Madeline Jeanette made her debut into the world at 14:35 hours on Wednesday, February 27th, 2002. She weighs 6 pounds, 13 and a half ounces, and is 19 1/4" long. Guess those sonographers got it right this time!

On March 01, we learned that Madeline was born with a congenital heart defect, known as Atrioventricular Canal Defect (AVC). A murmur was heard when her initial examination was done after her birth, and we were referred to a pediatric cardiologist at Children's Hospital in Oakland, California. To learn what AVC is, click here. She is in no distress now, and is eating very well. Her color is good, and she is becoming more awake and alert as time goes by. But she will need to be on cardiac medications soon, and sometime when she's three to six months old, she will require open heart surgery to repair her heart. Her prognosis is good, and her cardiologist is very optomistic. Obviously we are scared beyond belief. Madeline has been baptised and confirmed, just in case.

04/09/02 - Madeline has been on Lasix and Aldactone, two diuretic medications, for a little while now, and her breathing is less labored. She has not gained weight as her doctor would have liked, so he is concerned since she is expending so much energy just breathing, she can't gain weight as she should. We return to the Cardiology Clinic on 25APR2002 for a follow-up visit to see if she's gained any weight. If not, then there is a chance the surgery will be scheduled sooner rather than later so as not to affect her future growth. Her cardiologist said her most recent echo showed a narrowing of the area of the valve to the pulmonary artery which helped reduce pressure in her lungs (which is a good thing...kind of protective) that might help delay surgery. The weight gain issue effectively cancels that benefit out.

04/25/02 - Today was yet another follow-up visit with Madeline's cardiologist. She was started on Digoxin to help her heart beat a little more effectively, since her latest chest x-ray showed some pulmonary congestion. We had some lab work done to screen for genetic problems; namely Down's Syndrome. Her doctor doesn't believe she has it, but is being complete in his assessment. He also ordered a Pitt count, to check her splenic function, as he believes Madeline has polysplenia (multiple spleens). He is leaning towards having the surgery done in May, but can't give a definite date yet; although in the same breath asked if we were flexible in that if a date became available earlier, would we do it sooner rather than later. We said yes.

Now we're really scared.

05/07/02 - We got the results back from the Pitt count (splenic function) and the result was < 3% which is within normal function, so we don't have to worry about Madeline's spleen causing problems. We are still awaiting the karyotype results to rule out Down's Syndrome. Dr. Saba still doesn't think she has Down's, but wants the test results to confirm this. So do we. A repeat echocardiogram was performed today, and the pulmonary artery obstruction is still there and working to her advantage. And, she gained nearly half a pound, so Dr. Saba said he wants to wait even longer to do the surgery, since it doesn't seem so 'emergent' anymore, and to quote him, he's "greedy with time to let her grow". Her pulse oximetry tests have been consistently in the 92-94% range on room air, so she's oxygenating on the lower end of normal. We'll continue the meds and cluster feedings to help put weight on her bones, and we go back in two weeks for another follow up visit.

05/20/02 - Today was another follow-up visit with the pediatric cardiologist. A repeat pulse ox reading showed her saturations had dropped to the 87-88% range, and her chest x-ray showed some congestion. We expected that, as she has been coughing a lot lately. These findings, coupled with the minimal weight gains since the last visit, mean that a surgery date has been set. Madeline will have her surgery on June 18th, 2002 at 10am or so. We'll meet for the pre-op appointment in the preceding week to talk with her surgeons, the anesthesia team and the OR nursing staff.

06/11/02 - We were scheduled to meet with Madeline's surgeon, Dr. Frank L. Hanley at 0830 today, but he was unable to make the appointment as he had a meeting at Lucile Packard Children's Hospital. Dr. Hanley works out of many hospitals, since his area of expertise is so focused, and he is in such demand as a pediatric cardiothoracic surgeon. He is at Children's Oakland on Tuesdays only, and is in surgery most of the day. We will meet with him at length on the morning of Madeline's surgery to have him answer any remaining questions about the surgery. We have to be back at the hospital on Thursday for the pre-op appointment and testing. Suzanne donated blood yesterday, as did her mother and a friend of my sister-in-law. I was tested to donate for platelets, but I was told I had a low count, probably due to being 'worn down'.

