Friday, May 28, 2010

5 Months...

This has been one of the hardest months since Gracelyn has been alive, but one where we have seen the most growth. Physically she is growing. The last time we were at the hospital she broke the 12 pound mark. 12 pounds EVEN! You can tell she is growing. She looks nice and healthy with big chubby cheeks. SO cute! (She's even got a little fat role starting on her legs). She has changed the most this month out of any other. She has found her feet and loves them. She tries to get them into her mouth whenever she gets a hold of them. She is getting a lot better with her hands.

Things about Grace at 5 months:
-She loves patty cakes. It always calms her and makes her smile
-She is a mama's girl 100%
-She loves bath time
-When 9:30p.m. comes she screams until she is put to sleep
-She loves to be outside. It calms her when she is upset
-She loves to keep her oxygen in her mouth
-She likes when her brother sings to her
-Her hands are always in her mouth
-She is on 3 liters of oxygen
-She still has a little piece of gortex in her heart to keep her alive
-She still has her metal/mesh piece in her pulmonary artery
-She is still on .83ml propranolo 3/day for her tachycardia
-She still takes 1/4 aspirin daily

Wednesday, May 26, 2010

Need your help...please

We are always being asked what people can do to help us. We really are doing great! The only response we have ever given is for prayers. Without a doubt, I know that is what has got Gracelyn to the point she is at with so little trouble. I know that is why her heart has begun to grow. In ten days she will go into her next heart surgery. I feel a bit helpless. Okay, very helpless. Recently I was reading another mom's blog, her son just received his surgery date for his fontan. What she wrote explains exactly how I feel. I hope she doesn't mind, but she said it perfectly, "We feel certain relief and extreme anxiety all rolled up into an eerie calm."

Those who know me know I'm always working on some kind of project. For my next project I've decided to make something for Gracelyn to take into surgery with her. Maybe it is to make me feel better more than it is for her right now, but I know she will appreciate it when she is old enough to understand.

I couldn't decided between a little material book or blanket, so I am going to do both. Everyone always tells me that they are praying for her, so I want to send her into surgery with a little prayer blanket. What I need from you is a heart drawn on a 3"x3" piece of material, any material, any scraps you have or maybe even one that represents you. For example, Mr. C chose Spiderman, Jeff did camo, pink camo, I am sure I will get something like the Cubs from Uncle Kurtis. I will be attaching the iron-on paper to it before it can be cut, so if you will just draw a heart, any way you want with-in the 3"x3" square I will cut it out. (Grandparents-do a 4.5"x4.5'" square)

If you will send two of the same material/heart I am going to attach one to the blanket and one in a book with your name by it. If you are sending for more than one person please label it(with a sticky note or something) with the correct name so I can add your name to the book.

I really appreciate your help. Perhaps it will make it a bit easier to hand her over to the doctors wrapped up in a blanket representing all the prayers that are being said for her. Hopefully this made sense if not call me or email me at I would like to have all of the hearts by Monday, May 31. Call me and I will come get the hearts or email me and I will send you our address. If you want a heart added for you, but don't have the time or material. Let me know I will add a heart in your name.

Thank you! We love and are grateful to you all!

Saturday, May 22, 2010

10 minute procedure+3 hours behind schedule+adding an echo+sats dropping to the 60's=staying overnight at PCMC

It is 11:30 a.m. on Saturday and we are still at Primary's. Blah! If this is a precursor to what our next surgery stay will be like then...

Sorry, I shouldn't be typing right now. My attitude isn't the greatest. Lack of sleep, no answers and a child that is turning blue with 13 days to go until surgery will do that. I need my sleep. Jeff and I both probably got a good two hours sleep last night. We miss Mr. C. It is just a difficult time right now. That is the reality of it. Consider yourself warned for the next few weeks. Happier times to come soon. :) (Mr. C could give you a happy story. He got a sleepover. Grandpa and Grandma to the rescue, again. )

