Monday, June 20 2005 @ 02:11 PM EDT
We scheduled Zach's Glenn surgery for July 26th. Pre-op on the 25th.

Not sure how I feel about this since the doctor we saw for our second opinion suggested we wait a year for the surgery. However, our surgeon disagreed strongly and when push comes to shove, we went with the doctor we already knew and trusted. So there it is....As to the other doc's opinion, he said he was "old school" and thinks the kids do better if they can get bigger. Zach is still only 13 lb 5 oz at 10 months. Of course, our surgeon said Zach is bigger than the 3 and 4 month old kids who have this surgery. Both doctors agree that if his right vent hasn't shown much growth by now, it probably won't get much bigger. They do still think that this will be his last surgery based on the current size of his right vent. So we continue to hope for the 1 & 1/2 track. Now I just have to not go crazy for the next 5 weeks thinking about the surgery!

Tuesday, June 14 2005 @ 04:49 PM EDT
4 days shy of his 10 month birthday and he got it. I'm soooooo excited!!! It's really cute, he doesn't crawl on both knees. He has one knee down and the other leg he uses his foot. It's kind of a gimpy crawl but it is most definitely forward motion. Look out World, Here He Comes!! (pictures to follow, of course).

Wednesday, June 08 2005 @ 05:06 PM EDT
We went to the cardiologist today. Zach's oxygen levels were 87. On echo his shunt looks great, with good flow. This led her to say she thought we could wait as much as 6 more months for surgery. The chief card at the hospital and the surgeon both told us they thought we should go ahead and do the Glenn b/c Zach's RV hasn't really shown much growth and that it's not good to leave them with a shunt any longer than necessary as it causes wear and tear on the heart. I'm so torn about what to do. I was fully expecting her to tell us it was time for surgery and she didn't. Now I don't know which way to go. We are getting our 2nd opinion on Monday so I guess I'll wait to hear what that PC says. Part of me feels like we should just do the surgery and get it over with since he will definitely need it. The other part says what if something goes wrong. Will I feel like I could have had another six months with my son if I had waited. Crazy, I know. The PC told me flat out "Zach is not going to die during this surgery".

The best news is that she stopped his Captopril. She said he'll go back on it for a while, along with Lasix, after the Glenn but doesn't expect either to be lifetime. So now we're down to just 1/4 aspirin plus 1/2 a prevacid tablet each day. Yay!

Tuesday, May 31 2005 @ 04:23 PM EDT
For those questions that the card suggested we talk to the surgeon -- we're meeting with the surgeon on June 7th. Then we'll be at the Univ of Florida on June 13th for our second opinion. At that point I will (I will, I promise I will!) stop obsessing and accept whatever the results are for Zach's treatment. I have to admit that it is very hard emotionally to work this hard expecting to "discover" some miracle way to make my baby healthy. At some point you have to go with your Faith and accept that whatever is best for your child is what will happen.

First, I want to thank everyone for your encouragement and support. I am the best mom to Zach that I know how to be but it's nice to hear it

Wednesday, May 25, 2005 @ 03:13 PM EDT
John and I met with the Chief of Cardiology at our hospital (Miami Children's) on Monday. I brought a tape recorder because I knew I had a long list of questions and wouldn't remember everything he said. Anyway, I just transcribed the tape and thought you all might be interested. Most of it is relevant to 1 1/2 repairs and PA/IVS but I did ask the tough questions such as restrictions and life expectancy. If you're interested it's on "Dr. Zahn consult".

Thursday, May 19 2005 @ 03:00 PM EDT
I got a copy of the letter our surgeon wrote to the doc who will be doing the second opinion. Most of it is too technical for my knowledge but there are a couple of things...

Zach's Dx is critical pulmonic stenosis associated with significant right ventricular hypoplasia and a borderline tricuspid valve.

When Zach had his BT shunt they used a 3.5 modified Impra tube (does anyone know if this is "goretex" that everyone else here seems to have?

Zach has a patent shunt with some tenting of the right pulmonary artery at the shunt insertions (does that sound serious??) The left pulmonary artery is normal. Unfortunately, the most discouraging part of the recent cath procedure is that Zachary experienced very little right ventriculary cavitary growth and continues to have a severely Hypoplastic chamber with diminished inlet, outlet and trabecular zone (anyone know what that is????) There is a modest degree of tricuspid regurgitation.

It is our group's overall sense that it is unlikely he will ever achieve biventricular repair, but that with further ante grade flow across his pulmonary valve the right ventricle may eventually be suitable to assist in a 1-1/2 type of circulation.

Zachary has critical pulmonary stenosis which presented much more like pulmonary atresia intact septum without, thank goodness, the complicating issue of important coronary artery sinusoids. It is our groups' opinion that he should progress at this point towards creation of a bidirectional caval pulmonary anastomosis.

Tuesday, May 03 2005 @ 10:14 AM EDT
Is anyone here familiar with Right Ventricle tract reconstruction and/or valve replacement issues? I am re-reading "Heart of A Child" which was published by John Hopkins. This specific section is of interest:

"Hypoplastic Rt Vent with pulmonary atresia"...subsequent to the BT Shunt.. a second operation (at 7 months old) is done to remove some of the thick muscle in the rt ventricle and to put a patch on the front wall of the ventricle to give it a bigger cavity... a third operation is done to replace the pulmonary valve and close off the shunt.In this child mentioned in the book at 2 years of age her right ventricle was almost normal sized.

The book goes on to say:
"It is almost impossible to give a summary of all the possible treatment plans for the severe condition of Hypoplastic right ventricle. Often doctors try to paint an optimistic picture by talking about methods of improving blood flow to the lungs. There are many such methods, many of them good, but the small right ventricle is the crux of the problem and difficult to treat......In every child with pulmonary atresia the aim is to increase blood flow to the lungs as an emergency short-term measure, and to help the right ventricle grow so that eventually an almost normal circulation is achieved.

So it seems to me that everyone I know has only been informed about the shunt, Glenn, fontan track. I'm just wondering what else is out there and how do I found out about it? Anyone have any ideas?

Tuesday, May 03 2005 @ 11:11 AM EDT
I just emailed Zach's surgeon and he called me back in about 20 minutes! He encouraged me to get the second opinion so long as I used someone reputable and he said that Dr. Fricker is very highly regarded by him and the doctors at our hospital. He was so understanding and supportive. He said "I can't even imagine what it's like to walk in your shoes, I freak out taking my daughter to the dentist". He also said "you are doing a great job with Zach and I encourage to get this opinion and then set up an appointment with our office afterward and we'll be happy to discuss all your questions about Zach's future and your options". I was crying by the end of the conversation. It was so comforting to hear from him that he understands how difficult and confusing all of this can be and that they want to help. It makes me wonder why I never contacted him directly before. I always felt like the ped card was "in charge" of Zach's treatment and I should discuss my concerns with her but she is ALWAYS so busy that I felt guilty for taking up her time with my many questions.

Anyway, just wanted to share. I'll let you know what happens after the second opinion.

Monday, May 02 2005 @ 09:15 PM EDT
I requested information on getting a second opinion for Zachary and thought I would share my letter and the response. BTW, the Chief Surgeon responded to my request in about 4 hours!

