Fun in the Basement!

Yesterday was a rainy day, so we had some fun down in the basement. Hope loved this. And no, they're not going as fast as it appears!

Hope is One!

I can hardly believe that Hope is one! In many ways, it seems like just yesterday that she was born, and in many ways, that nerve-wracking, blessing-filled experience down at CHOP and HUP seems like a distant memory. It is amazing to me how much this little child has taught me about gratitude. I am grateful that we are so blessed to live in a time where skilled surgeons can successfully repair there life threatening conditions on such tiny children. I am grateful to have such a caring and nurturing network of friends and family who's prayers, thoughts, and concerns buoyed us through this experience. Thank you all!

Hope continues to be a joy. She is outgoing, and is constantly trying to engage people wherever we encounter them; the grocery store, schoolyard, playground, doctor's office, etc. When people somehow fail to notice her -- which she seems to not be able to fathom either -- she leans in and tries to engage them with her smile and often a friendly "hiya." She is incredibly enamored with dogs and other children, especially babies. Her whole body stiffens and shakes with joy whenever she sees a dog. I am amazed how she has no fear of any dog, regardless of size. Hope also has this remarkable relationship going on with Olivia's pre-school teacher -- who is, herself, a remarkable person. Whenever Hope sees her she practically dives out of my arms to have this woman hold her. Many times, I am asked by others, "Is she always this happy/friendly/easy/etc?" The answer is always a resounding "Yes!" I used to tell people that I thought she knew what's she's been through and that she's just happy to be alive, and while I still believe that to be true on some level, I am also sure that a large part of her ease, contentment, and joie de vivre comes from all the love, caring, and prayers that she has received in this first year of life. Thank you to all!

6 Months!

Hope is officially six months old today. And such a joy. She remains incredibly happy and sociable. She is sitting on her own and doing a little bit of "scuuching". Crawling can't be far off. Not sure if that's a good thing or a bad thing. I've got my hands pretty full, so I'm not sure if I'm ready to be chasing her around, but, by the same token, it might allow me to put her down a bit more. At present, I can only put her down for short periods, especially when I'm really trying to get something done. Like cook dinner. Almost every night, I'm preparing dinner like I'm preparing for a tandem ski dive. It's a little dicey removing things from the oven with a small child hanging off your chest and belly.

Thanks for checking in! Pics soon!

More Pleased to Meet You!

As Hope gets out and about more and more, she is able to meet more and more relatives. Most recently she had the pleasure of meeting my brother, her uncle Scott. Yesterday, she got to meet more of Mon's siblings and their families. Sorry, no pics. Given the size of Mon's family this could take years!

Alarmist?

Not too long ago, we had a visit with our pediatrician. At that visit, everything went really well. However, our pediatrician told us that if she could have her way she would want no one under 12 to touch Hope for the next 2 years, but she would be happy with the next one year. She told us to instruct Shane and Liv to kiss Hope on her feet and the back of her head where germs were less likely to find their way into her nose and mouth. She recommended that we get some mosquito netting that attaches to her car seat and stroller to help keep dirty hands and kissing lips from invading her space. Her concern, and I totally understand it, is that with Hope's cardiac history, she is more likely to have some sort of respiratory distress if she were to get a respiratory infection. I understand the concern, and we'll do our best to follow her recommendations, especially around hand washing, but, hey, I don't think she needs to be kept in a bubble.

The other day I had Liv and Hope at the park, and of course I'd forgotten her mosquito netting, and just about every little girl in the park (and a few boys) kept following us around trying to touch Hope. Normally, with the netting this is not a problem, the netting is just opaque enough that one doesn't really see Hope without knowing she's in there or looking really hard. Regardless, this one girl about 4 or 5 years old was just about to touch her and I asked her not to. Despite my efforts to explain Hope's situation, this little girl was obviously disappointed to not be able to touch the baby. She walked off dejected. Later, I saw her on one of the climbing toys. She very matter of factly told me that I was not allowed to play on the climber. I was too big. Tit for tat? I think so. I guess we're even now.

Nice to Meet You!

Hope finally got to meet her Great-Grandmother today! Hope had skipped Easter at Nonna and Pop-Pop's, which would have been a great chance for the oldest and youngest of our clan to meet, because we were still a bit nervous to take her out into large crowds during cold and flu season. Regardless, Grandma was very proud to show her off around the community where she lives. Hope and Olivia were both very, very well behaved. It was a great visit that seemed to fly by all too quickly.

Long Time

Well, it's been a long time since I've updated this and I've been getting a little bit of good natured ribbing about it. People really seem to have enjoyed reading my drivel and following Hope's progress. Hope is doing great! Thanks again -- I hope people aren't getting sick of me saying that, but we really are appreciative of all the love and support we've gotten/been getting throughout this process. At her most recent cardiologist appointment, the cardiologist gave a very positive report indicating that it should be normal pediatrician stuff from this point. Did you hear me knocking on wood? Yeah, yeah, superstition = false religion, yada, yada, I'm still knocking. But back to Hope, she's really developing into a little person. I don't think I'll ever tire of seeing that transition -- the one of little pooper/eater/sleeper into a real live person. Hope is now smiling and laughing and even trying to talk. When you give the chance to respond after a question or just about any old thing you say, it's so cool to watch her trying to respond. There is such energy in her efforts to form her little mouth and tongue into some shape that she thinks might make a sound similar to the one's we're making.

Tonight, we took the three kids for some long overdue portraits. We used this guy who was one of the respiratory therapists we met during Hope's stay at the hospital. He did a great job -- look for a new album in the right nav very soon.

Oh, and speaking of long time, Hope has slept for seven hour stretches for two nights in a row now. Despite my previous stance on the matter, sleep is good.

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...