2 year cardio checkup

Iz had her biannual cardiology workup this morning.  She had an EKG and Echocardiogram and then we visited with her cardiologist.

She has no changes to her treatment plan and no restrictions, which is fantastic.  We like hearing that things are fairly stable.  We like hearing that we don't need to add in any medications or monitoring.  We like hearing that she can stay on her every two years schedule.

But I'd be lying if I said this visit hasn't left me with some pretty severe anxiety.  Yes, she's doing well.   Yes, she gets to continue living her life as she has been these last few years.  Yes, she's clear to keep on keeping on.

But for the first time since she recovered from surgery, for the first time in over five years, for the first time since she left the hospital, her heart is worse than it was the last visit.  The changes are minor, so minor that her cardiologist isn't worried, so minor that she doesn't need to come back early for monitoring, so minor that she doesn't need to do anything differently,  but it is still a step in the wrong direction.  It is still an undesirable trend.  It is still not as good as last time.

Her echo was great.  Her EKG is showing some issues with the electrical system.  We got a list of symptoms to watch for--if we see any of them, we go back for a checkup.  We got a reminder of the importance of her scheduled checkups.  More than one reminder--Dr B may have said its not really a big deal right now but he repeated four times throughout the visit that we MUST keep her next appointment to get a new EKG and checkup.  Which, of course I was going to do anyway.  I keep a reminder in my phone about setting up the new appointment when the time comes (Oct 2019 will remind me to schedule the next November appointment).

So I keep reminding myself it was a good visit.  Don't borrow trouble.  And in two years, hope things have swung back to the "getting better" side of things.

Things are calm

I tend to update a lot when things are scary because the very act of writing about it tends to help me get centered and prepared for the fight ahead so when things are calm, I tend to drift away.  Doesn't seem quite right, does it?  When my kids look back on these pages someday, they're going to want to know where all the happy times are instead of just the bad.  I suppose if I make a resolution to start updating regularly with the good things, there's a high probability I shall fail and still continue to just wander by randomly :\  Hey, at least I'm honest, I guess?

OK, update:

• Izzy has graduated to cardio visits every two years--she is stable and doing great
• we had another baby!  Little W joined us in June.  He had a heart murmur at birth but by the time we got our appointment with cardiology, there was no murmur but he does have some turbulence in one of the pulmonary arteries because it makes a sharp turn but he should outgrow that--as the artery widens and the curve gentles, the turbulence will abate.  His echo looked fantastic
• We moved!  Several states away and while it was scary to leave all we knew behind and have to start over with a new medical and school team, it has been a FANTASTIC decision.  Don't get me wrong, we had an awesome medical team back in our last home but it still felt like we had to fight for a lot of things.  In our new state?  Its so easy to get referrals, insurance covers things our last state didn't, and nothing has been a fight.  I go in prepared to do battle and instead they are suggesting referrals I never even thought of.  The school is the same way!  I had to fight every step of the way before and the new school wants to help and added to their services at their suggestion.  No fighting necessary.  Awesome :)
• We got a dog, a german shepherd named Mia.  She was an owner surrender and her somewhat neurotic behavior at times makes me wonder if they didn't always treat her the best but she's smart and eager to please and wedged herself firmly into our hearts and family.   When the warm weather returns, we will again get to enjoy long walks in the fantastic hike n bike trails here with her.

Yearly cardio visit!

Izzy had her yearly cardio visit last week. There were some very heavy rains the night before so there was a lot of flooding and getting to the hospital was a bit of an adventure!  When we finally got there, parts of the hospital, including the parking garage, had been flooded and were being cleaned up and dried out.  We were sent up the road a bit to park and then shuttled to and from the hospital--I'm pretty sure the shuttling was Izzy's favorite part :)

Izzy went silent during the appointment and spent most of the time either staring at the floor or hiding her eyes. However, she was mostly cooperative and did respond with head shakes and nods and didn't hide under any chairs or tables ;-)  She didn't completely shut down so it's an improvement!

Her echo looks great so we have clearance for another year.

