Saturday, August 27, 2011

Too good to be true

Well, just a quick note to say that Norah is back at the hospital's PICU yet again. We just can't seem to get her carbon dioxide levels to stay down. We're quite disheartened by the whole situation, but are really hoping we can finally get this figured out.

In other news, I have to make my own trip to the hospital to have my gallbladder removed on Tuesday. I know... impeccable timing for my own body to decide to act up. We have a rough week ahead of us.

Monday, August 22, 2011

Home Sweet Home

What a surprise! When I got to the hospital this morning, I was told Norah would likely be going home today. I didn't want to get my hopes up, but here we are at home! I'll give everyone a more comprehensive update later, as well as a few pictures from Harper's birthday party. I can't thank you all enough for your continued support!

Thursday, August 18, 2011

Deep Breaths

Just before we were originally released from the hospital, it was found at the last minute that the carbon dioxide levels in Norah's blood were high. They had asked us to follow-up with a re-check during the next week. The results weren't good. A normal level would have been between 40-55. A critical high level would have been 69.9. Norah's draw on Tuesday showed 84.2. Yikes. After many phone calls, we were told to make an appointment with Pediatric Pulmonary Care at Primary Children's Hospital in Salt Lake. We were fortunately squeezed in for an appointment, but the evening didn't go as we expected. They retested her and she was still obscenely high. They wanted to admit her as quickly as possible, so they sent us through the emergency room so she could be placed on CPAP right away. It was difficult for Jeff and I to yet again see the frenzy of people working on her, but it was also reassuring that she was so well cared for.

Norah is continuing to respond well to the CPAP (Continuous Positive Airway Pressure). The equipment basically pushes/forces air into her lungs through her nose. Based on a chest xray that didn't look so great, they saw that she was suffering from atelectasis, or a partially collapsed lung. There could be quite a few reasons that this could have happened, though they're not completely sure what that reason may be. However, we suspect it was from possibly aspirating either her (super thick) oral secretions or milk into her lungs. One of the nurses said that it was indeed possible to have "micro-aspirations" that could eventually lead to atelectasis. The good news is that after being on the CPAP for just a short while, her CO2 had already gone down within the normal range, at 50. What a relief.

Jeff and I went home last night, knowing that she was not only totally comfortable, but also looked better than she ever has. She was the most blissful shade of pink. I spent this afternoon with her, and Jeff is now there for a couple hours. It absolutely breaks my heart not to be with her all the time, but we're trying hard to find a balance between being at her bedside and being present for Harper, who also really needs us right now. Though in some ways the variety in caregivers has been good for him, he's had a difficult time adjusting to all the changes around him. Not to mention that Saturday is his third birthday, and we want to make sure it's extra special for him during this difficult time for all of us. I'm bummed that Norah won't be there, but it's probably for the best considering we'll have lots of outside germs coming into the house in the form of our beloved party-going family members. :)

So yes, it is expected that our sweet girl will be in the hospital for several weeks at minimum. They're doing quite a few tests (including an ECHO today) to rule out any possible contributing factors to the challenges that her body is giving her. They'll slowly wean her from the CPAP but most likely when she eventually goes home, it will be on high-flow oxygen instead of the low-flow that she was originally sent home on. Though I already dearly miss the team of care at U of U, I can see that she's in amazing hands at Primary Children's Hospital. One of the respiratory therapists stayed past his shift last night just to stand in her cheering section as we waited for an updated blood gas result. He also stopped by this afternoon to say hello and see how she was. She sure knows how to capture the hearts of everyone she meets.

I'll let you all know how she progresses. Again, thanks for sending your love and kind words... they means so much to us.

Wednesday, August 17, 2011

Back in the hospital

Just a quick update... After a week at home, Norah is back in the hospital. She was admitted to the Pediatric ICU tonight after some "critical high" lab results. More updates to come, but she's on CPAP again & doing better. We're not sure what lies ahead, but hopefully it involves getting well enough to come home sooner than later. Thanks for keeping us in your thoughts.

Tuesday, August 16, 2011

There's No Place Like Home

Norah was finally allowed to click her teeny little heels together three times. We were discharged from the hospital this past Wednesday, having stayed there for two weeks. The blur of newborn-induced time distortion makes it feel like just a few days though we've been home for almost a week. We're all adjusting well to life at home, and I am so relieved. The best part about being at home isn't sleeping (or not sleeping) in my own bed. It isn't taking showers in my own bathroom instead of a public bathroom. It isn't access to real food and a real kitchen. My favorite thing about being at home is being back with Harper. I missed him so much that I thought my heart would explode.

Speaking of parental emotional heart explosions... Remember when I said that no parent should have to see their child turn blue? Well we had another scary episode on Sunday. We were attempting a bottle feed (Norah takes most of her nutrition through an NG tube due to her soft cleft palate, but we're working to get her to take her milk through a special bottle) when some of the milk travelled up her cleft and through her nose. We had to quickly suction it all out with the bulb syringe, but she turned very blue, and for a few moments I felt quite helpless & ready to call 911. Not only were we alarmed by her color, but the expression on her face was equally frightening. Fortunately we were able to get her back. Yes, parents are in charge of loving and protecting their children. But life saving wasn't something I had necessarily anticipated when going into parenthood. The only downside of being home is missing the security of nurses and doctors there to help us during this sort of episode.