We arrived at the hospital just before 1P.M. yesterday. We went through pre-op and they told us it would be just a few minutes until they took us back. A minute later they came back and said they were running three hours behind. We decided to take her to cardiology and get that over with. They looked at her and she was great. Heart sounded good. EKG was good. She was sating at 76%. Nothing needed attention before her surgery. Dr. Pinto told us to just try and keep her healthy and above 70% for the next two weeks.
At 4:00 p.m., still nothing. Gracelyn was a complete angel. She hadn't eaten since 10:30a.m. and just laid calm in her daddy's arms (if I held her she would get frustrated trying to eat) she eventually fell asleep in his arms.
Finally they got us back to have her tubes put in. They said normally it would about 45 minutes before we could leave to go home, but the cardiologist ordered an echo since she was already sedated and that would add about an hour. Because of the echo they would also be doing and IV and breathing tube. After an hour they came to get us. She did great! The doctor came out to talk with us and said that it was the right decision and that she should be feeling better soon. They took us back to find her in post-op. She was already on her second bottle of pedialyte. They told us that they were going to watch her for about a half hour. She did fine for a while, but they couldn't keep her oxygen up. They kept a close eye on her. Our nurse was AMAZING! Her shift had been over for a long time, but she was so concerned with Gracelyn she wouldn't leave. Jeff and I hadn't eaten so they went and got us some of the food that they give the kids coming out of surgery. We got Sprite, ice cream, Mac and Cheese and crustable PB & J sandwiches. :) Around 9:30 p.m they decided that she needed to stay overnight to be monitored. She continued to do poorly. At 1:30 a.m. the attending doctor ordered an x-ray. Nothing there. There weren't any changes from her x-ray a month and a half ago. Finally around 5:30 a.m. she fell asleep. While she was asleep we saw oxygen anywhere from 70-75%. We were happy with that. When she is awake she stays around 65%. Not so great...

SO, she still isn't doing great, but there is nothing we can do. There is nothing, except surgery, that can help her. We have to continue to monitor her frequently and keep her healthy for 13 more days. I think that this is what it took for me to be willing to hand her over to the doctors for heart surgery. At this point, I just want her to have the surgery and be fixed. We hope to be home soon, sleeping in our own bed.

Thursday, May 20, 2010

Tubes tomorrow at 1 p.m.

Sorry for the play by play lately. It is much easier to blog the info than to make a bunch of calls. Dr. Pinto (cardiologist) called this morning and said that she has spoken with all involved and that they agree she will be okay to have her tubes tomorrow and keep her heart surgery scheduled for June 4, two weeks. YEAH! I am so happy for Gracelyn. I aslo heard from the ENT's office and they have her scheduled for 1:00 p.m. tomorrow for the tubes. Dr. Pinto will come and take a look at her heart while we are in recovery. I am so grateful for my pediatrician. I am grateful that he is looking out for Gracelyn (and myself as well, I think he realized I was done). He didn't give up until we got results. Thank you Dr. Rose!

Wednesday, May 19, 2010

Lots of phone calls and two surgery dates...long post ahead, beware.

Wow! What a day. I have spent a lot of time talking with doctors today. First thing this morning Gracelyn's surgeon's office called to let us know that she will be having heart surgery on June 4. I spoke with her for quite a while. Her surgeon has a lot going right now including transplants. Should someone else come in sick, they would get bumped and Gracelyn would be moved up. You know, sick, like ear infections maybe. She has a date, but still, they WILL NOT operate if her ears are infected. She suggested that I see my pediatrician and get her put on antibiotics until surgery. That way she would be ready any day, should they call us in last minute. Our pediatrician saw us a few hours later. He was as frustrated as me. He said her ears aren't getting better and that she needs tubes now. He said no antibiotic will fix it, we have tried four. He feels they are putting her life in danger by allowing the infection to possibly get to her shunt. He left our room and called Primary's to speak with one of the ENT doctors there. He came back in and said she was scheduled for tubes on Friday and said that the ENT doctor would talk with everyone involved. We are also scheduled to see cardiology on Friday. Before we left he gave her another injection of rocephin. After we left I called our cardiologist's office. I wanted to inform her of what the pediatrician and surgeon's office said. I told her I didn't want to be the middle man anymore and there needed to be some direct communication between the four doctors. I don't know what the best decision is, all I know is that I am done watching my baby struggle because no one is willing to move. She promised she would be in contact with everyone and that we would have answers tomorrow. She is scheduled to see Gracelyn Friday and see just where things are at. Before we saw our pediatrician I also had to stop by IHC home care to get another regulator. One that could get her right where she needs to be. When I told the gentleman what she was at he didn't believe me. When we got home tonight I decided to monitor Gracelyn for a while. I couldn't get her sats to read above 65%. At times she was in the 50's. I watched her for about a half hour before we decided to take her to the ER (YUCK...Creepy!). We wanted to hook her up to their machines and get a reading. Our machine is brand new and REALLY nice, but doesn't have the wave length on it like the hospital to tell if it is a good reading. Jeff and I both read okay on it, so when knew it was working. We just needed to know for sure. Luckily we have my parents so close, we dropped of Mr. C and head to the hospital. They hooked her up and she was around 79%. Right where we want her.

