Cardiology check-up

Jonesa went with me today to take Jake to his post surgery check-up at Texas Children's. Ty had an important meeting at work, and it was such a blessing Jonesa came because right as Jake was called back for his echo, Grace wanted to eat. I stayed in the waiting room and nursed her, and Jonesa went with Jake. He was very scared at first and cried but calmed down eventually and laid very still for the technician. After the echo, we met with Jake's cardiologist after she had time to look at the echo. His blood pressure was on the cusp of being high so we'll have it taken again on Thursday to decide if he can be taken off of his medication. The doctor had mixed news for us today, and I'm still processing what I heard. Right now, his heart looks good. The mitral valve has minimal leaking as does the aortic valve. The surgeon was not able to get the entire membrane during the surgery which we knew. He had to leave a small piece because it was near the electrical system of the heart (layman's terms). The doctor explained today that if he would have extracted that last piece, it could have meant having to put in a pace maker. I wasn't aware of that...She said because some was left, the chances increase for this membrane to grow back. They really don't know an exact percentage to tell us because they don't have many cases to draw from for evidence. She said it might be somewhere around 30%, but then her tone indicated it might be higher.

I asked the obvious question of what happens if it grows back. I know we can't just keep taking it out and having it re-grow every year. She said if it grows back, we may be looking at the Konno procedure in which they would possibly have to also do a valve replacement. In this procedure, they would cut a hole in the heart to get the whole area around the membrane and then patch the hole they created. In most cases they would also have to replace the aortic valve often times doing the Ross procedure to do this in which they would take the pulmonary valve and make it the aortic valve and then give Jake a transplant pulmonary valve. He also could have to have a pace maker installed. This would be the worst case scenario I guess.

SIGH!

He has recovered so well from his surgery that I honestly was not thinking about possible future complications. We just ask that everyone continue to pray for Jake. We need the membrane NOT to grow back. I so desperately want Jake to be a "normal" kid and get to do "normal" kid things. I'm scared if he has more operations, he will have more and more limitations placed on him. I also know God has an incredible plan for Jake and have to remember that He is in control.

Jake is officially off "house arrest" and can be around others again. At life group this week, he was really shy and reserved, but he hadn't been around kids for two months. He was overwhelmed. It's going to take some time to get back in a routine. He's starting mother's day out one day a week in September which hopefully will help him. His speech is delayed, and we've also been seeing a speech therapist. It's possible that his heart defects have contributed to this delay so the therapy should give him a jump start. The therapist's tests show that he is only slightly delayed. He has lots of words, but doesn't use sentences well. Between mother's day out and therapy one day a week, he should start to catch up. I want him to catch a break eventually!

So today I am honestly discouraged, but I also think after the summer we've had, it's OK to be discouraged sometimes. We're headed to the lake this weekend with Ty's family, and I think it will be a great distraction and nice to get away.

Thanks for the continued prayers!

Happy Six Months Grace!

Gracie is six months old and constantly captivates us! It's hard to remember life without her. I took her for her well check-up yesterday and here are her stats:

Weight: 15 lbs./10 oz.--50th percentile

Height: 25 3/4 inches--50th percentile

She is a very busy little girl. She officially can crawl on her hands and knees and is getting quite fast. This has made all the difference in the world! She is so much happier now that she can see her world better. It's almost like she's felt insulted and left out until now. She was never content to lie on a blanket on the floor. The only way she would let me put her down without crying was sitting in her Bumbo. Now she can follow Jake around and explore the house. Of course this brings a whole new set of problems because Jake isn't too happy with Grace touching his toys. I probably say, "Share Jake" 50 times a day :) When she touches something he doesn't want her to touch, I try to get him to give her a toy she can have instead. He remembers about half the time to do that. They do play well together too as well. Jake's favorite thing to do is to tickle her, and she loves that!