From: Valerie Breder [mailto:valerie@bredercompanies.com]
Sent: Monday, May 02, 2005 5:05 PM
To: frickfj@peds.ufl.edu
Subject: Second Opinion

Could you please direct me to whomever I should speak to regarding a second opinion for my 8 month old son with Hypoplastic Right Ventricle with tricuspid and pulmonary stenosis? My son has been treated at Miami Children’s Hospital and has had two cardiac caths with balloon valvuloplasty of the pulmonary valve and a BT Shunt placement when he was 9 days old. The most recent cath was at 6 months old. I have been told that he should have the Glenn surgery at approx 10 months old (July 2005) and that there is a possibility that he won’t require the full fontan procedure. I am interested in learning if there is another method of treatment which might allow for growth in his right ventricle rather than the type of bypass afforded by the Glenn surgery. I have read of RV tract reconstruction and valve replacement which may allow for this growth. However, I hold no medical degree and look to those more knowledgeable for advice.

I was advised by the cardiac nurses at Miami Children’s that your facility is “cutting edge” and well respected and therefore I seek your advice in this matter. I have a home in Inverness/Crystal River and am able to bring my son to you for an evaluation. My son, Zachary, also suffers from a few minor issues which include GERD, kidney cysts, partial (slight) spinal fusion, an asymmetrical buttocks and microencephaly. Zachary is also below the growth curve for weight and height and at 8 months is currently 13 pounds and 24 inches.

I look forward to hearing from you at your convenience.

Valerie Breder

HERE'S THE RESPONSE I GOT BACK:

Miami is an outstanding Pediatric Cardiovascular Center. We would be happy to review studies (Cath and ECHO) that have been done or to see your child at the University of Florida and offer a second opinion. I am sure the Cardiologists and Cardiovascular surgeons would welcome other opinions on all patients with complex congenital Heart disease.

Dr Jay Fricker

Friday, April 22 2005 @ 09:43 AM EDT
Since Dorothy asked in another post, just thought I'd update. We saw Zach's therapist and she thinks if he does have hypotonia, its pretty mild. I'm hoping Des or Julie can tell me about the exercises that helped them. The strange thing is the neurologist didn't mention it when we saw him but he put it in his report. We don't go back to him for 6 weeks but I'll be asking about it then.

Tuesday, April 19 2005 @ 09:30 AM EDT
Hi All, I just got a copy of the report from Zach's visit to the neurologist back in February. His diagnoses was:
1. Microcephaly, which I think means "small head"
2. Partial fusion in his lower spine, which I was told shouldn't cause him any real concern although he will probably have arthritis there when he is older.
3. CHD, HRH (duh!)
4. Mild Hypotonia. This is the one I don't know what it is. Can anyone help? I tried to look it up online but it seems to go with a lot of other problems and I couldn't narrow down exactly what it is. Also, if anyone has medical research sites that they use and like, I would love to know where they are.

Tuesday, April 12 2005 @ 05:35 PM EDT
Thanks everyone, Zach is doing somewhat better. He's not running a fever and he's been on the antibiotic for 6 days now but he's still very clingy and whiny. Doesn't want to be put down to play or left by himself for a second. His hiney is still really sore and I'm going to try the vinegar bath and the cream Dorothy recommended. I'm thinking about taking him back to the pedi but I can't just go in and say "he's not back to himself yet" can I? Maybe it takes longer to get over this, I don't know. I miss my happy boy.

Thursday, April 07 2005 @ 02:07 PM EDT
We saw the PC today and she confirmed peri-anal strep. He seems to be responding to the antibiotic and feels a little better already. He did throw up his breakfast this morning but felt better after that. The PC checked his shunt and was pleased to see that it looks good. Also, his SAT's are back up. Yesterday they were 79-80 and this morning they were way up to 88 so that makes me feel better. Thanks everyone for your prayers and concern.

We just got back from the ped's office. Zach tested positive for peri-rectal strep. Apparently it’s the same as strep throat only young children and infants manifest in the rectum instead of the throat. His little butt hole is very inflamed and he's covered by a tiny red rash, face to toes. He's miserable and clingy and I've been carrying him around non-stop since yesterday which is why I decided to take him to the docs today just to check things out. The rash developed while we were at the doctor’s office! We are requesting prayers that Zach kicks this thing as quick as possible. His sats are down to 79-80 because of this. He was at 87 on Monday. Also, the cardiologist wants to see him tomorrow morning so I'll let you know how that goes.

Tuesday, April 05, 2005
I spoke with Zach's ped card at our appt yesterday and she said he will likely only have to be on aspirin for life. The captopril will stop after the Glenn (a month or two after the surgery, not right away) and he'll probably have to go back on lasix after the surgery but should eventually come off of that too. He's off the digoxin and she doesn't expect that one to be needed anymore. Also, our plan right now is that he has enough antegrade flow that he won't need the fontan surgery so of course, all of this depends on how things go as he grows. (If he ever grows, that is!).

Monday, April 04, 2005
We went to the ped card today. His SAT's were 84 awake and 87 when he fell asleep during his echo. The doctor said everything looks the same, no improvement or growth in his right vent. His shunt looks good. He's still pretty small (12 lb 4 oz today) so there's no rush on his Glenn. She thinks probably 3 months. One thing she mentioned was that headaches are a frequent occurrence after the Glenn and they seem to be more severe in smaller kids so she wants to fatten him up as much as possible before the surgery. Also, she stopped his lasix and didn't increase the captopril so we're happy for that. Not much else to report but overall we're happy he's doing well but wishing that right vent would grow!

Tuesday, March 29, 2005
I took Zach to his first Gymboree class today. He was soooo much littler than the other kids his age. Also he was the only one there not crawling. All of that makes me sad but I can deal with it. The thing that breaks my heart was watching him get exhausted so quickly. His lips turned blue and he had to stop and rest. He was panting and just totally worn out. When the "teacher" put all the toys in the middle of the circle Zach was the only one who couldn't rush forward to grab something to play with. Twice during the 45 min play class I had to hold him and rock him and calm him down. I guess I'm just having another one of those days when I have to realize that Zach's life won't be the perfect one I had planned for him and that he will have limitations to deal with. I cried all the way home from the class, feeling sorry for him and me too. I hope this gets easier but something tells me there will be more days like this. On a good note, Zach loved seeing other children. It was the first time I've had him around other kids and he was fascinated just watching all the other kids play.

So there it is. Whining Finished!

On a happier note, Zach's EEG (tests electrical activity in the brain) and advanced hearing test results came in today and everything is normal. YAY!

Wednesday, March 23, 2005
Unfortunately, Zach had another choking episode this week. We really thought he was over the worst of the reflux. He went 2 months with no problems. We're not sure what set this one off but we'll be meeting with the GI doc later this month. In happier news, Zach is doing great with sitting and standing. We also have "dada" and "baba" and "mmmmmm" which I think is "momma". Zach has also started finger foods though he's not too impressed and would rather have someone feed him. Next week we see the neurologist for an EEG and hearing test. We don't expect to find anything, this is just a precautionary visit. And, next week we start our Gymboree playgroup, Yay!

Friday, March 11, 2005
Just a quick note to announce that Zach is sitting up by himself. It just happened from one day he couldn't/wouldn't and then last night he started doing it. I started crying, I know, I'm a sap. I'm taking lots of pictures and I'll post some when I get them devloped.

