Cutie-pie in pigtails

Christmas 2006

First Birthday

Bat-Girl

Happy Maggie

Maggie in her new highchair

Maggie's first Easter

Last fall, Maggie Lee was born weighing in at 8lbs 9oz and 21.5 inches in length. We had 7 wonderful hours of thinking we had the most beautiful and healthy baby ever seen, until the pediatrician dropped by to check on her and we heard the words, "I hear a murmur." Everything becomes surreal and blurry after this moment, when Maggie was taken from me to the infant ICU and her saturation checks come up at 84%, echocardiograms have been done and she is placed on a heart monitor. The doctor told us she has "Tricuspid Atresia," she failed to develop a tricuspid valve between the right atrium and ventricle. We were medivaced to Children's Hospital in Seattle where we spent Maggie's first 1-1/2 weeks. During this time she had a cardiac cath procedure and had her atrial septal defect widened to allow more blood flow and we were sent home with the knowledge that we would be back in 4 months for a check up and that Maggie would require 2 surgeries in her future, the bidirectional Glenn and the Fontan. We were also told that if her blood flow was getting low, she would possibly need a B-T shunt before either of the repair procedures would be done. So we went home.

2 months later, Maggie began to have increasing difficulty with eating, and her color became worse with purple little feet and lips, so off to Seattle we went for a checkup. When we arrived at the doctor's office her sats were 65%, and we were told she would have the B-T shunt placed in 2 days and we were going to have her admitted that night to prepare for surgery. We arrived on the children's surgical within a few hours and Maggie's sats were 38% and within 2 minutes there were 15 doctors and nurses in the room and Maggie was rushed of to surgery for emergency placement of the B-T shunt. She had 2 very rough weeks in the ICU after this, since what is normally done as a scheduled surgery was done emergently and she went into it very sick. She did recover and was transferred back to the children's unit and discharged after a week and a half. We then spent another month in Seattle at Ronald McDonald House before being given the OK to go home.

We have now been home in Juneau for two weeks and plan to visit Seattle in about two more weeks for a check up and to re-evaluate when the bidirectional Glenn will happen. The major issue for us right now is feeding this baby. It has been such an unbelievable challenge to get her to eat and to gain weight. She has had an NG tube for over two months, and just last weeks started to eat better so we removed it. Over the weekend she has started to backslide, is taking in less than half of what she needs. The more I talk about it, the more I hear that feeding issues are very common with cardiac babies. I am wondering if anyone else has experienced these issues with feeding?

April 2006 Update

Maggie had her open heart surgery, the bi-directional Glenn, on March 21st and all went extremely well!!! We are still in shock that it is all over and we have been at home for more than 2 weeks now. Prior to the Glenn, Maggie had a cardiac cath on march 17th to have a look at the size of her arteries, and they looked good and it was decided that they would go ahead with the Glenn the following week. We spent a wonderful early spring weekend in Seattle, going to parks and visiting family that we have there, trying not to worry about the upcoming surgery. Tuesday came quickly and before we knew it, we were handing Maggie over to the anesthesiologist, to head back for her big surgery. This was a very difficult moment for us. We waited patiently in the family lounge, checking email and calling family with updates. We had a pager and the OR nurses contacted us periodically to let us know how things were going. We were called when she went on bypass and the surgery started, and then again when she came off of bypass, and 15 min after that last call, we were being paged that the surgeon was looking for us! The whole thing was over and done with in 4 hours. Dr. Cohen said that he couldn't have hoped for things to go any better, and we were thrilled! We finally saw Maggie a couple hours later, after she was all settled into the ICU. All the tubes and wires looked so familiar, and we were surprised when they took out her breathing tube and central line that evening. The next morning she was off oxygen, and her chest tubes were taken out and she was discharged from ICU to the regular unit that afternoon. Maggie spent 2 more nights in the hospital and was discharged! We could not believe that only 3 days before, she was having open heart surgery. She did amazing! She left the hospital on plain Tylenol and acted like nothing had happened. That's our tough little girl.

We spent another week and a half in Seattle and my mother came to visit us from Ontario, Canada. We had a great visit and all of us headed back to the airport on April 4th.

