Sunday, August 17, 2008

Moving day

Thank you a million times for your wonderful comments. I have read every single one, and am planning on reading them at least a few more times. They have been great support as we are learning from experience that things in NICU can be unpredictable.

In the Old Country there is a saying that roughly translates to "do not yell hurrah until you land the jump." It occurs to me now that in declaring that we had nothing to worry about health-wise I had violated that very wise injunction. It's all much-much better now. But yesterday was scary. Well, half of yesterday was scary.

On Friday we were so thrilled with his progress off CPAP that we sort of put the question of the other thing he was being treated for-- increased level of white blood cells, indicating a possible infection-- on the back burner. Partially because he was getting antibiotics already, and partially because that whole breathing difficulty thing seemed a little more pressing and serious. And when they called me in the middle of the night to say that he was alert, seemed hungry, and could try breastfeeding, and we went down, and lo, he breastfed, well, that just didn't seem like a sick baby, you know?

Yesterday morning he ate again, and was alert, if a bit pissy. The kid's got a set of pipes on him, let me tell you. So there we were, getting contact high from him doing so well when they tell us that his CBC was a lot worse, and they would like to do a lumbar puncture to see whether the infection they presume he has has gotten into the cerebral spinal fluid. Right, then.

I asked about how they manage to ensure that babies don't move during the procedure, and the answer was in various ways, including, if they absolutely have to, and in very small doses, morphine. We couldn't be in the room while they did it, and when they called us about how it went the story was that they got enough for the main tests they wanted to run, but not for the quick look-sees, and that they did end up having to give him the morphine.

The scary part(s) came after we got back to see him. For one, he wasn't interested in waking up or eating. At all. For another, a bit later he started having episodes of bradycardia (significantly slowed heart rate) and real, honest to goodness apnea. Neither of these things is good. Both can indicate infection. Or they could both indicate that he was waaay tired from an active morning and resisting the procedure (apparently he put up a rather serious fuss) and/or that he was having a reaction to morphine.

So the evening featured JD quietly freaking out in the chair as I tried very hard to remain analytical as I had a conversation with the pediatrician that felt like an episode of House, only much less cool, seeing as it was my kid we were talking about. The maddening thing is that none of the cultures are growing anything. In the land of microorganisms, as, I hear, is the case in any warfare, knowing your enemy is very important. If we knew what this infection was or where, we could tailor the treatment. As is, he is getting the antibiotics cocktail that covers the most common sources of infection in newborns, and we hope that it does its thing.

At one point I asked the pediatrician whether this thing could get away from us. Not the easiest question to ask, and perhaps worse to answer. She said that she can never say no, because she can never say that to anyone (appreciate the honesty, I do), but that we are doing everything appropriate to the situation. We went over the tricks still up their sleeves, and the situations in which it makes sense to go to those. In the end I had to agree that there was nothing to do but wait out the night and see what the morning tests showed.

Waiting out the night got a lot easier when he woke up with his late evening diaper change. Not turn on the disco it's party time woke up, but enough to indicate that he was hungry, and to go to town on both breasts plus two syringes of previously pumped colostrum. Good stuff, that.

Still, I could see both the doctor and the nurse were still worried. So it was nice to see them smiling as they greeted us at 5am this morning-- white cell count was down slightly from yesterday, and the differential was much better. Meaning we seemed to have caught up with whatever this thing is, wherever it is hiding. And there hadn't been any apneas through the night. The only snag was that his bilirubin levels went up sharply (thought the absolute value was still a non-threatening 10), and so he bought himself some time under the lights.

Today, as I said, has been much-much better overall. He spent a good deal of time sleeping contentedly in his isolette-cum-tanning booth, but he woke up for all the feedings and he ate with determination and appreciation. Every lactation consultant's wet (diaper) dream. His color is improving, so we may be done with the lights as early as tomorrow. Antibiotics are staying for seven days altogether, and, consequently, so are we. We are, again, waiting for morning test numbers, thought with a lot less trepidation than last night.


