Monday, October 26, 2009

Major Milestones

Today was a pretty big day at the hospital. Here are just a few of the highlights:

Sadie had her third, and very successful day learning how to nurse, she's officially over three pounds, and she no longer needs any oxygen support. She is also all the more happier knowing that she spent the weekend getting to know Gigi, her grandmother on her mother's side!

As for Zoe, she hit some major milestones as well. For starters, she came off the ventilator today (she did, however, get connected to CPAP, a less invasive but still pretty intense oxygen machine), she had her first mom and dad directed bath, got to be cuddled by both of her parents, got to show off her her face without any tubes or tape for the first time ever (even though it quickly got covered up again when she was connected to her new machine), and she got to breathe out loud and let her parents hear her cry--both for the very first time.

While giving birth to two baby girls is a pretty big deal, getting to hold BOTH of our daughters on the same day--after everything they've been through--is almost bigger. Today may have been one of the longest days at the hospital, but it was, honestly speaking, one of the best. Of course, we know that we still need to maintain our cautious optimism because they both have a long way to go but at least for a very short time today, it felt so good to see both of our little girls looking and acting just like babies.

Tuesday, October 20, 2009

somebody got her belly all closed up today!

Zoe had her third surgery today, and as you can (maybe) tell from the photo, the only thing on her belly right now are two big band-aids! Gone is the orange colored tape, the mountain of gauze and the tube they had put in there. Now she just has a cute as pie little belly that her mom and dad can't wait to snuggle with!

Her surgeon said she did an amazing job, yet again. Now the docs will keep a close eye on her for the next 48 hours and, provided that all goes well, start looking at feeding her and weaning her off of the ventilator. These next two steps are really important because even though the ventilator probably saved her life and the intraveneous "food" she is getting has helped her grow, both tools can have damaging effects if used for too long. The ventilator, for example, can cause something called chronic lung disease, and the TPN, her liquid food, can cause liver damage. Anyway, we're not focused on that right now; rather, we're just focused on how amazingly strong she is and how impressive it is that she has powered through three surgeries like a champ and she's not even three weeks old!

And as for her sister--turns out the scale the nurses were weighing her on was broken so the little one is not so little. While they thought her weight was something to be concerned about, everyone is rejoicing in the fact that she is significantly heavier than we thought she was!

Saturday, October 17, 2009

All is Well Right Now

All is well with the babes right now. Zoe is completely off her nitric oxide and yesterday's echocardiogram came back showing minimal to no signs of pulmonary hypertension. This is a great news b/c nitric oxide is one of the main PHT meds--and yesterday's results mean she really is doing great--all on her own. Her lung x-rays look fantastic too, in fact, her right lung, which was only 1/3 of it's proper size at birth, has filled almost all of the right side of her chest cavity! Like one of the docs told us the other day, she really is a little miracle baby.

We know she's not out of the woods yet. The next big steps involve closing her abdomen and getting her off the ventilator. Mom is much more anxious about this than dad, who is perfectly, and probably more appropriately, happy to be patient. It would be great if the docs could extibate her (take her off the ventilator) before the grandmothers get here (very soon!) but we'll take whatever we can get. If not before their first visit, then certainly for their second.

In the meantime, Zoe seems very happy. She especially loves it when her mom and dad come into the room and sit by her bedside. Even though she's on some pain meds and pretty well sedated, she always does her absolute best to open up her eyes and look at us whenever she hears our voices. Yesterday I think she was trying to say thank you to her daddy for always coming to see her, reading her bedtime stories, and kissing her goodnight every single night--no matter how late it is, how may hours he has already been at the hospital, or whether this requires him to take one more late night trip to the hospital in order to be at his daughters' bedsides.

Sadie is doing really well too, in fact, she gained two whole ounces yesterday! We are so happy about that. While I've mentioned that we get to do skin to skin with her every day, a lot of people have asked me what that means. The technical name for skin to skin is "kangaroo care," :) and it actually involves laying the baby right up against mom or dad's skin. Not only does skin to skin keep the babies really warm, but it helps them developmentally as well. It's not just good for babies though. As you can see from the photo, parents love it just as much . . . if not more, than their children.