Monday, February 28, 2005
Zach saw his cardiologist today and the news was pretty great. His SAT's (oxygen saturation levels)were 88 (normal levels for someone without a heart defect is 99 to 100% but Zachary will never be that high) However, his 88% is a little higher than before the balloon valvoplasty he had two weeks ago. He was about 80 before. His cardiologist is reducing his lasix (diurectic) to one dose a day and if he does fine with that then she will take him off it completely at the next appointment (1 month). She said she thinks he won't need the Glenn surgery (this is the second open heart procedure) for 6 MONTHS, but of course, she wants to see him monthly until then just to keep an eye on everything. Becasue Zach is still so little (11 lb 6 oz today) he isn't outgrowning his BT shunt yet. Also, he has bi-directional flow through his ASD (this is the hole betweem the left and right atrium) and he has the small amount of flow going through his right ventricle. So between those 3 sources and his size she thinks he'll be okay for another 6 months. She does think he will need it eventually though. The only concern is about his ASD. Zach's is fenestrated, she saw at least 3 large holes between his atria on the echocardiogram (a sort of ultrasound of the heart) and said there are probably more that are smaller. I get the impression that his ASD is like swiss cheese. I wonder how they will treat this if and when they ever decide to close it?

Also, it has now been 5 weeks since Zach has had a choking episode. I'm starting to believe the worst of the reflux is behind us. I just wish he would gain some weight. He was the same weight today that he was 12 days ago....

On a more exciting note: We just bought a house about 6 hours away and I've been up in Central Florida for the closing, setting up utilities, getting furniture, etc. We're very excited because it's on 5 acres and I can't wait till Zach can run on it and climb trees. We're so excited that we won't have to raise him in Miami! Of course, it will be several years before we can live there full time with Zach's impending surgery and John's responsibilities with the Palmetto Bay Village Council. But it will make an excellent vacation destination until then.

Friday, February 11, 2005
I spoke with our card last night and learned some more stuff about Zach.

His heart: after the card and the cath Dr spoke about Zach's case, they both feel slightly optimistic that he may, possibly not need the Glenn, we'll just have to wait and see. They are even more hopeful that if he does need the Glenn, he won't need the Fontan. This is due to the slight amount of flow he does have in his right vent which was observed all the way to the apex (bottom) of the ventricle and also that they were able to reduce the gradient pressure so much. The big issue is if his pulmonary valve will stay open and not close up like it did before. The card said we can only do so many ballooning procedures before it destroys the valve. So we're keeping everything crossed and only time will tell.

On the MRI: They ruled out spina bifida and tethering. He does have partial fusion of the vertibal bodies L3 & L4. I dont' know what this means yet but I did speak today to Zach's physical therapist and she said it's not too bad but it will cause stiffness in his legs and he may have some pain once he's using his legs to walk. She said there are lots of exercises she can do to help him with this. We are seeing the neurologist on the 25th to get more information.

Two other things: when Zach breathes he "pulls" pretty hard. You can see the indent under his rib cage when he inhales and it goes pretty deep. I spoke to the card about it and she said its related to his heart but there is nothing that can be done. It is also related to why he burns so many calories and has trouble gaining weight. The final thing is that he lost 4 oz (down to 10 lb 12 oz) since Monday. I guess it may be because of the hospital visit (not eating for 12 hours) but it is so frustrating because I am trying soooooo hard to get some meat on this kids' bones.

That's all for now (I think that's enough). Hope everyone is well.

Tuesday, February 08, 2005
Hi all , we are home. We were discharged about 9 a.m. Sadly, they needed the bed which was good for us as it got us home alot quicker than normal but sad for the parents whose children are being admitted.

I was able to get the MRI done before Zach's cath although moving a mountain may have been easier LOL. We should have the results by Weds.

The heart catheterization went fantastic and once they were in there and looking around, they decided to do another balloon of Zach's pulmonary valve. They had done this once when he was 2 days old and they found that it had almost completely closed up again. The cath Dr. said Zach's pulmonary valve is "a nastly little thing". But he said it is wide open now and the gradient pressure in his rt vent (right ventricale) went from 80 to 38. This should help encourage the rt vent to grow but there is no guarantee that the valve won't close right back up like it did before. He also said that he only sees minimal growth of the right ventricle compared to the last cath. Opening the valve may cause the ventricle to grow but he doesn't think it will be enough. He also said in the same breath that he has been wrong before though.

However there is definitely some flow through the ventricle. Also the right ventricle is pumping strongly and there is no stress/enlargement to the left ventricle. The BT shunt (Zach's first surgical procedure) still looks great and he does have bi-directional flow through his ASD (a hole placed between his right and left atrium to bring additional blood flow to his lungs). All of these factors, combined with the fact that Zach is still pretty small (11 lbs) result in:
TA-DA!!!! NO GLEN SURGERY FOR AT LEAST 3 MORE MONTHS!!!!!

We are so happy about that. The cath Dr. said anywhere from 3 to 6 months before he needs the surgery and our ped card (pediatric cardiologist) said "well, definitely at least 3 months and we'll see after that".

Also, I was finally able to verify that genetic testing was done, a chromosome and "fish" test and everything was negative.

Zachary was extremely grumpy coming off his anesthesia (prophynol) and it was a long day yesterday with him crying and coughing (from being intubated) until about 8 pm. Everyone thought he did very well though and he was extubated before leaving the cath lab and no problems with collapsing lungs like last time. By this morning he was his usual smiley self and he doesn't appear to have any pain at all. He is still hoarse and coughing but I'm told that will go away soon. He was the darling of the cardiac ward and many of the nurses came by his room to say Hi and remark on how much he's grown. Also, Zach received a bunch of get well E-Cards which we taped up all over his room. Thanks so much to everyone for sending them, for your support and your prayers.

Friday, February 04, 2005
Just a quick update. Zach has now gone 15 days without choking. He's gained 1 pound over the last month and is up to 10 lb. 12 oz at 5 1/2 months. Still not on the growth chart but definitely an improvement. We are all set up for his cath on Monday. We will be staying over night and I've requested our favorite Nurse, Richard. Pastor Carr came over this morning with my mom and we said extra prayers for the success of Zach's procedure and abilities of the doctors and nurses who will be caring for Zach. I'll update again once we're home.

Wednesday, January 26, 2005
Zach's cath will be Monday Feb 7th, we have to be there at 6 a.m. His card promised me that she hasn't decided that Zach will definitely need the Glenn and she will wait on the results of the cath before making that decision. However, we went over to the Cardiac ICU today to visit the nurses and two of them mentioned that Zach's lips were blue. Once they said something I could see what they were talking about but I hadn't noticed it before. Strange since his oxygen saturation is still in the high 80's which is good for him. We expected it to drop into the 70's before he would turn bluish and need surgery.

Also, we saw the neurologist and just as I suspected he said that Zach's head size is fine and proportionate with his height and weight. So he doesn't want to do a CT scan of his brain. However, he does want to do an MRI of his spine due to his crooked butt crack. He wants to make sure that his spine is not crooked also. I don't think there is anything wrong but my mom pointed out that when you try to get Zach to stand in your lap he won't put weight on his legs. I just figured he's too young yet. They'll do the MRI when he's at the hospital for his cath.

Anyway, we're home finally and no more appts this week YEA!!

Monday, January 24, 2005
We had our ped card appointment today and the good news is she stopped his digoxin, Yay! one less med! She also gave us the news we've been dreading, the Glenn is looming. Zach will have his cath in the next 2 weeks, we find out the exact date on Wednesday. She will be presenting Zach's case at the conference tomorrow. His Sat's are still at 89 so I didn't understand why she thinks he's ready but she said its because she didn't see any growth in his rt. vent over his appointment and echo from last month. I'm feeling very torn about this because I feel like if his Sat's are still so high, why should he have to have the surgery already. I love and trust this doctor, she is a genius but for my own piece of mind I'm thinking I will be getting a second opinion before I let them do the Glenn. I'm pretty much freaking out and John is out of town until Thursday no shoulder to cry on at home.

