Monday, April 26, 2010

Whiplash

I am completely and utterly exhausted since Will came home. It's not that he's a bad baby, he sleeps really well at night (waking up to eat and then going back to sleep). It's that I don't sleep well. I sleep, but it isn't good sleep. I never hit that deep sleep where you are truly relaxed. I seem to linger at the surface of sleep. I worry too much about Will. What's really amazing is that as paranoid as Iam, I am still much better than I was when Julianna came home.

I am so tired I can't even hold my head up. I am so glad I am home by myself, because all anyone would see is me typing on the computer and then my head suddenly drops when I fall asleep, then I jerk it back upright and try to appear as nothing happened.

I MUST stay awake until 11pm when Will gets his next dose of meds. Seriously, I might end up with whiplash over this head bobbing.

Sunday, April 25, 2010

Let Sleeping Babies Lie

Or if you're me...take lots of pictures of them sleeping.



Thursday, April 22, 2010

To Quote Ozzy Osbourne...

If Will could talk, I am pretty sure he would be quoting Ozzy Osbourne right now...

"Mama, I'm comin' hooooooooooome!"

Wahoo, our little man comes home tomorrow! I am so excited I can hardly contain myself. After an initial diagnosis of HLHS and being told Will would require a series of open heart surgeries and would spend his first few months in the hospital, he is coming home just 25 days after his birth!

As of right now (because it's changed about a million times) his diagnosis is Shone's Syndrome with a hypoplastic (small) left ventricle. Other than possible heart caths, his future does not look like it will include any more heart surgeries. Since the day he was born, when his left ventricle was barely functioning, his heart has continued to improve. As of his latest echo (done on Tuesday) his left ventricle (though still small and mis-shapen) is functioning at an almost completely normal level! He is a little miracle! Thank you to everyone who prayed for Will and his heart. The prayers were definitely answered and we are so thankful!

Will will not be coming home with any equipment, but will be coming home with 6 different meds: Captopril, Digoxin, Lasix, Zantac, Potassium Chloride, & a multi-vitamin. The first 2 are his heart meds, the potassium is to counter-act some of the effects of the Lasix (a diuretic), and the Zantac is for his reflux. His nurse today made a great color coded schedule for his meds, so we can easily see what he gets and when he gets it. She also worked with a pharmacist and doctor to get him on a better med schedule. He was getting meds just about every hour round the clock, now he will get all but 2 at the same time and none of them need to be given in the middle of the night, thank goodness.

Now for the bad news (well bad for most of you). As of tomorrow, our family is officially on lockdown. My fellow preemie moms know what I'm talking about. We will not be going many places, especially where there will be lots of people (the one exception will be March for Babies because it's outside and Will can stay in his stroller and not be touched). We are also asking that you not ask to come see Will if you are or have recently been sick, if anyone in your family is or has recently been sick, or if a sick person has even looked at you funny in the last month (just kidding about that one). But seriously, we do not want to risk Will getting sick, at least not anytime soon (we realize he will eventually get exposed to germs). So our current visitors are going to be limited to family. I'm sure once summer is in full force we will venture out more and let more people meet Will, we really are very excited to show him off!

Tomorrow, I will try to post pictures of Will's homecoming. And you can all see pictures of him completely wire/tube free!

So Close

We are anxiously awaiting the moment we get told Will gets to come home. Dr Awesome has already said Will is ready for discharge as far as his heart and lungs go. Now we are just waiting for the stupid NICU doctors to OK his discharge. They say that in order for him to come home he has to drink 60ml (2oz) every 3 hours and finish the bottle in under 20 minutes. That seems so ridiculous. I don't know any baby, healthy or sick, that eats the exact same amount at every feeding and I know plenty of babies that take way longer than 20 minutes to eat.

And so we wait...Will has come so far and now he's so close to coming home. I can't wait for the OK to bring him home!

Tuesday, April 20, 2010

Communication Frustrations

Today started out as a bad day for me (not for Will, he's awesome!). Among other early hurdles, I overslept and had to skip breakfast to make it to Will's room in time for rounds. I managed to get there less than 5 minutes before the doctors...whew! Rounds were great! The doctors said he has amazed them with his progress in the last 3 days and overall. Dr S (the heart surgeon) even said he swore that Will would be a typical hypoplastic left kid, and now looking back is truly amazed and knows that the Norwood (first open heart) would have been the wrong thing to do. He said "patience for the patient" was key for Will. I AGREE! He has no more lines in, his only wires are to his heart monitor and pulse-ox, and he is eating like a champ (45-50ml every 3-3.5hrs).