Wednesday, October 14, 2009

Zoe's First Follow Up Procedure

The surgery team is changing Zoe's dressing today. As we mentioned before, they left her abdomen "open" after her surgery because putting everything in its proper place right away could cause too much pressure to build up in her belly. The wound is nice and covered and mom and dad can't see it when we're visiting with her, but we can definitely see the dressing, which is referred to as a silo. The silo involves a plastic covering a bunch of adhesive and gauze and some tubing. While it may sound quite routine to change a dressing, at Zoe's age it's a pretty big deal. Surgery turns her room into a mini OR and the anaesthesia team is there to help monitor her pain. Basically, any time they go in and start moving things around, there is a risk that they can jeapordize her stability. Also, even though they give Zoe lots of medications so she is well sedated, she still wiggles around a lot and senses people are in her room--at least that's what she was doing right before they kicked us out.

So, since we've been kicked out. . . we are just sitting in the hallway waiting for a report from the surgeon that all went well. Hopefully he will be out momentarily with good news.


Yay!! The surgeon says everything went well. They changed the dressing and closed a portion of the wound. They would have closed the whole thing today, but they felt like it would be better to do it in two steps. So, they'll come back next week and do the whole thing again. While we don't like our little girl to have to have so many surgical procedures, we'd rather the doctors be more gentle than aggressive, so we're perfectly fine with their plan.

We are so proud of our little girl and we will never get tired of hearing the doctors tell us how amazing she is. We'd love to post a picture of her but we decided to wait until her dressing is gone--we just think she may want a little privacy. :)

As for her sister is concerned--we're happy to report that she gained some weight tonight. She lost a bunch of weight after she was born, which is normal for babies, but the docs weren't so happy that she hadn't started gaining any. After a few adjustments to her food and the addition of some protein powder, we're thrilled to report that she's finally trending upwards, i.e., getting a little fatter. We're also thrilled to report that we're now regularly getting skin to skin time with her, and mom, dad, and Sadie couldn't be happier!

Monday, October 12, 2009

Recovering from Surgery

Today was much better than yesterday--for all of us. For mom and dad, it's as if the universe knew that we had just about reached our tipping point (physically and emotionally) and it decided to give us a little break. For starters, we were greeted this morning by an amazing new nurse for Zoe. The nurses sit by the patient's bed side all day long and they are an incredibly important part of the process. Having a good nurse (or a not so good nurse) can really effect the way the family functions. So, it was a huge emotional relief for us when we met one of Zoe's new nurses because she completely put us at ease. After talking with her for about an hour, we really felt like Zoe was in a good spot and we could actually feel confident about going home to rest for a little while.

That being said, we are a bit apprehensive to report too much of Zoe's progress because we know we are not out of the woods yet. So . . . we will leave it at this: for the time being, she is doing well and hanging tough. Her numbers (saturation, blood pressure, and PO2) look good. She is being weaned off several of her meds and she is staying stable. The docs discovered one other thing they may need to fix with surgery in a week or two, but for the time being it's not a big deal and not causing her any problems. She really is a fighter and we are more and more amazed by her every day, as are the doctors and the nurses. That being said, we are all staying focused on her continuing to overcome all of her hurdles and don't want to get too excited, at least not yet.

We also got a little relief when we went to see Sadie. Her neonatologist was back to work today, after having the weekend off, and he always makes us feel at ease. We discussed Sadie's spitting up and weight issues, and he was very relaxed about it. He said that he was going to add some more supplements to her feeding and he expects her to start gaining weight in no time. While we were talking at Sadie's bedside, we got a little bit more relief when her nurse gave us a suggestion. She overheard us talking to Sadie, telling her that we couldn't wait to kiss her little face and then the nurse offered to lift the head off of Sadie's isolette and let us get in there and smother her with kisses. We haven't really been able to do that yet, so you can imagine how much we enjoyed every single second of it.

Finally, we have noticed that win or lose, our little girls have decided that they are definitely Ravens fans. We're not sure if it's the picture of Ray Lewis we talked about putting up in their isolettes or just a happy coincidence, but somehow Sadie managed to convince the nurses to dress her up in the purple and black today. Apparently she said she won't let any last minute losses to division opponents deter her from her steadfast commitment.