Maggie is doing great since her surgery. She is happy, smiling and giggling and loves to play with her toys. We still struggle with the bottle feedings, but usually manage to get about half of it into her. She has a g-tube, and will be getting the "button" in a couple weeks. We have started her on solid foods and so far, she seems to enjoy that a lot more; we get about 1.5oz of baby food into her twice a day. She is now on captopril, which is a new medication since the Glenn, and continues Lasix, Aldactone, aspirin and Prevacid. She seems to be outgrowing the reflux, so we have started to let her lay down on the floor, flat on her back and play on her play mat.

It has been quite a struggle and an emotional roller coaster since Maggie was born, but, we are all in a much better place now and are enjoying watching Maggie grow and change everyday. When Maggie is 3 to 5 years old, and 35 lbs, she will have the Fontan which will be the last part of her repair. We are looking forward to having some regular time with her, that doesn't involve being at the hospital for extended periods. We love Maggie dearly and we are all so very proud of her.

January 2006 Update

Things have been fairly low key since Maggie's bi-directional Glenn procedure last March. She continued to recover nicely afterwards, gaining weight and very gradually improving on her feeding. Her appointments with cardiology have been very good, and we continue to have check-ups every 4-6 months, and will continue to do so while we monitor her for the next step, the Fontan.

Maggie also had her g-tube replaced with a "button" in May, and this made her tube feedings a lot easier, while we continued to work with her on bottle feedings. It seemed like forever, but very gradually between May and August, Maggie finally started to enjoy her bottle and get over her severe oral aversion. She even began to feed herself bite size pieces of food in her highchair! We were absolutely amazed to see this after struggling with severe feeding problems since birth. All of our hard work, patience and consistency finally paid off!

Maggie also met her great grandfather, for the first time last May. It was a wonderful day and grampa was doing very well, and seemed to enjoy Maggie, even though he didn't seem to know any of us. I am so thankful for that day and all the great pictures we took, as grampa passed away 6 weeks later after an 8 year struggle with Alzheimer's. Maggie and I traveled back for his funeral and she was able to cheer people up with her adorable smile during such a sad time.

In September 2006, we had a huge celebration at our home for Maggie's first birthday. Maggie had so many challenges to overcome that first year, and she did it!! We were so proud of her for fighting to be the strong, happy and healthy toddler that she is today. Way to go Maggie!! She had a blast opening presents and smearing cake & icing all over her face!

Between September and December, Maggie and I reached a personal milestone; we finally were able to stay home for more than 8 weeks. Since Maggie's birth, we had not made it past 8 weeks without having to fly to Seattle for check-ups, emergency surgery or scheduled surgeries. It was wonderful to be at home and finally have a routine with Maggie. The next time that we traveled, it was to take Maggie to visit the rest of her family in Ontario, Canada for the Christmas Holidays. We stopped over in Seattle for a check up on the way. Dr. Boucek said that her echo looked really good, and the Glenn had healed nicely without any scarring or narrowing of the arteries. After much discussion, it was decided that the g-tube would be removed! Maggie celebrated by drinking an entire 8oz bottle, by herself, on the way home.

The holidays went over fairly well with the exception of one thing, Maggie got her first cold and it hit her hard, and it was on Christmas eve. Her sats are normally in the high 70s to low 80s and on Christmas eve they dropped into the 60s and we were scared. We took her to our local small town ER and they put us in an ambulance for an hour and a half ride to Toronto where they have an amazing children's hospital and pediatric cardiology team. Her sats improved with oxygen and the chest x-ray ruled out any cardiac concerns and assured everyone that it was just a respiratory infection. We stayed in the ER over night and her sats stabilized without the oxygen cannula. We were released at 6am Christmas morning and were home in time for breakfast. This experience gave us a reality slap in the face; things go along smoothly for a while and you almost forget how fragile your child with congenital heart disease can be. They go through so much with incredible strength and courage, and then the common cold can just knock them down.

So, from this point on we hope to just have our check-ups without any other complications, while we monitor her for the upcoming Fontan procedure in a few years. Her cardiologist says that sats consistently in the low 70s will be our signal that it is time for the Fontan. She also needs to be over 3 years old and 35 pounds, which shouldn't be an issue since she is currently 25 pounds.

We enjoy watching Maggie grow, and become a little person with a mind of her own. She really does amaze us on a daily basis with what she is capable of. With all she has been through she still managed to crawl at 11 months, walk at 14 months and now says "Momma, Da Da, Hi and baby." I think of all the terrible days everyone went through that first year when she was critically ill in the cardiac ICU, and now, we watch her running around with her smiles and pig tails, giving kisses to mommy and daddy.