Surgery

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

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.

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.

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.

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.

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.

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.

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.