B has a heart murmur

Today was B's first cardiologist visit.  He's been having some minor symptoms that could be linked to CHD (and that could also be many other things) and combining that with our family history (two siblings with CHD and a great uncle that died a week after birth), he got a referral to be checked out at the cardiology clinic that diagnosed S.

He did fantastic :)  He was very cooperative and followed directions really well.  His EKG was normal but the cardio wanted an echo as well because Iz and S both had CHD.  It turns out that B has a heart murmur--first I've heard about it!  But his echo went beautifully and they got many really clear pictures that show no defects :)  Our tech was very thorough and it took a long time but they wanted to be really sure he was okay!  So his murmur is being classified as an innocent murmur and he does not need follow-up care and it shouldn't effect him at all.

I was hoping for everything being normal but I'll take an innocent murmur over a more serious diagnosis :)

More referrals!!

My busy little B had his yearly checkup today and he was having a good day :)  He was cooperative and talkative and his pediatrician was so pleased with the progress he's made from when she first met him.  Those two years of special ed preschool have done wonders for him.  There is still plenty to work on, though, but she is also feeling hopeful about things because Dr. B (neuropsych) has made more progress on diagnosing him so he can get therapy in the last few months than I've been able to do in the last three years.  You get the right team and you finally start getting somewhere!

One thing we talked about is his excessive sweating.  You look at him wrong and he sweats.  His teacher often has to change his clothes at school because he is soaked.  Everyone else will be fine and he will be bright red and dripping.  When he was younger, it was bad but not quite this bad.  It has a fancy name, hyperhydrosis, and our first step if seeing if it is just "normal" for him or has a medical reason is to send him over to cardiology.  I wanted him evaluated by cardiology anyway, just in case, so two birds and all that, right?

I also brought up sending him over to neurology and she said she was going to ask us to go so she and I are on the same page there :)  B used to have the same symptoms as Iz that led to her epilepsy diagnosis and while it doesn't happen as often to him, I still see some of those things.  And Dr. M (pediatrician) said sometimes the extreme meltdowns and sudden end of them are actually seizure behavior.  So we'll have him checked over and see what happens.

Progress :)

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

The snow is almost gone....

On Wednesday the wind and snow was so bad we could barely see the house next to us.  Thursday was COLD COLD COLD and so very icy that we were out of school for a second day.  Friday was a bit warmer but our driveway was one big sheet of ice--by the afternoon, though, it had weakened in the sun and S and I were out there breaking the ice up and shoveling it away.  Today?  Almost all the snow has melted away and it is wet and muddy and looks kind of dismal.  Not the last we are supposed to see of snow, though!  Forecast says more snow later this week.  We need about three more inches to break a record from the late 1800s.  I'm so ready for this winter to be over :p

I finally got the call to schedule Izzy's MRI--got through all the screening questions and registration information and the lady hadn't realized Izzy was a heart patient.  So she can't schedule the MRI until we get cardiac clearance because of the sedation.  She called me Friday late afternoon and I immediately called over to the cardiologist office but her cardio was already out of the office.  The nurse pulled all the paperwork and filled it out and said he sometimes comes back into the main office before he goes home (he has three different offices plus he sees patients at the hospital as well--I am always pleasantly surprised when he stops by our room when we are inpatient for things not cardiac-related :)  its nice to know he keeps an eye on her even when she's not directly under his care!) so she might be able to fax it over the same day.  No phone call back from MRI Friday, though, so hopefully Monday.  The sedation makes me nervous but now that its going to happen, I kinda just want to get it over with so I don't have to worry about it :p

S goes to cardiology

I have wanted the boys to get checked out by cardiology since Iz was born but the old pediatrician didn't feel it was necessary.  The new ped, however, seemed surprised neither boy had ever been checked out so she referred S and told me to remind her to refer B next time he has an appointment.

So off we went to the Children's Hospital on Friday for our just in case appointment to get the all-clear on S's heart.

