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]

3/24 Update

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

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!

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

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

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

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

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

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!

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!

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

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!

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.