Saturday, March 16, 2013

In case you want to know more...

...about how my children and I are doing. I have a new blog, which I am (for the moment) keeping somewhat ungoogle-able and not divulging quite as much personal information as I did here, as it largely involves my children and their private, medical information, etc.

Anyway, I'll leave this link up for a few days, then take it down. If you missed it, feel free to message me or leave a comment.

Thursday, August 9, 2012

6 months old!

Hi....

Yes, we're all still alive, and yes, we're incredibly busy! My boys are thriving. Atticus has had some health problems requiring a few more hospitalizations and surgeries, but we think all of that is in the past now. Damien hasn't even had so much as a cold.

They're so big now--Atticus has more than tripled his birthweight and is finally on the regular (adjusted) growth charts. Damien is not about to accept the title of "little brother" and has eaten his merry way into the 85th percentile for height, and 43rd for weight.

They both make adorable talk-y noises, have big huge grins, despise tummy time, roll over, put things in their mouth, etc. Damien can sit unassisted, though Atticus cannot. (However, since Atticus has *still* spent more time in the hospital than out of it, including nearly 4 whole weeks from ages 3.5-4.5 months being intubated and under heavy sedation, I think he's doing simply amazingly well.)

I still think of you all and occasionally have time to read a blog or two. If any of you are on Facebook and would like to get updates from there, let me know!

Wednesday, April 4, 2012

Atticus is home!

I just wanted to let you all know that, on April 1st, aka Day 62, aka 2 months 1 day, my sweet Atticus came home. He's on oxygen, a pulse ox, and has suction and of course his G-tube. I call him my Bionic Baby. (Amongst other things--both of my boys have a million pet names.)

Taking care of him is, frankly, challenging. He's not very portable and is on a very strict feeding schedule. (He was in the NICU for so long because he has reflux and difficulty protecting his airway, so had several choking/brady episodes. The NJ attempts failed numerous times, he's too little for a Nissen, and it's too soon for a GJ. So we're just feeding him small amounts, very slowly.) Balancing him and Damien is difficult. I've had my mother and grandmother both help "babysit" (while I'm at home!), and my husband has taken more FMLA time. I don't know what I'll do once he goes back to work.

It's so worth it, though.

I love having both my little men in my own home, in my own arms. They're the best thing ever!

Thursday, March 8, 2012

And on the 37th Day...

37 days after he was born, and my Atticus has his face all to himself. No oxygen support, and no (facial) feeding tube. No stickers on the side of his face to hold things in place. No bili sunglasses. Not even a hat. Just his adorable face.

Come home, baby Atticus!

Damien celebrated his 37th day (and night...) with the worst reflux we've had yet. If we put him down for even one minute, he cries or vomits. (Or both.) I got no sleep at all last night, and my mother had a rough time of it baby sitting while I visited the NICU.

Oh my word, what I wouldn't give to be kept up at night by both my babies' screams under one roof.

Sunday, March 4, 2012

I hate the NICU

Horrible, horrible day for Atticus. His feeds aren't progressing, bowel is hypoactive, so will need TPN for *at least seven more days*. Fuck. So for the second time they tried to give him a PICC line, and once again failed miserably. And he got so upset (those fuckers didn't sedate him enough, I'm guessing) that he extubated himself. So they tried him off the vent and he needed to go back on after 40 minutes. I'm so upset. We've gone completely backwards since surgery. I feel like I'm never getting him home--they're now talking about drastic measures (IMO, especially since he was on room air--not even a cannula!--at the other hospital) like jaw surgery to open his airway some. I just want him safe and home

Thursday, March 1, 2012

Happy One Month

Yesterday was my boys' one-month birthday. Impossible to believe that.

Atticus's surgery went extremely well. No airway abnormalities (although he does have a slightly small trachea...but then again, he is a slightly small little dude), intestines easy to place, perfect little G-tube button. OR was running behind, so we spent much more time waiting for him to get into surgery than to get out of it. I go to visit him soon, but as of my last call to the NICU, he was doing well. On pain meds but somewhat awake, and weaning himself off the vent.

Damien was an absolute angel during the wait. He's a very vocal little guy, lots of grunts and coos. Everyone in the waiting room knew we had another baby, and several people told me how cute he is. Which, why yes indeed. But he didn't throw a single fit or cry except briefly when he was hungry.

