My Little Man

Many people were worried that Z would have a hard time learning English since he didn't join our family until he was 11 months old. He was tested by early child intervention about 6 month ago after a year of work with them and he excelled beyond his chronological age in all 5 dimensions, so we're not worried about that at all.


But we think we might have another problem..... ;)


The other night at the dinner table and this morning when we were all cuddling in bed. Z counted to six.....in Spanish. He can only count to three in English!

Here is a photos of Z as we were looking at the Cheetahs at the zoo on Thursday.



As we were looking at them, the Cheetahs got up, looked excitedly in that direction and then lazily went back to sleep. you can see that the hackles on the one on the right are up. There was definitely something going on, but for the life of us, we couldn't figure it out. There were a lot of helicopters flying around (the zoo is right near the medical center so life flight flies by a lot) so I think the Cheetahs get all excited by the helicopters). Z loves the helicopters.

And here is a picture of Z coming out of a very cool clear plastic tunnel that allows the children to crawl under an aquarium filled with fish. This was the first time he was brave enough to do it!

My Princess' Hair

We'll it was such an exciting week that we just didn't have the energy to post for the last two days. Sorry about that.


Thank you SO MUCH for all of your support, thoughts and prayers. It was just what we needed. We received such wonderful news from the Dr. on Monday we just couldn't believe it. I've already put a call into E's cardiologist and once she receives the official cath report, she'll give me a call and we'll discuss the results and plan moving forward. Our next appointment is currently scheduled for April.


E did so wonderfully, emotionally and physically on Monday. When it came time to be discharged around 9pm on Monday evening, we had to remove the pressure bandage and the IV. She was *quite* unhappy about that. They was lots of crying, kicking and screaming. And I can't blame her. But we got through that and got home a bit after 10pm.


Tuesday started off a bit rough as we had some fear and crying around removing the band aid, but once we got that off, we were able to attend ballet class as an observer and then attend a friends birthday party. The birthday party attendees went to Sweet and Sassy to have their nails, makeup and hair done. You can see that E chose the princess hair style and has slept in it for the past two days. I don't know how we're going to get it out of her hair. There are SO many bobby pins.


Wednesday I kept her home from school just to take it easy. She hung out with my mom and helped take my mom's cat to the vet and went to lunch. E will go to school on Friday. Today (Thursday) we're going to go to the Zoo!


Thank you all again for all the love and support. We were so stressed out on Monday that it didn't really hit us until Tuesday when we became just totally exhausted.

Here are some photos of E's hair do along with the little doggie the nurses gave her at the hospital. She named the doggie "Ruff Ruff".

8:30pm update

Here we are at 8:30pm. E, T and I are here, hanging out here at the hospital. Food has been eaten, coloring books have been colored, cut-n-pasting books have been cut-n-pasted and movies and cartoons have been watched. Now all that is left, is just to wait the final 30 minutes until we can be discharged. The blood pressure cuff has been removed. But the pressure bandage and the IV remains (much to E's displeasure).

Hopefully, soon we'll be on our way back home!

Thanks again for all your love, support and prayers. God is good.

Love, the G's.

5:15pm update

Hello everyone,

Here is a live update from E's bedside. E is eating chicken nuggets, french fries and strawberries and drinking milk. She just made her first joke: she put a chicken nugget and a french fry in her mouth at the same time and smiled at us! She is starting to talk a bit with us (complaining about the IV in her hand) and has been awake for about 45 minutes. She is still a bit sleepy and is watching TV.

Dr. P just stopped by to say hello and check on E.

More later.

J&T

4:15pm update

We are at E's bedside right now. She is still asleep. It took one hour and 15 minutes from the time we heard that she was done to the time we got to come to her bedside. They had a hard time getting her leg to stop bleeding when the cath was done and that is why it took so long for us to be allowed to come to her bedside, but it has stopped now. The doctors gave her a bit extra sedation because Dr. P wanted her to stay still for at least 30 more minutes to make sure the bleeding stayed stopped.

The catheter was inserted into a vein/artery in her leg near her groin. They have put a pressure bandage on her leg with a clear bubble on it so that we can monitor the insertion site. The nurse was telling us that there was a lot of bruising. But she let me see it and it isn't as bad as the picture she painted in my head. But, as you know, bruises always look worse after the first day as they get better than they do on the first day.

We have ordered E some chicken nuggets, french fries and strawberries. The nurses say the kids are very hungry when they wake up. She really hasn't eaten in nearly 24 hours, except for the breakfast that we had at nearly midnight.

I want to recognize our wonderful child life specialist Miss. T. She was so awesome in so many ways: helping to prepare E for the procedure so that she wasn't the least bit anxious and helping to advocate for us and E (making sure E got the IV after she was asleep, talking to the nurses to make sure we were at the bedside before she woke up, and offering to check on E when it was taking too long for us to get called to E's bedside). You are awesome!

Thank you to all of our friends and family for your support today! The nurses have already told us that we can go home at 9pm.

J&T

3:20pm update

Just got done talking with the doctor. GOOD NEWS! Praise God! Dr. P said that the pressures that he measured in the cath were better than the measurements that they got on the echo (ultrasound). Cath measurements are more accurate than echo measurements since the cath in actually in the body and echos use ultrasound and are done externally.