The other thing is sort of strange. She was examining Zach and he didn't have his diaper on and we were talking and he rolled over. She saw his butt and noticed that Zach's butt crack (sorry I don't know the medical term for this) is crooked. Of course we knew it but never thought anything of it. It's shaped kind of like a long "Z". Also, she pointed out that the muscles (butt cheeks) are two different sizes, one is larger than the other. She said this could be a sign of a neuromuscular problem and requested that we discuss it with the neurologist that we are seeing on Wednesday. I hope this is not a new "issue" for Zach and is just a quirky thing. I also realized that he will probably be teased in the locker room about this when he's older!

Next, I mentioned that he is passing "crystals" in his urine. Also, I got the results of his kidney test and his calcium levels are a little high. She said I should discuss both of these with the kidney doctor because they may be related but she didn't tell me what it meant.

Last, I asked her about the genetic testing and she said she tests all her patients the first time they are admitted to the hospital. She checked his charts and couldn't find the results although she is sure it was negative because that is something she checks "100% of the time". So her assistant is supposed to get it and mail me a copy for our files.

So that was our day. Sorry this is so long. We are starting the countdown and I don't know how I will cope with Zach having to go back for another surgery.

Tuesday, January 18, 2005
Zach is doing very well. He's only vomited/choked once in the last 2 weeks. He had physical therapy this week and kept rolling onto his back when his therapist put him on his tummy. Then he'd look up at her and laugh, I guess he thinks this is a new game. He's learned to blow rasberries which makes him giggle like crazy. This is his new response to everything you say to him, it's really quite hilarious. We're working on sitting up now. He looks really great and is eating about 20 oz per day. I'll update more once we've seen all the docs this week on his kidneys, brain, heart and reflux issues. Take Care!

Wednesday, January 12, 2005
Zach gained 3 oz in 6 days! Keeping my fingers crossed that we're over the worst of the reflux. Zachary hasn't thrown up in a week. I think the medication is finally working. Also, Zach rolled over for the first time this week. Next week is a big week. We have appointments with the GI doc, the nephrologist (to recheck the cysts on his kidneys), the neurologist (for a brain scan because his head is a little small) and his monthly synagis (flu) shot. The week after we meet with the cardiologist to check out how his heart is doing.

Thursday, January 06, 2005
We saw Zach's GI doctor and he put Zach on a high calorie diet with baby food or rice added to every bottle. We also got the "high flow" bottle nipples so he doesn't have to work too hard to get the food in. We will be going back in 2 weeks to check his weight and hopefully will find that he has started gaining again.

Wednesday, January 05, 2005
Zach saw the pediatrician today. He's 20 weeks old and weighs 9 lb 11 oz. He's only gained 2 oz in the last 2 weeks and she diagnosed him with "Failure to Thrive". We're seeing his GI doctor today who, hopefully, will help us figure out how to put some pounds on the little guy. He also got his 4 month vaccines today.

Wednesday, December 22, 2004
I forgot to mention two things. Zach's heart looks fabulous, they did an echo in the hospital and the shunt looks great. They see a small amount of growth in the right vent. and his SAT's are high 80's to low 90's. We won't have to have the cath until Feb or March because he is doing so well.

Also, on the day Zach was admitted, my step daughter Tessa was in a roll over car accident in Texas with her mom. Unbelieveably, everyone walked away unhurt but the car we just bought Tessa is totaled. She was side swiped by a drunk driver who then took off. Everyone was wearing their seat belts and no one even had to be treated.

Tuesday, December 21, 2004
Hi all, I haven't had a chance to read my messages yet but I wanted to give a short update. We got home last night. As I mentioned Zachary had two more episodes of choking and turning blue over a 3 day period. Both times mommy cleared his airway and the ambulance came and administered oxygen and he pinked back up. But we thought this was happening too often so we called the GI doc who wanted him admitted for testing. The did a PH probe which is a tube/wire down the nose into the esophagus for 24 hours to measure acid levels and how high they come up. This test indicated that his acid levels are not that high. They also did an Upper GI and found no abnormalities but they did see evidence of severe reflux. Later a resident suggested he see a neurologist to make sure the choking episodes weren't actually seizures (scary!!). The Neurologist says he thinks it is probably just severe reflux but they have requested that Zach has a cat scan and another PH probe done with and EEG and a polysomnogram which (I think) is some kind of sleep study??

The hospital was loud, Zach was angry about the whole thing and mommy got about 6 hours sleep over 3 days/nights. Last night however, Zachary actually slept 8 hours straight for the first time. I guess the little guy was as exhausted as mommy was. The GI doc increased his Reglan to more than twice what he was taking and we have to keep him upright for at least an hour after eating. I sure hope he outgrows this soon, I'm told that he will eventually outgrow it.

Thanks everyone for your prayers, its good to be back.

Saturday, December 18, 2004
Zachary has now had two more choking and turning blue episodes requiring CPR and fire rescure. His GI doctor is admitting him today for testing. Hopefully we get to the bottom of this, mommy's heart can't take much more. We will probably be there 48 hours or so. Love to all, I'll update when I can.

Thursday, December 09, 2004
Well, I think I told you all that Zachary, at 3 months old, finally figured out how to breastfeed. My SIL was here over Thanksgiving and she used to be a La Leche consultant. She just kept him to my breast until he got the hang of it. It was really awful, he was screaming like crazy and we had to strip all his clothes off because he was sweating so bad. The poor little guy, I would have given up but she's bigger than me and wouldn't let me! Anyway, he did get the hang of it and I've been breastfeeding ever since. I actually love it, I feel so Maternal LOL.

Now the bad news.... I took Zach in for a weight check yesterday and he's only gained 4 ounces in the last 18 days. He had been gaining about a half ounce a day so he should have gained 9 ounces during that time. The doc checked him out and found nothhing else wrong so we're assuming that the breastfeeding is too difficult for him. He does sweat when BF and usually falls asleep while eating so it makes sense that he's not gaining enough from it. The doc told me I could continue to BF during the night but that during the day I have to go back to pumping (YUCH!) and giving him the bottle with extra calories added. I'm really depressed about it but I know this is small potatoes in the scheme of things. I was just really enjoying the closeness of breastfeeding. Oh Well...

On to more exciting news...Zach has learned to stick his tounge out when mommy does it first. So Cute!

Wednesday, November 24, 2004
Yesterday was the most terrifying day of my life. I was home alone with Zach and giving him his 2 pm meds which include PolyviSol. That's the vitamin that always makes him gag. About 5 minutes after I gave it to him, he's sitting in his swing and begins to gag, then vomit. I go over to pick him up and clean him up and he's still choking. Then his eyes start bulging and I grab him out of the swing. He's making noises in his throat and his lips start turning blue. I'm trying not to panic and I turn him over on my knee and start smacking his back. Vomit and saliva are blocking his mouth and nose. I take my finger and try to clear his airway but his jaw is tightly clenched. At his point his eyes are panicked and pleading with me to help him. I pry his jaw apart with my finger and pull out some goop from his mouth then turn him back over on my knee and bang, bang, bang his back. By this point his whole face has gone from blue to gray. I grabbed the phone and call 911. Then I grabbed the bulb syringe which you get in the hospital and use that to suction his nasal passages. That seems to help and when the ambulance gets to my house about 2 minutes later I'm walking with Zach in the front yard and trying not to hyperventilate myself. I start crying when I hear the siren coming. Zach is now breathing but still a lovely shade of blueberries. The paramedics take him from me and again turn him over and pound his back and he vomits a little more, then they put him on an oxygen mask and his the SAT machine and his readings were first about 85 then quickly to 95 with oxygen. They wanted to transport him to the hospital for observation and I was able to convince them to take us to Miami Childrens. By the time we got there he was his usual smiley self and had charmed the female paramedics, nurses, etc. He was still quite pale but his lips were again bright red. Of course, we spent the next 4 hours waiting to be discharged but who's complaining. They told me to watch him for signs of aspiration pnemonia such as sleepiness, lack of appetite or fever. Its now the next morning and Zach had a good night. He slept quite well once daddy, John, came and picked us up at the hospital and was quite the piggy at mealtime. Anyway, my lesson here is that I need to re-take the CPR class because I didn't give Zach CPR because I was afraid I would do it wrong and blow to hard and hurt him or something.

