Thursday, January 31, 2008

Super Tuesday*

So many things to update on! Let's get right to it...

1) Check out the above (with apologies for the darkness and the blurriness) - no tube! His feeding tube came out yesterday afternoon. He was angry about the tape getting pulled off his face.
2) They told us to bring in the carseat. We've been told about a million times that when they tell you to bring in the carseat, it's almost time to go! So we brought in the carseat.
3) He's scheduled for another hematocrit and reticulocyte count (to make sure he is not anemic) tomorrow, repeat head ultrasound tomorrow, and eye exam Monday.
4) He's 6 lbs 4 ounces!!

And the fin de piece de resistance de awesomeness....
5) He has a tentative discharge date of Tuesday, February 5th. La LA LA!!!!!

Joe and I are so so thrilled, but of course also terrified. To allay those fears somewhat, we're going to be rooming in with our little man on Sunday night. Rooming in means that we get a little family room to hang out in with Graham in his crib right next to us. We wake up when he's hungry, feed him, diaper him, do everything that we are going to be doing at home. And we'll still have the reassurance of the monitors and knowing that the nurses are right next door if we needed anything. As Pam said today, we start treating him less like a patient, and more like a real baby. Of course, Joe is a little sad that he'll have to get Superbowl updates on the computer instead of actually watching the game, but I am sure I will find some way to make it up to him.

*When I was thinking about writing this post, I thought I would be clever and title it "Super Tuesday" since he is getting out on a Tuesday. Then in the shower I realized that it actually will be Super Tuesday. I'm not just clever, I'm Super Clever! Except I don't even know it.

Wednesday, January 30, 2008

All he needs is a gold medallion and some chest hair

I'm imagining a little baby voice going "Heeeeeyyyyyyyyyyyy." Oh, it's so funny in my head! (Thanks to Pedro and Beth for the fly threads - chomp stomp roar!)

The update from his echocardiogram is t
hat it's actually nothing - his foramen ovale just hasn't quite closed yet, which is not problematic at all. For those of you not in the know, the foramen ovale is a little opening between the two sides of the heart that helps shunt the blood away from the baby's lungs when he's not using them in utero - then it shuts when the baby is born and starts using his lungs. The time it takes to completely shut, even in full-term babies, is up to a year. So, absolutely nothing to worry about! Hurrah!

He's also being a complete champion on the eating - breastfeeding upwards of 30 minutes, taking all of his bottles, and still gaining weight like a pro. He's almost 6 lbs 3 ounces! We're getting a tentative "early next week" discharge date from the neonatologist. Crazy. Luckily, my re-scheduled baby shower, all thanks to my wonderful mother-in-law, is happening this Sunday. So we'll actually have the stuff we need!

(see below for joe's late-breaking addition to this post...)

Tuesday, January 29, 2008

The storm before the calm

We knew we couldn't get out of here without a little bit of drama. Graham is doing great, but the attending on today thinks he has a bit of a heart murmur. A murmur isn't that big a deal, and especially not the kind of murmur she believes he has, which is a physiologic pulmonary stenosis (PPS). There is nothing actually wrong with his heart in PPS - it is due to either the artery going to his lungs being a little small (since he is a little small) and therefore the blood is a little turbulent, or it can be due to anemia and thus increased blood flow through a normally small space. However, she wants to get an echocardiogram just to be sure. So, just one more nail-biter to get through in our quest to get our little Grahamchop home.

In addition, he's got lots of little hoops to jump through between now and then. He has to have a repeat head ultrasound (all preemies have them on day 30 of life, but since he is getting ready to go home, they are jumping the gun a bit), his hearing test, his carseat challenge test (because some premature babies breathe less easily when sitting in a carseat) and his eye exam (checking to make sure he doesn't have retinopathy of prematurity) - all probably between now and Monday. So I think this will be a very calm, relaxed week for Joe and I.

