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*Please note that updates for Mikayla's Stage Two appear on a different page you will find them under Our Story-Part 2.

Mikayla celebrated her first birthday on Sept. 4th with all her family and friends. We had a blast and it was much deserved on her half. It has been an incredible year. It has been an extremely long year that seems to have flown by all too fast. It seems like only yesterday that she was born and we were living the whole month of September in Boston. What an amazing journey it has been. We have learned how important life is, we have learned what heartache really means, but more importantly we have learned what a beautiful gift our children really are to us. Mikayla has taught us the meaning of life and Kelsey has taught us the beauty of it all. We couldn't have been more blessed. If only the rest of the world could see through our eyes, maybe there would be more peace and love.

Mikayla is certainly keeping us on our toes these days, she is running around all over the place. Getting into everything she can. Loves to imitate me on the phone and chases the cats everywhere. I think they are getting a little fed up. She has had her check ups with the cardiologists and still doing wonderful or should I say as expected. Can't say for sure, but we are betting by summer she will have her third surgery done. Docs in Boston are still trying to push her off till she is three, but with her oxygen levels going down, I truly can't see that happening. Even the Worcester cardiologist agrees. All I have to say is can't wait till it's over, we will be taking the kids off to the Bahamas for a much needed vacation and also to Disney for Mikayla's life celebration.

I have to give a big THANKS to our family for all their support over this past year and also to all the wonderful people we have met over the year during our journey. Especially the Campbell's, who will be our life long friends, and that I am sure Mikayla and Grace will become the best of friends who will experience all their HLHS monsters together, as they already have and fight them together. God willing, we will be at both of their weddings and watch them grow old.

From our family to yours, please keep your children close. Love them dearly and thank God for every day. I will update again when Mikayla is ready for her last and hopefully final surgery. Love to all.

Mikayla went to her cardiologist in Worcester the other day and had an echo. Everything looked great as far as the right heart function. She still has a little tricuspid valve regurgitation. Good news is it has stayed the same and hasn't gotten worse. The one thing they did see though was irregular blood flow in a place it shouldn't be. The cardio thinks maybe she has some collaterals building up again. She told me not to worry too much and she knows we have a follow up in Boston in August with an echo then as well, so I think that is why she doesn't want to get too concerned just yet. I think she may want to see what Dr. Marx thinks before jumping to anything. Although that does not stop me from worrying. I have noticed her feet and lips turning blue again, every now and then. Her oxygen levels are also dipping down again. So to me, those are signs of something starting. She still has a way to go before her last surgery, I hope, so she better start behaving herself. We don't need to go through any scares like the last time.

Again, I save the best for last. She is 10 months old now, weighs 17 lbs. 5 oz. and is 26 3/4 long. She looks like a little chunky monkey. She is crawling all over the place and gets places awfully fast. She is furniture walking everywhere. And everything is now DADA. She imitates a lot of what you do as far as facial expressions, if you throw the ball to her she throws right back, and if she sees Kelsey dancing she will sit right up and start bouncing along in her little dance ways. She is at a funny stage now. Although she does have her temper tantrums already, she bangs her foot on the ground and screams. She definitely is an I need, I want now baby. Her congestion has finally cleared up, sleeping better than the last update, but still not through the night. Getting very tired!!! We have noticed that if she gets very active she coughs a lot, doctor thinks maybe she has asthma now as well, but doesn't want us to do anything about it just yet. Trying to keep other specialists out of the mix until 3rd surgery is over with. Well, that is pretty much about all, Mikayla is up to par with other babies her age, which is great. So far, she is not behind in anything. We pray she continues with a path of success. We are just awaiting the BIG ONE!! September 4th is coming soon and she has a reason to celebrate. I will keep you all posted if anything happens after her echo in Boston. Hope everyone is enjoying summer. Lots of love to all.

