Heart Update

We were able to talk to the heart team today. It seems that everything looks good and they are happy with what they saw. There was some leaking in one of the valves but they weren't overly concerned. I do love Dr. Hussein and he makes me feel better. They want to possibly do the Fontan in early fall before flu season. Of course, my problem is the time off. I'm a single mom and I don't have the days. The doesn't seem to matter that much to Dr. Calhoon but they will try to "work" around my schedule. He made a comment that she will be okay during the day if I have to go to work. Yeah, nurses have a lot of time to babysit my child. I just don't want to even think about that. There is a possibility that we can wait until next summer. The team doesn't want to make that the plan. They want to take it a few months or a month at a time. I want what's best for my daughter but at the same time, it stresses me out thinking of having a surgery during the school year and not having the days or someone to watch her afterward. That's one of the sucky things about being a single mom is that you don't have that luxury of having at least someone else to share this "burden". I just have to have faith that it will work itself out and God will always provide the right time and will get me through it. He always does.

On a brighter note, the high blood pressure meds seem to be helping. She is happier and I can tell she's feeling better. She's laughing a whole lot more. I don't know if it's the meds or if it's because we are together alot more (she only goes to school 2 times a week during the summer). Maybe it's a combo. All in all, things could be a whole lot worse. There was a little boy who was in the clinic who was preparing for a heart transplant. Yikes! That makes our issues so small in comparison. I'm gonna say a little prayer for that sweet boy.

Happy Father's Day and Yesterday in the ER

Gracie had been having chest pains since Thursday night. She was waking up crying...not night terror crying but pain crying. She wanted me to rub her chest and she said it hurt. I gave her the purple Tylenol which helped but it seemed that she was asking for the purple almost every 4 hours. That isn't like her. She doesn't complain about pain rather she becomes a troll and acts out when she's not feeling great. I had called her cardiologist and he wasn't too concerned. I was concerned after several dayscrying, tylenol and chest rubbing so we spent Saturday afternoon in the ER. I just wanted to make sure for my own state of mind that her little heart was okay. After 5 hours, it turns out she is okay. I was relieved. I think what frustrates me is that I don't know a lot about these things and her particular cardiologist doesn't really reassure me. It's almost like a blow off. She's doing better. We've only had one call for Tylenol in the last 24 hours. So, I'm waiting to hear from the doctor about her surgery this week, hopefully Tuesday afternoon.

We had a good Father's Day with my dad. We are lucky to have him and I hope he likes the Muno shirt we made him.

Yo Gabba Gabba is her medicine

Who would have thought that a children's program can help make a child feel better? Well, it seems that Yo Gabba Gabba is Grace's special medicine that helps her. Right now she is obsessed with the doctor episode. We are watching it at least once every day. I had to convince her to watch another one but she ended up asking for the doctor and "Teeeee" (totee). It's probably because she can relate that someone else feels horrible and has to see a doctor. Lord knows my girl sees enough of them. So, one thing I never ever thought I would ever say but Thank You God for Yo Gabba Gabba.

The Cath Experience

Yesterday my baby had her first cardiac cath. It won't be her last. We had to be at the hospital at 7:30 a.m. We got there early and the Kidstop was full where they were registering kiddos having surgeries. But, we were in the prep area in about 45 minutes. We met with the cath doctor who is awesome and the anesthesiologist. He said if he saw anything wrong, he would try to fix it. I think that should have been my clue #1 for the day. They gave her some medicine to relax her and she was loopy watching Yo Gabba Gabba (which I think is how it began in the first place so I think it was even more enjoyable for Grace...last thing she said to me before they put the mask on her was Mama...Muuuuuuuuuunnnnnnnnnnnoooooooooo). So, the doc tells me to give him about 3 hours. That's a super long time. We are in the waiting room on the 5th floor and we are the only ones until a homeless couple comes in and plops down, changes the channel and starts discussing how she told the cop that she didn't want to press charges even though this man she was with had hit her and she didn't want the man locked up and every other word was a four letter word. And she says that he can marry her now. Then they decide to leave because she wants to see if the shelter/free lunch has sodas. When they come back an hour or so later she is talking to herself and singing in the bathroom...they only stay for about 15 minutes to go back to the shelter. Apparently, this happens a lot. It's kinda scary but the nun said they couldn't do anything about it. From a safety standpoint, I think they should. Anyways, back to the cath, they find a vessel that is leaking and so they put in 8 coils to close it. He finds that there is a leaky valve too and other vessels but they are too small to get to. So, 3 hours turns to a bit longer. The doc says everything looks good and he's happy with what he saw. I don't think they know what is causing her low sat levels and they don't know what is going to be the best route. So....they are going to present her case next Tuesday to decide about surgery or what intervention will be done/not done. I should know something next week. Gracie did well. She was really groggy until about 3 a.m. and we had to stay in IMC overnight for observation where she was constantly desatting. I hate the alarms that go off there but the room is private, we had our own bathroom and I felt better that she was being monitored even though it was a pain to stay overnight. I think subconsciously I didn't pack a lot because I wanted to go home yesterday but looking back, I'm glad we did. She's been on and off fussy today which I totally get. Hopefully she'll feel even better tomorrow.