Monday, January 28, 2008

Hold yer horses

And by that I mean hold my horses. The feeding tube did not come out over the weekend, even though he did a great job eating. He still gets a little pooped from all his hard work from time to time, and we have no interest in pushing him. And honestly, we're okay with him having a few more days in the SCN - the idea of him being home by like, Wednesday, was really freaking us out. But it will be sooner than later. Joe and I both agree that he feels like he's really starting to figure things out: Joe gave him a bottle today that he practically chugged (we often pretend to upend the bottle on the table or throw it down on the floor when it is empty -- teaching the boy important drinking behavior for college) and he just looks older and more mature. He's 35 weeks today, and a little over 6 lbs. His O2 saturation is consistently 98-100%, whereas even a few days ago he would drift around down near 90%. The nurses have suggested that we attend the discharge class this week, because they don't think we'll be here next week. It's all pretty exciting, but we're at the point where it is great if he comes this week, but it would also be fine if it wasn't for two weeks. Whatever our little guy needs.

The other big news is that he got his circumcision done yesterday and it went really well. He's a little swollen today, but we've been assured that will go down rapidly. Now, since I was just warned about blogging about parenting decisions yesterday, I will note that this was an incredibly hard decision for Joe and I to make. I had been 100% against circumcision (unnecessary, stressful surgery that fundamentally changes his body) until the research came out about the decrease in the likelihood of HIV transmission with circs. Regardless of my feelings, HIV is not something I am interested in for my son. So, there it is.

Anyway, we are here at the hospital for the day today - I think we'll probably try to be here 8-5 every day this week so we can do as many of his feedings as possible. And we'll see how it goes!

Saturday, January 26, 2008

Notes from the hospital

We're sitting here in our boarder room (just an empty hospital room over by the NICU) and I am antsy as heck. Joe is watching The Wire on DVD (you Wire watchers are obsessed) and I'm trying to read. It's very different to be at the hospital and not be with Graham than being without him at home. Here, I know that he's only a five minute walk down the hallway, and I want to be with him badly. But I would just be sitting there watching him sleep, and I need to sleep myself, and he needs his sleep to not be interrupted by his crazy mom.

I'm also antsy because I think things are starting to move really quickly towards Graham coming home. Joe wants us not to get our hopes up, and to keep the details of any timeline to ourselves so as not to get everyone else's hopes up, but what is a blog for if not for sharing? Graham has been doing amazingly well eating-wise, and has taken all of his bottles yesterday and today...which means that if he takes the whole bottle at 4 am, he gets his feeding tube pulled. Which means then they watch him for a few days and make sure that he is still taking all his bottles and breastfeeding well, and that he is still gaining weight, and if all that is good, he gets to go home. Aaack! Of course, I think telling us this stressed us out, which got transferred to Graham (not that we were trying to stress him out, obviously - but just in a vibes sort of way, if you're pickin' up what I'm puttin' down). And so he took the longest he's ever taken to start breastfeeding when I tried him at 4 pm today, and then took the longest he's ever taken to take his whole bottle for Joe at 8 pm. Oye. So Joe and I are just trying to cool it out, big time. We are also letting Graham cool out and rest up by having him just do a straight tube feed at midnight, which I guess is allowed in this whole pull-the-tube process. So now that I've gotten all this off my chest, Joe and I are going to brush our teeth, pull up our wafer-thin hospital blankets and try to snuggle into the very small hospital bed together. Alarms set for 4 am!

Possible future career?

Wise, just and jolly headmaster of Hogwarts School of Witchcraft and Wizardry. No?

Friday, January 25, 2008

I'm pretty sure we will annoy the heck out of him someday

As I think most couples do, Joe and I have a language all our own inside the confines of our marriage. But I think our conversations are probably more ridiculous than most (right, Maura?). Recently we've started naming all his outfits (see above, called "ducky dots") and the problem is that it starts out being a joke, but then it turns into common parlance and I know I am going to turn to Joe sometime in the near future and say something like "Could you hand me his ducky dots?" or "Is ducky dots in the wash?". And I can only surmise that this pattern will continue, and that someday in the slightly more distant future we will say something to horribly embarrass him in public that really, should have stayed a joke at home. Ah well - parents are always embarrassing at some point, right?