I can't wait to have both of my boys under our own roof. And to hold them both at the same time, something I have yet to do.

Wednesday, February 29, 2012

Surgery

Atticus is having surgery in 4 hours (if the OR is on time). Please keep him in your thoughts.

Sunday, February 26, 2012

Eh, never mind

Apparently, "going private" means "quitting" around here.

I don't know how frequent I will continue to blog, so I'll just stay here.

Having Damien at home has been absolutely wonderful. Everything I ever hoped it would be. (Even though he has some bad nights, like last night, when I find myself saying, "Sweetheart, what on earth can I do to get you to quit crying?")

Atticus is still in the NICU. He has a microdeletion on one of his chromosomes which caused his cleft palate and small jaw, and that's really all I want to say about that, because he's perfect to us. He will be having surgery sometime this week, to get a g-tube and to fix the malrotation of his intestines. Hopefully he will come home soon after that. He has been checked out very thoroughly, and his heart, kidneys, eyes, ears, etc. are perfect. So our problem is feeding, and that he desats with some frequency due to obstructive apnea. (His tongue falls back into his throat--this should fix itself as his mouth/jaw grows, but for now he is back on oxygen and will probably come home with some, at least for sleeping.)

Balancing having one baby at home and one in the NICU has been very difficult. I can drive again now though, thank goodness.

Neither of my babies can effectively breastfeed, so I am pumping around the clock for them. Pumping sucks, but it's worth it to give my boys antibodies and nutrition. My supply is enough for them right now.

Atticus clocked in at 4 lbs 13.6 oz last night, which is awesome. Damien sees his pediatrician for a weightcheck on Tuesday. (He was 6 lb 14 oz at his last check, but I kind of cheated because I'd fed him only an hour before, so he was probably only 6 lb 12ish.) He has thrived at home, and I truly believe that, when we get Atticus home, he will thrive too.

Monday, February 13, 2012

Damien update and going private

Tomorrow, my boys turn two weeks old. If Damien gains weight tonight, he can come home tomorrow! Yay! Atticus will be transferred to the children's hospital once Damien is home, where he can get more specialized care, particularly on eating.

I'll be going private from here on out. To keep reading, either leave your email in the comments on this post or the last one, or else email it to me at marissaDOTaDOTcATgmailDOTcom.

Thanks again for all the thoughts and prayers.

Saturday, February 11, 2012

Going private

I'm trying to figure out how to make my blog private.

Those of you who have done it, how did you do it and how did you let certain people read it?

My boys are doing ok, still in the NICU and still facing a lot of challenges. Because this is about them now, I no longer feel comfortable being public, but don't want to leave blogging altogether.

Tuesday, February 7, 2012

Room air!

My little Atticus is off his Vapotherm!!!!

He's being moved into the Level II unit now, and will be with his brother.

Wonderful, wonderful news.

Monday, February 6, 2012

Pictures

This is Atticus, on his first night.




This is Atticus now, when he's not under the lights.





This is me, as a baby. I do think my Atticus looks like I did.





And here is Damien, on his first night.





And this is Damien now, not wanting to eat.

A brief summary of where things stand

My boys are 6 days old.

(And by the way, I started on Zoloft a few days ago. With everything that's going on, I decided not to risk PPD on top of it. My OB agreed, so we're trying to be proactive about this. I still cry an awful lot though.)

My Atticus has a cleft palate. Just his soft palate, but I'm incredibly ignorant about this and staying away from Dr. Google. We met with a specialist today, and the news was mainly good. But he also pointed out that my boy has "slightly" low ears and "slightly" wide-set eyes and a "somewhat" undersized lower jaw. So he'll probably need ear tubes (not uncommon with cleft palate children, apparently) and might have eye problems and will likely have feeding problems. My mother swears up and down, though, that Atticus has the same eyes and nose that I had. I think she's right--my early baby pictures seem to confirm this. So hopefully, it's just his palate and possibly his jaw.

They have special bottles and nipples for cleft palate babies, but even so, my Atticus struggles.

Then again, he is a tiny little guy, now 3 lb 7 oz. He required intubation at birth, didn't have a gag reflex, and couldn't swallow. He's since developed a gag reflex, but it's not as strong as they'd like. And he can swallow but can't actually nipple feed (can't suck, swallow, breathe at ALL), so all his feeds are OG. They're mainly comfort feeds right now, as he's on TPN. And he's under the lights and HATES them. It's so hard to see him upset. He likely has a very long stay ahead of him, even though he makes progress every day. (For example, today they turned his Vapotherm down to 3 L, and 21%!)

