The Pocket Princess

You know the old saying, "when it rains it pours!" That always seems to be the case. Today we went to see Sophia's opthalmologist to follow up on the styes that keep multiplying on her eyes. We ended up dilating her eyes due to the MRI showing she has colobomas on her optic disk. We took advantage of the opportunity to check her vision and things have gotten even worse. A year ago her vision was -7 & -8. Today it's -9 & -10 with severe astigmatisms at 250 & 350. Her opthalmologist is doing ex...
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Not one of Sophia's better days, thats for sure. She's refused to eat by mouth all day and while we have the option of feeding her through her g-tube I still have a hard time accepting that option. I was told by so many parents who's kids have a feeding tube that this will help ease things and take stress off me when she wont eat or when she's sick. I understand how that can be true and it has come in handy at times. Still, when it's a full day of non oral eating I begin to think of the what ...

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Since my last blog so much has happened. Sophia had an endoscopy that showed active reflux meaning she has a constant flow of acid in her esophagus. This acid has already began to affect her on a cellular level. We started Sophia on Carafate syrup several times a day. Carafate acts like a protective coating so that we can give her esophagus time to heal. My only concern is that at such a young age her esophagus has already been damaged.

Suddenly just two weeks after her endoscopy Sophia refus...
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It has been many months since I've last blogged. Life simply caught up with me and there just wasnt enough time in the day. Sophia is now 16 months old and over all she's in good health. This little girl, as tiny as she can be, is the strongest person I have ever known. Talk about durable! She's rolling over, doing some small babbling, loves to drink from a straw or open lid cup, plays with her toys, and her smile can light up any room. She still cant sit unattended, she enjoys standing but c...
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It's been awhile since I've last blogged. Sophia had surgery, the boys had things to do and then Sophia got sick. Basically life caught up with me and kept me busy. Although I'm extremely tired tonight I had to put down my thoughts and feelings so here goes....

The other day I was talking with my sister and she made a comment about how God knew long before I was even thought of that Sophia would be in my life. God had all this planned and set out exactly how he wanted it to go. My older sister...
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It's amazing how one day you can feel at the bottom of the world and then the next your flying above the clouds. How one day you wake up and realize you've been neglecting yourself while trying to learn to balance life and all it's unexpected glories. Today has been a good day. I mean a really good day. I woke up feeling great. Went to Sophia's follow up with her cardiologist and received wonderful news. The cath procedure worked better than we suspected and Sophia's gradiant has gone all the...
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Whats usually handled as a day procedure ended up being several days with Sophia. Although this was our first experience putting her under anesthesia. Sophia went in for an endoscopy, cath procedure on her pulmonary valve stenosis and ear tube placement. Everything started out being delayed by 5 hours so that should have been my big red flag that things were not about to play out as I had expected. Each doctor came out to consult with us after they finished their part. Each doctor said things...
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It's hard to believe that Sophia turns 5 months old tomorrow. Still tiny weighing in at 6.8 lbs and almost 19 inches long. These past 5 months have been a defining time in my life with constant ups and downs. Each week is filled with doctor upon doctor appointments. If we arent out of the house visiting doctors in their offices or in clinics we have therapist at the house. It's been hard, really really hard to stay strong and persevere through all the obstacles that are thrown our way. There ...

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Sophia is doing exceptionally well! Yesterday she was moved into an open crib and we were finally able to wave Goodbye to that darn incubator! Its so easy now getting her in and out of bed. Before it was such a long process and now I just walk over and pick her up. It's a good warm feeling to be able to see her in a crib. Yes ladies, I cried! It took 6 long weeks before I saw my princess in a crib but the wait was worth it. She's also gaining weight at a good pace. As of lastnight Sophia weig...

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Today was a rough day for Sophia. I'm sitting here crying and I'm not sure if it's from exhaustion or simply from the day we had. After Sophia's feeds her oxygen level goes up and down but today was awful. The culprit is reflux and today was terrible. Usually she stays between 99 and 78 on oxygen level but today she kept dipping down into the 50's. She's able to go back up on her own without needing oxygen but just the fact that it keeps happening is hard to handle. At one point she was reall...

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