Project Hope

Miss Talkative

2008-08-19T12:39:00.002-04:00

"stick" = sticker
At our gym, they ask us to label our diaper bags with those sticker name tags that everyone is so fond of for reunions and conferences. When we got home, Hope pulled it off of the diaper bag, put it on her shirt, patted it and proudly said, "stick!"

Recent Pics

2008-06-14T08:33:00.005-04:00

Elmo's World

2008-06-14T07:43:00.006-04:00

While we were in Disney, my mom introduced Hope to Sesame street. Hope fell in love with Elmo. We've seen Sesame Street before, but not on a schedule. While I do much "by the seat of my pants", my mom -- enviably -- does almost everything in a routine. I sense that her stay here with Hope was no different. Within days of our return, I was changing Hope's diaper, and began to sing the Elmo's World theme song, "La, la, la-la", and Hope finished, "Eh-oh wirrl".

When we found out about her diagnosis in utero, I totally geeked out and was reading all these scholarly articles about TGA kids and their prognoses and outcomes. Several studies pointed out high correlation between kids who'd been on heart-lung bypass machine and a difficultly in speech and/or language development. Given her level of verbal expression and understanding, I think she's going to be fine. We don't read to her as much as we vowed to after reading that article, but we do talk to her almost all the time; describing diapering, dressing, eating, cooking, laundering, playing, etc. I think she's going to be fine -- in the speech department, anyway.

At 14 months:
Her sixth tooth just broke through, and the seventh is not far behind. She enjoys coloring, singing, and dancing. As I write this, she's sitting next to me making funny noises with her mouth. She sings the ABC song -- it's far from perfect, but certain segments are right on. She says MORE and PLEASE using sign language. Says "CHEEEESE" whenever the camera comes out. And, oh yeah, LOVES to climb. I often have to put the kitchen chairs down on the floor sideways or upside down so that she won't climb up on the kitchen table. One night, while making dinner and chopping vegetables, I turned around to find her on top of the table, sitting inches from the edge. Scary! She climbs the ladder on our swingset, and goes down the slide by herself. She has her brother's sense of adventure, which he likely got from his dad.

Emerging Personality

2008-05-17T08:04:00.003-04:00

Yesterday, I was having great fun with Hope at lunch. We were playing a little game, apparently started by Nonna, where after every bite of yogurt Hope bites down on the plastic/rubber spoon and won't release it. Of course, she has a smile on her face and this is all in good natured fun.

We recently returned from Disney. Mon and I took the two older kids, while my Nonna and PopPop kept Hope here at our house. Leading up to our departure, Mon and I started to feel these pangs of guilt about leaving Hope at home. We started reading these forums on Disney's website about strategies for taking one year olds (and younger). Even our first days on the monorail, we'd see these families with little tiny babies, and we'd start to think we should have brought Hope. But we soon realized that, while we did miss her, we were able to enjoy do so much more of the parks without her. We were able to stay out later, do rides together instead of taking turns. It was nice. The bitter part (of the ubiquitous "bittersweet") was that upon our arrival home, Hope acted almost as if she forgot who we were. She would cling to Nonna, and acted a bit shy toward Monica and me. I kind of expected this as I received a similar treatment on my return home from my two ski trips this year, when Nonna also came to help out with the kids. But I don't think Mon was ready for this.

Stopping Traffic

2008-05-14T23:13:00.004-04:00

Literally! yesterday, as we were leaving Shane's piano lesson, a car begins to slow next to ours as I am getting the kids into the car. The driver is an older woman, likely late fities/early sixties. I'm thinking she's going to ask for directions. With the window down, she says, "What a beautiful baby!" And drives off. I try to yell, "Thank you!" but am so stunned, something more like, "Eh errr uhh ank you." comes out.

In more mundance news, Hope is fascinated with light switches. Whenever we walk past one, she says, "Ssseh. Ssseh. Ssseh." And wants to flip it. If it's up she pushes it down, if it's down she pushes it up.