06/13/02 - Today was Madeline's pre-op appointment. She had some more blood work done, as well as a repeat echocardiogram. We met again with Dr. Saba, and he filled us in on what is to happen on the day of surgery. He informed us that Madeline has a venous malformation where deoxygenated blood is returning to the left side of the heart, rather than the right side. This means Dr. Hanley will have to alter the patch placement in her heart to correct this defect. Dr. Saba believes it won't change the length of the operation much. His nurse educator Sarah took us around the PICU to see what we're in store for. It was very difficult to see the children there and know Madeline will be among them next week. We completed the pre-registration paperwork and the anesthesia interview as the last task of the day. Now we wait until Tuesday. We have to be there at noon.

06/18/02 - Today was the big day. Dr. Hanley and his team took Madeline into the operating area at 1300. Dr. Monica, the pediatric anesthesiologist, said Madeline was giggling to her as she was taken into the OR. The surgery, which Dr. Hanley termed a "7 or 8" in a 1-10 scale for difficulty, turned out to be closer to a "strong 9" after it was over. Madeline was in surgery for more than 7 hours. The ASD and VSDs were repaired, and the appropriate valves for the right and left sides were fashioned from the one common valve that was there. But Madeline had a venous malformation where blood that should have returned to the right side of her heart actually came back to the left, so Dr. Hanley fashioned an "atrial baffle" to route the venous blood to the correct side. She still has a residual VSD that is very small, and won't grow as her heart grows; it might even close on its own. We'll have to monitor that over time. After Madeline was taken off the bypass machine, she was placed back on it for some further work on the valves and baffle. She was taken directly to the PICU after surgery, and we were able to be reunited with her at around 2300 that night. She was still intubated, had a chest tube in, was on a temporary pacemaker, had 2 central lines, a foley and multiple IVs.

Madeline's surgical diagnosis is Complete AV Canal Defect, s/p repair; heterotaxy; s/p repair anomalous systemic venous connection.

06/23/02 - The last few days have been extremely trying for us and for Madeline. Since she was on bypass for so long-not once but twice-her organs took a beating. She swelled up and her kidneys stopped functioning, and the doctors were worried about her liver. Her potassium levels elevated, and her blood pressure was all over the place. She was placed back on the pacemaker, and had a second surgical procedure to place a peritoneal dialysis catheter in case her kidneys shut down. After the PD was placed, she started displacing fluid from it, to give her kidneys a chance to rest and catch up. Last night at around 2230 she opened her eyes and was groggily looking around, and weakly moving her extremities. Then a little after 2300 she started producing tons of urine. She kept that up all night and her swelling decreased dramatically. Today was a very good day. She was easily arousable, made adequate amounts of urine, stabilized her chemistries and lessened the stress level for all us concerned adults. She improved so much that she had one of her blood pressure medications stopped, and one of the central arterial IV lines removed. There is a possibility her chest tube will come out tomorrow. We still don't know how long she'll be in the hospital. But everything looks great for her, and the docs say she'll make it.

06/26/02 - Madeline continues to improve, slowly but surely. Her other central arterial IV line was removed yesterday, as well as her chest tube. She has a feeding tube into her gut feeding her small amounts of breast milk on a continuous basis, as well as IV nutrition. She was weaned off her pacemaker, and is keeping a fairly steady heart rate on her own. There was some concern she might need an internal pacemaker if her heart couldn't pace her adequately on its own, but for now it's doing well. Her cardiologist wants a GI series done at some point to check to make sure her intestines don't have any twists, blockages or other hindrances that would cause her trouble down the line. Kids with Madeline's medical problems tend to have them (heterotaxia). That might mean another surgery at a later date; we'll have to wait and see. The next step is to get her off the ventilator.

