strange that he is having them at all. We are praying that they continue to decrease and finally disappear over the next couple of days. He has more blood now, they have increased his caffeine above what he even had before, and he is showing no clinical signs of other illness, including NEC.

So many changes in a short period of time that could be the culprit, so there are consequently many attempts to correct it plus the question of infection or virus or reflux, but mostly they are just shooting in the dark to try to fix it, blazing all guns at once.

Naughty Boy

Crew is still not responding adequately to the oxygen liter increase and caffeine reinstatement. He had a major apneic episode today immediately after the medieval torture eye exam, which really upset him. He just closed his eyes, retreated, and stopped breathing. Had to bag him with extra oxygen to bump him back. He's getting a transfusion all afternoon and evening. Right now they are putting all their eggs in that basket, banking on their hope that he'll stop this nonsense with better blood levels. In the morning they will retest his blood to see if his immature white blood cells have increased, suggesting a developing infection (if I understand that right). I think he misses me. I can't wait to get up there tomorrow.

PS, the eye exam was normal for now and follow ups are scheduled. I naively thought that his risk would dramatically diminish now that he's not on a ventilator. ROP freaks me out.

Targeting Apnea

At this point, they don't really think his episodes of apnea are related to reflux. That could change in the future, but for now they are looking for other reasons.

They have put him back on the caffeine and they have bumped him back up to 2 liters on the nasal cannula. The thought behind that is simply that they may have made one step too many, too fast for him to keep up with. So we have taken a step back to see if it will resolve.

They are also testing him for infection because sometimes that can affect respiration. Finally, they are giving him a transfusion because sometimes those levels can affect respiration.

It's a little odd that he has started to have these episodes when he didn't have them before. But I'm pulling for reason #1, hopefully that we just moved too fast on weaning the oxygen flow and taking him off the caffeine. If that's the case, he just needs to get a little bigger and stronger, which will come with time.

On a better note, his echocardiogram and his head ultrasound came back normal. Yay! Eye exam later this week.

Tanner Meets Crew

These are older pictures, taken two days before Crew was transferred. I am so glad that Tanner at least got to meet Crew once before he was wisked away to a place where he can't visit.

Tanner had been asking for several days when he could have his turn to go to the hospital like Kinley and Mommy. When we had everything in place (meaning immunization records) we brought him to the hospital. Only then did we realize what expectations had been spinning in Tanner's little mind.

Every time that he had been to the hospital before, he had come to visit me in my room and always during dinner time. When he showed up at the NICU and saw me standing upright without a dinner tray to raid, he went completely bonkers. He started screaming in the NICU "I'n so hungry at the hostible! I'n so hungry at the hostible!" He could not be refocused until DeAnna took him to get a snack. When he was done with his crackers, he was finally ready to see Crew.

He marched through the NICU doors and said, "I look for Baby Crew!" a million times. I guided him to the right spot and he was so excited. "I find Baby Crew! Look!! He is so small! I find Baby Crew!" He stood there for just under 30 seconds and then he was done. He was satisfied with his little peek, climbed down from the chair, and was ready to go home. It was quite a production to introduce these brothers, but it was worth it.



"I find Baby Crew!"

Reflux?

Well, they removed the pick line last night and bumped him up to full feedings. He is now getting 5.3 ccs per hour through his feeding tube. That's a little over 4 ounces per day. That seems like a ton for this little guy! Soon he'll be a pudgy little roly poly kid!

His breathing dipped a little in the night. They had to increase his oxygen and reposition him 4 times throughout the night when he stopped breathing. They discontinued his prescription for caffeine yesterday (which he was getting to help stimulate his breathing), so it's hard to know if he's being affected by that, or if he's got reflux. Reflux is super common in preemies (and common enough in full term babies!) and it tends to manifest itself in apnea like he exhibited last night. They'll be monitoring and evaluating this new development.

Crew has a big day today. On the docket should be blood tests and a head ultrasound to check for brain bleeding. He also has an echocardiogram scheduled for today to investigate a heart murmur that has just developed. I'm trying not to be concerned about the heart murmur because Kinley and I both have the innocent variety and it would stand to reason that he would share that genetic trait.

Christmas Came Early This Year

So a picture is worth a thousand words, right? Here are 4000 words for you.

Kind of a weird angle and it makes his head and face look a trifle odd, but I still think it's a cute picture. I just love his beautiful eyes.