Ninja Girl

2008-04-27T22:32:00.011-04:00

Hope found Mon's nunchuks (foam covered) from way back when, which were previously found by Shane and left strewn about. See the album for all her fun

Growing

2008-04-23T23:34:00.002-04:00

Hope has four teeth now. Two up and two beneath. (Can you name the band?) She is also saying some "words"; Mama, Dada, down (deh-deh-deh), bottle (ba-bul), ball (ba ba ba). She sometimes calls Shane (Say) and Olivia (dih-dee-uh or lil-lee-uh).

Sorry To Keep You Hanging

2008-04-19T08:07:00.002-04:00

Hope's sedated echo looked good. Heart function and size were totally normal. We also just got back the results from the development psychologist who tested her as part of the feeding study -- again, totally normal.

Thanks for caring!

Back at CHOP

2008-04-11T10:28:00.006-04:00

Today we are back at CHOP -- don't worry -- for a sedated echocardiogram (ultrasound of the heart). Part of normal care for TGA kids at one year old. Hope's cardiologist has been performing non-sedated echos in a satellite office about every two months, but as she becomes more active it becomes harder and harder to get good pictures of her little heart. As we sit here in the waiting room, it just feels natural to write. It totally brings me back to our experience just over a year ago. I even ran into another family who was here at the same time that we were. Small world.

Yesterday, we had a speech therapist out to the house to evaluate Hope's speech and cognitive development. Hope was awesome. That's not just me talking either. I know I'm more than a little biased, but both the speech therapist and the developmental psychologist -- who saw her on Wednesday as part of the feeding study -- were really impressed with her and her abilities. It's easy, especially in these really busy weeks to get into a funk and to forget how truly blessed we are -- knock on wood, for as I type this I'm afraid I'll jinx her echo results. But every day with her and our other children is such a blessing.

Now, if I can just enlighten the boy to this same way of thinking. Blessings!

Its Official, She's Toddlin'

2008-03-28T22:43:00.002-04:00

Hope is now walking the length of entire rooms. She's been taking steps on her own for a few weeks now. Many times it's been at the request of Mom and Dad, who are dying to see her pass certain milestones, especially given her unique and auspicious start. But about a week ago, we were all trying to get out the door, and about halfway through admonishing Shane for not having his shoes on, he shouts out, "Look, Look! She's gonna walk!" And sure enough, she ended up taking about 7 steps. It's been touch and go since then, she was just diagnosed with bilateral (both sides) ear infection which I think messed with her balance. It's actually funny since Liv had a very similar deal at around the same time. But now she's back to it. Liv had a palydate today, and when the other little girl's mom came to pick her up, Hope was in total show-off mode. She was walking through entire rooms. She's a toddler.

Fun in the Basement!

2008-03-28T07:21:00.004-04:00

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!

2008-03-22T11:07:00.003-04:00

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!

2007-09-20T23:41:00.000-04:00

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!

2007-05-20T08:16:00.000-04:00

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?

2007-05-20T07:42:00.000-04:00

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!

2007-05-10T23:19:00.000-04:00

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

2007-05-09T21:33:00.000-04:00

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

2007-04-01T10:09:00.000-04:00

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!

2007-03-30T16:31:00.000-04:00

We are home. And its good.

3/30 Update: Coincidence?

2007-03-30T09:34:00.000-04:00

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!

2007-03-29T16:41:00.000-04:00

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

2007-03-28T13:33:00.000-04:00

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

2007-03-28T08:22:00.000-04:00

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

2007-03-27T09:16:00.000-04:00

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

2007-03-26T08:32:00.000-04:00

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!

2007-03-25T09:07:00.000-04:00

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!

2007-03-24T21:56:00.001-04:00

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]

3/24 Update

2007-03-24T09:42:00.000-04:00

Hope had a great night. She got a little bath, which she wasn't sure if she liked or not. The nurse said that she would cry a little and then stop and look at her, and repeat. The I.V. line in the hand was leaking, so that was removed and she got a new one in her right foot. Now her hands are pretty much free, and both feet are all taped up. There goes the soccer scholarship. They weaned her further off the vent, reducing the number of breaths delivered by the machine to 5/minute, and they will likely extubate after morning rounds. She seemed to tolerate breast milk well through the NG tube, that may be resumed after extubation or she may be allowed to try taking it by mouth, depending on how well she's doing otherwise.

