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Sunday, July 29, 2012

Good Things

**B had his followup with the ENT and his ears are working better :) He still can't pass all the hearing tests but there was enough improvement that we didn't need to do the sedated test :) He will continue to take his medicine for a month and then be off it for two. If his ears stay clear, they will just monitor. If the fluid returns, we may still need tubes
**Iz has gone from a couple reflux episodes per hour to a couple per week :) We are all very pleased!
**Iz hit 19.8 on the home scale today--I know it isn't as accurate as the baby scale but it shows a gain in the right direction
**S also gained about six pounds--he is our stays boney no matter what and how much he eats so we like seeing gains :p Boy never stops moving
**Iz outgrew all her jammies :) Yay, growth!

Thursday, July 19, 2012

Three months post op :)

Wednesday, July 18, 2012

Meeting her goals :)

little Miss Iz was strutting her stuff for our Lovely Lady from EI today :) She has met ALL of her goals for this month and met all but one of her goals for NOVEMBER. Woo-hoo! This little gal of mine sure can make stuff happen when she is determined :) Our Lovely Lady even mentioned Miss Iz might move herself right out of the program if she keeps this up :) Wouldn't that be awesome? As much as I love the ladies we have worked with and continue to work with, it would be wonderful to not need them anymore! We will see how the next few visits go.

In other news, S got a scholarship to attend a summer program at his school. Its kinda like a summer day camp with an emphasis on retaining and building on the educational skills. There are fun field trips, lots of games, playtime, and academic stuff. At first, he would be very upset if we referred to it as school because it was summer and you don't go to school in summer ;) So we called it his Summer Camp. After a couple of days, he told me we could call it school because that would be easier (ah, child, taking the easy way--saying Summer Camp is too darn long so call it school....). But only as long as we were clear that it was NOT school. In school, he goes to Specials (art, music, gym, his extra classes for his IEP) and they have a short recess. At camp, there are no specials and recess is sooooooo long that he almost fell asleep on the swings at recess. And they play way more games than in school. LOL He cracks me up ;)

Monday, July 16, 2012


S takes after his Daddy--they are both very mechanical and need to know how things work. Documentaries are a favorite in our house, especially ones that cover how things are made or how they work. When S found out Miss Iz was ill, he had to know how and why and as many of the details as he could find out. He needed a run down of her surgery before it happened, had to know where she would be cut, how they would get to her holes, what they would do to fix it. It was hard enough just wrapping my mind around the fact that the surgery was going to happen and then I had to do a step-by-step in kid language :p But until he felt he understood what would happen and why, S could not be calm about it. Once he knew, for him it was simply a matter of waiting for it to happen.

Our experiences have sparked an interest in surgeons of all types and surgeon has made it onto his list of things to be when he grows up (along with garbage man, race car driver, policeman, Indiana Jones, fireman, and a Jedi. But not a pilot since he says he would get sick if he had to go up in the air and have turbulence every day...). Not too long ago, he was picking out something to watch together on Netflix and we settled on Gifted Hands: The Ben Carson Story. Ben Carson is a neurosurgeon and S was fascinated with the different procedures Carson helped to develop and/or perfect. We checked out some books from the library about Carson and one of them, Think Big, has been making my brain turn and turn and turn ;)

In a lot of ways, Carson reminds me of our heart surgeon, Dr W--the kind manner, the humble demeanor where you feel as though he thinks of you as equals, just with different strengths. Carson stresses often the fact that just being blessed with gifts that make him an excellent surgeon is not enough. He relies on all manner of people around him--those that influenced him as a child, those that mentored him, those that support him, the parents and patients who place their trust in him. He writes of the good and the bad, his successes and failures. He talks about the good things that have come from patients he lost--the knowledge gained, the specialized equipment that was available later to save others, etc. I can't help but think of Iz as I read--so many came before her. Whether the child lived or died, the surgeons were learning and gaining experience and perfecting the techniques that today save so many. My uncle was a CHD baby; he died around a week old. I wonder what things his doctors learned from him--was their experiences with him instrumental in another baby living?

Carson often deals with the cases no one else will take. He writes about how sometimes, the only response he has to a parent wondering about whether or not their child has a chance is to think of the alternative. Certain death versus a chance. Even if hope is slim, it is still hope. I can't help but think of all the heart parents before me who had the same choice--think of the alternative. Their choices to go for it, whether successful or not, helped my Iz. Parents today are still making the hard choices, still losing their little ones, still taking the chance. Surgeons are still learning. Perhaps helping Iz through her complications helped her surgeon for the next time. Perhaps the heart babies lost recently in the online community helped their surgeons learn and do more in the future.