Nominally I was discharged from the hospital today. In reality, I moved down three floors. I am bunking with my son, in his NICU room. Because it's huge and has a couch that is meant for parents. I have never seen such a thing, nor heard of it before. A NICU where all rooms are private, large, and designed so that it is possible for a parent to be with the baby all the time. And the visiting hours here are 24/7. A pump can also be rolled right into the room, and my attachments for it stay here, right next to the sink that is next to the couch on which I am about to fall asleep for the night.

With this level of care for the whole family built into our experience here, I can't help but think of all of my internet friends who have had no more than a curtain for privacy when sitting by their baby's isolette, who have had to make the drive, back and forth, a couple of times a day, who were limited to a small set of visiting hours. I know this is an expensive set up they have here, and I know not everyone is fortunate enough to have a dedicated donor family like the one that made this facility possible with their gift and now has a fancy plaque out in the lounge to show for it, but damn if not everybody should.

Three weeks ago, when I was in the hospital for PTL, I told JD that if the baby came then (which meant he would be in NICU for at least a week), there would be two hard things. One, when they would take the baby from the room and we would be left there by ourselves, again. Two, when we would have to get into a car and go home without our baby, again.

When the first of these came to pass in the early hours of Friday morning, I think it helped that we were still disoriented from the avalanche labor. Today would've been the day for the second. Instead, thanks to this NICU, I was spared the need to find out how I would handle it. It was rather enough, I believe, to have triggered physical memories of last year with a simple trip to the bathroom, thank you very much.

Only one parent can really room in here, though it doesn't have to be the same one all the time (and both can stay all day), so JD went home. He called me to say that he was uneasy not being with us, and he stopped by again later. But I think me not having to go too cut down on the deja vu factor for him. It's amazing how much a little chunk of well thought out real estate can do for people.



P.S. I am still working on a blog nickname for the new arrival, so a post with proper introductions is to follow.

41 comments:

Amelie said...

Scary indeed. I'm sorry. Wishing you a safe landing for this big jump!
I'm glad the NICU let's you stay close to your baby. And that he's doing better.

thrice said...

NICUs have come a long way. My twins spent 25 days in the NICU, and while I remember being horribly scared (even though I didn't have to deal with an undetermined infection) while running back and forth from home, where Ace, then 3.5, needed his own caring, it is 4 years later a distant, foggy memory.

Without too much drama, I hope that you are able to bring your son home soon. JR, Monkey and you have earned that. It's your turn. ;-)

k@lakly said...

Oy vey, it's just never easy is it? I hope the little guy gets that bug out of him pronto and the 4 of you are home, tucked in safe and sound just as soon as possible.
Thinking of you and sending lots of love and hugs.
xxoo

Bon said...

scary, Julia. poor little, and poor you. i hope the news this morning continues to be really positive.

and the NICU? sounds amazing. i'm so glad.

lots of love.

Caro said...

Scary. Glad that things are looking better and it's great that you can stay with him.

Beruriah said...

Oh, Julia, this is so so scary. I really hope he has turned the corner with this infection. Poor JD, even though it's so different, it hurts like hell to leave the hospital without your baby at all. How is Monkey handling it all?

Much love and many hugs and kisses to you all.

Tash said...

Yikes. I'm hoping for a homecoming, soon. Really soon. Fight whatever it is, wee one! (Don't some bacterial things take a week to show up in the dish? That's what they told me . . .)

Hang in there mama. NICU sounds completely, utterly, amazing. And I had two of the best. Best I got was a terrible fold out chair and a separate bed elsewhere the thickness of a ritz cracker.

CLC said...

How frightening. I am glad things seem to be turning around. I am glad you are able to stay though! What an amazing NICU.

Rosepetal said...

How scary for you all. I am so glad he is doing better and what a relief for you that you can stay with him, for both of you and JD. I am in awe that you're posting at all - how are YOU doing after the birth?

kate said...