Sunday, October 11, 2009

Everything is okay today. Zoe had one little episode this morning where her heart rate got really high (SVT), but the nurses corrected it and they are just going to watch her closely to make sure it doesn't happen again. The nurses were also a bit worried about Sadie and her spitting up, but they adjusted the amount of food she is getting and she hasn't spit up again, so hopefully it was a food volume issue and not something more serious.

On the parent front, Rich and I are just exhausted. While the surgery is over, we are clearly aware of the fact that we have a long road ahead of us and for some reason, that reality is a little tough to take today. But, we are hanging in there and I know we will feel better after a little rest and regrouping.

Saturday, October 10, 2009

Surgery Update II

Everything is great! Zoe made it through her surgery successfully and we are SO proud of her. But before we get too excited, we need to get her through the next 48 hours w/o incident. The doc says that's the best indication of how she will do--so we are reserving a complete celebration until a little bit later.

In the meantime, though, we are celebrating today's success! Zoe was very tough during her surgery. While the doctors pulled her liver and small bowels out of her chest, she managed to maintain the same [healthy] heart rate and blood pressure throughout the entire procedure. The doctor said that the hole in her diaphragm was bigger than expected--essentially the entire right side was missing, so he had to use a goretex patch as opposed to her own muscle fiber, but we are perfectly fine with that. It's no surprise to us that she needed a patch, we just didn't expect that the hole was going to be that big. The goretex patches work great, the only drawback is that they don't grow with the child, so in a year or two she may need the patch replaced. There is also a risk that she can reherniate and we won't necessarily know it. Reherniation can be pretty dangerous, but the doc left some slack in her patch so there's room to grow and the docs will monitor her closely for the first few years of her life.

We are going to continue to watch her through the night. She was given some medicine that paralyzes her skeletal muscles to keep her still during the surgery and we'd like to see that wear off. They also leave her stomach open (covered, but open) because her abdomen needs time to make room for the liver and the bowels. If they don't keep the abdomen open, a lot of pressure builds up in her abdomen and lungs and that's the last thing we want. Oh, and it turns out that her right lung, which was compressed by the liver, is about 1/3 in tact and that made the docs quite happy. Over the next few months her lungs will fill out the space in her chest and, in fact, they will continue to grow until she is about six or seven.

In the mean time, her sister had some big firsts as well today as well. Sadie got a big time IV removed yesterday so mom and dad got to hold her for the very first time this morning. It was so amazing--for all of us. She also had her first spit up. We all said that was because she was so worried about her sister's surgery. But, everything has calmed down in her tummy and both girls are resting quietly right now. So are mom and dad.

Thank you so much for everyone's thoughts, prayers, and well wishes. We know it made such a big difference today!

Surgery Update

Surgery didn't get started until around 2:30 today. Zoe's being operated on right now. We have a preliminary report that she is doing well, but we will know more within the next hour.

Friday, October 9, 2009

Huge Day Today

We got to the hospital this morning at 8:00 a.m. We had intended to stay until about 11:00 because Rich had a meeting at noon. We thought we'd go to the hospital for a few hours, head home at lunch time and come back down later to say goodnight. At least that was the plan we had thought we were going to stick to, but everything changed once we spoke with Zoe's doctors. Turns out that some time between last night and this morning, they had changed their mind about Zoe's surgery. Instead of waiting until next week, they decided they wanted to do the surgery sooner--as in tomorrow sooner. The docs wanted to run one more echocardiogram to check Zoe's pulmonary hypertension, but if all went well they intended to transport Zoe to the children's hospital today and operate in the morning.

While the children's hospital is connected to the one in which I gave birth, transporting babies in Zoe's condition is no small thing. She needs to stay on the ventilator, keep all her meds, oxygen, and nitrous oxide in tact, and stay stable. It is not abnormal for babies to have some kind of setback after transport. In fact, we know just how difficult transport can be because when Zoe was born, they decided not to transport her as they had intended to do because she was so fragile they thought she might "crash" along on the way.

So . . . we waited anxiously for her echocardiogram to come back. If her pulmonary hypertension had improved it was all a go. We were nervous for so many reasons, not the least of which was that doing the surgery over the weekend meant using a different pediatric surgeon, one we had not ever met. We tried very hard to track this new doctor down throughout the day, but we didn't have any luck. Ultimately, we decided that we just needed to suck it up, trust everyone's word when they told us that he is excellent, and realize that we weren't going to meet him until we got closer to the surgery.