Anyway, Graham is making such great progress on eating and gaining weight. He's up to 5 lbs, 12.3 ounces, and has been taking almost all of his bottles completely. He also breastfed twice today and we brought his tube feeds down to 3/4 and then down to a half of the full feeds given how well he did on the breastfeeding. What a superstar! On the advice of our nurses, we are planning on boarding at the hospital tomorrow night. This entails having an empty hospital room and not much else - we bring our own food and supplies and everything, and get to be there for all his feedings through the night. Hopefully that means a lot more breastfeeding opportunities if he doesn't get too exhausted. Joe says he's going to let me handle the 4 am feeding on my own. Fat chance, my friend, fat chance.

Thursday, January 24, 2008

Our little elf

How adorable is that? Right??? Grandma Kathy (Grandma Big K to some) got this little outfit for him, and he looks like he should be snoring away in my Christmas stocking or something. He's doing great - up to 5 lbs, 10 and a half ounces, and taking bottles pretty much at every feed that we're not there for. He's not taking all the bottles fully yet, but he's making tremendous progress. And since he's still gaining weight, that means that he's not too stressed out by this whole "eating" thing. Hooray!

My grandma is actually doing much better today, and (fingers crossed) is currently getting transferred to a nursing home that is very nice and also very close to my parents' house for some short-term rehab. The only downside is that this very nice nursing home is also private, so she probably won't be able to stay there long-term. But for now, this is a pretty ideal situation (again, fingers crossed).

We're headed to the hospital shortly, and this should be an interesting visit, because we've got a lot of questions about what happens in the coming weeks. Should I come in to breastfeed more? How much does he need to be taking by mouth before the feeding tube gets pulled? What happens after that? What else needs to happen before we can take him home? And then, what happens when we FREAK OUT when we actually have him home? Is there a phone number for FREAK OUT?

Wednesday, January 23, 2008

All apologies...

...for the no good, very bad blogger that I was today. It was a bit of a doozy. Graham is fine (better than fine! He took a whole bottle this morning, breastfed this afternoon, and took more than a half a bottle from Joe tonight. He is exhausted.) but my grandma is up and down, to say the least. She is actually in the same hospital as Graham, two floors up from the SCN, and so the end of life and beginning of life are competing for my attention in a very surreal way. To top it off, Joe and I realized that we came home from the hospital tonight with no breastmilk collection bottles, which meant that pumping the four or five times that I will need to before we go back to the hospital tomorrow (which is where said collection bottles are readily available) would be difficult. We had to make a mad dash out to the local supermarket to pick up baby bottles which luckily seem to be universally sized. Thank you, Shaw's of Hanover, for being open until 11 pm when there is absolutely no reason that you should be.

More pictures and so on tomorrow, promise.

Tuesday, January 22, 2008

My boys

Look how snoozy and comfortable! Graham's got a little bit of the "baby old man" look in this picture, but it's still nice to see how much he's grown since he was born. See?And numbers-wise, he's up to 5 lbs, 8 oz. That's the bottom of the normal, full-term birth weight spectrum! And he's still only 34 weeks 1 day. If the ob/gyn's had had their druthers after my water broke, I would have delivered him yesterday. Crazy!

The other big news for today is that he had his first bottle this morning. Report from the nurses is that he ate like crazy (he took 35 mL, about half of his current tube feed) and then absolutely passed out. Just like his dad! (To be fair, not unlike his mom either.) Joe just reminded me that he also projectile pooped on me this morning. Just like his dad! =)

Monday, January 21, 2008

Our NICU is the best NICU

This picture is Joe's favorite from today because you can almost convince yourself that he is smiling...or that he just pooped. Either way, my boy is goddam cute.

Graham's continuing to just do tre
mendously well. He's up to 5 lbs, 6.4 oz (go breastmilk!) and we think he's really starting to fill out. We've been told that preemies will often fill out their faces and torsos first, and then it spreads to their little arms and legs. So, fat man in a little coat, here we come!

Breastfeeding continues to go well, and I've been told to just go ahead and feed him when I come in without pumping first. If h
e continues to do well, they will start decreasing his tube feeds (as long as he is still gaining weight). And he'll probably try a bottle sometime this week! All very exciting.

And when we opened up our local paper this morning, there was an article all about our favorite NICU:
Granted, the article is more about this particular family than the NICU, but that's us! That's where we are! And Dr. Lloyd, the director of neonatology, did her peds residency at U of R. So you KNOW we're in good hands.