First up was the EKG......which was abnormal :/  Honestly, I was expecting everything they did to be normal normal normal so it was a little nerve wracking to hear abnormal instead.  So off we went for a very long, very thorough echo where the tech checked and rechecked and got a second opinion on a couple areas of S's heart.

Good news!  At this time, S's heart looks great and there are no problems.  The cardiologist said that, in his experience, EKGs like S's are usually seen in kids who have had holes that closed on their own.  It causes a little rewiring of the electrical impulses and that causes the abnormal EKG.  We will never know for sure but the theory is S had at least one hole in his heart that is now completely closed.  S did have symptoms as an infant--sweating (particularly when nursing), falling asleep while eating, slow weight gain, rapid/loud breathing, fast heart rate, cold extremities and bluish tint to hands, feet, and sometimes lips.  But I didn't know then that those things could be heart related and the pediatrician at the time said they were normal.  I'm just glad that today everything looks good, even if we have a funky EKG :)

Waiting for his echo

Cardiology

Iz's cardiology appointment was fantastic.

When we got there, we were the only ones in the waiting room and she had fun walking around and bringing me magazines off the tables :p  She loves to just go, pick one up, bring it to me, go back, repeat, over and over LOL  The tech came out and called us back and she did NOT like being in the EKG room.  She fussed and cried as soon as we walked in and so we got a weight of "about 37 pounds" because she wouldn't hold still long enough for a more accurate weight.  Height was a no-go as well so they got a ballpark figure from the one time she held still for a second :\ 

She was not having any of it when it came to getting the stickers on for the EKG so the tech asked if he could get her a sucker--we didn't even open it, she just held it and looked at it and he got the EKG first try :p

Next we headed to Dr. E's office--she opened her sucker and started licking it and when the doc came in, she fussed at him about having to lay down for an echo until we reminded her she had a sucker.  She HATES having people touching her scar so echoes are usually one long scream-fest but that sucker kept her calm and quiet and she laid there watching the screen working her way through that tootsie pop ;-)

The extra heart sounds the doctors were hearing and the clicking I sometimes hear are expected and normal for her--her cardio said that some of it is caused by the fact that she has two superior vena cavas instead of just one (a normal one has a branch from the left and one from the right and they come together in a y before entering the heart.  Iz's branches never came together so she has two separate single vessels that feed into her heart.  They come from the correct places and both connect to the proper chamber of the heart, they just are separate instead of a y) and some of it is simply a side effect of having surgery and having heart tissue disturbed and "remapped".  He says it isn't something to take for granted that the extra sounds are always OK and that is one reason why she has yearly appointments so we can take a good look at her EKG and echo and make sure there are no other problems causing extra sounds.  As long as her tests look good (for her), the sounds are just her normal.

The best news of all?  Her right pulmonary artery stenosis is GONE.  Her surgeon thought there was a chance the narrowed artery could open on its own and grow to match the left once her heart was fixed and the right side was being used normally (the left was overworked because of the blood flowing the wrong way through her VSD and being overcirculated through her lungs) and he was right!  It has caught up and her function is beautiful :)

Dr. E said that her heart will never be "normal" because her anatomy and surgery means her EKGs and heart sounds will always be "off" but her function right now is great and at the moment, she has no restrictions.  She has her own "normal" and he is optimistic that she will hold steady for a long while.  Just don't forget to keep those yearly appointments to make sure ;-)

3 month post-op cardiologist visit

Iz was mostly cooperative during her EKG but she let it be known that she did NOT like the Echo. She does not like her scar to be touched by anyone but me and occasionally Daddy and even then, its only when she asks for it to be touched (she loves to be massaged and asks for it daily). Poor little mite looked so betrayed when we let Dr E continue to press the wand on her scar :/

It was a great appointment, though! Her blood pressure was really great, 94/60. She was 29.5 inches and 19 lbs 13 oz--gains in length and weight :) Last appointment back in May two weeks after surgery she was 29 in and 14 lbs 4 oz so Dr E was quite pleased with her growth.

