She Finally Laughed!!

I am so proud! I won! Jeff has been trying so hard to get Gracelyn to laugh, but she wouldn't budge. Finally this morning I got some giggles out of her. I had my phone by us and happened to capture her first laugh. I LOVE IT! I kept telling her I needed it. I am glad she listens to her mama :) .

Cath Lab Scheduled for Tuesday...

Yesterday Primary's called and said that the doctors wanted to get Gracelyn in the cath lab "right away." They scheduled her to go in on Monday. A couple hours ago I received a call saying that they had an emergency case and that she would be pushed to Tuesday, first case. I'm not sure why they have chosen the cath over surgery, but we have placed a call with the cardiologist to better understand what they will be doing and why.

Four Months Old...

Gracelyn turned four months old today. She is getting so big! At her doctors appointment this week she finally made it to ll pounds. We tried taking some pictures of her, but she still isn't real happy with the oxygen and we couldn't get any smiles out of her.

Things about Gracelyn at four months old:

Weight: 11lbs - 5%
Height: 23 1/4" -
Head circumference:

-She has turned into a mama's girl, especially when she is tired
-She always has two fingers in her mouth
-She is a cat napper
-She likes when her brother sings to her
-When it is 9:30pm she will cry until you put her in her bed and won't wake back up until 6:30am.
-She still loves her binki
-To calm her down, we wrap her up tight in her blanket, with it touching both sides of her face and put her binki in. Works every time...almost.
-She loves being outside
-She will roll side to side, but won't roll all the way over
-She wears 0-3 month clothes
-She is on .5 liter oxygen

Looking a little blue...

Gracelyn has done so well since she was born. Anytime anyone has asked how she is doing we have had nothing but positive to say. It has been a huge blessing to have had things go as smoothly as they have. As expected, thing have changed, and quickly. Gracelyn has been looking really blue the last week. Since her surgery the cyanosis (blueness) has come and gone, but recently we've noticed that it isn't going away. Sunday I thought that we had better check her O2 saturation. She was in the high 60's low 70's. On Monday she had an appointment scheduled with her pediatrician so we waited to do anything and thought we could just let him look at her. She had an appointment scheduled with her cardiologist on the 29th, but her pediatrician didn't think that was soon enough. I called Primary's and they got her in on Tuesday. First they took her in for x-rays. Everything looked great there. Then they took her sats and did and EKG. She stayed around 75% on her oxygen and the EKG was okay. Next they decided to do and echo. They didn't want to sedate her and so they were only going to try to do a partial echo with her awake. She was such a great baby, she ended up falling asleep and they were able to do the full test. Dr. Pinto, her cardiologist wasn't too happy with her O2 saturation. When we saw her four weeks ago she was in the 80's and she thought surgery wasn't in the near future. After all of her testing Dr. Pinto came to talk with my mom and I. She told us that something needed to be done soon. She put her back on oxygen and wants to meet with a team of doctors to discuss what should be done. She wants to try to do a cath on her again and see if her stent (the wire metal mesh piece in her heart) could be opened and allow for more flow. The cath is her first choice and she would schedule that for sometime in the next week. If not she will need to have her next surgery, the Glen shunt, soon. Jeff and I knew that it was coming, we just didn't think it would be so soon. We will be hearing back from the doctors soon and will update then. Gracelyn is struggling a bit. She seems miserable. She HATES the oxygen being in and has almost stopped smiling and talking completely. Mr. C isn't so great either. When he walked in and saw her on the oxygen he got upset. He walked over to her, put his head up to hers and said, "I thought she was better mom?" He keeps asking us why she needs to wear the oxygen and doesn't understand why she is "sick again". I wish I could give him the answers he wants to hear. He loves his sister so much and just wants her to be okay. Again, we ask for prayers. We ask for prayers that the doctors will make the right decision as they are figuring out what needs to be done and we ask for prayers that she may stay healthy until a decision is made. We are grateful to those that care so about Gracelyn, even though most have never met her. I am always overwhelmed by those that are following her story and so concerned about her.