Tomorrow is a new day. We will see what it has to bring. Please pray for these doctors as they decide what is best for our little one. We have to trust them, we don't have a choice. We ask Heavenly Father to guide them to make the right decision.

(Side note: Before we left the hospital I turned to the ER nurse and said, "Thank you so much!" She look up and me and said, "What!?!" I told her I had thanked her for her help. She said, "No. Thank you! That is the first time I have been told thank you all day and now you guys are the ones I am sending home and keeping the rest." It made me feel bad. We couldn't make it without them and the doctors and they aren't appreciated, just expected to do what they do. SO, next time you are being helped by a nurse, be sure to thank them.)

'Lil Baby Blue and Great Friends...

Yesterday was a tough day at our house. Gracelyn has discovered her voice and decided to loudly express herself and let us know of her discomfort...the entire day...only pausing for two 20 minute naps. The night before I noticed she was looking REALLY blue. We checked her oxygen saturation and she was around 67%. We bumped her up to two liters and she tolerated it for the most part, but you could tell it was annoying her. It upsets us that we are watching her quickly start to slide. We were told that we would have a surgery date by Friday and still nothing. Jeff decided to call the surgeon's office and see what was going on, again. He was told that they hadn't scheduled her and that she needed to get her ear infection gone before they would operate. In the mean time I decided to monitor her oxygen, I couldn't get her above 70% even bumping her up to 2 liters. I decided enough was enough. Somebody needed to move in some direction. They won't operate on her heart because of ear infection, they won't operate on her ears because they would have to wait for six weeks after tubes are in for her heart surgery and she doesn't have six weeks with her heart. I spent most of the day in tears. I don't know what to do. As I tried to call Primary's I accidentally called a friend, not just any friend, but the greatest friend I have ever had. It is easy to tell the rest of the world that "everything is fine," but when she asked me I lost it. Hours later I had dinner at my door. Thank you. Love you Celeste! Shortly after that the door bell rang again. A sister from my ward said she was out doing her visiting teaching and got the impression that she needed to stop by. Rose you are amazing and touched us with your spirit. Thank you for what you have done for our family! I eventually spoke with our cardiologist who became frustrated as I told her that we still didn't have a surgery date. She told me she was heading to the surgeon's office and to expect a call soon.

IHC also came yesterday. Gracelyn's oxygen needs are more than her pediatric concentrator provide. They had to bring out another concentrator that would go above two liters. Right now she is at 2.5 liters to keep her around 76%. She is being such a good girl and tolerating it so well. Her lips have been quite purple for a while now. It happens so slowly you don't really realize it's happening. With uping her oxygen they have changed color. It is nice to see her with her beautiful pink lips again, like she had when she was born.

We really are blessed to have such great people in our lives.

Sunday, May 16, 2010

Surgery update...

We have been getting a lot of questions on a surgery date. I left Grace's cardiologist a message last week. She was very apologetic when I told her we still hadn't heard a date from them and that the surgeon's office said they didn't have paper work. Apparently her paper work was "lost in the shuffle." She said we would plan on a week or so. That would mean it would be this upcoming week. I told her of the issue with the ears and she said that she would have to have her heart surgery before the ear surgery. At the time that broke my heart that she would have to deal with the ear pain for so much longer. However, the last two days and nights have been much better. Tomorrow morning we meet with the ENT doctor that will be doing the tubes. The cardiologist said that we would have a date by Friday so we could schedule tubes with the doctor on Monday, but we have yet to hear anything.