This is very scary...i am so glad he is doing better. He seems to be in very good hands with these doctors.
I am so glad you can stay in the same room with him. We are thinking of you!

christyna said...

oh girl I jumped up and down and jigged too soon. how very scary. why can nothing at all be simple and easy for you? my word. I am SO glad you get to stay with him and so glad he's doing better. much love and prayers sent your way....and I bet he has a set of lungs, an Aug 15th Leo baby...get used to it, mine are still one "hell" of a set 31 years later. wink wink :)

c. said...

Wow, Julia. I am so sorry about what you and baby have had to endure the past day or so. How completely scary. Glad to hear he's getting better. I hope he's able to fight off whatever it is that's made things so precarious in the first place. Thinking of you, as always, keeping my fingers crossed that baby gets super healthy and discharged soon.

hydrogeek said...

First, congratulations! Second, I hope all numbers continue to improve, and you guys get home with a minimum of drama. I will say a little prayer for God to bless the family that made your rooming in possible.

Magpie said...

Sorry about the scary rollercoaster - but it sounds like he's doing better. Continued good wishes, and I hope you're all home soon.

Mandy said...

I'm sorry that it hasn't been simple, that he's fighting infection but I am so glad he is FIGHTING it and getting better.

And, if he has to be in the NICU for a while before going home, I'm really glad it can be one that allows you to be right there with him.

My son was born with the infection that had been brewing in my cervix/uterus, but we didn't realize it at the time. It was only when we almost lost him at 12 days old that we found it, and by then it was raging. I'm so glad that if this little guy had to fight infection it was found NOW, while they can take care of it quickly and thoroughly.

Prayers and good thoughts for all of you, and nobody will cheer louder than me when you get to go home TOGETHER.

Julie said...

Catching up here to say WELCOME to your beloved boy, and that I'm thinking of you and your family. I wish you didn't have to endure even a second of the NICU experience — may it pass swiftly, uneventfully, and, yes, joyfully as you get to know your sweet new son.

Snickollet said...

Yeesh, the highs! The lows!

I'm glad things are looking up, glad that you have a good setup for a less-than-perfect situation, glad the little man is here and doing better, slowly but surely.

Karen said...

oh, I am so glad you are staying to be with him and help him - and glad the news is looking better by the minute. so glad he is hungry and eating - sleep well - when you can.

Brandy said...

I can't imagine how scary all of that must have been for you but I'm glad you're able to stay with him and that he's doing so well. My thoughts are with you - and CONGRATS!

Phantom Scribbler said...

We are all hoping the little guy beats back the infection and is able to go home from the (fabulous) NICU soon. Kisses to Monkey from my kids.

serenity said...

Oh geez, Julia - I am just catching up on this weekend's events. First of all, congratulations on the first step.

Secondly, I am with thrice here. I am hoping with everything I've got that you can bring your new guy home soon without any drama.

Love and hugs to you. Please don't hesitate to give me a call if I can do anything.

xxx

Beth said...

I held my breath through a lot of that post. So unspeakably glad that things seem to be steadying. And, yes, what a gift to have such a NICU.

When my son was eight weeks old and in the PICU with bacterial meningitis, we had such a set-up. It made all the difference to me, and I'm sure, to him.

{{hugs}} to you all.

Wabi said...

It does sound like a great NICU. After spending several weeks this year in the pediatric hospital with Little A, the idea of PRIVATE ROOMS for the NICU sounds groundbreaking and essential. I'm so glad they are making pumping and bonding a little bit easier for you.

But good facility aside, I'm so sorry about the elevated white count and the apnea! Saying a prayer and keeping my fingers crossed that he continues to make steady progress in the next few days. May you all be homeward bound very soon.

Anne said...

How scary. So excited that things are looking good for your new arrival - and that you're loving your nice NICU digs. Sending you lots of love and good wishes!!

Anne said...

How scary. So excited that things are looking good for your new arrival - and that you're loving your nice NICU digs. Sending you lots of love and good wishes!!

STE said...

Wow. So glad that the little one seems to be responding well and fending off whatever it is that he is fending off. He sounds like quite a little eater, too.