Friday, November 19, 2004
Zach had his card. appt yesterday. He's gained 3 lbs in 2 months and now weighs 8 lb 11 oz at 3 months. The news is optimistically hopeful. They see blood flow in the rt. vent all the way to the apex (bottom) which is good news, she also said the rt vent is contracting strongly, also good news. His sats ranged from 89 to 96 while we were there. She also saw bi-directional flow through his ASD which she said is a positive sign of the rt vent continuing to work although I don't understand why that is. She determined that he doesn't have a VSD (don't know if that is good or bad). He doesn't have to go back for a month which is the longest time we've had between appts. His next appt is Dec 20th (yea, right before Christmas, yech). At that appt we will be setting him up to go in the hosp for an exploratory cath and possible 2nd ballooning of the pulm. valve if his pressures are high enough and they think it will help him. I'm pretty nervous about it but of course, in the big picture, a cath is nothing compared to surgery. However, as I was telling my husband, when Zach had his BT, I loved him but didn't know him yet. Now I know him and he knows me, we spend hours sharing smiles and I don't know how I'm going to let go of him so they can do the procedure. At least I know all of you will be here for me if I meltdown!

Friday, November 12, 2004
Zach's doing fabulous and growing bigger and cuter every day. We meet with the cardiologist next week who will let us know when, and if, he has to have the next open heart surgery.

Monday, November 01, 2004
This is one of those days where I have to confront Zack's future all over again. I am fed up with all the medications he has to take every day. He only weighs 8 lbs and he has 14 doses of meds every day! I am sick and tired of greeting my angel every morning with a handful of syringes. And I know that this will go on forever, it makes me so mad (not sure who I'm mad at though). I'm not sure when I will just accept Zack's CHD and deal with everything that goes along with it but it won't be today. Today I am raging against the fates that have set our lives on this difficult path. Last night Zack threw up his whole meal twice. It was my fault because I took him to my SIL's party and too many people wanted to touch and hold him. Since most were family from out of town who hadn't seen Zack yet, I gave in too many times. I just know he was overstimulated and that upset his already unstable tummy. I can say I learned my lesson and no more large parties for us.

I was talking to my husband last night about Zack's glenn surgery which will happen when his SAT's fall into the 70's. He's still in the 90's now. My husband refuses to discuss it and says he'll worry about it when the time comes. I was telling him that I can't imagine handing this little guy back over to the hospital. I don't know how you moms have been able to handle this. Anyway, I've decided to start seeing a therapist because I need to talk about this stuff and John prefers to be an ostrich about it (head in the sand). I get so angry at him sometimes. He doesnt' even know the names of all the meds Zack takes much less the dosage. Sometimes the responsiblity is too heavy for me to bear alone. Thank God my mom has been great and she's as knowledgeable about Zack's needs as I am. But I can't talk to her about my worries because she gets so upset and starts crying which sets me to crying, you get the picture.

I hope that eventually I will come to accept this future that has been dealt to my precious son but today won't be that day!

Monday, October 25, 2004
Hi All, I haven't updated in a while so I thought I'd share our good news. Zack saw his ped card today and has SAT's of 93! He's also gained 6 ounces in the past weeks and is now up to 7 lbs 10 oz. He actually is starting to have meat on his bones.

Wednesday, October 20, 2004
This has been the longest week already. Monday morning 9 am. ped. card. appt. Zack & I were on time but the doctor didn't show up till 10! Some good news, some not. His SATs were 90 but his respiratory rate was 60 which she said was a little high, probably due to him starting the captopril this week. Also he only gained 1 ounce since Friday. She said we should consider starting him on rice cereal but he's only 9 weeks old. Seems a little young to me but what do I know. Anyway, next was his pediatric appt at 11 but we didn't get there until 11:15 due to the card appt taking so long. When we got there the Dr had already left for lunch so we had to leave and come back at 1 ARGGGHH. So, Zack got his first DTPP vaccine which they give as four separate injections (OUCH) Boy did he scream! My mom was with me and she starting crying too!

Next day, Tuesday we had an appt at the hospital for a kidney ultrasound and bladder scan and lab work. They told us to be there by 7 am so we left the house a 5:45 am (PS: I'm not a morning person) When we got there they said our appt wasn;t until 10 am (JEEZ). So they sent us over for the lab work first. They took the blood from Zack by a heel prick but the lab tech didn't put enough pressure on the wound and I later noticed Zack was still bleeding all over his blanket (JERK). Then come back to radiology waiting room and there is a very sick infant hacking and coughing all over the place. I told the receptionist I couldn't wait in there with that sick baby and she said "sorry that's all we have" so Zack and I waited in the hallway for an hour till they called us for the bladder scan. This is done by inserting a foley catheter in his teeny tiny little penis (OUCH) and filling his bladder with fluid and then pinning him down to take pictures and see if any liquid backs up into the kidneys. Luckily, everything looked good, no problem there and once they pulled out the cath, little Zack whizzed all over Daddy's shirt (HA HA). Then back to the waiting room for another hour. Finally they call us for the kidney ultrasound. The tech made me put Zack on his belly which he hates but by that time he was so exhausted they he only whimpered instead of screaming. Oh, did I mention I didn't get a chance to breast pump for 9 hours, so I was leaking all over my shirt and had Zack's blanket draped over my chest. Then up to the kidney doctor's office for the results of the ultrasound where we waiting another 1/2 hour. The results were good and the cysts on his kidneys seem to be going away. Nothing for us to do but they will recheck it in 3 months.

And today.... 9 am speech therapy evaluation. The therapist said Zack has great sucking strenght (I know, I've tried to breastfeed OUCH). But after she gave him a bottle he threw up all over her (HEE HEE) She wants us to get a GI doctor and get treatment for reflux (YEAH ANOTHER DOCTOR). Then home to pump and give Zack his noon meds and off to the lactation specialist who gave me the lecture about how breastfeeding is actually less tiring for babies then bottle (YEAH SURE) and that I should be only breastfeed and why should I have to add calories to the breastmilk. According to her, breastmilk had everything a baby needs. GIVE ME A BREAK, I mean does she have ANY experience with heart babies????

Tomorrow I'm going with my hubby to meet the doctor who will perform his snip snip operation (if you don't know what that is, just ask) and that's it for the week (YAY!). Friday, Zack and I will spend all day playing. I can't wait!!!!