Two other things...her cath was captured by the local fox news kabb 29. It was very freakish seeing your child's torso knowing what was happening...the pediatrician called as we were leaving the hospital...Grace tested positive for mono. They did blood work last week as a just in case (she tested positive for strep)...so had to call the cardiologist...hoping it will not affect anything. Oh well...I think Grace needs her own soap opera about all the medical issues one little person can have in 2 years of her life...but it could be a whole lot worse. We truly are blessed by God and He never gives us what we can't handle. If I knew I was going to be a medical expert, I should have gone to medical school.

Family Day - Note to My Girl

My precious Gracie…
One year ago, was the best day of my life and the toughest. I was sooooo excited that morning when we flew from Beijing to Nanchang early in the morning. I was exhausted from travel and sightseeing but I couldn’t wait to be united with you. Grammy and I went to the marketplace to get diapers, snacks and other things you might need. I couldn’t think of anything but you. I was excited and nervous and scared and thrilled…just a jumbled mess. Veronica, our guide told all families to meet on the second floor at 3 p.m. Grammy and I got there about 10 to 15 minutes before. You were already there. I caught a small glimpse of you from the hallway and I literally felt like throwing up with the enormity of the whole situation. I was going to be a mom in a short amount of time. I physically saw you for the first time and got to hold you in my arms. You were tiny and really blue. You looked so scared and confused. You let me hold you but it was not close. I remember that you had no diaper on because you had pooped in the one they had you in and they didn’t have another. Grammy kept telling me not to expose your hiney (you had on split pants and no diaper). I don’t have the words to tell you how I felt the moment when they put you in my arms. It was surreal and I expected tears and joy but I felt so much more than that…just know that phrase in Jerry McGuire, when Tom Cruise says, “You complete me…” that pretty much sums it all up. You were restless and upset when we went back to our hotel room in the Jin Feng hotel. I knew something else was up with you and I took your temperature and sure enough, you had a super high fever. We gave you Tylenol and that seemed to help but that was a tough night. You were scared and rightly so. You didn’t sleep well. I cried a lot on that trip because I felt so helpless. It turned out that you had chicken pox. At the time, I didn’t know how bad it was for you to have it with your special heart. The other thing I didn’t realize at the time was how bad your little heart was and that you surviving so long without medical intervention is truly a miracle. I believe it’s your strong stubborn will that is partially responsible.
So much has changed in the past year. You’ve had a major open heart surgery and will most likely have another in a month or so. You’ve gotten taller and gained weight. You are walking and sorta running. Your speech is getting better every day. You love to play and you laugh, especially when you say the word, “boob”. You give hugs, you snuggle close and you call me “Mama.” You are more relaxed and trusting and you have a large extended family who loves you very much. I have become a more patient person and now I put someone before myself. I feel so incredibly happy and content (and stressed sometimes and sleep deprived but that’s part of motherhood). I’m so proud of how much we have grown in one year.
Today we were supposed to enjoy our Yo Gabba Gabba cupcakes and eat Chinese but unfortunately strep throat change our plans (my poor sweetie…I hate that we are always battling the sickness). I guess it’s ironic that our first day as a family you were sick and a year later on our anniversary, you are also sick. We’ll get over this one like we did the last one. Just one request, please don’t pass on strep to your mama like you did the Chicken pox.
I love you, my sweet baby girl. You are always and forever my beautiful daughter.
Love,
Mama