During rounds it was confirmed that Will would be moving to the NICU today. But when was decided. So I pumped, fed Will, met with Dr Awesome, he had an echo, talked with the PICU doctor, pumped again, talked with Dr Awesome about Will's echo (his heart is now functioning at an almost normal level!!!!!), he had a physical therapy session and then I realized I was starving because it was lunch and I hadn't eaten all day yet. So I ran down to the cafeteria and grabbed a piece of pizza to eat in Will's room. When I got back, it was time for his big move, so I had to scarf down the pizza and pack up the last of his room.

His move to the NICU was so cute (I wish I had taken a picture)! They made him a bed in a wagon and he had his first wagon ride down to the NICU. They said he was so stable he didn't need any monitors for the ride there, so why not let him ride like a normal kiddo.

Here's where my day got way more frustrating...

I have been spoiled by both the NICU Julianna was in and by Will's PICU room (mostly by Will's PICU room, it had huge windows and a couch and was very roomy), so I knew there would be an adjustment going to a NICU that had multiple babies in each room, but it is much harder than I expected. Will's room has 7 babies in it (3 in his pod), there are no windows (most NICU's don't have them), and because there are preemies the lights are kept very low. Big change from his PICU room. Once his PICU nurse Laura (whom we really liked) left I felt so alone.

I learned the communication between the PICU and NICU is apparently not that great. They saw him as any other "sick" baby they would get. He was going to be there at least several days for observation to make sure he was stable enough to go home and then he would be assessed for discharge. WHAT?!?!?! I was told by the PICU doctors he was definitely stable enough to go home that he just needed to prove his eating skills. Then they tried to tell me they needed to teach me how to measure and administer his meds, which I had been doing all day up in the PICU already and was told I was checked off on. Then the NICU doctor started to add meds to his regimen...SERIOUSLY?? I was getting frustrated.

Then lactation came down. I was told they wanted him to nurse, which is fine, I would rather nurse than pump anyway. But they said nursing would delay his coming home and that even nursing he would come home with orders to supplement with a bottle at every feeding. If I was still going to have to pump and bottle feed every feeding, why the heck would I try the nursing and delay him coming home. I said I would pump and bottle feed and then I got a huge lecture from lactation about how that isn't a good idea and that my milk supply would never keep up and I wanted to scream at her, but instead I calmly told her a pumped for Julianna and never had an issue with my supply. She still tried to convince me to nurse and wrote up orders for me to put him to breast at every feeding I'm there. She just wouldn't listen to me.

He got evaluated by a speech therapist for his eating abilities. He did well, just needs a slower flow nipple (and possibly my milk thickened) because he aspirated a little bit while eating. She isn't too concerned though because he then coughed and was better.

Because Will is now a NICU patient we have to go through all the discharge hoops. We have to watch all kinds of parent education videos, prove we can feed and bath him, and all kinds of other things that seem silly since he was only supposed to be in the NICU for 24 hours.

Then a resident came in and said they were concerned with Will's heart rate being a little low. I tried to tell them that it had been that low for the last few days and that Dr Awesome wasn't concerned. They said it was a concern. UGH! They added neuro evaluations every 4 hours, why I have no idea! I was so frustrated at this point I left to pump and started to cry. How could one department think he was so ready to go home and then the next think he wasn't stable???

My parents thankfully came up to see Will, and calmed me down and ate dinner with me in the cafeteria. When I got back to the NICU, Dr Awesome had been there while I was gone and, because he is so awesome, straightened out some of the mess. He told them Will is there strictly to prove he can eat enough, that he doesn't need neuro evals or extra meds, that he is a stable patient and can go home as soon as he is eating well enough, which in his opinion he was already doing. I seriously think Dr Awesome is my favorite person in the whole world right now! He has been such an advocate for Will, and we are so thankful for him.

I am hoping that when I head back to the NICU in the morning things will finally be straightened out and there will be a plan for Will and his homecoming.

Monday, April 19, 2010

Updates...

Update on my little man:
~His art line (arterial line) was taken out today, no more hourly labs.
~He was taken off his milrinone (IV heart med) and has been holding his own!
~He was taken off his nipride (IV blood pressure med)
~He is now on captopril (oral blood pressure med)
~He is also now on an oral diuretic to keep his fluids down
~He is attempting to breastfeed
~He is consistently taking 40-45cc's of milk at his bottle feedings
~He still has his central line (IV) but it will be removed this evening
~The only wires/tubes he has left are for his heart monitor & pulse-ox
~He should be moving to the NICU tomorrow!!!
~Once he is eating enough he will come home!!!!!!