A little bit of happy news: We were excited to get Gracelyn out of the house today. The weather is beautiful. Jeff was in town and so we found a restaurant with outside seating and met up with him and my parents for lunch. Later we were able to go for a walk with our cousins. It was so nice to have her out of the house!

A very special paper about Gracelyn...

We have 14 grandchildren on Jeff's side of the family. The oldest just turned seven and Gracelyn is the youngest. None of them have really had the chance to see Gracelyn. However, one of my nieces has always had an interest in how Gracelyn is doing and what is going on with her. Since she has been so concerned and interested, Jeff and I decided that we needed to let her meet Gracelyn. One night after she had been home for a few weeks we got in the car and drove to her house just so she could come out to our car and meet her. Even though she is only seven it has meant a lot to me that, although she never sees Gracelyn, she hasn't forgotten her. This week she dropped off a paper that she wrote for school. I managed to keep it in while she was at our house, but got quite teary eyed once she left. I love what she wrote and I love how Gracelyn is all bundled up in the picture with a bow in her hair, just like she always is. It really meant a lot to us and I have put it in Gracelyn's book so that she will have it forever and so she can see how loved and cared for she is. Thanks so much Ms. C! We love you lots!

Gracelyn's first tooth...

Gracelyn hasn't been smiling too much lately, she has actually been quite grouchy. She has had ear infections and started her second kind of medication to try and get those to go away. She has started to drool and eat her fingers this week. It finally hit us that we needed to check for teeth. My baby girl can't get a break in life, she is only three months old and we found a tooth coming in on the bottom. Mr. C didn't get his first tooth until 9 months and so we didn't even consider it a possibility. We have watched the tooth go up and down all week and now you won't find Gracelyn without her two fingers in her mouth.
I've been wanting to take some Easter pictures of the kids outside all week, but the weather hasn't been cooperating. Thursday it was awful outside, it snowed, rained or hailed the entire day, but Gracelyn was actually in a good mood. She and I were alone most of the day so I decided we would try to get some of her smiling. I didn't have much success, just a lot of pictures with a drool covered shirt and fingers in her mouth. I love them anyway!

What's it like to have a child with CHD?

It’s Lasix,aspirin,Captopril….It’s wondering…Lord what’s your will?…It’s monitors and oxygen tanks…It’s a constant reminder…to always give thanks…It’s feeding tubes, calories, needed weight gain…It’s the drama of eating…and yes it’s insane!It’s the first time I held him…(I’d waited so long)It’s knowing that I need…to help him grow strong…It’s making a hospital…home for awhile…It’s seeing my reward…in every smile.It’s checking his sats…as the feeding pump’s beeping…It’s knowing that there… is just no time for sleeping…It’s caths,x-ays and boo boos to kiss…It’s normalcy…I sometimes miss…It’s asking…do his nails look blue?It’s cringing inside… at what he’s been through.It’s dozens of call to his pediatrician…(She knows me by name…I’m a mom on a mission)It’s winters home bound…and hand sanitizer…It’s knowing this journey…has made me much wiser.It’s watching him sleeping…his breathing is steady…It’s surgery day…and I’ll never be ready.It’s handing him over…( I’m still not prepared…)It’s knowing that his heart… must be repaired…It’s waiting for news…on that long stressful day…It’s …praying…it’s hoping…that he’ll be okay.It’s the wonderful friends… with whom I’ve connected…It’s the bond that we share…it was so unexpected…It’s that long faded scar… down my child’s small chest…It’s touching it gently…and knowing we’re blessed…It’s watching him chasing…a small butterfly…It’s the moment I realized…I’ve stopped asking…why?It’s the snowflakes that fall…on a cold winter’s day…(They remind me of those…who aren’t with us today)It’s a brave little boy…who loved Thomas the train…Or a special heart bear…or a frog in the rain….It’s the need to remember…we’re all in this plight….It’s their lives that remind us… we still need to fight!It’s in pushing ahead amidst every sorrow…It is finding the strength to have hope for tomorrow.
-Author Unknown