IHH Family Picnic

On Saturday we went to a picnic with other heart families in the area. I have avoided these groups in the past, denying that we were anything like them. Who really wants to be associated with a group that usually involves your child having a four inch scar down their chest? Not me! Unfortunately it wasn't optional to be like these people...amazing people. I recently have come in contact with other "heart moms," as I have had to learn to be called. After talking with these moms I have found that, though no two experiences are the same, they understand. They understand the words, they understand what I am talking about, they understand what it feels like to not be able to see or hold your baby after you give birth, they understand what it is to hand your baby over to doctors to have their tiny chest opened, they JUST UNDERSTAND. It has been so nice to talk with them.

With that being said, I decided that I would open the door a little, but only a little for now. With Jeff and Mr. C by my side we joined these other families at a Intermountain Healing Hearts picnic on Saturday. Nobody stared at the oxygen, everyone knew why she had it and many understood what it was to have a child dependent upon it. During this whole experience, for nearly a year now, I have felt totally misunderstood and very judged at times, by those that you would expect to care the most. During those few hours we spent with these other families I felt so comfortable, understood and not judged. I am very grateful to those that take the time to organize these events. One tradition they have started is to have a heart shaped treat/dessert contest. Jeff and I designed a little heart shaped sucker tree and made heart suckers for our "entry." We took first place!! YEAH! We won passes to the new Kangaroo Zoo. It will be perfect for us to spend a little fun time with Mr. C before our next hospital stay. (I was a little bummed I didn't get a picture of it when it was full and once we set it down the suckers went quick. Jeff decided it needs a third tier for next year. :) )

Paul & Lynette Cardall Fireside

On Thursday I had the opportunity of meeting Paul and Lynette Cardall at a fireside. My parents joined me, but had already had the chance to meet Paul on Christmas Eve at Primary's when he stopped by Gracelyn's room to bring some gifts. One of my fellow heart moms, Mindi, invited Paul to speak at her stake and invited me to go. (It was just for the Relief Society so I wanted my mom to go with. At the last minute I decided we needed to drag my dad along. :) He was a good sport...there were about 5 other men.) It was GREAT! Paul is so inspiring and has such a great spirit about him. He spoke of his life and the trials that he has faced enduring 36 years of CHD. He also spoke of the miracles he has seen. His life is a miracle. He played some songs for us and it became a little overwhelming for me. Everyone in that room listened to him, but having to actually be living through the things that he was talking about was difficult. It was hard for me to hear it from an adults perspective. Gracelyn can't tell me what hurts and what is tolerable. He talked about the drain tubes and how painful it is to have them removed. I would have never imagined that to be so bad. (I'll be sure to leave the room next time Grace has hers removed.) He spoke to us a bit about genealogy. He talked about how much paper it would take to trace back to our first father. He then compared that to how much it would take to trace our spirits back to Heavenly Father and that there is a direct link. I know what Paul says he knows to be true. He wouldn't be alive if he really believed otherwise. I have found a lot of peace and hope through Paul's life. I have found a lot of peace and hope through the things that Paul writes on his blog. Recently he wrote, "Life goes by quickly. Every moment counts. With every passing moment how much more fulfilling our lives will be if we count our blessings and seek to recognize the daily influence of a loving God in our lives. He understands all things and why he brings children home. We have to trust Him or we have nothing to trust in." Paul and his wife truly touched me. Paul has had to endure a lot, but I can't imagine the pain the Lynette has also been through. She really stands out as a strong daughter of God. After they spoke I had the chance to meet them and take pictures with them and my parents and Mindi. I'm grateful for the chance I had to talk with them. Before we left Paul told me to look up John 9:1-3. Thank you for inviting us Mindi! Thank you Paul and Lynette for your spirit!

Gracelyn's Story at Walmart

Gracelyn's Aunt T works at the Walmart near our house. Right now Walmart is trying to raise money for Primary Children's Medical Center. Aunt T asked us if we wanted to give them some pictures of Gracelyn and her history to help promote this. We have had such a great experience with PCMC we didn't hesitate to share her story and all. Gracelyn's picture is hanging right by the donation container.

Wednesday, May 12, 2010

Who needs sleep anyway...?