Update on my girlie:
~She still has a nasty cough, but her breathing is much better
~She once again dislikes mommy & daddy for leaving her
~She thoroughly enjoyed her "vacation" at the RMH
~She was spoiled rotten by Grandma H this past weekend

Update on mommy & daddy:
~Joe is going back to work tomorrow. I think he's actually excited
~I am still chillin' at the RMH until Will comes home
~WE ARE READY FOR WILL TO BE HOME & BE A FAMILY

*Please disregard any mispellings concerning Will's meds or medical treatments, I am totally guessing on most of them.

Sunday, April 18, 2010

Great Strides

So many things have changed with Will since my last post. He was put back on the ventilator about 3am on Thursday morning due to cardiac failure (his heart just couldn't do all the work it needed to). It was one of the worst moments ever. He was technically in congestive heart failure, a term that just scared the crap out of me. He had a rough day on Thursday trying to get himself back to where he was before he was taken off the vent. His chest x-rays looked bad and he was improving very slowly. Friday went much better, and yesterday morning at 10:45 he was extubated again. This time he has stayed off the vent!

When they take kiddos off the vent they put them on VapoTherm (basically oxygen and water shoot up their nose). They said he could be on it for a few days or for weeks, it just depended on how well he did. Just this afternoon he was taken off VapoTherm and put on a small amount of oxygen through a nasal cannula. A big step! They are actually thinking he will be able to come off the oxygen completely this evening! His breathing has improved SOOOOOO much in the last 2 days!

Will on VapoTherm (seriously I cannot get over how cute he is!)

During the night shift last night, Will pulled his NG tube out. They decided before they put another one in that they would try a bottle feed. He has now had his last 3 feedings completely by bottle! AMAZING! This is such a BIG deal for several reasons. But the main one is that we were told that if his heart was working too hard (a bad thing) that he would be too tired to eat from a bottle. Dr Awesome was so pleased that he was able to eat. He wasn't able to eat more than a few ml at a time before surgery because he would just get too tuckered out.

He's now eating an ounce and a half every 3 hours!

The nurse still has to help burp him due to all his wires and tubes.

Friday, they took out his chest tube and closed up the rest of his incision. This morning they took out his catheter (he's much happier now) and one of his IV's, so at this point his wires and tubes are down to his arterial line in his right arm (this is how they do his blood draws and monitor his blood pressure), a pulse-ox on his foot, the leads on his chest (5 of them), an IV in his right leg, and his nasal cannula (soon to be removed). The spaghetti mess of wires is getting smaller!
He is still on IV meds for his BP and to help "optimize" his heart function. They have started to wean him from the IV blood pressure meds to an oral one (he needs to get on an oral one in order to come home). And his diuretic is now oral as well (they are trying to keep his fluids low to help his heart work "smarter not harder"). We are not getting any time lines for him to come home. The doctors say it's all up to him, and that they don't pass final "judgement" on home until he is packed up & in our car.
He's no longer a naked baby! He doesn't particularly like clothes.

Julianna has spent the last3 days here at the hospital with joe, my mom, and myself. I was so tired of not seeing both of my kiddos whenever I wanted and when we were able to get a room at the Ronald McDonald House I was excited she could stay with us. She did really well until today, and I think she was just really ready to get out of the hospital and be somewhere else. We spent our days amusing here with the various toys at the hospital and RMH, and going for wagon rides, and elevator rides, and escalator rides.
Today she got to play with a mask (Joe and I had to wear them while one of Will's dressings was being changed).

She loved getting cups of ice & water, she felt like such a big girl.

Sibling jealousy reared its head yesterday when Julianna and Joe returned from a nap at the RMH to find me holding Will. She kind of flipped out temporarily. She suddenly wanted to sit on my lap and tried to climb up even with all Will's wires. That amazed me because she has wanted nothing to do with me since I got home from my hospital stay almost 3 weeks ago.
Both the kids are doing really well and I cannot wait for us to all be home as a family and get some sense of normal life again.

