Tuesday, April 27, 2010

"She has come a long way..."


Jeff and I are sitting in the post-operation area with Gracelyn right now. She is doing very well. She woke up for a bit to eat and once we wrapped her up and gave her her binki she went right back to sleep. I am overwhelmed with gratitude to say the least. This place keeps you on such an emotional roller coaster. I was worried about throwing up the whole way down because I was so nervous. Right now I'm having a hard time keeping in the tears in I am so happy.


Gracelyn was scheduled to be in the cath lab for four hours and to stay overnight. An hour and a half into it we were called to come see her. We knew that if they were going to work on her they wouldn't have been done that fast. We expected to hear surgery would be soon and that is exactly what they told us. The papers have been submitted to get her on the schedule and it is expected to be in the next four weeks. We have tried to stay optimistic while realizing what reality actually is. We have been told that if her right ventricle was going to change in size we wouldn't begin to see improvement until at least six months. The conversation we had with the doctor after today's cath was a bit different from what it was when she was two days old. At two days the doctor could hardly look us in the eyes when he told us we had a long hard road ahead. Today as he showed us inside her little chest I couldn't help but interrupt him and question if it was just me or if there was a big improvement in the size of her right ventricle. He smiled and said, "We can definitely see a difference, she has come along way from the first time we saw her." We talked for a bit. He explained that she has had muscle grow around the ends of both her stent and shunt and the risk of trying to fix it to buy her a little more time wasn't worth it when we know she needs the Glenn surgery either way. We aren't excited for surgery, but are anxious to get it over with and get her back to healing again. If Gracelyn's heart continues to improve we have a chance of avoiding her third surgery, the fontan. The glenn shunt is actually made of her native tissue and would grow with her as she becomes an adult, so there would be nothing to remove and possibly be no other heart surgeries. During the next surgery they will remove her BT and stent.


Grandpa, Grandma, Camee and Mr. C were upstairs waiting for us. Unlike the last cath, where we sat down stairs not wanting to go up and break the bad news to our family, I could hardly wait to get to them this time to tell them of her improvement.


We are so grateful to her doctors. Gracelyn was a "pioneer" in what was done with her stent. That was the first time that the doctors have done what they did to her. This stent is what probably provided increased flow to her RV and gave it reason to grow. Before leaving the doctor, I asked him one last time about her future (knowing the answer to be "only time would tell" of course) and he responded, "Just live for today, that is what you need to do no matter who you are. You never know what life can bring."


I guess this is the point where we say THANK YOU! People are always asking what they can do to help us and we always respond that all we need are prayers. Today it became evident that all those that constantly remind us that they are praying for her REALLY are praying for her. So, THANK YOU to those that continue to pray for our beautiful baby and family. Prayers are all that we have to offer to help our girl improve. During the last LDS conference one of the shows in between sessions showed a mom of a sick child. At one point during her interview she said, "I had to decide between faith or fear, they can't exist together." That short sentence changed me. She was right. How could I say that I trusted Heavenly Father and have so much fear at the same time?


Since the doctors didn't do too much we will actually be going home tonight. We have a few more hours for her to be monitored and we will be heading home! YEAH! (and yeah if you made it through that long post :) )

Cath Lab...

We had to wake Gracelyn this morning at 5:00 a.m so that she could be done eating by 5:30. We set the alarm, but she woke up around 4:30 a.m. :( I spent the rest of the morning just holding her as she slept. Mr. C decided to join us and I couldn't keep him from "loving" her.
Before we left Grandpa and Daddy gave her a blessing. As always, Jeff gave her a beautiful blessing. He blessed her to be strong and the doctors to be guided to do what was best for her. On our way to Primary's the hospital called looking for us. The doctor was way ahead of schedule. They wanted her right then. We went to check in and the doctor was there waiting for us. He told us that they were going to go in and "look around" first. Once they got a good look they would decide what would be best to do. They have the possibility of opening the shunt and/or stent. He hopes that they will be able to do something to buy her a few more months before they operate and replace her shunt. The surgery is scheduled to last four hours and she is scheduled to stay overnight. She has been in for an hour and a half now. We hope to hear from them soon. Sweet Gracelyn right before she went in. She was so happy and just smiled at the nurses as they took her away.

Friday, April 23, 2010

Call from the Cardiologist...

Gracelyn's cardiologist called this afternoon to explain what we will be doing on Tuesday. She said that the doctors that will be doing the cath are going to try and open her shunt some with hopes of getting more oxygen. The procedure that she will be having is what they did to her when she was three days old. They will be going through her leg up to her heart. They hope that this procedure will buy her a little more time before she has her next surgery. Even if it doesn't work it won't have been done in vain. An echo doesn't provide the imaging of her heart that they need to see before her next surgery. She would have had to of had a cath either way. If the procedure works and gives her a few more months to grow this cath will give them the information they need and won't need to do a cath again before her Glen surgery. We were happy to learn this information. Jeff and I were both worried about having the procedure, knowing the risks involved, and having it done in vain.

Thursday, April 22, 2010

She Finally Laughed!!

video
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 :) .

Wednesday, April 21, 2010

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.

Friday, April 16, 2010

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!

Monday, April 12, 2010

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!

Saturday, April 3, 2010

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!