Unless you are a doctor or nurse you probably haven't seen much of us in the last 5 months or so. I thought I would post a recent picture of Gracelyn and I, just so you don't forget us. I know I look a lot better than other pictures I have posted in the past, but you can tell Grace isn't so happy. She has really bad ear infections. She is on her forth antibiotic and still no relief. The last being rocephin injections. For the past two week she has been miserable. It started around the same time as her last cath and so we were blaming it on that. She won't sleep. She went from sleeping 10 hours to waking up 10 times a night. She doesn't want to talk or smile much. She just cries. She won't let anyone hold her, but me. Now don't get me wrong, I am all for her being a mama's girl. However, I do need to shower and use the bathroom sometimes. I miss my happy little baby! I feel so bad for her. Her pediatrician has decided enough is enough and that we need to get tubes put in. With her other problems they will only do them at PCMC. He gave me the number of an ENT doctor in Layton that operates there. We had hoped for tubes this week, but he didn't even have an opening to just look at her for a week. We called PCMC to see what doctors they had available and they are scheduling for June 23. I contacted PCMC yesterday because it has been two weeks since they said she was put on the schedule for surgery and we still haven't heard anything. They couldn't find her paper work. I talked to them about her needing tubes and trying to plan that around her heart surgery. The women I was talking to stopped me and said if she has ear infections they won't operate and if she has tubes they can't operate on her heart for SIX weeks. In my head I am screaming, "REMEMBER THAT LITTLE PIECE OF PLASTIC IN HER HEART THAT IS CLOSING? OH, AND NOT TO MENTION THE LITTLE WIRE PIECE THAT IS NARROWING?!?! COULD SOMEONE PLEASE HELP ME?!!" I'm not a doctor, but as her mom I am not comfortable knowing this and thinking we could have to wait at least two more months for surgery. I called her cardiologist yesterday and we still haven't heard back. So...needless to say we are stressing a bit. Nothing a bowl of ice cream at 5:00 in the morning can't fix though, right? Wrong. Now I have a belly ache on top of it all... :(

Saturday, May 8, 2010

Funny Mr. C...

The other day Mr. C and I went to a store. As we were walking around he saw a baby around the same age as Gracelyn. In the past he has tried so hard to understand why we don't get to take his sister anywhere. As we passed the little baby he said, "Mom, why does that baby get to go in the store?" As I quickly walked away from the other mother I tried to explain to him that it is okay that she can't come with us right now, we are still very lucky to have her in our family and that we can play with her at home. I proceeded to tell him that we are so lucky to have such a special little sister. He interupted and loudly said, "Ya, that baby isn't special!"

Friday, May 7, 2010

Lots of firsts...

We have had an exciting week with Gracelyn, we have been able to experience a lot of firsts. These things would probably seem so small to most, but are exciting for us after having kept her locked up in the house for so long. Last Sunday we were able to go to church as a WHOLE family, well at least Sacrament. Jeff and I have been taking turns going for the past four months. Yesterday we went up to the Park City Outlets shopping. We pushed her around in her stroller, only going into a few stores, but it felt nice to get her out.
After shopping we headed over to Dairy Keen in Heber City. This is the first time that we have taken Gracelyn into a restaurant with us. It wasn't until there that I became anxious. We never took her out of her car seat and washed up before touching her, but I still worry so much about her getting sick. She recently had her last synagis shot (the $1200 injection she gets every four weeks), so I know she is somewhat safe since that will be in her system for a few more weeks. It has been interesting to watch the little kids stare at her. Both at church and at the restaurant the little kids would stare and ask their parents what she had on her face. I've never been one to like attention, so it has been a little difficult having people stare at her the way they have.

On Wednesday my sister was able to get her to roll on to her back anytime that she would lay her on her belly. Sunday she finally went from her back to belly.
Monday we went for a hike up Ogden canyon. Gracelyn's first hike. I strapped her to me and away we went. She LOVED it! When we first put her in the carrier she wouldn't stop smiling. She was so happy. She talked to us the whole way and stayed awake the entire hike.

Last, but not least, Gracelyn finally laughed for her dad. Jeff was playing peak-a-boo with her and I must admit she giggled and giggled and giggled for her daddy. Have I mentioned she did laugh for me first? :) Lots of fun firsts this week and still lots to go with our sweet girl.