Other fun things about Grace this month:

• Her bottom two teeth are close to coming through her gum so she's chewing on anything she can find!
• She unfortunately loves to watch cartoons with Jake! He never noticed the TV until he was two, but if it's on, she's interested.
• She is still nursing very well. I am enjoying this so much too! I love being her source for food and having this bond with her. I hope to nurse her until she's one. I introduced pears this past week to her. She wasn't a fan at first but now seems to like them. I'm following the food guide in the book The Baby Whisperer this time around. Pears are easy to digest and thought that would be good to try since she has acid reflux.
• Her reflux does seem to have improved. No more throwing up and less frequent spitting up!
• She gets excited every night when Ty gets home now. She's definitely a mama's girl, but she really adores her daddy. She lights up when she sees him.
• She had her first playdate with her friend Josiah last week and played in the fountains with him.
• Sleep is her biggest issue...or the lack of it! I've started letting her cry out her afternoon naps and have stretched that from 30 minutes to two hours now. She's still waking up at least 3 times at night. I have to be tough and let her cry it out I know...it's my goal for this month.

Happy half a year Grace!

Gracie at 5 months

I feel like I have sorely neglected Grace in the blog this month. Her brother's heart surgery trumped her as far as newsworthiness I guess, but there's still plenty to say about our Gracie! She was such a champ during the surgery and definitely bonded with all of her grandparents. Her grandmothers all adore her, but she's definitely stolen her grandfathers' hearts for sure. Her Pops calls her his indian princess since he's part Cherokee Indian, and she has that crazy dark hair. Her Poppy took her for walks everyday when he was here and at the hospital too and didn't mind that a bit! While we were at the hospital, we learned even more what a people person Grace is. On an elevator or walking down the hall, she would coo or screech at people until she got their attention and then she'd give them her million dollar smile. She's our passionate little girl for sure.

She already wants to be on the go so badly. She is scooting around the house and getting up on her hands and knees and rocking back and forth trying to crawl. She can't quite make that work yet which infuriates her to no end. She wants the toys Jake is playing with and will scoot and scoot until she can reach them. She still adores her big brother and just smiles and smiles at him.

She still doesn't like to sleep although she has taken the occasional hour long nap this past week. I took her into the doctor this past week, and she was put on medicine for acid reflux. I'm hoping that will eventually help her sleep if her tummy feels better. She couldn't digest rice cereal or formula (which she had to have some during the hospital week) so hopefully the medicine will help her digestion so we can start baby food soon. She desperately wants to eat and gives you the most longing faces when you're eating in front of her.

Gracie wants to be independent but she also craves constant attention. She does not like to leave my sight, and will tell me very loudly if she needs me. I probably should have invested in a nice baby sling because I have a feeling that might have really worked for her! She makes our lives very interesting and it's hard to remember life without her...what a ray of sunshine :)

She still LOVES her dolly

And, she REALLY loves being on her tummy

Her "after eating" hair...bless her heart :)

Extraordinary Kindness

Having a child go through a surgery like this really humbles you. It has humbled me how people want to help Jake and help us. Our friends have brought us food for the past two weeks and that has been so wonderful. Not only are they great cooks, but they're showing that they care. I felt guilty because I honestly can still cook; I'm not the one who is sick, but it's been so helpful not to worry about food the past two weeks and just concentrate on taking care of Jake as he heals. Our friend Ling brought us dinner on Thursday and also brought over two bags of toys for Jake that her MOPS group had bought for him. I attempted to join MOPS (Mothers of Pre-Schoolers) last year, but the timing was never right. I was pregnant with Grace and my appointments always seemed to be on the meeting days. In the spring I wanted to join but then we found out Jake needed more surgery and I started keeping him away from activities with too many other kids. Anyway, I don't really know these moms (except for Ling), but they still gave Jake toys and have been praying for him. I really hope to join MOPS this fall :)

Then, yesterday I took Jake to get a haircut. Before his surgery his hair had gotten pretty unruly and thick so Ty and I decided to cut it at home so we wouldn't risk germs by going out. We definitely aren't professionals, and his poor hair had lots of holes in it and was very uneven. Yesterday it had been 2 1/2 weeks since surgery so I figured a haircut would be a good first trip out of the house. I explained to the girl what had happened (about our attempt to cut his hair and his heart surgery) and she was really sweet and cut it short to fix it. When I went to check out, the lady who cuts Ty's hair was at the register and she wouldn't let me pay. She said she really wanted to take care of the cut this time for Jake. My eyes welled up with tears because I couldn't believe her kindness. Ty had told her Jake was having surgery and she heard me telling the lady who cut Jake's hair about it and wanted to help. I say that's extraordinary kindness.