Blur

So, on Thursday when we were transferred to the CCU, or step down unit, the resident who first saw Hope indicated that she "probably wouldn't be discharged tomorrow", which at the time was Friday. As indicated in "Coincidence?", Mon had slept over Thursday night and I had packed my stuff to spend the night Friday. I had just finished posting "Coincidence" when Monica came into the family lounge announcing, "We're going home!" The rest of the day was blur of activity and emotion. There were discharge instructions to be given, paperwork to be completed, prescriptions to be written. There was even a car seat test to insure that Hope's vital signs stayed stable in the car seat for a time equal to the length of our drive home. We were excited, nervous, hopeful, scared.

When we arrived at home, Shane and Liv were ecstatic. Giddy, even. Olivia couldn't stop giggling with Hope on her lap, and Shane just beamed.They were so gentle and loving, taking turns holding their new little sister. They even let Nonna have a chance.

Friday night was tough. Apparently, this is not atypical. A family friend who works with a pediactric cardiologist in California predicted this is an email to my Mom:

Tonight will be rough, I imagine. Hope is used to constant attention and the reality is she's not the only one in the house!!!

Hope was up crying every hour or more wanting to be fed or held or rocked. And, of course, I get pretty freaked out every time she cries hard -- and she does cry hard when she wants to eat. When hooked up to all the monitors in the hospital, you could watch Hope's heart rate and blood pressure skyrocket when she'd get agitated. Whenever she does this I worry about the stitches in her arteries. I wonder if that'll ever stop.

Saturday night was slightly better with some visits to her being slightly more than two hours apart. We'll get there!

Thanks to everyone who prayed for Hope, held Hope in the light, and/or thought positive thoughts for Hope! I firmly believe in the power of prayer and positive thoughts. Hope will continue to be closely monitored by a cardiologist and her pediatricians. She's not necessarily out of the woods, but certainly well on her way. Updates to the blog will likely not be as frequent, but feel free to check back (or use an RSS reader) to follow Hope's development. I might even sneak some Shane and Liv content in here, although this process has encouraged me to consider resuming my other blog.

Check out the new photo albums in the right nav!

Home!

We are home. And its good.

3/30 Update: Coincidence?

After we left yesterday afternoon to be able to enjoy dinner with the rest of the family, the staff did challenge Hope by removing her oxygen. She's doing really well. Sats are holding stable in low to mid 90's. Again, not quite 100%, but some kids here never get out of the 60's with full flow O2. Her sats stayed stable through the night. What a joy it was for me to see her this morning with NOTHING on her face.

One of the 'perks' of being in the CCU instead of the CICU is that one parent can stay overnight by the bedside. There is a little daybed where one can try to sleep. Mon took the first shift last night. When I arrived this morning, she looked exhausted, saying, "What a wake-up call to remind us what it will be like when we get home." Hope was up wanting to feed every 1-1/2 -- 2 hours. While it's been hard to not be with Hope during the overnights, we've gotten really spoiled by the round the clock care she's been getting.

In the CCU, we're in a two-bed room. The mother of the little boy with whom we're sharing the room approached us yesterday to let us know that she also was a TGA baby. She wanted to reassure us that kids with this defect have pretty normal lives, including having children of their own, and that she was living proof. She was also quick to point out the fact that her second son has Hypoplastic Left Heart is completely coincidental -- her first son is totally healthy. We've heard of moms with TGA having successful pregnancies, but to actually meet someone is very reassuring. Sometimes I wonder if these encounters are more than coincidence...

3/29 Update: We've Moved!

Hope has been transferred from the CICU to the CCU, or Cardiac Care Unit, because she no longer requires as much constant monitoring from the staff. At this point, the issues that are keeping her from coming home are the fact that she is still requiring a bit of O2 to maintain high oxygen saturation levels (or sats) and the maybe-infected status of her incision. She began Keflex (an antibiotic) yesterday as a precaution and the site looks much, much better today. Perhaps they will keep her until she finishes her course of that antibiotic. On the O2 sats front, Mon actually was given the go-ahead to attempt nursing this afternoon -- another happy milestone, which went really, really well. Well for any baby, let alone a 'cardiac kid'. But, during that initial attempt, the nasal cannula kept getting in the way, so we just kind of put it on her head like a pair of sunglasses when they're not in use, and her sats stayed pretty much in the mid-90's. Not the 99-100 range that she can maintain on her current 1/4L O2, but much improved. The nurse was going to challenge her on room air after we left to eat with Nonna, Shane and Liv.

3/28 Update: Delay

One of the CT surgeons just looked at Hope's incision, and has prescribed an antibiotic just to be safe. However, this kind of knocks her out of the "infection free" status that she needs to maintain for discharge. Maybe I jinxed it after all. I see us being here through the weekend. Still, we remind ourselves to keep perspective; others have been and will be here much longer, and still may not have a good outcome. The following is an excerpt from an email I sent to one of my good high school friends:

"Although this has been a major ordeal for us and for Hope, we feel so totally blessed. We have met so many families here whose diagnosis is so much more dire. Typically, Hope's defect is very repairable with only the one surgery. Many of the defects that others are dealing with require three surgeries over two years. More tragically, one of the families that we became friendly with here actually lost their son after almost a month on bypass. So, while I never thought I'd say this when we first got this diagnosis, we really do feel very lucky. "

Also, we feel so fortunate to have the support, thoughts and prayers of so many great friends and family members. Thanks!