Yesterday after we dropped my sister off at the airport, Justin took the kids into downtown and I spent the afternoon at the hospital. Since he is off his ventilator and has lost so many other tubes this week, I asked his nurse how close I was to being able to hold him. The nurse said I was very very close and asked me when was the last time I held him. "Um... what do you mean exactly?" "When did you hold him last? You know, in your arms?" "Oh, in my ARMS? Never." So they pulled that little peanut out of his greenhouse and let me have an hour of total bliss!!

This was the first time I was able to see him since they took him off the ventilator. He no longer has tubes going down into his lungs between his vocal chords, so for the first time, I was able to hear him cry! He sounds like a wee little mewling kitten! He cried for the first half hour of me holding him. I thought I'd be tiring him out too much, but the nurse assured me he was fine, his vitals were good, and that it might take him time to adjust to this new kind of adventure. Eventually he settled down and fell asleep in my arms. He still can't maintain his body temperature very well, so when he got too cold I had to put him back in his greenhouse (isolette).

Because we made the trek yesterday, we had planned on foregoing another weekend trip today. Alas, while I was getting ready for church, I called the hospital to check on him and the nurse that was there today said that she wondered why we didn't do kangaroo care (skin-to-skin bonding) with him yesterday when I held him and said that if I came up today we could totally do it on her shift. Did someone say Kangaroo Care? Yeah, I tried to continue getting ready for church, but I just couldn't focus and knew it wasn't going to get any better until I got my hands on that baby again. I finally threw on my shoes and raced up to the hospital.

The nurse stuck that naked little baby up against my chest and I was absolutely in heaven. He whined for a few minutes and then settled in for a little nap. He even let me rock the chair a little bit and rub his head a few times. It's really easy to overstimulate these little guys, but he was very tolerant today. In fact, he has been naughty with fully digesting his food for the last day, but holding him flushed absolutely all the residuals out of his belly at last. Cuddling with mommy really seemed to agree with him. And I know it agreed with me!

He is so tiny. Seeing him with all the bumper pads and things makes him look bigger than he is, even to me. I just get so used to staring at him in all of his paraphernalia. I was reminded of what a teeny little thing he is when I was holding him yesterday and today. He is s.m.a.l.l. Two pounds is just not very big. His head is smaller than my closed fist.

So this week he was pulled off the ventilator and moved to a nasal cannula and he lost his Art line. He also had his IV removed and tonight they plan to take out his pick line if he tolerates taking his medication through his food. That means that the only machines he'll be connected to are the monitors for his vital signs and his breathing apparatus!! Well, and his feeding tube too, I suppose. What amazing progress in just a week! I am so grateful and happy that he has had such a good week. We feel so blessed. We're keeping our fingers and our toes crossed that his progress will continue! Also, by tonight, he'll be on "full feeds", meaning that he is getting all of his nutrition from the breast milk; that's why they are able to remove the pick line. He won't need the intravenous artificial nutrition anymore if he keeps doing well with the milk.

When Thank You Isn't Enough

For my fifth birthday, my parents threw me a birthday party and invited some little friends over to celebrate my big day. At the end of the party, I was banished to my room for displaying ungrateful behavior during the opening of the presents. I absolutely, categorically refused to say "Thank You". My parents were appalled and as a parent myself now, I can kind of understand why. I'm sure I was the perfect picture of selfishness in their minds.

But I remember the situation a little differently. I remember very clearly the internal anguish I suffered over trying to find the right words to properly express my appreciation. It's one of my earliest and clearest memories. I remember thinking "I can't just say 'thank you' because everyone says that. If I just say plain, old, ordinary 'thank you', they won't understand how very much this means to me. 'Thank you' is so overused that it's not special anymore! They will think I don't mean it and am just saying it to be polite. The might think I'm insincere! I need something grand and intense that really captures the gratitude that I am feeling in my heart!" (Yes, I clearly had issues, but whatever.)

So, because I didn't have any better or more intense way of expressing the overwhelming gratitude in my heart, I said nothing. And thus ended up exiled to my room to ruminate on the brat within.

I find myself in that place again in life. While I have learned to say "thank you" with better grace and dignity, it sometimes still feels terribly insufficient. Right now I wish I knew a more suitable expression for how our little family feels about the people in our lives. I think crises really bring out the character of individuals; let me tell you, we are surrounded by the best people on earth. Our prayers of gratitude get a little longwinded sometimes, to the point where Tanner starts to whine, grunt and squeal that he "just wants to say amen". But we can't help but to be so thankful for our support system.

We feel so amazingly loved and supported by both of our extended families, our friends near and far, old and new, our neighbors, previously less familiar ward members, and even perfect strangers. We are continually astonished at the kind and generous words and deeds of so many people. This has been a very difficult experience for us, but the burden has been made bearable by the many acts of love and expressions of faith and support we have received.