Thursday, April 15, 2010

I Want to Cry

You know what can make you feel like a really bad mom? Being woken up at 2am not by a hungry baby but by a portable chest x-ray coming to into your baby's room because he is struggling to breath, but you didn't even know he was struggling. When you fell asleep an hour earlier he was doing fine, a little uncomfortable, but still breathing fine on his own. You had no idea he was having trouble breathing because he doesn't make any noise when he cries. Having had a breathing tube for 36 hours has made him hoarse and you didn't hear him crying, struggling for air, his little heart working too hard.

Will has been intubated again. At 3am his room was a flurry of doctors, respiratory therapists and nurses all working quickly to sedate him and put a breathing tube back in. Dr F, the charge doctor tonight, said that the problem wasn't Will's lungs, but that his heart wasn't able to keep up with all the work of breathing. I wanted to cry. But I didn't.

I haven't cried yet. I've wanted to, but keep thinking what's the use, crying doesn't accomplish anything. Now, I want to cry. I want a good hard cry where I can just blubber on about everything I'm feeling and about how scared I am for Will. I want to sob uncontrollably and then feel a little better. But still I think what good would it do? Would having a complete and total mental breakdown really be of benefit to anyone?

I feel like I need to be strong for Will, for Julianna, even for Joe, but all I really want to do is cry.

Wednesday, April 14, 2010

Welcome to the World

I finally have time to write about Will's birth. I'm sitting in his PICU room right now and since I can't hold him the only things I can do today are blog, FB & fulfill my milk maid duties.

I actually ended up in L&D twice the weekend before Will was born. On Saturday night my right leg, ankle & foot swelled up ridiculously huge and really hurt to touch. My left leg was normal. Of course my OB thought it could be a blood clot and wanted me to go to the hospital right away to get checked out. Apparently there is NO ONE at the hospital that can do the ultrasound to check for blood clots after 7pm, so they told me to go home and come back in the morning for a scan.

The next morning, Dr O called. He was at the hospital to check on me and was wondering here I was. I told him they sent me home and he was furious! He had told them the night before that he wanted me admitted until I could get the scan on my leg, but they didn't do it. So I made a trip back to the hospital and had my leg scanned. Everything checked out fine and apparently I just randomly had only one leg swell up. What can I say, if anything weird can happen during pregnancy it happened to me.

I didn't feel very good all day Sunday. I felt as though I was constantly on the verge of throwing up. The only food I had all day was an apple, half a breakfast sandwich, and half a slice of bread. As the day went on, my contractions started to pick up. By about 9pm, I was having contractions every 4-7 minutes and they were really strong! I couldn't "talk" through these. So I called Dr O's answering service (who didn't even tell me they would page him and have him call me-they put me on hold while they called him...think I called them a lot???). Of course I was sent back to the hospital. I called my parents and told them what was going on and they came to the hospital. So did Erin.

Once I was there, lucky me got sick. I don't mean I threw up a little, I got really sick! And multiple times! At that point combining the throwing up with all my contractions I was told I was officially in labor and I was admitted. Despite being in labor, they said it still wasn't too bad (I disagreed!) and they wanted to hold off my c-section until my scheduled time the next morning if possible. My parents decided to stay the night at our house since it was so much closer than theirs, and Erin went home with the plan of coming back first thing in the morning. So then began one of the worst nights ever! I was in labor but not given anything for pain, or to slow down the contractions, or to help me sleep. I was miserable.

Finally, at 8am, a nurse came into my room and introduced herself as the nurse that would be going with me for my section. I said hello and asked if the section was still scheduled for 11am. I was SHOCKED when she told me I was going right then!! I called my parents and told them to get there ASAP! Thank goodness they were at our house (only 10 minutes away) and they made it there just in time to see me getting pushed to the OR (they didn't make it to the hospital in time to see me at all before Julianna was born). Joe called his mom and she and my sister got there right after I got to the OR.

Just before my c-section.
Joe getting ready to be a daddy again!

I was taken to the OR and wow! things were so much calmer than last time. I was more relaxed (as relaxed as you can be when your about to be cut in half and have your internal organs on the outside of your body), the doctors weren't rushed, the nurses were all calm, it was soooo much better. I got my spinal, which was so much better than the one I got for my cerclage in December. Then they prepped me and brought Joe in. I refused a lot of the meds they offered me. I probably would have felt much better if I had taken them, but I had so many meds during Julianna's section that I hardly remember any of it. I wanted to remember Will's birth.
I was surprisingly calm during the whole thing. And at 8:40am on Monday, March 29th, William Joseph was born. He was 37 weeks 4 days (full term!!!!!!)
Welcome to the world Will! (That's fabulous Dr O holding him)
When I heard that first cry, I cried. I said I wouldn't, but I couldn't help it. Then when Dr O held him up all I could say was "We have a huge baby!" Remember, compared to Julianna he was huge!
Will cried and cried, it was wonderful!