3/28 Update

Hope did great overnight, taking all feedings PO (Per Os; Latin for "by mouth") and showing considerable clearing in the right lung on x-ray. She was on 1/4 liter O2 overnight and just before I got kicked out for rounds they had started to challenge her a bit by turning off the O2 and removing the nasal canula. Her O2 saturations were holding steady around 92% off the O2, where they had been 100% on the O2. But 92 ain't bad. The NG tube should come out later today. Her incision looks a bit red today, but her blood work should tell us if her body is starting to mount a defense against an infection or if its just irritated from getting rubbed by her gown and blankets.

I don't want to jinx anything, but -- well, I just don't want to jinx it. You can probably connect the dots and figure out where I might have been going. Hopefully, we'll see you soon!

3/27 Update: A Day of Firsts

Yesterday was a day of firsts.
First bottle: (click on image for more pics)














First bath from Mom:
















P.T. (physical therapy) feels so good:

















Hope is doing great. As indicated above, Hope had her first bottle yesterday. They are introducing feeding by mouth slowly to protect her airway and lungs especially since she's had a bit of a history of respiratory distress and the continuing 'haziness' in her chest x-rays. Additionally, the coordination and effort required for feeding for a 'cardiac kid' was likened to you or me running a marathon. Perhaps a bit of exaggeration, but you get the idea. Also, Mon got to give her a bath for the first time. Hope did NOT care for it. But it seemed so right.

Right upper lobe in lung is still a bit collapsed, so they'll continue beating on it with P.T. She really likes it. She's down to 1/2 liter of O2, and she will work with the speech therapist again today on the feeding. Mon and I have a CPR class today which hopefully signals the start of a getting ready to go home process.

Thanks for checking in!

3/26 Update: Growth

Hope is doing great. She's basically off her meds. No fentanyl. No milrinone. A little zantac for reflux once in a while. She's getting supplement oxygen at 1/8L per hour. Breast milk at 22ml/hour still through her NG (nasogastric) tube. Apparently some of the alveoli in her lungs are clogging up and/or collapsing. To remedy this, they are giving her "physical therapy". They have this funny looking bell shaped implement that they use to tap on her back. Next, they will start doing it with a pneumatic instrument. We've seen them do this on another kid, and it seems and sounds ridiculously rough. But this other boy seems to enjoy it.

Last night, we went home and were able to eat dinner with Shane and Liv. We were able to go out for a short walk (thanks Mom for taking care of dinner), eat dinner, and do bedtime routines. They seemed so much older and more grown up. I'm sure some of it is relative, but I can't help but think that this process has helped them strengthen and grow. So, while it was awesome to kind of reconnect with our older children, we had this gnawing sense of guilt for having been away from Hope for so long. It was the first time that we had missed an entire 12-hour nursing shift. It has become a delicate balancing act.

3/25 Update: Food at last!

This morning they have resumed Hope's feeding through the NG tube. It will be slow going again -- they like to play it safe, which I totally appreciate and understand. They are starting her at 5ml/hour of milk and will gradually ramp back up to 22ml/hour. So, unfortunately, she likely won't feel any hunger satisfaction until later this afternoon. She has a hematoma or two beneath her incision that is/are trying to work their way out. Not a big deal, just something to watch.

I got kicked out of the pod while the docs do rounds -- HIPAA reasons -- Mon is next to me in one of the hospital lounges talking on the phone to Shane and Liv who are with our great friends Jason and Michelle. (Huge thanks!) Liv got on the phone and declared, "I love you, and I love Hope!"

We've been feeling a bit guilty about the separation from the older kids -- all week with Nonna, this weekend with friends. We spoke with the kids on the phone after Nonna and Michelle had passed the baton. Monica said to Shane, "You know I love you, right?" Shane responded, "Why wouldn't I know that?" And the guilt meter dropped a bit.

3/24 Update 2 -- What a Great Day!

What a great day! (knock on wood) Hope was extubated around Noon, and tolerated it very well. However, because of her previous respiratory distress and a morning chest X-ray that was a little cloudy, the attending doctor did want to resume feeding until she "proved herself". Only thing is, now she knows what a full belly feels like, and will have to go without food in her stomach for 24 hours. She had started on 5ml/hour of breast milk through the NG tube yesterday, and as she tolerated it, they gradually ramped her up to 22ml/hour. However, they had to stop around 4AM this morning to ensure an empty stomach in case they had to re-intubate after extubating.

The best, though, was when I walked into the room and Monica was cradling Hope in the bed. After she got her fair share, I got a turn to sort of hold her as well. Shortly thereafter we were able to hold her for real. No time limits. No rushing off to surgery. Just quality bonding with this little girl who's been through so much already in her short 4 days on earth. It was awesome and definitely lifted our spirits.

Even though Hope couldn't eat she was basically really easy. She kept showing off her suck/swallow/breathe coordination like a world champ. I was dying for the attending to stop by so Hope could make her own case for feeding. Her little cry was hoarse and raspy from having the breathing tube down her throat. At one point, she did get herself worked up enough that her incision began to bleed. The nurse asked one of the cardiologists to do an echo just to be sure that the bleeding was not something more serious that a little trauma to the incision. The doctor did not seem to think that the bleeding was a result of a larger issue.

Hope had a wonderful time with and would like to thank all of her visitors today! Thanks!

[Click here or on photo above for more pics]