So, while I continue to wish that I had the perfect turn of phrase to express our deep and sincere feelings of gratitude, "thank you" is all I have.

Crew's Good Week

Increasing feeds to 3.8 ccs per hour and weaning further on the cannula to 2 liters. He's got a big week coming up next week. He'll be getting a bunch of blood labwork done. He'll be seen by an opthamologist to evaluate for ROP and also getting another brain ultrasound. We're praying everything comes back normal. I'm so proud of him! He's digesting everything and doing so very well with his breathing.

And STILL Going...

The doctor called a little while ago. Crew is rocking with the digestion and the breathing thing right now. They are going to wean him from 4 liters of pressure on the nasal cannula to 3. They are increasing his milk to 3 cc's per hour. They are removing his Art line because they aren't taking so many blood draws any more. He's being really stable and he no longer has any prescription for Ver-sed (never saw that day coming). I'm grinning, can you see, hear, or feel my grin?

Still Going

I was positively terrified to call the hospital this morning because yesterday was so great. I didn't want to jinx it! But Crew is doing GREAT!! He is so far continuing to digest perfectly and he is sailing strong with the nasal cannula. Last time he tired out with the c-pap around 12 hours and we have passed that point already. He could still tucker out and be reintubated, but we're praying he'll have the stamina to keep going! Now that he's eating, he also has some more calories and a tiny bit more fat in his body to burn off as energy. That should help him out at least a little bit in this endeavor. Go, Crew!

FANTASTIC Day

Wow, today was awesome for and with Crew. My sister Heather flew into town from Washington last night, so we went to the hospital together to see Crew. We had a sporting neighbor come with us to the hospital to take care of Heather's nursing baby while she was with me and also to meet Crew, of course.

Crew has had an AMAZING few days and I am flying sky high. They had weaned him down to the lowest possible ventilator settings and couldn't go any lower, so this afternoon they moved him off the ventilator again and onto a nasal cannula. It has a similar function to the c-pap, but it's a little different, and a little more gentle on the nose. We're keeping our fingers crossed and our prayers very specific that he will succeed this time and not need the trauma of reintubation on the ventilator.

They started feeding him a few days ago, starting him at .6 cc of milk per hour. That is teeeeeny tiny. But he's a teeny tiny guy with a teeny tiny underdeveloped gut system. They have been increasing it until he is now getting about 2.3 ccs of milk per hour, which is about 2 ounces per day. For now he is tolerating it very very well. Digestion is one of those things that goes up and down, start and stop, but for now we're in a fantastic place with it.

He's completely off his Fentanyl, so there isn't even the option to give him a dose and he hasn't needed any Ver-sed for several days. He is more alert and yet is still remaining calm most of the time. He still sleeps most of the time (which is good, so that he can heal), but when he wakes up, boy, he really wakes up now!

I had such a good visit with him today. He was very very awake for part of my visit and held his eyes wide wide wide open for almost 15 minutes. He wasn't annoyed by me, except when I was giving him his bath. That's right, folks! They bumped up his bathtime from tonight to this afternoon so that I could participate. It was a little nervewracking, I'm not going to lie. I was so nervous about bumping that ventilator tube. But it felt so nice to scrub him down and rub his little head and wash out all his little creases. And furthermore, during the several minutes while the nurse changed his linens in his bed, I was able to hold him for the first time since he was transferred to this hospital. What a delicious treat! I got eye balls! I got to bathe him! I got to hold him! He is about 2 pounds now.

I gave him some fresh milk to use today, special delivery from the Mommy Dairy. I wasn't able to do a full pumping because they had a power outage in the middle of getting the job done. Yes, nothing more reassuring than a power outage at the hospital, don't you think? Of course, all of the important equipment is hooked up to backup generators and Crew's care continued without a hiccup. And PS, I hate pumping so it was a good excuse to cut it short. Wah.

So, today was a great day. Much much improved from Monday, and I'm relieved to report it. I really liked his nurse today, though I'll probably never see her again.

Some of you may wonder why there aren't more pictures of Crew on the blog. That's because they keep the lighting in the NICU very dim and cozy and using a flash is very overstimulating and is also not a great choice for his developing little eyes. So I have to work really hard when conditions (like sunlight and body positioning) are just right and then do my best to hold super still because my camera doesn't take great pictures without a flash. Today I worked really hard to get some shots of him. I was so happy to even capture his open eyes. Again, and as always, click to enlarge for maximum cuteness.