The echo shows that her right pulmonary artery is still half the size of the left one. But it does not affect her at all so as long as it doesn't start restricting further, we should be fine. Dr E said that even if it does start restricting, the left will pick up the slack and we wouldn't see any outward signs and it would have to be picked up on echo. Fingers crossed that it just hangs out as is and never needs intervention :p

There are no leaks around her patch and he can see where her heart tissue is growing over and across it--he said eventually it would be completely surrounded by her heart. Reminds me of a tree we saw one day when we took the kids to the natural history museum; it was growing around and over a sign pegged to it. Won't be too long before the sign is completely enclosed by the tree.

The best news of all was that her heart is back to normal size :) We were warned that the enlargement would persist for months, maybe even a year, so I was hopeful that it would have gone done some but was not expecting to hear it went all the way :)

We have been cleared for yearly visits. One hand, that is fantastic! On the other hand, eek, I have to wait an entire year to be reassured that nothing has gone wrong? OY.

Wish us luck....

Tomorrow morning Iz has her three month visit. Well, slightly over three months since her cardio was on vacation when she hit the three month mark from her last visit (two weeks after surgery, one week after discharge). She has been doing well--off her meds, less sweating, less hard and fast breathing, more energy, more weight gain. And, yet, I am nervous. So many what-ifs. What if the patch is leaking, what if the heart is still significantly enlarged, what if the stenosis in the PA is worse. What if what if what if.

We will know soon enough, eh?

Cardiology Checkup

Today was Izzy's one week from discharge cardiology appointment (tomorrow will be two weeks out from surgery). She is healing great :) Dr E was very pleased with her EKG and her echo and says her incision is healing nicely. He said to finish out her blood pressure meds and lasix and when these bottles are gone, go ahead and take her off them. If she shows any signs of heart distress, bring her in and they'll check her over to see if she needs the meds for a bit longer but he's pretty confident that once the next few weeks of meds are over, she will be okay without them. Best of all, she has been cleared to wait three months before her next appointment :D YAY!

One week, two weeks

Tomorrow, Wednesday, will be one week since Iz was discharged from the hospital. She has her cardiologist appointment in the afternoon and we had better see some weight gain on this girl :p I cannot believe how much she has been eating this past week--its like she is making up for all the times she was just too tired and didn't eat all that she could have. A few weeks back, she gained in length but not weight so her cute little pudgy thighs slimmed down and she no longer had the little leg rolls. During her bath tonight, what did I see? Little pudge leg rolls! Not as big as before but they are coming back so surely that means a nice gain, right? Unless she slimmed down somewhere else so she could grow her leg rolls back :p

On Thursday, she will be two weeks out from open heart surgery. It is hard for us to believe since she is twisting and turning and bouncing and rocking and rolling and sometimes even sleeping on her tummy/chest. It seems like she should be taking it easier but our girl is ready to play hard and long. Amazingly enough, even with all of her movement and play today, she did not need painkillers until bedtime when it all caught up to her.

She is amazing :)

Amazing :)

Part of our discharge instructions were to give Iz a bath every day (either sponge or in her baby tub with just her butt in the water since her incision can't be submerged) so we can gently wash the incision site with warm water and baby soap and then rinse and gently pat dry. Dr W says he uses a plastic surgeon's closure to minimize scarring so there are no external sutures, just the steri strips. The strips are starting to peel off--none have come off completely yet but we are getting a few tiny glimpse of the incision underneath.

The little bit we are seeing looks AMAZING. It looks like someone drew a line on her chest with a pen. We were warned that some people, even though the initial scarring is thin and light, will grow scar tissue and make it bigger and wider and raised but we are hoping Iz takes after me--my first c-section scar was nearlly non-existent. You had to look really really closely to see the very faint line. Of course, crappy closure work by my next surgeon means I had a big ugly bumpy scar--the surgeon who delivered Iz repaired a little bit of that and the scar, while not as faint and fine as the first time around, looks better. Anyway, back from the sidetrack ;) At this point, we are very optimistic about Iz's chances of having almost no noticeable scarring. We've good luck with Vitamin E creams and oils in the past with clearning up small scars from our klutzy boys and Dr W says that he has seen them help and encourages us to go ahead and use it after she is all healed for a few times a day for the next year to help shrink the scar down.