At about noon we got the results of the echo back--all was good and transport was a definite. They told us to be ready at 3. What they didn't tell us is that Lifeflight (the team that responds to major emergencies) was going to do the transport. They also didn't tell us how gigantic the transport machine is. So you can imagine our surprise (and my tears) when this machine rolled into Zoe's room:

They had to unhook Zoe from all her connections and rehook her on this new isolette,

but the team was completely on top of it and stayed very focused on the task at hand. After connecting her to her new ventilator, they wheeled her through the hospital. I cannot tell you how much people stare when they see this machine being wheeled through the hallway:

After about a five minute transport, they finally got Zoe to her new home in the children's hospital. Then they reversed the whole process--unhooking her from everything so they can reattach her to her new machines:

While mom and dad settled in and relaxed, and dad made sure all the nurses were on task
Zoe settled into her new home:

The docs said that her numbers appeared to stay stable and she did a great job. Mom and dad were VERY relieved that she handled everything so well. Meanwhile, when we told Sadie that Zoe was going to have a big day and get transported over to the hospital right next door, she said she was really going to miss her, but wished her sister well and told her she couldn't wait to see her soon!

As far as the new pediatric surgeon goes, we finally got to meet him after Zoe had settled in. He seems very smart and capable and we feel completely comfortable about him. Of course, it doesn't hurt that he went to Hopkins for undergrad and med school and he's been to the Charles Village Pub, The Green Turtle and Eddies Supermarket, but we can't get past the fact that he grew up in Pittsburgh and he's, unfortunately, a Steelers fan.

All kidding aside, we feel very confident with Zoe's life in his hands tomorrow. While the surgery itself is not all that complicated, it involves moving the liver from the chest down to the abdomen and anytime anyone touches a premature baby's liver, there as a risk of bleeding that could potentially become catastrophic. So, please hold Zoe in your thoughts and prayers tomorrow morning, and hope that her surgery is smooth sailing.

It's late and we are very tired, so we are going to try and rest up for the big day tomorrow. THANK YOU so much to our friends Katherine, Roger, Karena and Adam who dropped dinners off at our house tonight. They could not have come at a better time! And thank you Meg for always coming by the hospital and visiting with us. It always adds a little boost to our day. Before we go though, we want to give a shout out to our friend Emily who was admitted to the hospital today for complications from her heart transplant. Em--we will come see you this weekend and we absolutely know that things will improve for you very, very soon!

Thursday, October 8, 2009

First Day Out of the Hospital

Today was pretty exhausting, not because anything went wrong (at least not so far) but because we are realizing how incredibly difficult it is to not live right down the hall from our little babies. We spent most of the day at their bedsides and while we wish we could be there all day and night, we know that's not exactly practical. So, we are settling for small little blessings that happen throughout the day.

While we were switching back and forth from one isolette to another today, I told Rich that I just wish I could be there every time they wake up. I want our faces to be the first faces they see when they open their eyes. With the amount of sedation that Zoe is on, she sleeps for most of the day so she doesn't open her a eyes a whole lot . . . so as long as I can sit by her side and read to her, and let her know we're there, I'm okay. But Sadie does wake up every day and she opens her tiny little eyes and looks around. We don't get to see her do it that often because she spends most of each day sleeping and growing. But today, as if she had heard me, or knew what I needed, she did it. Just as we had returned from getting a bite to eat, we walked up to her isolette. And there right in front of us, she opened her tiny little eyes and we were the very first things she got to see.

While Zoe doesn't open her eyes a whole lot each day, she does sleep rather peacefully, even on the ventilator. And even though it's hard to see her face with the ventilator covering it, trust us when we say that she is cuter and cuter every single day. Especially because a lot of her swelling has gone down, she's been weaned off two of her medications, and she is functioning so well while only getting 40-50% oxygen from one of her machines. Here's our little pumpkin fast asleep and adorable:

Wednesday, October 7, 2009

Discharge Day for Debbie

I was discharged from the hospital this morning. While it feels great to be home, it was definitely more comforting to be right down the hall from the girls. That being said, they looked great this morning and the docs are even talking about scheduling Zoe's some time early next week. Meanwhile, I am finally getting a little bit of sleep, figuring out how to clean and recover at the same time, which means scheduling a cleaning person for tomorrow :), and figuring out how many times a day we can get down to the hospital see the little ones.