Sunday, January 20, 2008

Super trooper

Graham has just been such a calm, collected little baby even with all the stuff he has been through in the past couple days. Today the wick got pulled from the drainage site on his ankle and once he found his thumb, he didn't make a peep. He also had a little silver nitrate put on his belly button because a part of the cord hadn't healed over yet, and had to have some bacitracin put on because the silver nitrate got a little outside the area they were aiming for (to be fair, it's a really small area). He also had a few spit ups, one which came up through his poor perfect little nose, and now he's got some congestion left over. Joe also pointed out that he had visits from three of his grandparents and made good eye contact with all of them. Watch the grandmas melt! Anyway, the point is that thus far, his personality seems to be very relaxed and chill. The nurses keep telling us that we also seem calm and relaxed. Only on the outside, friends. Trust that on the inside, and away from the hospital, we are giant neurotic messes. Things to look forward to, my darling son!

No big news on the weight front, since he had such a big growth spurt the other day. But he did a really good job with breastfeeding today, and turns 34 weeks tomorrow, which is when they expect babies will start figuring out the suck-swallow-breathe process. So Pam suggested that I start trying to only pump half-way before feeding him and see how he does. All very exciting - I honestly have seen nothing more beautiful than Graham when he is breastfeeding. He is so relaxed but alert, with his little blue eyes wide open and his hands right next to my heart.

Lastly, I am pretty sure that the staff of the SCN must think that drama follows our family like we are the Pied Pipers of Ludicrous Situations. My grandmother fell in her apartment this morning, and so my mother and she were down in the emergency department all day while we were upstairs at the same hospital. My parents are in the process of finding a nursing home for my grandma, since it has become clear that she can't live alone anymore, but they haven't found one yet. And it's also a holiday weekend, so no nursing homes were going to come screen my grandma to take her today. Luckily, the case manager on call at the hospital went to bat for us and she got admitted at least overnight until we can find someplace. My mom came upstairs to see Graham all masked and gowned given the exposure to Norwalk and also because my gram has bronchitis! Which we think my dad also might have! Too much drama in the LBC, man.

Saturday, January 19, 2008

Our fat little man

There will be a lengthier update with daily photo later, but I just wanted to note that Graham is FIVE POUNDS, THREE OUNCES today. Dance of glee!

Friday, January 18, 2008

Big boy bed

The reason you can see Graham from above today is that he has been moved into an open crib! No more baby in a plastic box! It's very exciting. I had to try very hard this morning not just to swoop in and pick him up (because I could do that now) - Joe had to keep reminding me that he still needs the same sort of quiet and rest and non-stimulation that he did before. And of course while I definitely needed that reminder, and Joe is a wonderful partner, it is times like this that I feel myself morphing into some sort of giant monster Mama Hulk growling "GIVE ME MY BABY...ROWWWRRRR!"

His foot is still doing well. We're waiting for the culture and sensitivities to come back, which we should find out this afternoon when we head back to the hospital. They changed the dressing this morning when I was there, and it looks great. The peds surg guy did leave a wick in the incision (oh, brings me back to my baby butt abscess I&D days on my peds surg rotation) and the drainage is minimal at the this point. No induration, very little redness. Word. He only gained 4 grams yesterday, but he did have a pretty stressful day with the I&D, so we're not worried.

The only other drama for our little family today is that my grandmother's nursing home is having an apocalyptic run of Norwalk virus which my grandma seems to have come down with. Add that to the respiratory problems she's already having, and my parents have to take her to the hospital. Since they then will have been exposed to the Gastroenteritis of Death, we are taking ourselves over to Joe's parents for at least the weekend. It's amazing how much crap that entails packing up. We don't even have the actual baby yet, and the amount of baby stuff we need to have on hand is ridiculous. In any case, that's where we will be for at least a few days, and it's great to have that option - the last thing we need right now is to be paying for a hotel room someplace.

Thursday, January 17, 2008

Graham wears clothes!