His little brother, my Damien, is struggling with feeds and has recently started vomiting. And yes, we're supplementing with formula--my milk only really came in yesterday and I only get enough for *one* baby per pumping session, and I have no intention of having either of my boys go hungry. Anyway, at his last feed, we decided to switch to a lactose-free formula and for me to cut out all dairy as he even gets fussy when fed straight breast milk. I was very, very allergic to milk as an infant and child, and feel bad that it didn't ever occur to me to mention this. Once Damien is eating, we can take him home. He got his IV out yesterday, can maintain his body temp, and isn't on oxygen (although he does de-sat a bit when he cries).

And I asked for and received permission to bring Damien back into the Level III room (where Atticus still is; Damien was only in that room for one day) to take some pictures of them together. It has made me sad to not have any, and soon we will.

Sunday, February 5, 2012

My brave Damien

My Damien unfortunately got my veins. I wasn't with him (I'll post things chronologically one of these days, from birth to home), but they tried to insert his IV in four different places--his umbilical cord, each hand, and finally his scalp. And then, 2 days later, his scalp IV blew, and they had to find another spot, and again it was on his head. It tugged and pulled and made dressing and undressing him a nightmare, moving him difficult, and holding him challenging as you had to hold the IV tubing or it would pull.

And guess who got his IV out tonight?! My Damien! No more TPN for him! Only a few more diapers to weigh.

Rock on, my youngest. You'll be home soon.

Saturday, February 4, 2012

My fighter Atticus

On the first day of his life, my Atticus was given surfactant and intubated. He could not breathe.

On day two, they extubated him, but he was fighting so hard to breathe that they came within minutes of re-intubating him again. But he prevailed. They then became concerned because he failed to protect his airway.

On day three, he still had no gag reflex. He was given 24 hours to develop one, or else he would be sent to a different hospital. The best hospital in the area, but we couldn't transfer Damien, so it looked like a heartbreaker. But then my firstborn gagged.

On day four, he continued to gag but failed to swallow. Repeat attempts frustrated him, caused him to de-sat (although he never aspirataed the water). We remained hopeful but decided to begin feedings through his OG tube, primarily for comfort. (He relies on TPN for nutrition.) And then, almost to the exact minute of his birth, my Atticus swallowed.

Water, water, water. Then my milk. He digested all 3 mLs--no residuals whatsoever. So he got a second small taste.

My little man, my brave sweetheart. He is determined to master something every day.

His little brother is also doing well. I will gush about him later. These two. My heart lives outside of my body now.

4 days old

Atticus Lawrence, born 17:30, January 31st, 2012, 17.25 inches, 3 pounds 12 ounces.

Damien Elliot, born 17:31, January 31st, 2012, 19.5 inches, 6 pounds 2 ounces.

Both boys are in the NICU. Damien is doing very well--he now maintains his own body temperature, has no oxygen support, and has gained back most of what he lost. He has trouble feeding and receives both NG support and some TPN through a very sad IV in his head. We have several goals to meet before he can come home, but it will likely be sooner rather than later.

Today I came home. Today I got to hold my Atticus for the very first time.

Atticus is making improvements every day. He has a cleft palate, and perhaps some other issues. It took him until yesterday to develope a gag reflex, but the fact that he did is very encouraging. If he hadn't, they would have transfered him to Primary Children's, and I would have had babies in two different hospitals. He has a consult with a cranio-facial specialist on Monday. He needed surfactant treatment and was intubated at birth, but is now on nothing more than a Vapotherm nasal cannula, with the likelihood of moving to just a nasal canula in the near future. He got his art line out today, which is why I was finally able to hold him. He de-sats when he gets upset, and he can't swallow yet, and is the itsiest big brother ever.

I love my boys with all of my heart, and leaving them today is one of the hardest things I have ever done. I am visiting them soon.

I have more to say, obviously, but I am exhausted. Thank you for your well-wishes and support.

Tuesday, January 31, 2012

35w2d: Birthdays!!!

Atticus hasn't grown in 10 days, and his dopplers have increased. Looks like his placenta did its best and now it's time to rely on external support.

In other words, I've got a C-section in just over 3 hours.

