I appologize for not updating sooner today, but Holly, Ruby and I all kind of took it easy today. I took at least two naps today in the big comfy chair next to Ruby and Holly had a few as well Needless to say, Ruby did her share fo snoozing today as well. All of this was well-deserved after the big changes yesterday. To recap, we had:
1) Extubated - this means they removed the endotracheal tube through which the ventilator had been blowing into her lungs. She has a high-flow nasal canula now that delivers some oxygen directly into her nostrils, but her own lungs and diaphragm do all the work of moving air in and out now. The concentration of oxygen being given to her has gone up and down a little in the last 24 hours, but she's currently at 45%. They started the airflow through her canula at 2 liters of air per minute but moved her up to 4 liters. She seems to have stabilized at these settings, but she is still a little "tachypneic" -- that is, she breathes rapidly. Her heartrate has been a little elevated as well. The doctors and nurses and respiratory therapists all assured us that this is expected and that as she gets stronger, her breathing will settle back down into the normal range. However, the oxygen saturization has been good and her blood gas tests have been awesome. So even though she's working a little harder, her oxygen and carbon dioxide and whatnot are all in the normal range for a normal baby.
2) Chest tube removed - Her right chest tube was taken out. This one hadn't drained any fluid in about 2 weeks, so it was well past due. I wasn't aware they don't use any sedation for this procedure and it didn't look comfortable at all. Ruby did well, but she's still very hoarse from having had a breathing tube down her throat for the first 6 weeks of her life. So all she could do about it really was croak and whimper a bit. She's still not able to full-on cry yet, but she'll make the face and wave her arms and legs in the air, as if she's pantomiming a crying baby.
3) Moved to a crib - That's right, Ruby graduated to a big girl bed! As our nurse put it, "Ruby's no longer a critically sick baby, so why keep her in a bed for critically sick babies?" The funny thing, though, is that CHOP is standardizing one size crib for all ages up to about age 4. So Ruby's crib, although it's brand new, is big enough for octuplets. The label on it says that the weight limit is 250lbs, so we've been joking about spending the night with her in it. We're very excited about it, though. It means she's no longer on a baby warmer and she is able to wear her own clothes. She's only wearing shirts for now, and only those that button down the front. But in a few days she'll be in proper "onesies" that a baby her age would wear. This also means that she's no longer sleeping on a scale all day, so we have to pick her up and put her on a scale to weigh her. We didn't want to hassle her any more than necessary today, but her last weigh-in was 3105g, w hich is about 6lbs 12oz. This is "real" weight, not water weight like before.
4) Less bad stuff, more good stuff - They've weaned her Morphine down to 160mcg and her versed is 160mcg as well. They've also increased her feedings to 40ml of breastmilk every 3 hours. She's getting less intravenous HAL & Lipids for nutrition now, so once she's at "full" feeds of 50-60ml, they can remove the HAL & lipids and the broviac central line in her chest. She's currently being fed through the yellow nasogastric tube that goes through her nose, down her throat in to her stomach. Holly and I have both learned how to feed her through this and the nurses allow us to do it when we're there -- typically 9am, noon, 3pm, 6pm and 9pm. We also change her diapers most of the time, take her temperature and do other miscelaneous care items for her now. Back in the dark ages, the NICU was very much a place only for babies, doctors and nurses. But CHOP (and others) have seen the importance of involving the parents in the babies care and they are happy to let us do as much as we are willing to try.
Current tube count is 5:
- left chest tube
- broviac central line
- scalp IV
- arm IV (replaced foot IV)
- nasogastric feeding tube
We've added the nasal canula, but it hardly counts since it doesn't prevent us from picking her up or eventually taking her home.
Holly holding Ruby yesterday:
Here's Ruby's new crib. Note how little equipment there is there beside her. No vent, no nitric oxide tanks -- just the IV poles and a few hoses for her oxygen canula.
And here's Ruby trying to figure out what to make of all the changes she's been through in the past 24 hours.:
I'm amazed at how healthy
I'm amazed at how healthy she looks! I had to catch up on your site and am so incredibly educated as I read Ruby's progress. I continue to think of you guys and know that you're well on your way to going home with your beautiful baby!!! ....am so full of hope for you guys and for what my baby's outcome will be too. ...Chanda
Pure joy to look at these
Pure joy to look at these pictures of Baby Ruby. "But you, O LORD, are a shield about me, my glory, and the lifter of my head. I cried aloud to the LORD, and he answered me from his holy hill. I lay down and slept; I woke again, for the LORD sustained me."
What awesome news! Chest
What awesome news!
Chest tubes don't really hurt too bad, just a slight tug at the beginning, then the rest is ok, looks worse than it feels.
Hope you do crawl in bed w/ her, at least for a minute!
Yea Ruby- next time I am in
Yea Ruby- next time I am in Austin I am so meeting this girl!