Since the isolette warmer has been turned off (it was! this morning!), our favorite nurse (oh Pam, how we love you, if we had the money we would pay for you to be there 24-7-365 except I know that you would probably not be quite as amazing on a 24-7 schedule) suggested we bring Graham in some clothes to wear. Umm, certainly. Except we had no clothes. And then it was like a postmarked miracle - clothes arrived from Keith and Christine in Rochester! A beautiful little sleeper, which, although you may not be able to see it in the picture above, has a dino on it and also says "dino" on the left-hand side. Joe and I jumped around all morning singing about his "dino suit." So thank you, Keith and Christine and Nate and Sadie! Without you our child would be naked.

The dino suit also came with an adorable little hat; however, this child had absolutely no hope of having a small head and thus, it didn't fit him. Both of his parents have enormous melons. Sorry, Graham! Let us hope that the worst thing we bestow on you is a hard-to-find hat band size.

Graham is up to 4 lbs, 14.5 oz today, which is fantastic. They did have to I&D his little IV site infection pustule on his foot this morning (I&D = incision and drainage) and they are going to keep him on the Keflex for another three days unless the culture comes back with something that the Keflex doesn't cover. Luckily, we weren't there for the I&D as I think it would have scarred us way more than him, and he seems to have suffered no ill effects. He was a champ on the breastfeeding again this morning, and we'll probably start trying to feed him more from the breast and try a bottle or two next week sometime.

Lastly, the Loud Family has been moved. Without us saying anything. Because of Pam. We love her.

Wednesday, January 16, 2008

Loud people should be banned

Today we got new neighbors in the SCN. And they are loud, loud, loud. This morning the new mom and dad got in a fight (during which the dad stormed out. Stormed out of a SPECIAL CARE NURSERY.) about the fact that the dad was calling the baby "bilirubin" as a new nickname. This was because the nurse had explained that their baby was going to get a bilirubin level drawn tomorrow morning to check to see if he was jaundiced, and dad thought it sounded funny. New mom got pissed that new dad kept calling the baby "bilirubin", dad eventually got pissed that mom was pissed, and then he stormed out. Fun! I don't think I can write the word "bilirubin" anymore. For at least a year. Good thing I'm on leave from medical school.

On to more important things: Graham is doing amazingly well. He's up to 4 lbs 13.2 oz. Wahoo! The phototherapy lights remain off, his foot keeps getting better and better (his little IV site infection), and he's becoming a genius at breastfeeding. Well, maybe not quite a genius yet, but he tried two times today, and spent about 15 minutes being interested e
ach time. Apparently that is quite an achievement for a now 33 week 2 day-er. He also is getting really alert and aware, especially before feedings. He actually gave us a couple good cries today! And he was a little on the warm side when we got him out this afternoon, so they have brought his warmer down to 27 degrees C. If he keeps his temp stable there, they will turn off the warmer and just let him be in the closed isolette for a few days. Another big step, so we're over the moon.

I'm going to try on future days to post a picture of Graham a day, but when I tried to take one this afternoon it was too dark, and I wasn't about to turn the flash on.
So for today, please partake of this very attractive picture of me crying and laughing and being exhausted, drugged and bloated after delivery:

But of course, I would do it all over again in a heartbeat.

Tuesday, January 15, 2008

Update from our family meeting

Our family meeting was not that informative, actually. We know that the steps to him coming home are maintaining his temperature in an open crib, not having serious apnea spells, and gaining weight on just bottle/breast feeds. But we still need to grill the nurses to find out how they make the decisions to move him step-wise towards those goals, because if the family meeting reinforced anything, it's that the nurses are the ones who know and do EVERYTHING. I am on a career path to obscurity and non-necessity.

However, if anyone has any good leads on any of the following, we'd be very happy:
-who runs early intervention services in Rochester (I plan on calling my OB, since she's a family doc, but if any of you have experience with a particular provider, that would be great to know)
-recommendations for pediatricians in the Rochester area, particularly those that specialize in dealing with preemies
-recommendations for pediatricians on the South Shore in MA, again specializing in preemies (we'll probably stay for a few weeks after discharge and will need to do his eye exam (for retinopathy of prematurity), hearing test, and post-discharge check-up here)

We thank you.