The pressure differentials, while they exist, are not high enough to be sent to surgery. Her left ventricle function is great. The pressure differential between the left atrium and left ventricle is very small (zero is ideal). Lung pressure (an indicator of pressure backing up) is wonderful.

Mitral value is very small (we knew that already), but does not leak. All in all, pretty good.

Of course, Dr. P is not our cardiologist, but his news is VERY VERY reassuring and he said that in his opinion we are not headed to surgery this summer. Dr. P has already spoken to our cardiologist and we anticipate speaking to her later this week or next week to discuss the results. Our next appointment with her is in April and we don't anticipate seeing her before then. Yeah!

Now, we are back in the waiting room while Emily gets to the recovery room. The plan is for her to still be asleep until we get there and then she'll wake up. We'll spend 4-6 hours recovering and then go HOME!

2:45 update

Just got a call from the cath lab. They are done with E. The doctor will come down to talk with us in 10-30 minutes and then we can go to see E in recovery.

2pm update

Just heard from the cath lab. E is still tolerating everything well. The doctor is taking pictures and pressures. Part of the procedure involves piercing the heart wall between the right atrium into the left atrium to get a reading of the pressure in the left atrium. This hasn't happened yet. The doctor is preparing to do this now. Please pray this goes uneventfully.

The piecing is akin to piercing your vein when you have blood drawn. It should heal before the procedure is over.

During the procedure, E is lying on a table with her arms over her head (all in a line). Every two hours they have to exercise her arms so that there are no injuries from having her arms in one position for too long. I imagine that they are doing that as well around this time. They also keep a warm blanket on her to keep her warm.

We'll hear from the cath lab in an hour.

J & T

Our AM

We woke E up at 1130 last night to have some 'breakfast'. After a big bowl of cheerios E and her daddy shared a bowl of ice cream-yum!
Z woke up at 5Am ready to go while the rest of us tried to sleep in. Mom got up and gave him some breakfast- the only one in the house who got breakfast this AM before we got on the road.
Z was unhappy to be dropped off at daycare.
We got to TCH and headed to Cardiology. E changed into her hospital gown and showed it off to the pre-op suite. We again met with the childlife specialist who talked with E (and us) about the cath.

We then met the anesthesiologist and anesthetist who then gave E some Versed syrup to drink.
The Versed was pretty bitter so she gave her some cherry syrup to chase it down.

And 15 min. later we a loopy, happy daughter on a sugar high- laughing and tickling us with reckless abandon. She was smiling and waving as she went off into the cath lab. The cath cardiologist talked to us to tell us what he was going to do and what he expected. After that we needed some lunch.
Just now we heard from the cath lab telling us they are about to start the actual catheterization after getting everything set. We were told E did very well and went right to sleep- what?! This girl usually needs 3 books and a told story to go to sleep @ home- good for them!

We are in the Ronald McDonald house lounge on the cardiac floor. This is a beautiful lounge for the families. We should hear again from the cath lab in an hour. . .
T

My Sunday Night

Sunday night update: Tonight we went to Sweet Tomatoes for dinner. E ate like a horse. She was in excellent spirits. My mom was with us tonight at dinner and Emily told her all about her trip to the hospital tomorrow.

E is very excited about the fact that she gets to wake up in the middle of the night tonight and eat breakfast since she isn't allowed to eat after midnight tonight. She is only allowed to drink apple juice and water until 8am. So T and I are staying up late and we'll wake E up around 11:30pm to have breakfast or whatever it is that she wants to eat.

We're all packed for tomorrow. We want to thank everyone for their response to our email. We printed out each response and are taking them with us tomorrow as a physical reminder of your thoughts and prayers.

The general schedule for tomorrow:

8am: depart and drop Z off at school, head to the hospital
10am: check in, pre-op
11:30-noon(?): get started?
2pm-3pm (?): be done with the procedure
4-6 hours in recovery
Go home

But as my good friend tells me, I don't get to hold the map. God does. So it is out of my hands. We just have to roll with it and let E lead the way.

We'll see if we can update our blog from the hospital. xo to all.

My Day at the It's My Heart Walk

Today we spent the day at the It's My Heart Annual Walk. Thank you to all my family and friends who make a donation in my name to support this great organization that supports all of the following:

• Children who are undergoing surgery for congenital heart defects
• Families who are supporting those children both in and out of the hospital
• The great doctors, nurses and staff who help the families and children affected by CHD
• The researchers and geneticists who are working to find a cure for CHD

Here are some photos of today. The festival that followed the walk was great. The kids jumped in the bounce houses and got to say hello to Spongebob and Elmo. T got his hair painted green and we all ate Chick-Fil-A!

Here is a photos just before we started the walk.

Here are the walkers. If you look closely, you can see under the bridge, even more walkers.

E and Z holding hands during the walk. So cute.

T right after he got his hair painted. E got her hair painted with silver glitter. When we got home after the walk, T went to the recycling center and forgot his hair was green. He wondered why everyone was staring at him!

E poses with "Arty" the It's My Heart mascot.