He weighed 7lbs 14oz and was 19 inches long.

Will was taken to the NICU (as was planned) and the transport team at the children's hospital was called to come get him. Joe went with Will to the NICU, there was no reason he needed to sit with me while I was reassembled. Our parents and my sister all got to see him as he was taken to the NICU.
After about an hour in recovery, my bed got wheeled to Will's room and I got to see him before he was transported. Amazingly, he was in the same room Julianna spent her first few hours (and then the next 66 days) in. Both my kiddos were in the same NICU room. I got to hold him for about 20 minutes before he had to leave. That was the last I would get to see him until I was discharged 4 days later.
When we found out Will had HLHS we made a plan for his birth day. Joe and his mom went with Will, and my parents and sister stayed with me. It was the best way we could make sure there was someone at both hospitals. Instead of the NICU at the Children's hospital, Will went to the PICU (apparently not uncommon for cardiac patients). In the PICU he got his own room and nurse, and of course all the customary wires, tubes and machines that come with intensive care.

Will's room in the PICU.

Once Will was stable, Joe came back to see me, and show me all the pictures he took. We decided we make beautiful kids, just sadly can't make healthy ones. That night despite having a baby in the PICU, we both slept. We had been running on empty for a week. Since Will's heart defect had been found neither of us slept well and sometimes not at all, but now he was here, he was stable and things were looking better. So we slept. And so did Will.
Our little man.

Monday, April 12, 2010

Less Than 24 Hours

There's less than 24 hours before Will's heart surgery now. I'm starting to get really nervous about it. The surgeon came into his room last week and explained to me a little about how his surgery would go and some of the risks. The risks are so scary. Here's the quick explanation of what the surgery is going to entail.

Will is having a coarctation repair. This means they will be fixing the section of his aorta that is really narrow and not formed correctly. They will make an incision under his left arm to get to his heart. Basically they will clamp his aorta on both ends of the coarctation and then remove the section that is problematic. Then they will stitch the ends back together and remove the clamps. During the surgery they will also close his PDA (which they have been keeping open with meds to help his heart function).

There is way more to the surgery than that, but I just wanted everyone to know the basics of what it is. He is scheduled for 8am tomorrow morning and once they have him intubated, all his lines put in and stuff (which should take about and hour or so) the surgery should take 2-2.5 hours. He will come back to his same room in the PICU and will probably be intubated for the remainder of the day. He will also have a chest tube in (to drain any fluid from around his heart) for anywhere from 1-4 days. As long as he is intubated and has a chest tube we won't be able to hold him.

My parents, Joe's mom & Julianna will all be at the hospital with us tomorrow. We decided we wanted Julianna to be with us tomorrow partially to hopefully keep us distracted but also so our family would all be together.

Please continue to pray for Will, that his heart will be healed & for strength in his recovery.

Please pray for his surgeons, that they are successful during the surgery and that everything goes smoothly.

And please pray for Joe and I and our families, that we can relax and find peace tonight and that tomorrow we can stay calm and be strong for both our kids.

THANK YOU SO MUCH to everyone that has shown their support for us so far, we greatly appreciate all the meals, the babysitting, the financial support, and the prayers...definitely appreciate all the prayers!

Sunday, April 11, 2010

At the Campground

Last night. we decided to get out of the house for a little while and spend some time somewhere other than the hospital, so we headed down to the campground. Julianna played on the playground and then we grilled out with Joe's sister and family, and then sat around a campfire. It was nice to get away for a little and have a tiny bit of a normal life.
Julianna loved the playground!


She even went down the "big kid's" slide.
Eating some yummy cheese popcorn around the campfire.

Julianna loves hanging out at Aunt Steph's camper.

Daddy's Boy

Daddy & son
He's just such a cutie!



Wednesday, April 7, 2010

Update on the Kiddos

Quick update on the kiddos...

Will had a PICC line put in today so they can remove the last umbilical line and the peripheral lines in his left hand and left foot. Sadly, it took the PICC nurse 4 tries to get the line (she tried each leg and his left arm before getting it in his right arm) and Will was not a happy camper. With this PICC line in he won't need any other IV's for awhile and they will be able to draw blood from it for labs, so no sticking of his heels. The PICC line took the place of 3 other lines, but he still has 5 leads (for monitoring his heart), a pulse-ox on his right hand and one on his left foot, and his NG tube. We have a "wired" baby.

