We are so ready for Halloween!!!

Good News…

Mary Clare now weighs 10 lbs and 14 oz!!! Our hospital stay upset her feeding schedule and she has still not gotten back on track. I was afraid that she had lost weight, so I was thrilled when I took her to our pediatrician this morning and realized that she has gained since we were at MUSC. She was 10 lbs 8 oz there last week. She is back to feeding about every three hours even at night, but at least she is gaining weight!! She still struggles to eat and only takes in about 2-3 oz at a time, but we are working on it!

McCanless is writing…

McCanless is working on writing her name at school a bit and hopefully will master it by Christmas, but for now when you give her a blank sheet of paper and ask her to write it, she produces the following…

Of course, it is easier to write Daddy’s name, so Mel gave her a sheet of paper with his name printed on it and asked her to copy it. She did a pretty good job on it…

She is also beginning to add details to her drawings…

(Click on images to enlarge)

Just a walk in the park….a typical day in our house.

Lately, Mel and I have realized that it takes McCanless FOREVER to do anything. Not that she is slow, she just finds other things to do along her way. Before taking a walk recently, she had to change clothes, something she finds necessary with every new activity. I allow her to dress herself when she isn’t going to church or school. Everywhere else is usually fair game. With Mary Clare strapped in my “baby back pack” as McCanless calls it, I went outside to water plants while I waited on McCanless to dress for our walk. This was her the first time I checked in on her…

This photo doesn’t show the heels she had on previously. I told her I refused to allow her to wear heels to take a walk. (Last week I allowed her to wear her life vest for our walk and in hopes of not seeing anyone, we ran into half of our neighborhood. Today, I was NOT having to explain this one.) So after begging to to just PUT ON SOMETHING…she told me she had to change because she couldn’t wear her heels. Obviously this meant her outfit wouldn’t work. (I should have known…nothing is easy with her) This was outfit #2 that she was still not completely satisfied with…

By this point I had already put Mary Clare in her swing, unsuccessfully tried to straighten the playroom and had started on kitchen chores. I thought instead of rushing her as we usually do, I would see just how long it would take her to get ready for that walk. I suggested the walk around 2:30. When Mel walked in the door around 6:00 PM that evening, she was still in the playroom rummaging through her dress up trunk looking for that perfect ensemble.

Doing Well…

We were able to come home on Tuesday afternoon! (Mel has been working on my blog and I haven’t been able to post…we are still “tweeking” it and working on the design)

Mary Clare had a UTI and was on two nights of IV antibiotics at MUSC, and is now on a daily antibiotic until her kidney study, which will be at our next clinic visit. On Tuesday we were able to snap a few pictures of Mary Clare and her HLHS friend, Emerson! I spoke to Erica, Emerson’s mom, this morning and she is doing well! Erica is tired, as any new mom is, but is so glad to be home.

Heading home…hopefully!

We are currently waiting on “rounds” so the doctors can officially tell us we can go home. The nurse practitioner has told us we are “probably” going home (and she is really the boss on this floor) so, we probably will. Mary Clare has been doing well today and has not had a fever in about 24 hours. Emerson’s mom just dropped by and they are packing up and heading back to Augusta today!! I’m so happy for them. I know they are ready! I hope to be able to snap a picture of the girls together before they leave.

Mel has been trying to update the blog, so excuse the current design..or lack thereof. We are trying to incorporate Mary Clare’s name in the design. I’m playing with the comment feature and hopefully will be able to accept your comments soon…maybe after a confirmation.

Good News, Bad News…

Good news…Mommy and Mary Clare don’t have to travel back to Charleston this Wednesday for clinic….

Bad news…we are already here!

Mary Clare gave us a big scare yesterday, but is doing well today!! After taking her to see the pediatrician on call in Hartsville, we all decided it was best to go straight to MUSC yesterday. Mary Clare just wasn’t herself, and began to grunt with each breath, usually a sure sign of breathing difficulty. However, we do have a grunter on our hands, so thankfully, her breathing is okay.

She was uncomfortable because of a high fever and urinary tract infection. We were admitted to 7C last night around 7PM, an IV was started in her tiny foot and after a night of antibiotics and fluids, Mary Clare is back to her wonderfully sweet nature. To be safe the cardiologists did an EKG, and chest X-ray, and we are still waiting on a bit of blood work to return to rule out any other possible infections. (ie possible viruses from her big sister)

Mary Clare is such a champ and has enjoyed visiting with her nurses. She especially loves the mobile that was placed over her bed. (Last time we were here, she wasn’t really focusing on it) She feels at home because we are in the same room we were in last time!!