06/27/02 - Madeline was removed from her ventilator today, and did well maintaining her heart rate and oxygen saturation. We got to hold her for the first time in over a week. She has decreased circulation in her left leg; possibly a clot developed after her central IV line clotted off. Her abdomen was distended and firm, so an x-ray was done and a perforated bowel was discovered. Madeline was taken back into surgery for the third time to have her bowel repaired. She also had a malrotation in the small intestine that is common to non-Down's Syndrome AV Canal patients. That was repaired, and her appendix, which was located in her left abdomen instead of the usual right, was removed as a precaution. She was in surgery for over 4 hours this time, but is doing well. She remains in the PICU, again on a ventilator.

07/02/02 - Madeline's breathing tube has been taken out, and her foley catheter was removed today as well. She is on a course of antibiotics since she has tested positive for some bacteria in her peritoneum. There was talk by the docs that more of her IV lines would be taken out today. Madeline loved to suck her thumb before the operation, and she is quite mad that she can't get her thumb into her mouth because of the IV armboard making it hard to bend her arm. Once that IV was removed, she would have full access to her thumb. She makes steady and slow progress.

07/04/02 - Madeline has been moved to the Intensive Care Nursery from the PICU. It's quieter and she's been able to get some more sleep there. Since she has no IVs in her arms anymore, she can get her thumb in her mouth, but she also yanked out her NG tube. She had another perc line placed in her scalp, but it was placed incorrectly and will need to be redone. We're told that on Tuesday or so, the surgeons will do a dye scan to make sure the bowel repair isn't leaking, and if everything checks out, Madeline can start to feed. She's getting IV nutrition, but she's really mad because she can't nurse.

07/06/02 - I got to hold Madeline for the first time in nearly 3 weeks. She is still on the antibiotics, and is being weaned off the morphine. Since being placed back on Vancomycin, she's developed a generalized body rash, and is getting Benadryl to deal with the allergic reaction. Her heart continues to function just fine, although her EKG is less than pretty. It doesn't matter what it looks like, as long as it's effective. Madeline seems miserable with the itchy rash; hopefully with the Vanco stopped today, the rash will subside soon.

07/08/02 - Today can be considered passing a major milestone. Madeline had her dye test and everything checked out fine with the bowel repair. That means the NG tube is out, and Madeline was started on Pedialyte by bottle, and tomorrow she can start to breastfeed. Now if all goes well and there are no problems, we have a tentative discharge date from the hospital of 07/15/02. Cross your fingers. Suzanne held Madeline on her shoulder today, and Madeline fell comfortably asleep.

07/16/02 - Exactly 4 weeks to the day of her admission to the hospital, Madeline was discharged home with us today. She has a pericardial effusion for which she is taking aspirin, and she's still on the Lasix, Digoxin and Aldactone. In addition, she's on iron too, to help boost her RBC production. Since being placed on aspirin for the effusion, she's been eating like a Starvin' Marvin! On her admission to the hospital, she weighed 4.2 kg, and on discharge today she weighs 4.7 kg. We have to go back Friday to see Dr. Saba, and if the effusion hasn't gotten better or is worse, then Madeline will be re-admitted to the hospital for anti-inflammatory treatments.
We owe a debt of gratitude to all the doctors, nurses and techs who took care of Madeline during her stay. Dr. Frank L. Hanley, Drs. Thompson, Benson, Butler, Avasarala, Culbertson and the many others who monitored her...we thank you. To the nurses who endured the wrath of two scared and overprotective parents, we apologize to you, and thank you as well. Let's hope the next time we meet, it's over BBQ at a reunion picnic and not in your hospital.

07/23/2002 - Madeline has had 2 post-hospitalization visits with Dr. Saba, and all is well. The pericardial effusion is basically gone, her EKG is a sinus rhythm, but she still has a small amount of fluid in her lungs. She'll stay on the diuretics and Digoxin for a while, and continue the aspirin until her next cardiology visit next month. Dr. Saba did mention the fact Madeline's mitral valve is still leaky, and she 'might' (read: probably) need another surgery to 'tighten it up' when she's three or four years old, depending on how she does. But for now he's pleased with her progress, and we have an appointment with Madeline's pediatrician on Thursday the 25th of July.