Holly and Ruby both look
Holly and Ruby both look radiantly happy in the shot where Ruby is in her mother's arms. And with Ruby's current tube-count I'd be joking too, but for the record I have slept in one of those cribs curled around an 8-week-old in hospitals up until his last hospitalization when he was about eighteen months old for something diagnostic and non-urgent (said child was an awfully sickly little bugger in his own way but is now a robust three-year-old, small for his age and with a g-tube but a really smart, active little bugger who talks like my second-grader--I don't want "last hospitalization" to sound bad, it was his last because he hasn't needed hospitalization due to being much better!). I've done it with an IV, and with an NG-tube, but never any drain tubes or central access points--sometimes a mother (and my children's father never chose to, but I'm sure a nice warm Daddy would be soothing to a little baby as well if he and the baby were under the weight-limit, so not discounting a father here if Holly is taking a break and Ruby needs a snuggle) curled around an infant in one of those things seems remarkably soothing and stabilizing; I did it for the first time at the suggestion of a nurse who was paging the baby's doctor to get orders for things to make the baby feel better but couldn't give them until she got the order from a resident and also when for whatever reason the baby couldn't eat or had discomfort. So my kid's surgeon saw me at 6:00 rounding with his entourage saw me braless in maternity pajamas and woke me testing my son's reflexes one time, my dignity, like my youngest son, recovered eventually :)
Love the new crib! and haha
Love the new crib! and haha about testing the 250 pound limit. Tempting, I'm sure. Holly, you look absolutely beautiful in that first picture. Pure joy.
First and foremost,
First and foremost, Congratulations on the birth of Ruby!! We are very happy for you.
Second, your news is so wonderful! We are very happy for you two and Ruby. I know you must be so proud of her to be so strong! It's so good that you all can be with her as much as possible and more exciting for her to feel your touch! Your touch gives her lots of love and confidence to move forward.
Thank God for such good medical science!! Your nurses sound just awesome and your doctor sounds so knowledgeable and reassuring.
Ruby looks much more comfortable too. Less tubes is a wonderful thing!
Keep up the good work, your health, and mental well being.
Lots of love and thoughts and prayers your way!
John, Anneth, John Martin, Sam, and Tommy Winkler
Great news! Great photos!
Great news! Great photos! Great Progress!
love and hugs from Houston,
Marie
Oh! That last photo melts
Oh! That last photo melts me!
Don't worry Ruby: just
Don't worry Ruby: just because you are in a "one size fits all bed"
you are certainly a one of a kind girl....
and cute cute cute!
(just in case someone hasn't told you that in the last ten seconds)
Don't worry Ruby: just
Don't worry Ruby: just because you are in a "one size fits all bed".....
you are certainly a one of a kind girl....
and cute cute cute!
(just in case someone hasn't told you that in the last ten seconds)
Wow, sheer joy on Holly's
Wow, sheer joy on Holly's face. I love it....Ruby is becoming more and more beautiful by the day, and obviously stronger by the day too! I love the new crib!!! More like normal, eh? When Aisling was admitted to the hospital for an undetermined infection in January of 2006, she was in a crib like that. They told us specifically it was made for mom or dad to be able to crawl in and sleep with their baby. I took full advantage of that, all three nights we were there. It made a scary situation better.
Hooray for wonderful progress...love love love it!
Cheering and hugs from the 'Lou-
Tami, Chuck, and Aisling
Wow, awesome news and
Wow, awesome news and pictures!! She no longer has the 'newborn' look but a more mature baby look...and so so beautiful...love to see her little mouth now!! She looks healthy and vibrant!! We are so very happy for you guys!!
Julie Power and family
What great progress! She
What great progress! She looks so cozy in your arms, Holly. I'm sure you are enjoying getting to hold her very much. I'm sure things will keep progressing well and before you know it, you'll be introducing Ruby to Austin! Might be just in time to experience the summer heat.
Congratulations to you all,
Congratulations to you all, we continue to pray for you all, and cheer Ruby on from afar! And what a cutie without that big tube in her mouth...soooooo happy for you and your family! Keep up the good work, Rockstar Ruby!!
Great photo of mommy and
Great photo of mommy and Ruby! And love the photo of Ruby in her new crib! Way to go Ruby!!
Oh, Holly, you look so happy
Oh, Holly, you look so happy in that picture. I'll bet holding Ruby is one of the greatest feelings, ever. :)
What great progress you're all making! And that crib is HUGE!
Congrats, again, little Ruby. You're doing awesome.
Lots of love,
Missy, Larry and Anthony
She looks like she's all
She looks like she's all "What's the big deal? Would you stop making a fuss over all my changes? Pu-LEASE Dad!" I'm so proud of her and you! Her new bed looks so grand! xoxo Sarah
I love that look she is
I love that look she is giving you in that last picture, sort of "what on earth are you doing, daddy?" I am so happy for your three. Slow and steady wins the race. Love and hugs from IA.