Hopefully, after another night of IV antibiotics, we will be able to go home tomorrow, if all is well. They do want to do a study of her kidney function. She may have reflux of her kidneys, which would be the reason for the UTI. If that is the case, she will only have to have a daily antibiotic.

Her heart is great, and that is a huge relief! Also, more good news…our HLHS friend Emerson is going home tomorrow! It was great visiting with her and her mommy, but we both agreed that we hate it has to be up here!!

Update on Mary Clare….10 weeks old

Mary Clare is eating more and more each day!! She is still only up to around 3 ounces at each feeding and eats around every 3 hours. (A “normal heart” baby would be somewhere between 4-6 ounces at this point)

She IS growing though! At a whopping 10 lbs and 6 ounces, she is now the weight of my baby sister, Kate, at birth! (I’m looking forward to the day she is my brother’s birth weight, which was around 13 lbs!) She still wakes at least once during the night between 10PM and 7AM, but that sure is better than her previous every two hour schedule.

She is a very happy baby, and smiles often. She is such a good baby and I swear if she makes it through “baby hood” with McCanless (and so far she is a champ) she can make it through ANYTHING! McCanless loves her dearly, but is a bit rough with her….and loud…and a bit hands on too much sometimes….and still requires a lot of “McCanless time.” Mary Clare can sleep through anything and is a patient baby; something I’m really not used to! McCanless was a bit difficult as an infant, if you can believe that.

My girls are so sweet together and I love watching them interact. I’m so happy for them and so glad that they have each other!

Baby Emerson update…

Some of you have been asking about baby Emerson and she is doing well right now. She and her mom have been at MUSC for 25 days now. Our total stay was around 27 days. She has moved up to 7C, which is the recovery unit for heart babies. Now her biggest hurdle will be the feeding. It is probably the most frustrating time because you know that going home is just around the corner, but still so uncertain. The babies seem to do so well one minute, but struggle so hard the next.

Mary Clare and I will travel back down to MUSC for a check up on Wednesday. Hopefully, Emerson and her Mommy won’t be there for our visit, but if they are I hope to be able to take a few pictures of our miracle babies together. As I have told Emerson’s Mommy numerous times, I hope one day they will be the best of friends and be able to chat about their heart surgeries and how they “knew” each other before they were born.

A little won’t hurt, right?

Remind me to never leave a 3 1/2 year old on the bed with a 2 1/2 month old…well, at least with breakfast sausage nearby.

For a treat on her first day of 3K, I decide to carry McCanless to Mommy’s bed, allow her to watch cartoons and feed her a big breakfast in bed…sounds like an extra special treat and it is…the breakfast part, anyway. She usually has a Poptart, or cereal on Mommy’s bed watching cartoons. (I know, I know, she is still the princess around here) BUT, for the very first day of school, Mommy went all out and served scrambled eggs and link sausage.

All was well, McCanless was happily eating, Mary Clare was sitting, chewing on her passy, so I ran to the kitchen to throw in a load of laundry. Back in my bedroom about 2 minutes later, I leaned over to kiss Mary Clare and noticed a familiar scent.

“McCanless, did you give Mary Clare sausage?”

McCanless sitting entranced by Dora the Explorer, and not skipping a beat told me quite frankly, “NO MOM, I tried to give her a taste, but she only sucked on it.”

Interesting information on CHD…

I found this on a well-sourced, hospital sponsored website….

What is CHD?

* CHD (Congenital Heart Defect) is a structural problem with a baby’s
heart that is present at birth.

* CHD is the #1 birth defect in the U.S. and the #1 cause of birth-related infant deaths.

* 1 in every 100 babies is born with CHD. Of those, 1 in 10 is born with a fatal defect.

* Approximately 1 million American children and adults with CHD and childhood onset heart disease are alive today.

* Nearly twice as many children die from CHD in the U.S. each year than from all forms of childhood cancers combined.

* Funding for pediatric cancer research is 5 times higher than for CHD.

* In the last 25 years, advances in treatment of CHD have enabled half a million U.S. children with significant heart defects to survive into adulthood.