I know it seems vain to be worried about her scar. It probably is. But my girl has been through so much already and will continue to go through so much--even though her main defects are "fixed", she will see a cardiologist for the rest of her life. The RPA stenosis could require procedures in the future. Her cardio team told us she is at higher risk for valve and heart muscle problems later on and she has to be monitored for those issues for her entire life. She has months of meds and checkups she hates ahead of her. When she is a teenager, I would really like if she didn't feel self-consious about the scarring. She may be one of those who view it as a badge of triumph. Or she could be one of those who feels like it just screams she is different when she doesn't want to be. I don't know. I'd rather she not have to worry about it.

Still in the hospital

So yesterday we went in to the ER because Baby I was just acting "off" and not feeling well and they ran a bunch of tests to discover she has the flu. They said normally, they would send her home with care instructions but because of her heart, they wanted to keep her overnight for observation. She was slightly dehydrated because she hasn't been eating all that well so they had her on some IV fluids. Once she was peeing well again, they took her off to see how she would do because IVs plus her heart meds aren't always the best combo. She has little interest in eating and has thrown up several times as well so today she went back on the IV and we are here for at least one more night. Hopefully tomorrow she can not only eat a decent amount but keep it down. However, she had another big vomitting episode a little while ago so I dunno :/ The husband went home tonight to be with the boys so its just Baby I and I tonight. She is actually sleeping in the crib instead of insisting I hold her so I should be sleeping, too, but I can't :/ Every little noise has me popping up to check on her.....

They still have her on the Tamiflu (not Theraflu as I typed last night LOL) but I don't think she has managed to keep even one full dose of it down......

Her cardiologist, Dr E, came to the hospital to see her today--he thinks she is looking really good, despite the illness. He was very pleased with how well she is breathing right now :)

Surgery Consult, PT II

The surgeon we were meeting with, Dr W (Chief of Cardiovascular Surgery), got out of his surgery right about the time we were finished with the echo so we had a short wait while he got ready for the appointment. He came out, introduced himself, and let us know he was just going to run over to cardiology to review her echo so we wouldn't have to wait for it to be sent over.

When he was done, it was time to talk surgery. He said she is doing fairly well and we don't need to go in immediately but that he wouldn't wait longer than a month or two because he doesn't want to risk permanent damage to the heart and lungs. So he checked his schedule and his first available is April 10th so we are on the books. He did warn us that he has been seeing a lot of more urgent cases lately so it is possible we could get bumped for a baby (or babies) that need surgery right away. I'm okay with that. If my baby was in a position where she needed her surgery immediately, I should hope another family would be understanding and willing to give up their spot if their baby is like Baby I and has time before surgery becomes an immediate need. Part of the workup was to give her the official Failure to Thrive diagnosis because of her inability to gain weight. He said not to worry about it because in his experience, after surgery she will be an excellent gainer and will soon lose the label :p

Dr W was very thorough in going over everything going on. He talked about the size of her VSD and drew some diagrams about where it is and how it is effecting the bloodflow. He believes the disparity in the size of her Pulmonary Arteries is being caused by the extra bloodflow from her VSD and once the hole is repaired, the PAs shouldn't cause any problems but they will keep a close eye to make sure and Baby I may end up needing a cath at some point. The extra vein Dr E mentioned is an extra Superior Vena Cava that comes in from the left side (LSVC). Dr W says it is considered within the normal for hearts because it doesn't cause any problems and they usually don't even know people have them unless they are looking for something else. It makes the surgery a litte more complicated because they have to adapt the bypass but he says he's done it before and it isn't a big problem. The ASD was almost closed last month at cardio and they didn't see it on the echo this time--Dr W isn't sure if it is closed because they didn't get a clear view of the area during the echo because Baby I was not the most cooperative ;) However, part of her pre-op is another thorough echo so he will take a good look to see if he can see a hole so he can be prepared if it definitely needs to have a stitch or two to close it.