07/25/02 - Today was a visit with one of Madeline's pediatricians, Dr. Gach. He had not seen her before, and his first comment, upon listening to her heart, was "WOW....". I laughed and told him her murmur is nothing compared to what it was before her surgery. She is running about 1-2 months behind where she should be developmentally, as is to be expected. She is 10 pounds, 4 ounces now...2 pounds more than her pre-op weight. She got the last of her immunizations to bring her current.

08/09/02 - We saw Madeline's surgeon today, Dr. Butler. She performed the bowel repair and Ladd's procedure to correct the intestinal malrotation. She was pleased and amazed at how well Madeline's been progressing. So much so that we don't have to see her again unless any problems crop up. Madeline weighs over 12 pounds now! The next doctor appointment is August 20 to see Dr. Saba.

08/20/02 - Today's visit with Dr. Saba went very well. Madeline continues to gain weight very nicely. Her latest echo showed no real changes for the better or worse. The pericardial effusion is gone, so the aspirin was discontinued. Her EKG has remained stable, so the Digoxin was stopped as well. Overall he is cautiously optomistic, and we go back in 2 months for a recheck.

09/16/02 - We were visiting Children's Hospital today to see a friend whose daughter was hospitalized again and we were able to visit with Dr. Hanley for a brief period. He got to see Madeline for the first time since he operated on her. It was a very emotional moment for us, as we hold this heroic man in such high esteem. He gave us a chance to spend a very fulfilling life with our baby girl, and we will be forever grateful to him. He was impressed by how much she has grown, and said he would do the surgery if and when she needs her mitral valve corrected. Madeline gave him a huge smile too...I think she knows how much he did for her.

10/22/02 - We had a follow up visit with Dr. Saba today. Her chest x-ray looked unchanged, and her EKG remains ugly but effective. Dr. Saba discontinued the Aldactone and halved the Lasix dose. Madeline will take the Lasix for one more month, then will be med free! Her next visit is in January, and if all goes well then, we go to semi-annual checkups! In the world of heart kids, that interval is like an eternity! She now weighs a tad under 15 pounds, and is a generous 26 inches long. Oh, and she now has two teeth poking through. It makes nursing quite an experience, apparently.

11/18/02 - Today is Madeline's last day on Lasix...she's completely med free! This day was a long time in coming, and we are grateful she's progressing so well.

12/06/02 - Madeline had an appointment with her pediatrician Dr. Flanzbaum today. She weighs 16 pounds 4 ounces now (10th percentile...woohoo!...moving up the charts!). He was amazed to see how well she's done since her surgery. He last examined her a month or so before the operation. Madeline must have remembered him from before...she flirted shamelessly with him again this time too!

01/21/03 - Today was another follow up visit with Dr. Saba. Madeline had an EKG and an echocardiogram done today. Dr. Saba was very happy with Madeline's progress. In fact he was the most positive we've seen him be since her surgery. Her residual VSD is about 1.7mm in size; less than previously thought. Her left atria is also smaller; rather it hasn't grown in relation to the rest of her heart muscle so it's more near normal in relative size. Dr. Saba is more comfortable in giving a positive prognosis for her long term survival, but he mentioned that later on down the road he'd like to do a heart catheterization to get definitive answers to what's going on inside her heart to be absolutely sure about her prognosis, especially since her post op complications were so serious. But for now, she's still off any medications, and will go to six month follow up intervals.

02/27/03 - Today was Madeline's 1st birthday. It was an emotional day for us because it marks the anniversary of the day she entered our lives, as well as the day our lives were turned upside down. There were times when we weren't even sure we'd see this day. We cherish every day we're given with her. She received some new clothes, some videos and a dollhouse play set. And as is the tradition, she got her very own birthday cake to eat.

Or wear.

Happy Birthday, Madeline...Mommy and Daddy love you.

3/31/03 - Today was a check-up with Dr. Flanzbaum. Madeline weighs almost 20 pounds and is in great shape, according to the doc. She got her chicken pox immunization and, consistent with past luck, came down with a mild case of the pox 2 weeks later. Figures. She recovered quickly and is trucking right along.