"Go away. I'm sleepin' here!"
"Mom? Is that you? Speak up, I say! I know you're there because I can smell you!"

You can see his stoma, where his intestines are now to the surface of his belly. I know you were all curious. The bag over it catches his poop. And he's been poopin' some good, seedy stuff. Go, Crew!
"I'm thinking about waking up to say hello, but I'm really tired."
Here I am holding my little peanut for a few minutes. He's 13 inches long now. Do you see him looking around with eyes wide open?
This is the only close up picture that came out of him with his eyes wide open. I have never seen them quite so alert as I did today. I could not get enough of those curious little peepers. Then again, he was a lot less medicated today than he has been since birth.
Bath time!

Thanksgiving

We celebrated with the grand Thanksgiving feast with Justin's family on Friday, so last Thursday we spent the day with Crew. Kinley and Tanner had never been to his new hospital, so it was quite an adventure for them. We busted out the traveling DVD player for its maiden viewing. The kids were highly amused with that treat, but it took us forever to figure out how to get it to work, pulled over to the side of the road before leaving the neighborhood. We haven't ever used it since we got it over the summer. We looked like idiots (which isn't all that uncommon, but whatever).

Because of RSV season, they don't allow siblings of this age into the NICU, so Kinley and Tanner spent time exploring the hospital. We met Grandma and Grandpa at the hospital and took turns with them visiting Crew. Most of the time Grandpa and Daddy were off on adventures with the children while Grandma and I were hovering around Crew, hammering for information.

We ate a semi-special Thanksgiving lunch in the cafeteria together. I say semi-special because it was the worst pumpkin pie I have ever dreamed of. And please believe me when I say that I am not picky about pumpkin pie. Homemade, frozen, 3 day old Walmart deli, someone else's half-eaten leftovers, seriously. Not picky. This. Was. Bad. I couldn't even finish it, and if you know how addicted to pumpkin pie and all things Thanksgiving that I am, you'll realize how bad it really was.

It was a good experience and I was really glad that the kids were able to feel at least a little better connected to Crew's experience at the new hospital.

Ghosts

Tanner (who is 3): Mommy, is that a ghost?

Me: Um, no, it's not.

Tanner: What is it then?

Me: A breast pump.

Tanner: oooooooh....

NICU Reality

I suspect that I might have better coping skills if I had had more than 4 hours of sleep last night, but it didn't happen. It has definitely been UP and DOWN these last few days. "The Children's Hospital is is the best!" they say. "People come from hundreds of miles because they are so great!" they claim. "If you want your baby anywhere, it's there for sure!" they insist. Really? REALLY? I'm sooooo not convinced.

I have been putting out multiple fires for three days and having to go in to advocate for things that seem like no-brainers to me. It is so terrifying to leave my fragile baby in the hands of perfect strangers and have to trust that they won't make him even worse.

Saturday
On Saturday they accidentally screwed up his ventilator settings and he nosedived into a respiratory alkalytic state. Wanna read some scary stuff? Google "Respiratory Alkalosis". Fortunately the nurse that came on an hour later caught the error almost immediately and he was back to normal in less than two hours from start to finish. Being in that state for a prolonged amount of time can cause cerebral palsy, quadraplegia, severe mental retardation, and a host of other complications. What does "prolonged" mean? I have called every neonatologist in the state that I have access to to ask that question and apparently there is no official answer. They all seem agree that his duration shouldn't be problematic, but no one could or would guarantee that because there are no controlled studies.

I was a total head case all night Saturday, so on Sunday we bailed on our niece's baby blessing (still feeling really guilty about that), sent our kids to church with a neighbor and went to the hospital. I told Justin that we weren't leaving until I felt comfortable again. We were there for hours, and after having a little round table with the (traveling/on-call) neonatologist, resident (of the day), and the nurse (who at least had seen Crew before and happened to be the one who caught the error the day before), I felt a little better.

Still, on this particular situation I'm sitting here going back and forth between really frustrated that it happened in the first place and extremely relieved and grateful that it was resolved so quickly by a fluke half-day assignment by the "right" nurse with the right knowledge of the equipment and Crew's history. I feel pretty confident that she got some help from Dex that day.

Head Shape
Now that his body has so much less swelling, I have started to notice that his head shape is starting to get long and thin. It looks like they have just been rotating his head almost exclusively from one side to the other, spending little or no time in the middle or any other position. At our local hospital they are Nazis about keeping their head shape in good condition from day one. So, I called one of his nurses last night and asked her what she thought of the shape of his head. The following comments are NOT an exaggeration or embellishment:

"Well, preemies get what we call "toaster heads". The ventilator is so heavy it pulls it over and then they really get used to having it on the side so even when they aren't on the ventilator anymore they prefer their side so then it just continues... yeah, they pretty much look like that for the rest of their lives. But I wouldn't worry; it doesn't look so bad once they grow hair."