Tomorrow, Will will probably be transferred to the NICU until his surgery next week. This is a big deal from what the nurses have told me. They only send cardiac babies to the NICU when they are extremely stable. I am really excited he is doing so well, but am kind of sad we won't be in the PICU anymore. I really like the nurses Will has had, and we have been spoiled by the really big private room that we could stay in if we want to. In the NICU he will share a "pod" with 6-12 other babies and we won't be able to stay with him. After his surgery next week though, he will be sent back to the PICU until he's stable again.

He started bottle feeding last night and has taken about half of a few bottles and today I was allowed to try nursing him. Unfortunately, he was so tired from dealing with getting his PICC line he fell asleep almost as soon as I started holding him and didn't even try to nurse. I'll get to try again tomorrow. I would love to get him nursing so when he comes home I won't have to pump.

Dr. M (our pediatrician) stopped in to see Will today. She was at AC's for a lecture and came to see how he was doing. We have really liked Dr M, but today she showed just how great she is. She sat and talked with me for almost 40 minutes about Will and Julianna. Most pediatricians wouldn't make that kind of effort. I'm really glad she was recommended to us.

Poor Miss Julianna is sick right now. She started with a runny nose and it has progressed to a nasty cough. It's making it very hard for her to get any sleep. Joe is going to take her to see Dr M tomorrow. We want to get her healthy as soon as possible for when Will comes home. It is also hard to not cuddle with her to comfort her, but we decided daddy would take care of her so I can (hopefully) stay germ free and can take care of Will as much as I can.

So right now we are hoping both our kiddos get better soon!

Tuesday, April 6, 2010

And Henceforth He Shall Be Known As Dr. Awesome

I wish I had more time to update my blog, but between recovering from my section, trying to spend time with Julianna, and spending as much time as possible at the hospital with Will, it just hasn't happened. When I do get home, I completely crash.

Julianna is so ready to have mommy and daddy home and not be going to grandparents' houses and aunts' houses. Today, we decided that Joe would bring me to the hospital and drop me off, then pick up Julianna and spend the whole day with her. They are picking me up this evening. We really wanted Julianna to come back up and see Will, but unfortunately she has a pretty yucky nose going on, so we'll have to wait until it's better. It's looking like daddy is going to take her to Sesame Street Live this weekend, so I'm sure she will forgive us some of our absence then.

Will is doing wonderfully! We still don't have a definite diagnosis, it depends on if you ask the cardiac surgeon, the cardiologist or the doctor who did his heart cath. But we do know it is either a less severe form of Hypoplastic Left Heart Syndrome or Shone's Syndrome. A quick description of Shone's Syndrome is that it affects the function and size of the aortic and mitral valves and coarctation of the aorta. It can include any combination of those 3 things. Will has issues with his aortic valve and coarctation of his aorta.

Yesterday, Will had a heart cath done. They went in to do a diagnostic cath and depending on what they found they would proceed to either an interventional Norwood (HLHS route) or would balloon his aortic valve to try and open it up more. It was very scary for us. Will was put under general anaesthesia and had to be intubated for the procedure. They went in through his leg and threaded a catheter up into his heart. They were able to better study how well everything was functioning as well as get exact measurements on size and pressure.

We asked for lots of prayers yesterday and they worked! His left ventricle will be able to support his body's blood supply! That was the most amazing news! It is slightly mis-shapen, but is large enough. This means as of right now he will not need to go the route of open heart surgeries. They decided to try for a 2 ventricle repair and give him a normal heart! They ballooned his aortic valve to allow it to open better and then the left ventricle won't have to work as hard. His left ventricle continues to show improvement everyday when they do his echo. Today was even better still.

We are so thankful for his cardiologist, Dr P (who shall henceforth be known as Dr Awesome), who stood his ground when the surgeons wanted to just do the single ventricle repair. He insisted they give Will more time and see if his heart improved, and IT DID! He still has a lot ahead of him in the next few weeks. Next week he will be scheduled for surgery to fix the coarctation of his aorta (severe narrowing and malformation). Basically they will make an incision under his left arm and remove the section of his aorta that is narrow. They will then stitch the remaining aorta back together.

