Treasures in Gracie's Room

Shelf I bought at Swiss Days for all of Gracie's treasures.

Booties crocheted by my Grandma McBride and the famous silver cup


The blessing dress she never wore.

A fun lamp I found at Finders Keepers

I thought it would be fun to post a few things from Gracie's room. I had searched and searched for a shelf to put all of the wonderful things people had given our Gracie Girl. And I found it a few months ago at Swiss Days. I saw it and knew it would be PERFECT to showcase all of her fun things. There are only two things that are on that shelf that were purchased by me, everything else was a gift. My camera couldn't fit the fun frames and things that are on top of the shelf.

The booties were hand made from my 93year old Grandma McBride!! She made me some of these for Callie and I was looking forward to getting another pair of them for Gracie. And as tradition holds, she sent Gracie her 'silver cup' with her name and date of birth engraved on it. I love having these for all of my children, I think it is such a keepsake for them to have for years and years.

Gracie is doing pretty well. She is still slow with her motor skills though. She is grabbing her foot now which is new. She likes to stick her tongue out and attempt to blow bubbles and smile. We know she is in a good mood when she does this, it is pretty cute. I love that she is happy enough now to play and have some fun with us without crying. She is coughing, gagging and wretching a lot in the night now. She usually is on continuous feeds at night for 8 hours but lately I have been turning them off after 4 hours (then giving her a big dose when she wakes up) because she is not tolerating them. I don't know if she is getting more secretions in her throat and nose at night due to the colder weather and change of seasons or what. During the day, her vomiting has gotten a little better but she is still obviously refluxing. I see her start to cry, then she starts to gag, choke, turn blue and wretch. Throwing up follows depending on whether or not she has a full stomach. My poor little sweetheart. I know that it is just so painful for her. She is on all the reflux meds she can handle and she STILL refluxes. I hope that her second surgery helps her reflux in some way.

The big obstacle that we (and our in home therapy from Kids on the Move) have had with advancing Gracie's motor skills are her feeding issues. She is still feeding for a full hour through her NG tube, every other hour. So this means that we can't jostle her around when she is eating or directly afterwards which leaves us a small window of time to work with her. And half the time, those 'slivers' of time are either inconvenient or she is sleeping. So I think until we can get her feeds farther apart, we are going to be limited in helping her roll around, sit up, etc.

We have settled into a new kind of normal and it isn't so bad. We have our Gracie at home with us which is wonderful. She is now happy for most of the time which I don't think I have ever really had since she has been home. She likes to be held more and played with more. I always say that HLHS is a mean, mean trick. Here is this precious baby with only a scar and feeding tube to show that things inside of her are very, very wrong. Other than what I just mentioned, she feels like our normal, healthy baby. Which is what you start to believe and then you're brought back to reality when you go to a doctor's appointment or remember that you are only a few weeks away from another major heart surgery.

My kids are so attached to her now and are in love with her more than ever. I know that this next surgery is going to be a lot harder than the first one because we know her now. She is our little sweetheart more than ever before. We will just continue hoping that things will turn out for the best. Thanks again for every one's care and concern for our girl, we appreciate it!!

p.s. To all the heart moms out there who have had their babies on continuous feeds at night, I ask this question: Do you ever move them out of your room? Gracie is still in our room at night and I don't think she is sleeping as well in her port-a-crib as she does in the real crib in her room. Also, we are certainly not sleeping very well because she coughs all night long. However, I have just been too nervous to have her in the other room because I feel like she could choke and I wouldn't be there to help her! With a baby monitor, you just can't really tell sometimes how they are doing. Also, she goes to sleep around 8:00p.m. and inevitably my kids go in my room/bathroom and disturb her sleep. Just wondering your thoughts.