Phone update from the SCN this morning

4 pounds, 11.3 ounces! Picture Joe and I doing a little dance of weight-gaining joy.

Monday, January 14, 2008

Lengthy first post

Hello all friends and family -
While I think this will mostly be a project for Joe (he's had a little blogging experience in the past), I wanted to start getting photos of Graham up for everyone to see. The overall update is that he is doing extremely well, which we are thrilled by every day. He got moved last week from the NICU to the level 2 Special Care Nursery because he was so stable, which was awesome. He has a whole little area all to himself back there, and lots of nurses who just dote on him (because he is clearly the smartest, most handsome little boy ever). He is off all IV's (although he did get a little phlebitis at his IV site on his right foot, and is now on Keflex for a week - but it has already gone way down from the initial swelling) and is just on tube feeds of breastmilk plus a few additives. He did have to do some phototherapy for jaundice, but the lights have gone back off today (which is good because he hates the lights).

As I think I wrote in my first email, he's doing really well respiratory-wise - he never had to have oxygen or a ventilator, and no apnea at all as of yet. So really, it's just a matter of getting him growing and feeding. He's started breastfeeding a few minutes at a time, and the lactation consultant says he'll just get stronger and better. The next step is to start bottle feeds of breast milk, although we don't know yet when that will happen.

Joe and I are doing well, if still really exhausted and fragile. I, unfortunately, was doing fine recovery-wise until I got put down by a bout of mastitis yesterday. Sigh. So I am actually just resting in bed today while Joe visits with Graham and the South Shore gets hit by a nasty little snowstorm. I really hate not seeing my beautiful little boy, but I know I need to rest up. Joe has been amazing through everything - becoming the absolute administrator for our little family, not a role to which he is accustomed but one in which he is succeeding beyond measure. Joe's job has been relatively flexible, allowing him to telecommute, although still having the expectations of a 40-hr week is pretty stressful.
I'm just trying to get used to breast-pumping 8-10 times a day!

Tomorrow we have our family meeting with the social workers, developmental folks and so on. Hopefully we'll have a better guess about how long Graham will be in the hospital after that, although I've yet to see a neonatologist actually commit to even a guess at a discharge date.

Lastly, here's the place to go for even more pictures of our little man:

And Joe will probably be doing the lion's share of the posting from here on out, which means more funny, more photos, and more poop jokes. Huzzah!

Sarah/Spence/SSW/Graham's mom!

Just in case you didn't get the original email...

Some of you may know part of this story already, but I wanted to let you all know that Joe and I are the proud parents of Graham. He was born on January 4, 2008 at 6:03 pm, coming in at 4 lbs 10 oz, 18 inches, and about 8 and a half weeks premature. I was actually at my parents' house in Massachusetts last Sunday night (a week ago today, which is difficult to believe) when my water broke. Joe had just driven back to Rochester that morning and got a late night phone call that he had to do it all over again (through an actual blizzard, mind you). I went to the local hospital near my house and they kept me out of labor and gave me steroids to help Graham's lungs mature, which was great. Graham held on until Friday morning when I started going into active labor - but even that was easier than expected. Graham was breathing on his own right from the start - no ventilator or oxygen needed - and he's doing unbelievably well. The nurses in the NICU all think my dates were wrong - I just tell them I ate lots of fatty foods and kept exercise to a minimum. =) He'll be in the hospital in Massachusetts for likely the next 6-8 weeks, but he really just needs time to grow and mature. Thus, we're Massachusetts residents for now! We're very lucky to have both my parents and Joe's parents here putting us up, and the hospital is fabulous. They do have a full level 3 NICU for those in the know, and actually Graham is doing so well he'll probably move to their level 2 special care nursery before too long.

Thank you so much to all of you we've already heard from with all your support and caring - it has meant the world over this insane week. For the next few weeks, Joe and I will be trying to get accustomed to the routine of being NICU parents and working out of the hospital, but I know we'll want to see as many of you as possible and introduce you to our son after that. In the meantime, we'd love to hear from any of you by email or phone or whatever!

I'm sure we'll have photos to send along soon as we are taking millions. We hope all of you are well - I know it sounds trite, but we could *feel* you all loving us and thinking about us this week. We are a very very lucky little family.