We have been told by numerous nurses and Dr Awesome, himself, that babies do extremely well with the surgery to fix coarctation. Will's nurse yesterday said that the last baby to have this surgery was only in the PICU 3 days post-op and then was moved to a floor. After that, they were only in the hospital another 2 days! 5 days post-op they went home! Monday has been thrown around as a possible date for his surgery (but it will depend on how well Will is doing), so in theory he could be home as soon as next Saturday!

They have started to let us hold Will, which is so good for both him and us. Yesterday, I got to hold him for the first time since the day he was born. I was so happy! When Julianna was in the NICU we did Kangaroo Care, and it was so good for her. Her stats would be the most stable when she was being held. Will is the same way. His respirations stay steady, his oxygen levels stay high and he sleeps so well whenever we're holding him.

His arterial umbilical line was removed today and they are no longer doing hourly blood draws (they were done through that line). They were going to remove the one in his umbilical vein, but were unable to get a PICC line put in today. They are going to try again tomorrow. He has been taken off the Dobutamine (to help his heart function better) and now he is just on the prostaglandin to keep his PDA open until after the surgery, and one other thing (can't remember it's name) twice a day just to help his heart a little. He has been getting all his milk through his NG tube and is up to a little over and 1.5 ounces every 3 hours. BUT at 5o'clock today we get to try him on his first bottle feed! I am not allowed to nurse yet because they want to know exactly how much milk he is getting.

Overall, we are so happy with how things have been going. So far everything has gone exactly as Dr Awesome explained to us during our first consultation. The nurses here tell us that 99.99999% of the time when Dr Awesome makes a prenatal diagnosis he is correct. I cannot say enough how thankful we are for him! Other doctors may not have given Will the extra time he's needed to get better.

Keep praying for Will and his little heart. We may have unfortunately had 2 little ones with health issues, but both have been our little miracles and I firmly believe it is because of all the prayers they received! Thank you!

Hope you like the video of Will!

video

Sunday, April 4, 2010

A Rough Night But Improvement!

A rough night...

Yesterday, Joe and I were feeling very guilty that we only spent a few hours with Will. It's very hard right now because when we are with Will we feel guilty about not being with Julianna, and when we are with Julianna we feel guilty about not being with Will. So after Joe put Julianna to bed last night, he came back up to the hospital for a few hours to be with Will. We are both very glad he did.

Will has been slightly jaundice, so they decided last night to start him on photo therapy. Sadly this means he has to be in an isolette. I hate isolettes. Even though you can open the little portholes and touch him, I still feel like he is "off limits" from me. Like he is being separated from me even more. One of my happiest NICU days with Julianna was the day she was taken out of her isolette and put into an open crib. I felt so much closer to her. Since he is getting photo therapy, he cannot be swaddled and he loves being swaddled. So he is much more fidgety and not as relaxed. This means his respirations are a little higher and his oxygen levels are slightly lower. He also doesn't like the mask he has to wear over his eyes.

He managed to get irritated enough that he pulled his NG tube out. This meant they had to feed a new tube through his nose and into his belly. Joe said Will did NOT like that, and screamed the loudest he has ever heard him. They also had to then do an x-ray to make sure the tube was placed correctly. Needless to say Will was very agitated.

But the main reason I am glad Joe came to the hospital last night was that Will's nurse let Joe hold him! Joe hadn't held him since the OR the day he was born. And Will hadn't been held by either of us in 6 days (since the morning he was born). I am extremely jealous that I haven't gotten to hold him (I have to wait until he is off photo therapy and after his cath-details below), but I am so glad one of us got to. Will needs to be held and cuddled by his mommy & daddy. He needs to know who we are and that we are there. I know how important it was for Julianna to be held as a preemie. It helped her get bigger and stronger and I feel it would do the same for Will.

And improvement...

Will had another echo of his heart today. Joe and I were hoping to make it up to the hospital in time to be here for it, but they ended up doing it this morning, and we were still celebrating Easter with Julianna (I'll be posting about Easter later). Dr. K (one of Dr. P's colleagues) saw "good improvement" in the function of Will's left ventricle! We are taking this to mean there was significant improvement since his last echo on Friday.

We were still unsure about what procedure Will would be getting tomorrow, so we talked with the nurse practitioner on duty. Because Dr. K saw the improvement, they have decided to do a heart cath tomorrow. Basically, they will be doing some diagnostic testing during the cath to gather some more specific data about how well his heart is functioning. From that data they will choose one of two paths for his little heart.

The first path is a single ventricle repair (or bypass) in which they will bypass his left ventricle and his right ventricle will support his body. This is the 3 stage procedure that would require all the open heart surgeries (the treatment for HLHS). This is obviously not our first choice of treatments. This would be the direction the doctors would choose if they find his left ventricle is just unable to pump enough blood to support his body.