Time to meet my boys!

Monday, January 30, 2012

35w1d: I pee a lot

I just wanted to share with you all that I more than filled my little urine jug. I know, these are the details that keep you reading.

I just got back from the doctor. My BP was actually down to 125/78 this morning. Protein on the dip strip still +1, waiting for results on the 24-hour catch, but she's thinking I'm probably not pre-e so much as...very pregnant with twins. I did gain another pound (since Friday!!) and am increasingly swollen.

Also bumping NSTs up to twice a week. My OB told me she doesn't want me going much past 36 weeks. We set a tentative date for Feb 10th (induction or section, depending on positions, but sadly likely a c-section), which puts me at 36w5d. Of course, depending on lab results, NSTs, and serial BPs, that could be moving, but I'm really hoping to make it!!

I'm trying to be as strict with my bed-rest as possible, since it seems to have made a difference. It's hard, though. But I want to keep my boys properly perfused and inside so they can get nice and fat.

Sunday, January 29, 2012

35w0d: Indoctrination

My husband is, for the most part, not an asshole about being a Pats fan. He's loved them through thick and thin, and apparently they've had some awful decades in there. I don't know, since I'd never really heard of them until we began dating.

(I mean, seriously, American football? It's so weird. Rules about who is even allowed to catch the ball? Rules about who can throw and who can throw backwards? The quarters--and the entire game--don't even end when the clock goes out! And they hardly ever do anything in the whole 3 hours, which explains why I, as an 8-month pregnant woman, could easily dress as a center or one of those other big guys for Halloween and no one would be like, "You can't play with that big belly!")

I myself am not an asshole when it comes to being a Jazz fan. We haven't been truly awful in my life time, but we have had some less than impressive seasons, and tons of bi-polar seasons like the one we're currently undergoing, which is probably why I have higher blood pressure now than I did 3 weeks ago.

When we first began discussing baby names, we both tossed out several team names. (Don't you think Stockton is cute, for a girl? Gronk kind of has a nice ring to it.) We were kidding, of course, since we're not total assholes.

We had a conversation a couple nights ago about whether we will...well...brainwash our children. If they don't particularly enjoy basketball or football, that's one thing. But could we raise little ones who...turn into Laker fans? Get thee behind me! (My husband feels similarly about the Jets.)

Of course, in the long run, supporting a professional sports team isn't a big deal. (Assuming we also raise our children to be sane and to not be assholes.) But come on, there's a reason I support the Jazz, and it's because, well, I'm from Utah. Although my mom isn't into sports at all, my friends had parents who were, and I grew up hearing about them, learning all their names like they were rock stars. We didn't have TV until I was 8, so I'd never even seen a professional game on TV, but I knew all about them from the playground. I was a tom-boy and played "basketball" with the boys at recess. I wanted to be in Junior Jazz (like Little League), but at the time, they didn't allow girls. I mean, if I'd been raised in Denver, I have no doubt I would be a Nuggets fan, you know? That sort of deep, long-abiding love and willingness to say, "It's our year!" over and over and over...when your roster is entirely full of aging players with broken knees or crammed with 19-year-olds who think defense is for non-famous players...that's not entirely rational.

I'm pretty sure our kids will love the Jazz and Pats, at least until they're slightly older and desire to individuate from us or their peers. It's interesting to think about.

And if they decide to cheer for the Lakers, they can't sit next to us. I think that's fair. Consequences are an important thing to grasp, after all.

Friday, January 27, 2012

34w5d: Betamethasone

To be brief:

Babies are fine. My blood pressure was 140/95 with +1 protein. I was also having my usual contractions every 5ish minutes. Fingertip dilated (and then swabbed for GSB and another for possible infection to explain ctxns), sent to L&D for serial BPs, 5 hours of monitoring, and a zillion blood tests.

BP went down to 133/78 on average. Got the shot in the ass despite being technically past the cut-off, as there's new data suggesting that, for babies who don't make it to full-term, it still makes a difference. And it can't hurt.

So I'm back on strict bedrest, doing a 24-hour catch, and expecting my babies sooner rather than later. (My OB guesses within a week, but you never do know.)

The irony is, I've been teasing my husband since like July about how if his team makes the Super Bowl, I will deliver during it, as the ultimate love test.

He's been a Pats fan for over 30 years now.

And I was kidding.