04/12/03 - Today was 29th Annual Heart party at Children's Hospital in Oakland. The Cardiology Department invites back all the kids who have had surgery at the hospital for a day of fun, food, games, and visiting with all the special caregivers who provide such incredible care for our kids during their stays. Madeline got to visit with Dr. Saba, Dr. Avasarala and Susan, one of her surgical nurse coordinators. She had fun playing with the other kids, winning a german chocolate cake in the cake walk, and feasting on chips and hot dogs. It was nice, for once, traveling back to the hospital for a social visit, not a medical one.

07/17/03 - Today Madeline had her six month check up with Dr. Saba, including an EKG, echo and CXR. Everything looks pretty good, according to him. Her heart is still enlarged quite a bit because of the hypertrophy associated with her pre-op condition. Her mitral valve still has "moderate" regurgitation. But the residual VSD is smaller than it was...about 1.5mm or so. She's over 21 pounds now, and he's pleased with her growth and development. He mentioned a cath again, but not for a few years and only to really see what's going on in her heart. He thought about going to annual visits, but since she's not yet two, we'll do six month visits until she's older. All in all a very encouraging visit.

01/29/04 - Madeline saw Dr. Saba today for her latest six month interval check-up. Overall, she is doing very well. Her residual VSD is still around 2mm, and hasn't gotten larger in size as her heart grows. Her mitral valve regurgitation, termed moderate at the last visit, was termed mild today! The only fly in the ointment was her EKG was showing a junctional rhythm, instead of her previous sinus rhythm. Dr. Saba said he's not worried though; polysplenia patients tend to have multiple pacemaker sites that change the EKG. She is wearing a 24 hour Holter monitor just to watch what her heart does for a day. Best news of all was we get to go to annual visits! Madeline shows no signs of any problems as she runs, climbs, falls, jumps and wrassles with her brother. Now if we could just bottle some of that...

07/24/2004 - We attended the Children's Hospital Oakland Cardiology Department's 30th Annual Heart Party today. Madeline got to see Dr. Avasarala for the first time since her surgery. He was impressed at how well she's doing. She conquered the carnival slide like a pro, although she nearly bounced right back up to the top. First sheer terror, then cries of "AGAIN!" Glad her heart could take it...ours certainly didn't!

10/18/2004 - Madeline was admitted today in congestive heart failure at Children's Hospital in Oakland. She was still trying to shake the cold/flu stuff she's had for the better part of a month, and yesterday she woke up quite puffy around her face and in her legs. Not pitting edema, but still there. All she's wanted to do is lie around and sleep, with a bite or two of food here and there. Her puffiness continued today, so we called the PC to see if he could look at her. He did an echo, EKG and exam, and immediately admitted her to the PICU. His initial impression was a viral infection damaging the heart muscle (myocarditis). After she was admitted, another PC had a hunch that perhaps her rhythm, a junctional tachycardia, might be causing her failure. After many attempts at an IV, an arterial line and central line, adenosine failed to convert her. She's now on Dig, Inamrinone, and maybe Amiodarone. Her PC was not optimistic about a prognosis if it was in fact viral myocarditis. He said we'll know more in the next 24-36 hours. As for the time being, Madeline is resting quietly, and her vitals are fairly stable. For now.

10/20/2004 - Sorry I couldn't update earlier, but as you can imagine I've been busier than a one legged contestant at a butt kickin' contest. Madeline remains in the PICU at Children's, but she's doing so much better now. The cardiology group has come to a general consensus that her failure was caused by a rhythm problem; namely a prolonged junctional tachycardia. After a few days on diuretics, she has lost almost two pounds of water weight. She remains on Lasix, Dig, Aldactone, Milrinone and Amiodarone. Each day they are doubling her Amiodarone dose to see if it works on slowing the heart rate; it has a 5-10 day loading period. Her rate has dropped by about 10 points or so each day. More importantly, it slows considerably while she's sleeping, whereas before she was 155-160 regardless. If the Amiodarone doesn't work, they are prepared to try a different med. She is awake a lot, eating pizza and pretty much anything else the kitchen tosses her way. Her favorite new activity is alerting the nurses when one of her IV pumps is alarming..."NURSE...I'M BEEPING!" She's also quite cooperative with the staff when vital sign time comes along. She'll raise her non-pizza holding arm out for the cuff as she continues to munch her food. Talk about multi-tasking. Now I've been checking all the drug sites and I have yet to see if hyper-talkativity is a side effect of any of her meds. The staff loves it though...she's quite a pill.