Monday, October 11, 2004
I am so shocked and hurt and sad and angry right now I just don't know what to say. I haven't "known" Joanie that long, being new to the world of CHD. But she was so welcoming to me & Zack and such a beacon of hope to a mom still learning what all this heart stuff is. I am so sad for her family, I can't imagine the pain of losing a child or sister. It also forces me to think of Zack's future and I hate it. John keeps telling everyone that Zack will have his 3 surgeries and then live a normal life just like any other kid. But I don't think that's true. I hate to think of him dealing with his health when he should be living a normal life as a kid, a teenager, a man. Why does this awful condition exist? Why my child, or yours? I'm so upset, I can't stop crying, partly for Joanie and her family but also for myself and my family too. She was such a loving and supportive person. She always had a kind word for me when I had questions or concerns about Zack and I must admit, I used her as an example of how Zack would be okay, he would be able to live a great life with his heart condition. God, I just don't know. This whole situation is so hard. I want to hold my son and protect his fragile little body with mine.

I'm sorry, I don't mean to upset anybody. I just needed to get this out and unfortunately there's no one in my "real life" that could handle this or understand how scared I am right now. I expect you are all going through the same emotions too. Thank God for this group, I don't know where I'd be without your support.

God Bless Joanie's family and give them strength to bear the pain and God Bless all of you and your beautiful children.

Friday, October 08, 2004
Hi All, I haven't been able to post for a couple of days because we've been back and forth for medical appointments (5 in 2 days!). First the card: she's very pleased with Zack's progress, SATs of 94 - 96. He also gained 1 pound this week. He's 7 weeks old and weight 6 lb 9 oz. That is not even ON the growth chart which was very upsetting to me. However, she said the important thing is that he's following the "trend" of the growth chart and gaining weight.

We also saw a nephrologist (kidney doctor) who wants to run a bunch of tests including a bladder scan. I'm not sure I understand what he's looking for but he's convinced that kidney problems go along with heart problem and Zack has several small cysts on both kidneys. They did a urinalysis and his white count was high but he thinks its because Zack is recovering from his circumcision. He did start him on amoxicillin (great another medication! yikes).

Next we had to go to the lab for blood tests. They were actually pretty great. I told them right off how upset I was about the ER visit and she said "no problem, we'll just do the heel stick and not upset the little guy" Yeah, he did great with it and the tech said she got plenty of blood to run the tests (CBC and liver profile).

Next day was a trip to the heart surgeons. They had left 2 stitches in Zack's chest! Those were removed pretty quickly and painlessly and he said Zack could finally get a bath and go in our swimming pool in 1 more week. I've been excited about introducing him to water since we are huge swimming/fishing/boating fanatics here in South Florida.

And finally, a trip to the pulmonologist (lung doctor). This was a meet and greet as he will be the one giving Zack his monthly synagis shots. He said they cost $1500 a pop and Zack will need them monthly until he's 2 years old or finished with his surgeries, whichever comes first. He listened to Zacks chest and said the lungs sound clear which is great considering the collapsing lung problems he had in the hospital.

All in all a very tiring couple of days including my mom's birthday dinner, Zack's first restaurant. He was great and the life of the party. Grammy just held him all evening with the giant smile on her face! The best news was that daddy took all the night feedings so except for pumping, mommy got a great night's sleep last night and today - no committments! Last night I walked into the living room and John was sound asleep with Zack snoozing on his chest. It was so sweet and I wanted to get a picture but didn't in case the flash would have woken them up.

Monday, October 04, 2004
Zack is 7 weeks old now and he sure is a grumpy baby. I've been able to get maybe 3 smiles out of him all week. Also, he always wakes up crying, even if I'm right there as he's waking and I pick him up right away, he still cries first. He does have periods of quiet time but he doesn't make much eye contact with me. He prefers to look at the overhead lights or out the windows or at the TV. Is this normal baby behavior? My first son is 19 years old so its been a long time ago but I seem to remember him smiling all the time. Maybe he was older than 7 weeks? Zack is having his development assessment next week and I can't help remembering this show I saw on TV called "The boy who looked at windows". It was about an autistic child.

Monday, September 27, 2004
Sorry for the long delay in sending an update. Zachary has been home for almost 2 weeks now which means we've been busy and I haven't had a chance get near the computer. He's doing fabulous, eating, sleeping and pooping as all newborns do. His surgery was a great success and we are thrilled with his treatment at Miami Children's Hospital. I can't say enough about how wonderful everyone there was.

Zack will probably have to have another heart surgery sometime between 4 and 9 months old. For now we're going to take the time to enjoy our wonderful baby boy.

The support of our friends and family has meant so much to us during these difficult times. We couldn't have done it without all of you!

Wednesday, September 15, 2004
We are home! We got home yesterday. No ng tube or monitors. Just this very tiny (5 1/2 lbs) baby boy. I am in a walking daze right now, he's eating about 30 cc's every two hours. John managed to sleep through ALL the night feeds but did get up and handle the 6 am, 8 am and 9 am feedings (Yes, he was hungry 3 times in 3 hours). He's taking Lasix, Digoxin, aspirin, and vitamins (all at different times of the day) That's been the hardest part so far. Gotta run, he's crying. I'll send an update when I can.

Take care all!

Tuesday, September 14, 2004 Came Home From Hospital

After 1 month at Miami Children's Hospital, I am finally on my way home. What's with this hat, Mom?

Thursday, September 09, 2004
Zack has made much progress since our last update. He is now off all medications except oral baby aspirin which he will continue to take once he comes home. We are working on his eating which he has to learn as he has only been tube fed so far. He's doing well and progress is slow buy steady. Once he's getting enough nutrition he will FINALLY be sent home with mommy & daddy. Thanks everyone for the great support and pray that IVAN misses us!

Wednesday, September 08, 2004
Today they switched Zack's feeding in hopes of fattening him up so we can take him home. They said he has to have 40 cc's at each feeding. I give him a bottle for 15 minutes and then whatever he doesn't finish they give him by NG tube. Of the three feedings he had today the first time he took 20 cc's, 2nd time 25 cc's and 3rd time 15 cc's and after each they gave the rest by NG tube. However, he has thrown up after all three feedings. My questions are:
1. Does 15 minutes seem like enough time for him to try to eat on his own?
2. Any suggestions on how to get him to keep it all in such as holding him a certain way?
3. They are starting him on Zantac which is supposed to help him keep the food in and pass it thru more quickly. Has anyone heard of this?
Until he's eating the whole 40 cc's by himself we can't come home. I'm trying not to be discouraged but Zack is 3 weeks old today and I want him home! Your advice and wisdom would be most appreciated.Also, just to give you and update, all tubes have been removed now and I can hold him and walk around with him, Yeah! He's getting his medications orally now and he's taking 1/4 of a baby aspirin and digoxin and lasix and they've told me he will continue to take these when we go home.

Monday, September 06, 2004
Yeah, I have great news. Well we got the same old mean nurse again but this time the doctor overruled her and said she wanted Zack to have a bottle today of breastmilk. The nurse gave him the first feeding and he drank 5 cc's. Then I fed him 3 hours later and he drank 6 cc's! He did well but I did have to keep waking him up. From reading the messages here, I gather its pretty common for them to tire easily so I wasn't too worried about it.

Also, even better news!! Our ped. card. came by to check on him today and said she expects him to be released by Friday at the latest. The nurse showed me today how to give him oral medications which was pretty easy and I've gotten pretty comfortable with handling him even with the remaining IV's in him. Now when I get there, I just walk in, change his diaper and pick him up without waiting for anyone's permission!

My husband was home cleaning the house like a crazy person to get ready to bring our son home. It was great!!!