He talked us through the surgery, what to expect, what would happen, how long it normally takes, his expectations for recovery, etc etc. So much information.....We also met with the nurse after meeting with Dr W and she repeated some of the same information and gave us a folder full of handouts and policies and things. And a script for Baby I to go get her blood typing done so they can order the blood for the bypass machine.

It was a very long day and I am sure I have forgotten many things--information overload!

Oh, and Mr. Piper and I were talking about Dr W on the way home--we both got the same impression of kindness, knowledge, reassurance and calm. Excellent qualities to make you feel better about the fact that your baby will soon be undergoing such a major surgery...

Surgery Consult, pt I

Thursday was Baby I's surgery consult. Normally, we go to the Children's Hospital in the mornings for her Synagis so there is no problem with parking. Her surgery consult, however, was in the afternoon and we just kept going up and up and up and up in the parking garage. The fourteenth floor was the top and we finally found a parking spot. I was out of the car helping guide him in and he finally gets the van parked......and he can't open his door because of a cement column LOL So out he pulls and manages to turn the van around (very very narrow lanes and parking spots) and pull in the other way so he can get out.

We head inside and go to registration and sign in. And wait. And wait. And wait. No one is there, we are the only ones on the list, no one seems to know where the registration people are or where to find them and we just "need to be patient." Good thing I am a stickler for being early whenever we have an appointment at the Hospital. The registration lady finally comes back and tells us we don't need to register (despite the instructions telling us to register when we got the confirmation message) but actually just need to grab a pass from the front desk (that no one ever asks for or looks at so what was the point?).

Up to Pediatric Cardiovascular Surgery we go where the check us in and send us over to the Cardiology department. Where we wait. And wait. And wait. They let us know they are running late but the surgeon we are meeting with after the echo got pulled into surgery today so he is late, too, so no big deal, I guess :p Baby I had fun watching people :)

They get a weight check on her and she has eked out a few more ounces! Yay! Up to thirteen five :D She puts on a tiny tiny hospital gown--I didn't even know they made them that small. It was so cute but my husband refused to take a picture of her in it. He says he doesn't want reminders of this time. I think that some day, she may want to know about the scar on her chest and she might want to know these little details and pictures. And a picture of her smiling and looking cute in a little yellow gown isn't so bad :) I took a few with my phone but she was having such an active day they are a bit blurry and some have parts of her head cut off because she was bouncing around :p If I think about it, I'll edit once I am on my computer and upload the best of them here :)

So now its time to do some more waiting in the back hallway of the cardiology department until an echo room opens up. It seemed to take forever but that may have just been because the chairs were really uncomfortable and Baby I decided she needed to nurse RIGHT NOW. Nothing like nursing thirteen pounds of wiggle worm on an uncomfortable chair ;)

We finally make it into an echo room. At first, Baby I reacts as she does to all of her echoes--she is happy and smiley and there is a little leg kicking and some grabbing of the wand and attempts to chew on the tech's fingers. And then she decides she has had enough and oh, the crying and the squirming and the tiny impotent fury. The next hour saw us trying everything we could think of to keep her calm and still long enough for the tech to get a few pics--cooling her down with damp cloths, playing a musical/lighted toy, letting her chomp on my finger, holding her. patting her, stopping to nurse, stopping to cuddle, breaking out the toy again, trying a cartoon on the tv, singing to her, etc etc. Fun times. Eventually, between the tech and one of the cardiologists, they got what they needed and we headed back to the surgery department.

To be continued......

The Call

We got The Call yesterday.  The surgeons agree with the cardiologist--she needs Open Heart Surgery.  Which we knew--Dr E knows the criteria for surgery and wouldn't have sent her to them for referral if she didn't meet those criteria.  But I guess there is still this little part of you that thinks well, maybe, just maybe, they will have some alternate treatment that will not require stopping my baby's heart......