Monday, May 17, 2004

Hello to all. It has been awhile since we last updated or at least it seems. Mikayla seems to be doing quite well at this time. She has been through many ups and downs since her last surgery though. She has had six ear infections since January and constant congestion. It still seems that she can't lie down flat without getting all congested and trouble breathing. We have seen a pulmonologist, neurologist and her gastroenterologist for this problem, but they all seem to have different theories all pointing fingers at other docs. One suggested it was congestive heart failure, another thought allergies, another thought reflux. So we are still up in the air. We do go on Thursday to an Ear, Nose, Throat specialist at Children's, hopefully we get some answers because this is really causing a problem with her sleeping. We get about 3 1/2 good hours at night and then she is up every hour to the dot crying and stuffy. Her cardiologist seems to think she may have an airway obstruction of some sort. Mikayla also has started developing brown spots on her body, that we recently found out from her pediatrician it may be a disease called neurofibromatosis. That is another story within itself. There is nothing they can do for it and it does not have any link to the heart. We are keeping this one at the back of our minds for the meantime and just praying that is not what she has because it can be very damaging.

O.K. I have saved the best for last....Mikayla now weighs 15 lbs. 10 oz. and doing developmentally great. She rolls over both ways, sits up on her own, pulls to stand if she is holding on to you and now just the other day learned how to go from sitting to bending over and getting into crawling position. She rocks back and forth....she is ready to go!! It is amazing watching her progress. It all seems to be going quite fast. She has her two bottom teeth and a perfect curl on the top of her head. She also twice now has said MAMA!! And what a beautiful sound that is. She is still always happy and smiling. She is becoming very interactive, especially with big sister Kelsey. Everyday Kelsey gets home from school, Mikayla gets extremely excited. It is a very precious site to see. This little one's heart defect has not slowed her down, not even for one second. Her energy level is unbelievable.

Well, I think that may be all for now. I will update again when she is crawling or walking, which may be very soon. We will also soon be planning a huge 1st birthday celebration. Mikayla definitely has much to celebrate and so do we. From our family to yours, much love goes out to you all. Have a great summer.

2004 January 8th, 2004

We went to Boston on December 18th and were told by her cardiologist that she is ready for her Stage 2 the bi-directional Glen. It is the second stage to
the Norwood procedure; an operation where the superior vena cava is sewn to the pulmonary artery. Also at this time they will be taking down the conduit. This open heart surgery, we were told will take less time and also be a quicker recovery. This is the easiest of the three surgeries, for the doctor's to do anyhow, it is by no means any easier on us.

Since our appointment with Boston things have been going on a downward path for Mikayla. She has become more cyanotic (blue), her oxygen saturation has gone down to high 60's low 70's, her heart murmur has become very harsh sounding because the conduit is becoming more obstructed. If you put your ear to her chest you can hear it quite well. She has decreased her feeding from 4 1/2 ounces to 2 ounces. She just does not have the energy to eat as much anymore therefore she is hungry more often. Sleeping, well forget it, there is no more of that in our house, because she is waking often to eat also we are finding that something is happening with her heart as she sleeps. She wakes up breathing very fast and becomes extremely irritable. With the conduit becoming more obstructed she has less blood flow getting through and less oxygen. We were told by doctors that this second stage will correct all that and quality of life will improve significantly. She has a hard time lying flat for a long period of time. Her hands and feet become severely blue and cold. The oxygenated blood goes to the lungs and brain before the extremities. Which is a good thing, she needs it there first. But I must say for all this that is happening to her, and with the little amount of sleep that she is getting, she is by far the happiest, strongest, half hearted baby in the world. She continues to babble and coo, laugh, play and she now likes to sing with me.

Mikayla is being admitted into Children's Hospital on Monday, Jan. 12th. She will have her heart catheterization on Tuesday. A procedure where a catheter (tube) is inserted into the body to measure pressures inside the heart and to look for any other defects. Which we were told by her last echocardiogram that the rest of her heart is in perfect shape. She has a little regurgitation in the tricuspid valve but is very minor. Her surgery is scheduled for Thursday the 15th. They expect her stay in the hospital to be very short this time, anywhere from five to seven days, providing nothing goes wrong. It is amazing that a baby can recover from open heart surgery that fast.

I truly believe that Mikayla has come this far because of everyone's' prayers and the many blessings that she has received. You see, Mikayla was blessed
by Father DiOrio while in utero. He touched me and gave her a powerful prayer. She was also baptized at Children's by Sister Carlotta. She used holy water that came from the Jordan River. God is with her and her angels are taking very good care of her. Please continue to pray for her, this next week is going to be tough. She needs your prayers, support and love. I will continue to update daily while Mikayla is in the hospital. For now, thanks again for all
the love and prayers.
Love from our family to yours, The Garvey's