Tuesday, October 6, 2009

Photo Opps

Here are some pics from our last few visits:

Here's dad helping the nurses with Sadie's "cares." That's what they call it when they change her diaper, check her temperature and blood pressure, and change her bedding etc. . . Dad is a great helper and he's already changed his first (tiny) diaper:

And here's dad diligently checking his daughters' monitors. We're learning how to read lots of complicated numbers and it's paying off. Today we learned that Zoe's oxygen has been reduced from 100% to 60%--and that's great news. In other words, a few days ago, she needed the oxygen machine to give her it's maximum output to keep her blood oxygenated, today she only needs 60% of the machine's oxygen and her blood is still oxygenating beautifully.

This is mom telling Zoe that if this is her ploy to try and get out of Hebrew school, it's just not going to work; she's still going to have to go (just like her mom and dad had to). :)

And finally, this is mama telling Zoe we will be back to see her in a few hours and to keep on hanging in there:

Thanks for everyone thoughts, wishes, and prayers, we really think it helps.
deb and rich

Monday, October 5, 2009

Plugging Along

Things are starting to feel almost normal around here today. Sadie is plugging along, still doing well. She came off the c-pap today and responded well. She's just hanging out growing and getting a little bit older. She even makes cute little cooing sounds and grabs my finger when I reach in to touch her hand. The hardest part about her status is not being able to pick her up and snuggle with her. She's so close to being able to be held that it just breaks our hearts to not be able to do so every time we see her. But . . . if that's our biggest hurdle with her right now, we'll take it!

Zoe, we're happy to report, is also doing really well (considering). About a day and a half ago, she was on the max doses and the max number of medications that the doctors could give her and her oxygen saturation levels were not ideal. But, over the last day and a half, her little body settled in some, her saturations levels look good, and the docs are dialing back some of her medications. The problem with her condition is that she's only got one really good lung right now and that lung has a hard time doing all the work. In response to the lung's stress, the vessels leading into her lungs constrict and blood tries to go back through the body without being oxygenated. The medications she's on work, among other things, to relax her veins, oxygenate her blood, and stabilize her blood pressure and as of today, the docs have been able to decrease her meds while maintaining her stability. So, the docs are VERY pleased with Zoe right now. Of course, we know that things could change at any second, mostly just because she's so little, but in the mean time, we have all decided that it's okay to be cautiously optimistic.

We were even able to have some visitors today and it was very nice to catch up with the outside world. I hope to get some more pics of the little girls when we head back down after dinner. Hopefully I'll have some by tomorrow morning.

Sunday, October 4, 2009

Day 2 update

The good news is that Sadie is doing really well. The docs say she's a "champ." She's back on the c-pap machine, which is just an oxygen machine w/ some bubbly water, because she had one little case of apnea yesterday (meaning, she forgets, for just a second, to breathe on her own). Apnea is completely expected for a baby her age and not harmful, as long as the nurses catch it right away, which they did. She is a cute and tiny little bugger, and aside from the one instance of apnea, she really is doing wonderfully. The docs expect to have her off the c-pap today and told us that we can expect to hold her tomorrow. Here are a few shots of mom and dad seeing her for the first time:

And here's one of her first solo shots:

It really used to freak us out to see pictures of babies all hooked up to tubes, but we're realizing that it's different when their your own. It's just not as scary, and the truth is, when it comes to Sadie, there really aren't that many tubes. Most of the things she's connected to are monitors, and the only other thing she's got going on is a little oxygen, so she really is in good shape. Anyway, we think she's pretty adorable.

As far as her sister Zoe is concerned, things are not going quite as well. The doctors are doing everything they can for her but what she really needs is to be on an ECMO machine. That's a heart lung bypass machine that most babies w/ CDH need. Being on ECMO helps the body stabilize so that the doctors can do the surgery they need to do to repair her hernia. Unfortunately, Zoe does not weigh enough for ECMO and she's not stable enough for surgery w/o ECMO. So, the doctors are giving her all the medications they can to stabilize her oxygen and CO2 levels and help her heart function. It's a lot to take for a tiny little baby to take and we have already had to discuss how much intervention we would or would not like them to do should her condition worsen. As people have told us, dealing with CDH can feel much like a roller coaster, and we're finding that to be entirely true. For example, yesterday Zoe was doing great, her oxygen was awesome and she was only on two meds. However, some time last night, her oxygen levels had tanked and they had to put her on six meds. And when we went down to see her today, she had stabilized again, but she's still on lots of meds. Adding to the roller coaster, the nurses came down to tell us to be prepared to say goodbye and then an hour later the doctor told us that we absolutely weren't there yet. So . . . based on the ups and downs, Rich and I are laying low, we're not really taking any visitors at this moment, not because we wouldn't love to see people, but more b/c when we are back in the room we kind of need to decompress and relax. We hope everyone understands.