I wish to thank those who came before, who are walking this journey now, who will do so in the future. Each surgery, each outcome, each complication, each loss, each success, all of them help build the knowledge that will make things better in the future. When my grandmother gave birth, her baby couldn't be saved. By the time I had my babies, many have been saved. Perhaps by the time my babies have their babies, all will be saved.

Sunday, July 15, 2012

A post in which I think too much....

My first pregnancies, I could always tell I was pregnant long before I could get a positive test. The changes I felt physically were pretty clear and it was only a matter of waiting a few weeks before we got that positive. Unfortunately, for those first few times, miscarriage was waiting for us, once on the same day we got our positive and the others within a few days. By the time I was pregnant with S, I refused to acknowledge the tell-tale signs. I was insistent that it was coincidence, that my husband was wrong about the fact that we were, indeed, pregnant again. But things kept on. We tested and still they kept on. We waited and still they kept on. We passed the point of our longest pregnancy and still they kept on. We had a baby :)

Three years later and the familiar symptoms sent us to get a test and like before, things kept keeping on. We had a baby :)

Almost two years later, I had a strange burning pain in my right thigh. The only time I had ever felt that pain was in my second trimester with B. But I always knew early on when I was pregnant so it couldn't be, could it? A positive test said it could. I went to my doctor to confirm and when I got home from the office, bleeding. This pregnancy was surprising--I never got a period back because I was breastfeeding--and here it was, leaving almost as soon as I suspected it. My doctor asked me to come back in in a few days and have another blood draw, just to check. Despite the bleeding, my numbers were still going up. Things kept on. The bleeding stopped. I saw the OB and we found out that we were not a few weeks along, we were several months along....good thing I take a prenatal every day, pregnant or not, eh? We had a baby :)

Several doctors have told me that the most common reason for miscarriage is because the baby isn't developing correctly. That the children I will never hold in my arms most likely couldn't have made it and that is why they miscarried. Sometimes I think about that dark week after we found out about Iz, the week of bleeding and cramping and sadness and tears and pain. The week where we rejoiced at the thought of a new baby and mourned that baby, thinking that we had to say good-bye once again. I look at her now and I wonder if it was connected to her heart and the fact that it didn't completely form? I can't imagine not having her here with us. I can't imagine not loving her and holding her and crying over her and worrying about her and rejoicing over her. I can't imagine saying good-bye to her before I even met her. I think, too, about the little ones who were not meant to be. I wonder if their little hearts didn't fully form and if that is why we lost them right around the time those little hearts should have started to beat.

I think perhaps I think too much. But the thoughts rattling around in my head often quiet down after I write them out so perhaps I can now stop thinking about that week where we, for the first time of many, worried that our little Iz wouldn't make it....

Wednesday, July 11, 2012

A link

I have a couple of posts rattling around in my head that I haven't had time to get to. But I just wanted to pop by for a quickie update and to share a link :p

Update: We had a lovely time celebrating S's birthday in the Chicago area--the heat kept us from doing some things we had wanted to do but we amused ourselves in other ways and spent a lot of time in the hotel pool :p Iz LOVES the water and I do believe she would have happily lived there for weeks on end :p Trying to settle back into routines and put things to right afterwards, though, has been a bit challenging :p

And a link: Picture that helped save thousands Before Iz, I had no idea how common CHD is. I did not know that the simple little pulse ox that I get every time I am sick (I have asthma) could save a babies life by helping to diagnose CHD. Even thought my boys are fine, I wish I had known to ask for this when they were babies. I wish we didn't have to know to ask for this, that it was a normal part of newborn screening.

Monday, July 2, 2012

Thank you, World

Today was the day of Very Good Things :) Over the last year, it seems as though we have had Bad News far too often and have come to expect something major or minor to go wrong daily. Things to worry about, things to fix, things to turn everything upside down. Worry, fuss, muss, worry some more, cry, stress, be depressed. One after another after another. And then today comes along--one good thing after another after another. Interspersed with the Very Good News came pleasant family moments--S helping me plant more seeds for our little vegetable garden, B running with his birthday bubble lawnmower, Iz laughing with delight as she cruised along the swing set and practiced standing alone before she crawled across the yard on a grand exploring expedition, a celebratory lunch at our favorite chinese restaurant, relaxed shopping to pick up a few things we needed, cuddles, making dinner together, a baby sound asleep in her crib for the first time since her surgery (she will occasionally nap there but after dark? no way, no how).

It has been a very good day :)