Typically, the kids at CHOP are intubated through the nose but she had some obstructions which they think are resolving with time. Doesn't seem like a big deal, but they will continue to monitor. But, with the breathing tube in her mouth, she has been sucking on it like its a permanent binky. Its kinda cute.

Thanks for checking in!

Visiting

2007-03-24T09:30:00.000-04:00

So, it's the weekend, and a lot of people are looking forward to visiting Hope. We welcome that, within reason. Please remember that Hope is still in a Cardiac Intensive Care Unit. As such, we hope that people will respect our desire to have only adult visitors at this time. This request will help us respect the CICU's mission to enforce proper hand-washing and reduce the transmission of germs to these critically ill patients. Additionally, the CICU has a policy of no more than three visitors at the bedside at a time. If people are coming en masse, please understand that folks may have to take shifts with their visits. We are definitely not trying to discourage people from coming -- we would cherish our friends and family coming -- we just want to make sure people have appropriate expectations of what the visit might be like. That said, come on down!

Sweet Dreams, Hope!

2007-03-23T22:19:00.000-04:00

It was one of the hardest things I've done in recent history. Tonight, Monica and I are sleeping at home and our newest angel is still in the hospital. The sleeping arrangements at the hospital are so-so. It's a true blessing that they have them but the two of us in a twin bed with a fairly-active-after-midnight-group sharing the space does not make for a good night's sleep. She is in the hands of one of our favorite nurses tonight and she has all of our phone numbers.

Hope has had a pretty good day. Despite still being on the ventilator, they have begun the weaning process again. When we left, the vent was breathing for her eight times per minute and she was breathing 18-20 times per minute, with good O2 saturations and blood gases, and without the huge efforts and discomfort required with breathing yesterday. The pacemaker wires (placed at time of surgery, just in case) and the RA lines were removed as well as the dressing over her incision. In addition to all this 'stuff' coming off, she is beginning to open her eyes more and more, and so she is beginning to look more and more like the baby I saw early Tuesday morning. In fact, I swear she heard Mon and I talking about leaving tonight and made extra eye contact as if to say, "Please don't leave." It really was had to pull ourselves away from this tiny helpless creature.

3/23 Update

2007-03-23T11:46:00.000-04:00

Hope seems much more comfortable today on the vent. She has opened her eyes several times and looks like she's really trying to make a connection with us. I think if she could talk she would tell us that she is working as hard as she can. Today, another kid on the floor coded and it just reminds you how very tenuous life is, especially for these littlest of cardiac patients.

Later today, they will remove the arterial line (a line that can provide meds to and measure pressures at the heart). To make up for the lost flow capacity, they have placed an IV in her foot to complement the one in her hand. Further, they have removed her Salem Sump -- a suction line that helps pull the acids out of her stomach -- and have placed an NG, or feeding tube. After yet another X-Ray to confirm its proper placement, they will start introducing breast milk through this tube.

Last night, we read Beatrix Potter's Peter Rabbit. Today, The Tailor of Gloucester. I think she's really developing an appreciation for literature.

Thanks again for all your prayers and offers to help!

A Setback

2007-03-22T22:58:00.000-04:00

As I write this they should be finishing up re-intubating (re-inserting the breathing tube). Her labored breathing never improved, despite their efforts to correct with meds and intermittant airway pressure. As much as I don't like her going through that process and all the meds again, she was very uncomfortable and actually starting to cry in her previous state. I couldn't stand to watch it.

I'm exhausted but can't sleep.

Hope Changes Plans

2007-03-22T20:34:00.000-04:00

Hope has developed a little difficulty with her breathing and the plan to get her on breast milk today has been postponed. It seems that she's developed a little fluid in her lungs and perhaps around her heart. The staff is "Hope"-ful that diuretics and airway pressure will help resolve the fluid and allow her to breathe more easily and bring her heart rate down a bit.