So, so glad for you, and glad that you have the opportunity to just be there with him, without revisiting those memories too closely.

You and your family are in my thoughts, Julia.

STE said...
This comment has been removed by the author.
Aurelia said...

Oh Lord, I love how you write, and yes, I'll bet that the reason for the apnea and the sleepiness was the morphine, it always works that way, although I know there was no way of knowing for sure so of course it's very stressful!

Interesting about the NICU room construction, simply because that kind of building is the cornerstone of Family Centred Maternity Care, and although it costs more up front, it is so beneficial to patients, that it saves money in the long run through decreased infection, better bonding between moms and babies, lower rates of PPD, and faster discharges. (And syringes! with expressed breastmilk!! Am so happy they are being so breastfeeding friendly!!)

Knowing that you are in that kind of facility---that is huge. This sounds like the best possible outcome, even if it's a little bumpy right now. *Smooch*

luna said...

oh julia, how scary that must have been for everyone. I'm so glad it looks like he's on the upswing now. also glad for your NICU accomodations. hoping you are all home together soon.

Catherine said...

It sounds like you all are getting great care. I'm hoping for a REAL moving day (home) very soon. Hang in there mama.

Ange said...

My goodness this is not as plain sailing as I would have liked for you. Sending you lots of good vibes and hope that today brings even better news. So glad you get to be with him all the time.

My Reality said...

I am glad he is improving and happy to hear you don't have to leave him behind at the hospital.
It must be terrifying to have him in the NICU, I hope he only improves from here on and you can bring him home soon.

Thinking of all of you.

xo.

Lisa b said...

wow Julia that NICU sounds amazing. We've got a plaque at ours and promises that soon it will be like the one you are staying in.
I've got all my fingers crossed that everything continues to improve. Seven days seems so long in a NICU, regardless of how nice it is.

dorothy said...

Baby & you, JD, & Monkey continue to be surrounded by LOVE & prayers. Thank you so much for continuing to allow us to keep you in our hearts.

Lollipop Goldstein said...

Oh sweetie, those NICU days are scary indeed. It feels like such a roller coaster where you're fine, fine, fine, and then suddenly dropping and screaming. And then it levels out again.

Your NICU does sound wonderful and thoughtful. Leaving that first time was the hardest night. I locked myself in a single-stall bathroom.

I am sending so many good thoughts for the little one. For some reason, I am calling him Bull in my head, and hearing, in an Old Country voice, someone saying, "he is strong like bull." Though Bull doesn't sound quite so nice even if the sentiment is fitting...

Duchess said...

Oh my! I am crying and telling my co-workers that my friend had her baby. Does it matter that I don't know my friends name? NOT ONE BIT!!!

LOVE YOU!

Miryam (mama o' the matrices) said...

Oh, now that is one plush NICU. Glad, glad, glad to hear it!

I have always appreciated being able to stay with my little ones when they're up at the Big House - and one of the things that I love about the Man is that he's willing to be the one who goes home. Except when he's not, and then I love that he's willing to be the one who sleeps on the floor.

Still, the digs just take the edge off don't they? Every hospital rollercoaster happens faster and more fiercely in the ICU units. Hang in there - and kiss the little person for me.

And hug Monkey!

Little Miss Hopeful said...

Huge congratulations on th arrival of your new little one :)

The NICU sounds amazing, I can imagine it will make this week a lot easier on you. I hope he continues to thrive and can go home with you guys soon.

CappyPrincess said...

I can only imagine the myrad of emotions with the arrival of your son and the subsequent experience of the NICU. Here's hoping for a few less bumps in the road on the way to getting that young man home!

Di said...

Julia, thinking of you and the little one. I'm so sorry you have to go through this before you can bring him home where he belongs.

Lori said...

I am so happy that both Baby and you are getting such wonderful care, but I do hope that little guy comes home very, very soon. I know you must be so anxious to get him back to where he truly belongs!

I continue to hold you in my heart and prayers.

P.S. What about calling him Chimp? :)