Though we're out of the hospital, we've now entered the phase of never-ending doctor appointments. We had our first visit with Norah's primary care doc, which went well. She's thankfully gaining weight, which can sometimes be a concern when babies have clefts. The appointments don't stop there. Not only do we still have to run around for more tests, but we also have a pile of specialists that all want to see us: Pediatric Pulmonary Care, Ear Nose Throat specialists, and Pediatric Genetics. We also have home health care coming with oxygen and feeding supplies as well as recurring visits from their nurse. We also are going to meet with someone from the local "Early Intervention Program" which can help babies/children with developmental challenges. What can I say... not even three weeks old and Miss Norah is already a popular girl with quite the social schedule.

Wednesday, August 3, 2011

Amazing Momma

Jeff here. Shauna has updated everyone on Norah, so I'd like to update you on something else, the pure awesomeness that is Mama Shauna.

I'll let her decide on whether or not to fill you in on the birthing details, but let me just say, it was pretty intense in there! I like to believe I'm man enough to admit there were tears (of joy, and nervousness) being shed. If onions & hot sauce can bring someone to tears, I'm sure that the birth of ones baby can be freely admitted as well.

Shauna has been staying at the hospital for over a week now, to comfort and take care of our beautiful daughter while she gets well enough to come home. After Shauna was discharged, they moved her to what  is called the 'Twilight room.' No visits from any Cullens here, this room is about the size of a small closet & was designed to let Mothers who have been discharged, stay close to their babies that haven't, free of charge. It's got a tv, a bed, and not much else. But it's great that the hospital offers this as an option & we are all very grateful it exists.

Shauna's schedule right now is pretty intense too. Approximately every 3 hours she needs to pump, and then visit Norah for about an 1 to 1/2 hours for some 1 on 1 time and to work on getting Norah to breastfeed. This leaves her about an hour to sleep or eat, usually not both! Just the thought of getting that little sleep has me daydreaming of Ambien. It's a pretty rough schedule, especially for someone who has just given birth & is still recovering from the pain and lack of sleep that come with it, but she hasn't missed a beat, as much as I know she'd like to just lay down and sleep in sometimes :)

I'm really quite amazed that so soon after giving birth, she has been able to completely ignore her own bodies requests for sleep & recovery, and completely devote herself to the wellbeing of our newborn. Especially given the emotional circumstances.  She'd never complain, and I know that there is nowhere she'd rather be than right by Norah's side, but Harper & me could sure do miss her and can't wait until Norah is well enough so they can both come home. As much as Harper likes & continues to ask for Grilled Cheese every night, I know he'd prefer Shauna's cooking!

Thanks for being so amazing baby!

The Good Stuff

Enough with the medical stuff. What about all the good stuff? Believe me, there's much to tell, so here are a few tidbits:

-She's so observant. Her eyes follow people as they talk and move near her.
-She's super calm. She's usually quite content and peaceful.
-She has the sweetest face with rosebud lips and long fine eyelashes.
-She uses her entire face to express opinions and emotions. Just wait until you meet her... you'll see what I mean.
-Despite the problems her small body cause, it's the cutest petite little body with the most adorable tiny hands and feet. Her feet are even smaller than those of her preemie neighbors.
-When she smiles in her sleep (which is often), her whole face lights up.
-When her oxygen levels dip, she's most calmed by her mama's voice and touch.
-She's especially cozy in her daddy's arms.
-She's stolen the hearts of the medical staff. They all love her name, her sweet face, and her peaceful nature.

Our little girl is amazing, strong, brave, and has already been through so much. She's pretty dang incredible, and I look forward to everyone getting to meet her when the time is right. As for now? It's time for this mama to take a much needed nap.

Get Well Checklist

You may be wondering what the scoop is on little Miss Norah. She's doing well overall, and hasn't had any more episodes of needing rescue oxygen. Hopefully those two incidents were isolated & won't happen again. The pediatricians have four basic goals for her, though not all of them are necessarily keeping us in the hospital:

-gain weight
-wean oxygen needs
-establish breastfeeding (this has been a challenge because of her respiratory issues)
-maintain body temperature without help of isolette/incubator

When the time comes, she'll likely come home on low-flow oxygen as well as the feeding tube in her nose. Of course this makes me a tad nervous, but I'm sure we'll get used to managing and caring for the o2 and NG feeding tube. Hopefully we'll know more soon about a goal timeline for her coming home. Jeff and I are both aching to get her home and be together as a family of four. Harper is yearning for some normalcy too. Man I miss my little buddy.

I'd like to send a huge thank you to our family for helping care for Harper during this tough time. Not only have you helped watch Harper, but you've helped Jeff have more time with Norah as well as with me. I would be a wreck if it weren't for Jeff's visits. I sure am fortunate to have a husband and partner seemingly designed just for me.

Tuesday, August 2, 2011

Happy birthday Norah!

Norah Ayala Caroline came into this world just about a week ago. It's been a whirlwind of activity and I'm really wishing things would show some sign that they were normalizing soon.

Due to respiratory distress, she was placed in the NICU Wednesday morning right after being born. No parent should ever have to see their child turn so blue (which I've now had to go through two additional times just this last day or so). I didn't get to see her until later that day, and held her for the first time the following day.

I was discharged at about the same time she was moved from the NICU to an intermediate nursery. The hospital has been great, letting me stay in a "twilight room", which is a very basic room for families to stay in when mamas are discharged before babies. I do however have the added stress of not knowing from day to day if I have the room for another night. They base it off of need, which I think is great but difficult nonetheless.

So here I remain to help our precious baby girl get well. It hasn't been easy, and the postpartum hormones aren't helping my emotional stability. I've been feeling weepy, and miss Jeff and Harper with painful intensity.

I have more to say, but am far too sleepy to continue writing. Please send Norah all of your good get-well vibes, as she sure could use them. I'll try to post again soon with an update  in her progress.
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