10/29/2004 - Madeline had her deep IV removed, and she's back on her Holter monitor. Drs. Saba and Avasarala can't agree between the two of them if Madeline needs a pacemaker or not. Her heart rate is around 120-130 during the day, primarily junctional in nature, and drops to 70-90 when she's sleeping. She is having some atrial impulses, and a pacemaker would be just in case her rate drops too low. They'll confer and make a decision Monday. She's still entertaining all the staff with her antics.

11/01/2004 - Madeline was discharged from the hospital today with a Holter monitor to keep an eye on her rhythm for 24 hours. The medications are keeping her rate fairly under control. She's in great spirits, and needed only a few minutes after arriving home to begin fighting with her brother. We're back to bi-weekly visits to the cardiologist so they can keep an eye on her. We'll see...

06/09/2005 - Madeline saw Dr. Saba today for a check-up, echo, X-ray and EKG. He was very pleased with her progress (weight gain, activity level, and overall appearance). Her valve regurgitation is mild again, and he's not changing any of her medications, even though she's gained weight. She's only taking the Amiodarone on weekdays, and she's been off Lasix for quite a while. Talk of a pacemaker has been put on hold, and all the cardiologists are in a wait-and-see pattern. She'll be back in four months for another check-up. We're thrilled, suffice it to say. She's starting preschool on July 01.

12/24/2005 - Been a while since I added an update. Madeline continues to very well. Her latest cardiology visit went well. Her Amiodarone dose was halved, and she doesn't take it on the weekends. She loves pre-school, and also takes weekly ballet/tap dance lessons and is learning to swim. We're celebrating another Christmas with her here, and we believe she's the best gift anyone could hope to have.

06/21/06 - Madeline performed in her first dance recital. Her dance group performed a tap routine to "On The Good Ship Lollipop". She was the hit of the show...but obviously we're biased. She loves dance, and will continue on in the fall at the next level.

09/25/06 - Madeline is all settled in at pre-school...she goes 5 days a week for half a day. She got the same teacher Ethan had for Pre-K, and they get along swimmingly. She's also started back with her tap and ballet lessons, with swimming lessons thrown in for good measure. Her latest Holter reading was promising; she was started on Atenolol to try and reduce her heart rate even more, since she was averaging over 110 bpm. So far, the Atenolol has reduced her average to around 97 bpm, and her cardiologist is pretty happy with those numbers. She's about the size and weight she should be, although the meds have decreased her appetite somewhat. She can still down a small pizza by herself when she wants to.

06/03/2007 - Madeline had her annual dance recital as part of her Tiffany dance academy class. She was the star of the show, of course. As far as her medical status, she's maintaining quite well. She's totally off the Amiodarone, and the Atenolol seems to be doing its job. She's rapidly approaching the end of her Quarry Lane School days, and she's excited beyond belief to start kindergarten at Walnut Grove School in August. We go back to see Dr. Saba in six months, so we'll monitor her closely.