ARE YOU SERIOUS??

I went in this morning with that discussion on the agenda. I met with (yet another) neonatologist and (a different) resident and (yet one more unfamiliar) nurse. I told them that I was concerned about his head shape and wanted to do everything we could to intervene and make sure we were addressing it starting now. They assured me that they always do everything they can and always rotate it to midlines and never just side to side. I told them "what I had been told" but didn't specify who had said it (could have been Grandma for all they knew) just so that I could see their reaction. They were horrified and said, "oh, no no no, maybe many years ago, but certainly not today. I pursed my lips and said, "could we please make it a really big focus of his treatment because it was one of his nurses in this NICU at this hospital that told me that." Their jaws dropped and they were suitably horrified. They promised me they would make sure.

BUT... I didn't see them write it down, including in the file that gets passed between the nurses. So I had to be the one to request that the nurse put a big note in there for whomever sees Crew next. He sees so many nurses that don't know anything about him and for crying out loud, the one who does know him well is the one who embraces the concept of being a toaster head!! I find them to be amazingly disorganized. Everyone always complains about the terrible communication at this hospital so I have been surprised at how well they have communicated with me since he has been there. It didn't occur to me that they wouldn't communicate with each other!

Fentanyl vs Ver-sed
Yesterday at our little round table we discussed weaning him further off his pain medicine. He had been on fentanyl 4 times a day plus additional as needed. The doctor encouraged them to stay away from additional Fentanyl as much as possible and to use Ver-sed instead because it might just be agitation, for which Ver-sed is more appropriate. Plus, Fentanyl slows down the digestive system and Ver-sed does not. We just started him on feedings yesterday and we don't need any interference!! So the message was very clear: go for Ver-sed first.

Today at the round table Fentanyl was discussed again. I told them (since they were all different staff from the previous day and no one else seemed to have note of it) that Dr. B. had recommended going for the Ver-sed before Fentanyl. They all nodded their heads and said that sounded like a good idea. (Idea? That was the plan.)

So a few hours went by and I went to pump. I was gone for 25 minutes and when I came back the nurse told me that he had been upset and agitated so she had given him a dose of Fentanyl. WHAT???? Were you not standing right there when we discussed this? Does no one write anything down? I reminded her that she was supposed to try Ver-sed first and she said, "oh, ok, that sounds like a good idea. I'll do that next time." Like it was brand new information? And why wasn't it already in his bedside folder from yesterday in big, bold letters? Again, I had her write a BIG note and leave it in the chart for any other nurses that come into contact with Crew. Honestly, folks, I'm not asking you to think outside of the box, just follow the plan!!

Milk Wasting
I store some of my milk at the hospital. I have probably 15 or so big bottles full of recent milk and 20-25 older bottles that have colostrum and tiny amounts of milk. They are all organized by age and size, bigger, more recent in the back, older, smaller right in the front. He's only drinking very tiny amounts of milk now and after it is thawed they have only 24 hours to use it before they have to throw away excess.

So, wouldn't you think that if you know he is only going to use 20 cc's of milk in a 24 hour period that you would try to find one of the 25 bottles that have less than 20 cc's in it? Nope, one of the nurses left all those great colostrum bottles and tiny bottles and pulled out one with more than 70 cc's in it that was actually harder to access. Thanks. A. Lot. Do you have any idea how hard it is for me to make milk?? By all means, just throw it out when you have other options. No problem. I asked about the policy on that this morning and was told in chagrin that it really depends on the nurse. Again, I say WHAT? So, on Wednesday when I go up I'll be bringing a colorful little sign to hang on his milk bin that says "please use tiny bottles first". Why should I have to be micromanaging such ridiculous things?

Ultimate Rejection
Add to all of this that Crew completely rejected me today for the first time in his 22 days of life. He didn't want me to sing to him, talk to him, touch him, or even look at him. I had to peek under a corner of the blanket for a few seconds at a time. He opened his eyes and was friendly for just a few minutes when I first arrived. After I changed his diaper he was absolutely done. Even having the blanket cover pulled back half way from the isolette was too upsetting for him. It killed me to not even be able to touch him when I wanted to so much.

Anyway, that is what has been going on these last several days. I have disabled comments on this particular post because I just need to vent so that I can move forward and I don't want to start a discussion on it.