On a positive note, we had a great visit with Nonna and the kids today. It was so awesome to see Shane and Olivia. Even though its only been 3 or 4 days, it seems like an eternity since we saw them. They did a great job listening to the Family Life Specialist, a woman assigned to add some normalcy to families going through these issues. They asked a lot of great questions. And, more importantly, were excited to meet their baby sister. [Click on pics in post for a larger view]

More Progress

2007-03-22T10:42:00.000-04:00

They have removed her Foley catheter and temperature probe. Her blood gases look good and one of the umbical veinous lines will come out soon. And best of all, if things continue to go well she will soon get her first taste of liquid gold (breast milk)!

Further, she is excited to meet her brother and sister for the first time this afternoon. While they've not seen her in person, they're already pretty enamored with her. They are doing great with Nonna, who paid our whole family a great compliment, saying "You can tell this is a home filled with love." So, while it may not always feel like things are going as planned, some things are working.

A Good Night

2007-03-22T08:56:00.000-04:00

Hope did well through the night. Apparently, there is a 3 hour window about 8 hours after surgery when according to our nurses, "if things are going to go wrong, that's usually when they go wrong." We really wanted to be there during that period -- which worked out to be 11PM - 2 AM but we were just so exhausted that we had to go get some sleep. We kissed her and tried to hug as best we could and we went off to find some Z's. But as I said she did great, so well, in fact, that they have removed her breathing tube (she's now breathing on her own) and her chest tube, which was serving to drain her chest cavity. It's awesome and amazing to have these lines and tubes coming off of her. Even with a degree in Bioengineering and a true love for science and medicine, I was not prepared to see my little girl come back from surgery with the plethora of lines coming out of her that she had.

Thanks again for everyone's thoughts and prayers and offers for help! While we'd love to respond to everyone personally, this will have to suffice for now, as the response have been overwhelming. We are truly blessed to have such awesome friends and family! Thank you, thank you, thank you!

Surgery is a Success!

2007-03-21T11:50:00.000-04:00

We just met with Hope's surgeon, Dr. Tom Spray. He reports that her surgery went very well. The cardiology department had been doing a number of echo's trying to visualize some particular defects or issues. Dr. Spray reported that he did not detect any of those very small defects and that every thing went very smoothly. She's back in the CICU, and as soon as she is settled -- or more appropriately, the staff is settled, she'll be sedated for roughly the next 24 hours -- we will be able to go see her. Thanks again for all your thoughts and prayers.

Many Thanks!

2007-03-21T06:59:00.000-04:00

I just logged into my gmail account, and was truly touched by the kind words and thoughts that people sent and the offers for help. We are truly blessed to have such a kind, compassionate friends and family. Thanks!

Surgery Day

2007-03-21T06:36:00.000-04:00

Hope is being prepped for surgery as I write this. We have consented for her to partake in an imaging study before the surgery, so even though it is 6:40ish now, her actual surgery will begin closer to 8:30. Monica and I were both able to hold her for a bit this morning before they came in to prep her for surgery. She seemed to melt in our arms as if that was the one thing she needed to make her complete.

We had a casual Baptism ceremony at her bedside last night. Many thanks to my dad and to our dear friends Mike and Shannon for being a part, and many thanks to Tony Sundermeier for leading the ceremony after a very full day.

More to come...

Hope Springs!

2007-03-20T11:36:00.000-04:00

Hope is here! Monica Grace delivered a beautiful 7lb, 6 oz baby girl at 1:35AM on Tuesday, March 20, 2007. The baby is absolutely gorgeous (pictures to follow), and if we didn't have some much faith in the knowledge and skills of the amazing doctors and nurses here at CHOP we almost couldn't/wouldn't believe the previously made diagnosis of TGA (Transposition of the Great Arteries).

We have named her Hope Eloise. Hope was one of two favorites before we learned about her heart defect, shortly before Thanksgiving '06. For obvious reasons, the diagnosis cemented it. Eloise, besides flowing well with Hope, has two special and appropriate meanings. The German meaning, a variant of Louise, is "renowned fighter". Given the early struggles that she will face, we definitely want her to be a fighter. The French meaning is "good health."

As of right now, the doctors are talking about performing her surgery tomorrow, 3/20. Please keep Hope in your thoughts and prayers. More updates, and hopefully pics to follow.