Sunday, September 05, 2004
Well, I just got home from the hospital and Zack is doing very well. I held him on and off for about 8 hours today and it was great. Yesterday the neonatologist told me I would be able to try and bottle feed him pedialite today. They want him to start with that before breastmilk as its easier for him to digest in case there is a problem. So today I'm all excited and ready and the nurse on duty wouldn't let me. She came up with all these reasons including that he needs to be off the primacor first and that he doesn't seem ready to her even though he is sucking away at his pacifier! I'm so frustrated. I guess she has more experience so maybe she is right but I had my hopes up. I know he needs to be eating before he can come home and I feel like we are being delayed another day. Also, with the hurricane she said they prefer to keep everything the same until the regular staff is back on duty and not make any changes during a "stressful time". Yeah, well it may be stressful for them but Zack and I have been dealing with this stress for almost 3 weeks already! She was just so negative about everything. Because of the hurricane, she has been on duty for 3 straight days so I'm sure she was especially cranky but that's not MY FAULT!!

Anyway, just wanted to get that off my chest. Zack is off all breathing support (he had a canula (sp)but that's gone now. He's only on primacor, lipids and breastmilk now. I feel we are close to going home but no one has said anything yet. Hopefully now that Frances has finally passed things will get back to normal and we'll hear something soon.

Now that the time is getting close to taking our baby home, I'm getting a little nervous about being able to care for him by myself. That's normal right?

Saturday, September 04, 2004
Hi All, yesterday and today were GREAT days. I've held Zack a dozen times since I last posted. He's doing really well and they've increased his breast milk. Tomorrow they're going to remove the NG tube and I can try bottle feeding the breastmilk. Today he has a slight fever but they haven't found any infection. They decided to give him antibiotics to be on the safe side. Also, I've been changing diapers and today will be giving him a bath. All of this seems to point to us going home soon, don't cha think????

The hurricane has become a nuisance with just a little wind and rain and I'm so glad for that! Everyone is hiding inside their homes so the traffic to and from the hospital has been non-existent for a change. All is well here and I feel like I'm walking on clouds these days! Much love, will update soon and send pics of my handsome son without tubes, yeah!

Friday, September 03, 2004
Hi all, I haven't been on line except to send our updates but I did see the concerns about Hurrican Frances this morning. Just wanted to let you know that the storm is now slightly north of us so its expected to hit Palm Beach or even further north. We put up our storm shutters yesterday just to be safe. The storm is very large so we will get some high winds and rain but hopefully the damage won't be much.

Zack is safe and sound at the hospital which also serves as a storm shelter. Its very crowded here now with people coming in to wait out the storm. Also, ALL the nursing staff is on duty during a hurricane so Zack has THREE nurses all to himself!

Zack is doing well and got off the vetilator yesterday. To me it looks like he is struggling to breathe but the nurses tell me they aren't too concerned. His Xray yesterday showed a cloudy area on his right lung so they've been giving him aerosol treatments and have restarted the CPT treatment (the banging on his back) to help clear up his lungs. You can hear how congested he is when he breathes. This morning's Xray looked better and they are not considering putting the vent back at this point so we are very happy!

Also they've started him on breast milk via the NG tube. He's off all meds but will be started on aspirin today which will continue when he comes home. He only has two tube left in him, one in the arm and the other through his umbilicus. If things go well these will come out in the next day or two. Hopefully we will be able to hold him soon.

Wednesday, September 01, 2004
Zack is doing even better today. He is now off ALL medications, YEAH. They are waiting one more day to take him off the ventilator because his blood gases are high (anyone know what that is???). In all other ways the little guy is doing just great with alot more movement and looking at mommy's face now!

Tuesday, August 31, 2004
Zack is doing very well and today has begun opening his eyes and moving his hands and feet. We hope he will be taken off the ventilator today or tomorrow. Zack is setting the pace for his recovery. They've already begun reducing and eliminating many of the medications he was on. His next big steps will be to breathe on his own and then to begin eating and gaining weight. Once he's managed all that we'll be brining our little guy home FINALLY!!

Sunday, August 29, 2004
Zack is doing well has SAT's at mid 80 to 90, BP normal, heart rate 170's. There was a concern about his sugar levels (anyone know what that means?) They are pleased with his progress but are going to wait until monday to close the chest. There a several blood clots in his chest cavity that will be removed before they close the chest (is that normal?)

I must admit, it is so hard to see my tiny baby with so many tubes and the open chest with more tubes. I can handle all that but the hardest part is that they give medicine to make him paralyzed so he won't move and he's just lying there so very still with the
ventilator pumping his lungs.

It brings tears pouring on, but I'm getting better and best of all John has been much more understanding about my need to cry thanks to all your wonderful posts and reassurance from my doctor that all is normal with me. He hasn't cried at all and I don't know how he keeps it all inside. Men (at least my husband) are so different in handling their feelings.

I managed to take an extra nap today which helps and I'm prepared to get through tomorrow with the hope for Monday which will end the heavy sedation. I miss having him squeeze my finger with his little hand. He looks like a baby doll, so still. I'll be glad when I'm dealing with the trouble and tempers that some of you are so lucky to have from your children!!

Sunday, August 29, 2004
Hi All, Just wanted to share the good news...Zack looks so much better today. Alot of the swelling has gone down and he doesn't look like a cabbage patch doll anymore :) His nurse and doctor are very pleased with how well he did last night and so far today. His numbers are all good with SAT's in high 80's and heart rate at 165. The sugar levels are normal now and they said it was probably just from all the fluids they've been giving him and now his body has to get rid of them which he is doing. His creatnine is a little high and they are monitoring it but not too concerned (anyone know what that is?).

They've schedule to close his chest tomorrow at 8 a.m. and have stop the paralyzing meds which take about 24 hours to get out of his system. They said I should be able to see his little eyes opening by late today or tomorrow. After they close his chest they will monitor him the rest of the day and start reducing the other meds the next day. They've stopped the dopamine and reduced the lasix today but he's still on versid, epinephrine, primacor and a couple more I can't remember.

I'm feeling much better and just so pleased with how he is doing. The card explained to me why they went ahead with the BT instead of waiting longer to see if the valvuloplasty would work. His PDA was pumping too much blood and was pointing at his pulmonary valve so blood was being pushed back into the valve which could have caused damage and regurgitation. They tied the PDA closed during the surgery. Anyway, its clear from how well he is doing that the BT was the right way to go.

We hope to have him home in 12 more days if everything goes well. His lungs are finally behaving and staying fully inflated! The next major step is to get him off the vent. and then get him to start taking a bottle. What a great day it will be when I get to hold him and feed him! Yeah Zack!!

Much gratitude for all the wonderful support! We can see the end in sight and we know we'll have our beautiful little boy home soon.

Saturday, August 28, 2004
Surgery lasted 6 hours because his little lungs kept collapsing, first one then the other. He's recovering now and hopefully his lungs will stay inflated. That seems to be more of a problem than his little heart!

I handled seeing all the chest tubes better than I thought I would and veiwing some of the websites of the members here helped prepare me for it. They didn't close his chest in case of swelling which freaks me out a little but said they will close him up between tomorrow and monday depending on how he does.

You guys were right, nothing prepares you for how much you love that little angel once you set eyes on him!! It's been a hell of a day so I'm signing off for now. I'll send another update tomorrow. Thanks for all the responses, it's great to go online and find your responses. That's really kept me going throughout this very long day!