Oh, and before I forget, here's a picture of little Zoe, she's got quite a few more hook ups than her sister. We know it's shocking to see all of her wires and tubes, but there's not really not that much we can do about that right now:

x's and o's,
debbie and rich

Saturday, October 3, 2009

They're Here!

After 27 & 1/2 hours of contracting, the doctors finally determined that I might be in labor. So . . . at about 1:30 am this morning, they prepped me for a c-section and at 2:58 a.m., both little girls, Sadie and Zoe, were born!

We didn't get to see them at all b/c they got passed through to the nicu right away and in fact, we haven't seen Zoe at all yet, but, both babies are doing great. Sadie weighs 2 pounds and 4 oz. an Zoe weighs 2.14, Sadie is on room air w/ something called a nasal canula and Zoe is taking in a perfect amount of oxygen.

Zoe, as most everyone knows, has a congenital diaphragmatic hernia and will need to be operated on as soon as she is stable enough. But, with her condition, sometimes this initial stabilization period can be most difficult so we are thrilled to hear that she is doing so wonderfully! We are heading down to the to nicu try and see them again and as soon as we have photos of both baby girls, we will post them.

deb and rich

Thursday, October 1, 2009

Happy October 1st

We're having another relatively uneventful day at the hospital today. The babies were hooked up to the monitors for about an hour this morning. Their heart rates are great and it appears that I am not having any significant contractions. After the monitoring appointment, the docs wanted to check the amount of fluid surrounding Sadie. Even though her water sac broke, babies continue to replenish their fluid throughout the pregnancy, and the docs wanted to see where Sadie was at today. Well, even though she replenishes her fluid, because there is no way to repair the tear, the fluid waxes and wanes. So, not surprisingly, when they measured her fluid, it was zero. That means the little bugger is hanging out without any amniotic fluid around her. Rich and I, however, are completely amazed to have learned that that's okay. Babies can function like this for the duration of the pregnancy. Apparently, fluid is very important through the 24th week because it helps lay the foundation for lung development, but after that, it's not actually essential.

If it surprises anyone that we've learned so much, we give all of the credit to our amazing doctors. They could not be any nicer or more helpful to us. In addition to the obligatory morning rounds, they come and visit us throughout the day--sometimes to check in on us and grab one of the many sweets in our room--and sometimes just to shoot the shi$. We know which docs are running marathons, what their goal time is, how many kids they have, where they got their education, etc. Even the docs who aren't caring for us at this very moment (but who will be caring for Sadie and Zoe) come and visit us every day just to check in. Anyway, through all the visits, we've had all of our questions answered and learned so much about the babies' predicament. If the amount of information we've taken in could possibly correlate to the amount of time the babies will stay where they're supposed to, we'd be sitting pretty. Unfortunately, it's not that easy.


As an aside--if any of you have long stays coming up at this particular hospital--and I hope none of you do, it might be helpful for you to know how they schedule the food around here. When I first got here, they gave me a menu that detailed all of the food for the week--from the entree down to the dessert, it was very detailed and the food was actually pretty good. At the start of the second week, I asked our "nutrition representative" for a new menu, and he was happy to oblige. He left the room for a moment and came back with a crisp piece of paper in his grip. As he handed it to me, he said, "I've got no problem giving you a new menu, but you do realize that it lists exactly the same food as last week's menu." In other words, while I found last Tuesday's spinach fettuccine and chicken almost pretty good, I didn't realize that I would have that very same meal every single Tuesday that I'm here. ;). No worries though, things could be worse. Here's to loads more spinach fettuccine with chicken.

Anyway, happy October 1st to everyone. Rich and I could not be any more thrilled to have made it past September.