The second path is a double ventricle repair. This one has more options and would depend on just what parts of Will's heart need fixing. If they find his left ventricle is able to pump enough blood, then more than likely they will use a balloon to widen the opening between his right and left atria and also to open his aortic valve more. Both of these could be done while they are in the cath lab. At that point it would be some more waiting to see how well his heart would do. This is definitely the much better route.

He is the second cath "case" of the day, which means he will probably go for his cath around 11 or 11:30 depending on how long the first case takes. He will be under general anesthesia for the cath, which scares me, but I know he will be constantly monitored and that he will be surrounded by great doctors that are ready for any emergency should one arise.

He is definitely having the cath tomorrow, and possibly other procedures depending on how well it goes. We are praying that the cath shows even more improvement in his heart and that his left ventricle will be able to pump enough blood to support his body and that Will handles the anesthesia well. We are also praying that his heart improves quickly and that he will be able to come home with his mommy and daddy and big sister, Julianna, very soon!

Saturday, April 3, 2010

Finally an Update on Will & His Heart

I haven't had a chance to update at all this week on my blog. Baby K made his entrance on Monday morning and life has been a whirlwind since then. First off the long wait to find out his name came to an end and we were excited to announce that William Joseph (Will) was our little guy's name. I want to write all about the craziness that ensued the day before and on the day of his birth, but that post will have to wait. Today, I want to update everyone on how he is doing and what's going on with his little heart.

We really don't know a whole lot about what is going on right now. This wait and see thing is extremely difficult. His left ventricle is narrower than it should be and the free wall (the side of it that does not touch the right ventricle) is not functioning as it should. This is causing not enough blood to get pumped from the left atria out into the body. With the blood not getting pumped it is causing pressure in the atria which is then backing up into his lungs. Right now his PDA is still being kept open by medication and therefore the right side of his heart is doing most of the work to keep his body oxygenated.

The good news is that Will is keeping stable with only minimal interventions right now. He is on medication to keep his PDA open and dubutamine (sp?) to help his heart function. But that's it. He is not on any oxygen and is getting fed my breastmilk (fortified to 24 cal) through an NG tube (feeding tube inserted through his nose). Right now he is slightly jaundice, but his billi is still within normal range.

The reason we don't know a whole lot of what is going to be happening is that our little guy has apparently caused a "major intellectual debate" among the doctors here. He has decided he wants to create his very own heart condition. He doesn't have HLHS, but he doesn't not have HLHS either. I know, confusing.

Dr. S (the cardiac surgeon) wants to go ahead with the Norwood procedure (the first open heart surgery used to treat HLHS) and then treat him as though he has HLHS. This would of course mean multiple open heart surgeries and that eventually the right side of Will's heart would be the source of support for his whole body. This would be a definite "fix" to Will's problem.

Dr. P (Will's awesome cardiologist, who I may just start calling Dr. Awesome) has been repeating echo's of Will's heart every day and has noticed some minor improvement in the function of his left ventricle. He does not want to do the Norwood procedure just yet. He feels that there is a chance Will's heart could get stronger and not need the typical HLHS surgeries. He wants to place a stent in Will's PDA (to keep it open longer, since the meds can only be temporary) and then place bands around his pulmonary arteries (I think) to better control the blood flow to his lungs. This is also an open heart surgery, but it would give Will weeks to possibly months to see if he could strengthen his heart on his own.

They have also discussed doing a heart cath to open his atrial septum and relieve some of the pressure building up that way. This would just be a way to better stabilize him for whatever procedure they would choose to do next.

No decision has yet been made about which surgery/procedure they will choose to do, but we have been told that one of them will happen on Monday, so be prepared for something to be done then. They will be doing another echo tomorrow, and we're pretty sure that will make the decision. We are praying that there is more improvement (actually praying for MAJOR improvement) in his left ventricle function, and that we can go the route of giving him more time to strengthen his heart.

So if you would like something very specific to pray for, here are a few things:
*That tomorrow's (Easter's) echo shows major improvement in the function of Will's left ventricle
*That the doctors can make the best decision for Will.
*And that he continues to do as well as he is on his own.

We'll be praying for our Easter miracle.


The first I had seen my little boy since he was only a few hours old (discharge day).
Julianna meeting her little brother. When we left she said "Bye bye brother, I love you!" I cried.
Our little fighter!