06/07/2008 - Madeline again performed in her annual Tiffany Dance Academy recital. She performed in three different dances, and of course was the star of the show. Her Aunt Laura came down from Washington State and her Grandma Dorothy came from Fresno so see her perform. Her heart continues to be very stable, albeit a bit fast, with her medications. She sees Dr. Saba next month for her six month tuneup. The 'surgery' word still hasn't been mentioned, so we're very happy about that. Here are some photos from her dance recital:

02/27/2009 - Today my little princess turns 7 years old. Back when we were thrown into this terrifying world of congenital heart defects while she was still in-utero, we never even imagined we would get to this point. But thanks to many talented medical professionals, as well as the love and support of friends, family and strangers alike, we have made it to lucky number seven, and hopefully we have seven, or seventy, or seven hundred more to come. As for the birthday girl herself, she is doing very well indeed. Her heart rate has flipped again, and varies from between 40 and 120, depending on her activity and the amount of sugar coursing through her veins and arteries. She has been taken off all her meds in the meanwhile, since she is seemingly unaffected by the slower heart rate. She still dances, swims, runs, jumps, burps, twirls, and beats the snot out of her older brother as time permits. Her last cardiology visit was great, her heart function was termed 'normal'.

Normal.

I never expected to hear that word in any sentence associated with my daughter's heart. Or, since she's the product of my genetic makeup, her personality and/or behavior. But I digress...

Her PC did mention a pacemaker again, but didn't push as vehemently as he has done in the past, based on her echo, her overall health and appearance, and the brow-furrowed look my wife tossed at him.

Welcome to my world, Dr. Saba. Almost made you wet yourself, didn't she?!

My little peanut has dealt with so much in her short seven years; open heart surgery when she was three months old, followed by two more surgeries, two separate month-long hospitalizations for congestive heart failure where she nearly died....twice. Twice daily medication doses that would make most little old lady residents of any senior mobile home park jealous, and many doctor appointments that included EKGs, echos, x-rays, and blood work. Yet, the only times she cried were when her favorite EKG tech or sonographer were off those particular days.

She's a helluva lot stronger than me.

Happy Birthday, Madeline.

06/12/2010 - It's been a while since I've provided any update, so here we go. Madeline is now 10 years old, still as happy-go-lucky as she has always been, and just finished her second grade year of school. Her heart is still functioning normally, but her PC has scheduled a cardiac stress test this month, just to see how her heart performs under pressure. He doesn't expect any big surprises, especially since she is dancing more than ever. Speaking of which, she just completed her annual Tiffany's Dance Academy Big Show dance performance, and for the second year in a row, we performed together in the Daddy/Daughter Dance. This year the song we danced to was "Butterfly Kisses". And again, it was a major highlight in my life. Judging from the huge smile on her face afterwards, it was pretty cool for her too.

The only thing we are dealing with for Madeline right now is her hearing. She has been diagnosed with moderate to severe hearing loss in both ears, and has been fitted for hearing aids. She'll be getting those this month, so we'll see how they help her. She has also been scheduled for a CT scan to see if her hearing loss is congenital based on some neurological defect, or, perhaps as a consequence of taking such large doses of Lasix as a small child. But, no matter the cause, our main focus is to get her to a point where she can hear as close to normal as possible.

12/25/2013 - Merry Christmas! It has been way too long since I last updated this page, and much has happened during that time. The last update I had mentioned she was being evaluated for hearing loss. Well, she has been wearing hearing aids since a bit after that past post. She has adapted quite well to them; in fact she just got a new pair and these seem to offer her so much more variety in the sounds she can now hear.

We had been told all along that eventually Madeline would need a pacemaker. We finally reached that point last summer, and in June of 2013 she underwent implantation of a pacemaker unit with epicardial lead placement. Due to her funky anatomy, she could not have a transvenous pacer implanted. Her surgeons really wanted to avoid a full sternotomy to do her lead placement, but due to scar tissue from her previous surgeries and her heart being rotated more than expected, a full opening was needed. They did get great lead placement and capture, which they were happy with. But as they were moving her to the gurney from the OR table to move her to the ICU, she went into v-fib and needed to be shocked to terminate that arrhythmia. This complicated her ICU stay, but she did not have any recurrence of ectopy and was discharged home after a week.

Since then, everything we were promised about the pacemaker has come true. Her stamina has increased tremendously, she has really gone through a growth spurt, and she is quite happy with the results. This has been a good thing due to all the dancing she does, although she cannot participate in P.E. classes at school; she is getting P.E. credit for her dancing. She started middle school this year and so far is maintaining a straight-A grade average. We are justifiably proud of her.

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