Friday, August 27, 2004
Zack is in surgery getting his BT shunt right now. The card spoke with us this morning and said his heart rate yesterday was very high which was probably due to too much blood flow from the PDA. They let that close up and his rate came right down and his lungs are both fully inflated. They decided that now while all his counts are good and his lungs are good is the right time to go ahead and do the BT shunt. They didn't want him to struggle through the weekend and possibly have more complications and they convinced us this was the quickest way to make him feel better and get him home. I kind of thought it might be a good idea to wait and see if the valvuloplasty would work on its own but they convinced me there was little chance it would be enough on its own.

The good news is I should have my baby home in 2 weeks, barring complications.

Thursday, August 26, 2004
Zack's left lung is starting to inflate, they've been doing CPT respiratory therapy every 2 hours. That's the banging on his back thingy. Also, last night they took him off the prostaglandin. They card. was concerned that the PDA was too big and he was getting too much blood flow to the lungs and that's why it was "whited out". It's now partially inflated. They have him on another med (can't remember the name) that is helping the systemic blood flow (to his hands and feet) and they said that one is helping alot. The good news is that his heart seems to be doing okay without the PDA. Dare I hope that he may not need the BT? It's really too soon to know. I know that the PDA will close quickly after the prostaglandin is stopped and he's been off it for about 12 hours now. That's probably too soon to know anything but I keep praying!!

Wednesday, August 25, 2004
Hey Guys, Zack was doing so great and was off the ventilator on Monday. Tuesday morning I got to hold him for the first time and was trying to feed him from a bottle. He wasn't strong enough, he kept gasping and gagging. It was so hard to watch. Then Tues. night had his right lung collapse. They got it reinflated by morning but then his left lung collapsed. They still haven't been able to get it up and he's back on the ventilator. My heart is breaking, this is so much harder than I expected. We don't have any idea when he'll be coming home and I can't even hold my own baby, I just keep stroking his tiny little hand and crying my eyes out.

FYI, this isn't related to his heart condition and everything still looks good with the valvuloplasty they did on his pulmonary valve on Friday. The problem is they can't wean him of any of the meds (prostaglandin, dopamine, etc) until he can breathe on his own and get rid of the ventilator. They've told me it's uncommon but not unheard of for the lung to collapse and they may go tomorrow with a fiber optic camera into the trachea to look at the lungs for any obstruction...

I thought I was so ready for all of this and I did all my research and found this group. The real thing hurts so much.... Sorry for all the self pity. I'm back off to the hospital, it's gotta get better soon right?

Tuesday, August 24, 2004
Zachary was taken off the ventilator yesterday. Mom and Dad finally got to hold our precious boy for the first time today.

Friday, August 20, 2004
On Friday he underwent a pulmonary valvuloplasty which the doctors say went "perfectly". We are now in a waiting period to see if this will be enough or if we'll have to go ahead with the BT Shunt or possibly a stent inserted to keep the PDA open permanently. He is doing well and they started him on a feeding tube with my breast milk yesterday. The feeding has made him more alert and last night I got to see him open his eyes for the first time. They are planning to take him of the ventilator sometime today and hopefully I will have the chance to hold my beautiful baby boy for the first time today.

Needless to say I pushed to be released from the hosptial and was able to go home Friday morning. The nurses called me "quite the trooper". My response "just try and keep me separated from my baby boy!"

We are traveling back and forth to visit Zack several times a day and thus far are very impressed with the caring attitude of all those caring for our son. I will send more news as soon as I can and figure out a way to post pictures of our handsome son for all to see.

Thursday, August 19, 2004
Well, as I suspected Zack wouldn't wait to next Wednesday to see the world. He arrived the same day I sent my last post on August 18th. I went into labor about noon and the contractions were fast and furious. By the time we got to the hospital they were 2 minutes apart. All was going well until during a very strong contraction they lost the baby's heartbeat and the decision was made to do an emergency C-section. They "found" the heartbeat again very quickly but decided to go ahead with the C-section and Zack was born at 2:38 p.m. They took him from me right away although I did get to give him a quick kiss on the cheek. He was transported to Miami Children's Hospital within a few hours and I saw him in the travel incubator for about 10 minutes and he was gone.

Wednesday, August 18, 2004
We got the news today, I'll be delivering next Weds. so I probably won't be on the board for awhile as we deal with Zack's first surgery. Of course, ever since they told us, I've been having contractions so I hope I can hold out for one more week!

Please keep us in your thoughts and I'll be back in touch when we get home in a couple of weeks.

Thanks again for all the wonderful support we've received from all of you.

I Was Born! - Wednesday, August 18, 2004

Welcome to the WorldZachary Richard Breder

Tuesday, August 17, 2004
We met with Dr. Burke on Friday. He seems very confident in how to treat Zack and kept telling us not to worry. He's very proud of his staff and they've been working together 9 years. He answered all of our questions very directly and without hesitating. It's scary to put your child's life into the hands of someone you've just met but I think we're in the right place. I have to say though, he was all business!

He's talking about Zack needing probably the BT and the Glen but of course he kept saying we won't know for sure until after he's born and they get a better look at his heart. I think he was saying this is a 1 and 1/2 repair? Does that sound right? They will also probably do the balloon procedure but he didn't have much hope that it would cancel out the need for the other surgeries. Sometimes I get so overwhelmed by how much stuff they'll be doing to our tiny baby!!!! He also said Zack will probably be on lifelong medication which is something I hadn't thought of.

We asked about transplants and he said: If the anti-rejection medications weren't toxic AND if there were enough hearts available AND if they didn't have to be redone every few years THEN a heart transplant would be an option but since NONE of those are true it wouldn't be considered for Zack.

After that we were given a tour of the CICU and met the staff of nurses and doctors there. They were all warm and friendly and very supportive, not too mention there were SO many of them available for the 5 babies in CICU. We got a glimpse of a baby hooked up to all those tubes and machines. It was quite frightening to see. Now I'm trying to prepare myself not to fall apart when it's my baby with all those tubes and beeping machines attached.......

I figure since my due date is 2 weeks from tomorrow, I've probably got about a week till we get to meet our precious baby. Can you believe that with all of this going on, I'm actually having some fear of the delivery (just like most moms at this stage I guess). It seems like I shouldn't be allowed to worry about the regular mom fears since Zack has bigger issues for us to worry about!

Monday, August 16, 2004
We were lucky that the storm passed North and West of us. (Not so lucky for the folks who got it though). My husband is on the City Council for our city here and they are sending our police department and other city workers up to help out with those in the damaged area. My husband really wants to go and help but of course, with Zachary due in a week or two I couldn't handle him leaving right now. We've made our donation of battteries and flashlights. I here there are about 1 million people over all who don't have power.

I've been trying to ignore the idea that if another hurricane shows up, I'd have to deliver Zack through a hurricance. I know, its not likely to happen but this is Florida in the middle of hurricane season!

Wednesday, August 11, 2004
Zack has stenosis of the tricuspid and pulmonary valve, not atresia (valves are slightly open and they can see a small amount of blood flow). This means there is a small, slight but not probable chance that they may be able to balloon the two valves to get them to open further, and if they can, then Zack's right ventricle may grow to normal size without the need for further surgery.

The ped. card. says not to get our hopes up but of course we are.... Otherwise she said he may need only the BT shunt (at birth) or only the Shunt (at birth) and the Glenn procedure (at 6 months old) and maybe not all 3 procedures (without the Fontan procedure at 4 yrs) because of that small amount of blood flow they are seeing. Of course, they will only know for sure after he is born when they can get a clearer picture.

So please join us in praying "Grow your heart, Zack! Grow your heart!!!"

Wednesday, March 17, 2004 - Ultrasound

My first picture

Wednesday, March 17, 2004 - It's A Boy!!!!!