We have an Echo scheduled for March 15th and then meet with the surgeon immediately afterwards to discuss where we go from here (more testing, when to do surgery, etc).  At this point in time, we are scheduled to work with Dr W, the Chief of Cardiovascular Surgery at the Children's Hospital.

We had a quiet night

On Wednesday, we talked a bit with Dr E about Baby I's reflux.  He thought starting some Zantac would be a good idea to make her comfortable leading up to surgery and during recovery so yesterday we headed in to Dr A's office to get a script as well as to have her cough checked (again).  Lungs are still clear but poor little baby girl just sounds awful :\

Got the script filled for her Zantac and gave her the first dose last night--she hates it even more than the Lasix and Aldactone!  Poor little gal chewed me out for making her take it.  However, it has made me cautiously optimistic since we had a rather quiet night last night.  She still woke up often to nurse (in the last week or so, she just doesn't have the energy for a full nursing session so she eats for a minute or two and then has to rest.  Instead of a feeding taking ten to twenty minutes, it takes about two hours) but there was no crying or restlessness or misery.  And no crying and misery this morning, either.  She is back to being a "happy spitter" instead of a miserable one.  Eating has become so tiring for her that it breaks my heart to see any of it spit back up but at least it isn't hurting her anymore :)  My hope is that this is not a fluke and she continues to be comfortable!

Open Heart Surgery

Today was Baby I's five month cardiologist appointment.  Every month, we go in expecting to hear its time for surgery and each month we are both relieved and scared that it is postponed another month.  Relieved because it means she is doing okay, considering, and that there is still hope that her heart will repair itself and she will never face the trauma of surgery.  Scared because it means another month of watching her struggle to breathe, of worrying about every cough and gasp and ounce, of anxiously watching to see if she begins to turn blue.  Surgery could fix all of that, could ease her breathing, help her gain weight, give her a normal thump heartbeat instead of her swish-swish-swish beat.

This month, there is no postponing one more month.

Good news first--her ASD (which was medium sized at birth) is almost completely closed!  That one has steadily shrank and the cardio thinks the surgeons may place one stitch in it to pull it closed and help it seal the rest of the way (or it may be completely closed on its own by the time she gets to surgery).  One less thing to worry about :)

Her VSD, however, still has not budged.  It is oval shaped, 5x9mm, and is the defect causing most of the problems.  She has been on generic Lasix and Aldactone since she was two months old to help reduce the fluid buildup on her heart and lungs but its worse.  He upped her dose of Lasix to try and help her out until surgery but the left side of her heart is now enlarged.

The artery that wasn't growing properly at her last echo?  Even worse now :/  It is the Pulmonary Artery leading to right lung (or was it the left?  I left my notes in the van and the husband took it to work) and it is half the size of the Artery leading to the other lung.  If they both were small or large, it wouldn't be as big a deal but the large difference in their sizes is a problem.  He thinks the surgeons may want to do a cathartization before surgery but they may decide to repair it while she is in surgery.  One more thing to wait and worry about.....

The last thing he told us is that she has an extra vein leading into the heart that shouldn't be a problem, it will just mean they have to place an extra line or something during surgery for bypass.  He said that during pregnancy, there are four veins leading in and at birth, they pair up and fuse together to form just two veins.  Two of them did fuse for Baby I but the other two remain separated.  I have a new thing to obsessively research while I wait ;-)

Oh, and the other worry was the fact that she has completely fallen off the growth chart.  She was up to twelve pounds nine ounces, not quite one pound from her last visit.  Every ounce was hard earned but she just can't get enough of them and feeding has become increasingly difficult for her between the reflux and how tired she gets.  

Next step is for Dr E to send Baby I's file and echo pictures and EKGs to the surgery committee for review.  The committee meets on Tuesdays at the Children's Hospital so we have at least a week before we hear anything, possibly two if the surgeons are called into surgery and can't make the next meeting.  Then we will get a call to schedule any needed tests/procedures before surgery and find out how soon the surgeons want to operate.

It just doesn't feel real.