Monday, January 25, 2010

10 ounces in ONE week!

We had another very positive doctors appointment this week. As I have mentioned before, Gracelyn is on a diet of breast milk mixed with a high calorie formula. The doctors were concerned about her putting on weight. At her first appointment with our pediatrician she was in the tenth percentile on her weight. Our doctor wanted her to come back the following week having gained 7 ounces, she gained 3. He sent her home for another week wanting her to gain an ounce a day, when she was weighed this week she had gained 10 ounces. The doctor was really happy, he said she had gained too much. He decided to let me nurse her and see how she did. YEAH! I was amazed, after 5 weeks of bottle feeding she adjusted to nursing right away. We were also able to cancel our speech therapy appointment because of all of her progress over the last few weeks. So for me, no more pump, at least for this week. Let's hope she does well and continues to gain the weight the doctors want her to.

Wednesday, January 13, 2010

First follow up doctor appointment

We went to our first follow up visit to the cardiologist today. As you can tell from the picture we had a GREAT visit. Gracelyn is up 5 ounces since last Thursday. She is eating almost a full bottle (50 cc's) every feeding. We tried giving her her medications by mouth and she did great. They tested her saturation with and without her oxygen on, she was at 100% when calm and at 88% when she was crying. They want her between 75-85%, she is a lot higher than they want her. So, needless to say, we have lost the oxygen and the feeding tube!! YEAH! We are so happy! Jeff couldn't wait to get them off. The minute the doctor walked out of the room he began removing things.She has also been taken off of half of her medications. She is still on the beta blocker and aspirin. Both of which she could be on for the rest of her life and we didn't expect the doctors to take her off of them. They did chest x-rays today and it showed that her heart was larger than it was when we left a week ago. The doctor told us that the x-rays aren't exact and that any movement could affect the picture. He told us he wanted to do and echo on her right then and that we would know what was going on before we left. Fortunately, he was right, nothing was wrong. The x-ray didn't show her heart exactly as it is. The sonographer that did her echo kept saying how great her heart function was. The doctor told us that he is sure she will have to have the next procedure, but miracles do happen. We pray for those miracles to heal her heart. We won't know for a while what is going to happen. We learned today that though her right ventricle is really small, thick and firm, everyone's right ventricle is when they are born. Sometimes is takes 1-3 months to loosen and with her probably 6 months, but the chance for it to grow IS there. We won't know exactly what it is going to do for a while, but fortunately with the third surgery taking place in 2-3 years we have the time for it to change and improve. We have hope that it can grow and begin to work. It is really difficult to sit back and know that things can change, but have no control or power to help her chance of improvement. Right now our only power is our greatest power and that is the power of prayer. We are so grateful to those that continue to offer prayers on her behalf.

4 Weeks Old...

Gracelyn is four weeks old today. She has gone through so much in the first four weeks of her life. I can't believe what a strong baby she is.

Week One: This picture was taken the day Gracelyn was born. Instantly her whole body was covered with IVs and sensors. While in the NICU she quit breathing 3 times and needed to be resuscitated. During her first week of life she was taken to the cath lab to try and fix her small pulmonary valve and artery. These problems were fixed with the cath, but during the procedure they discovered a bad tricuspid valve. We were told she would stay longer to have a BT shunt inserted.
Week Two: During Gracelyn's second week of life she went through her first heart surgery. Doctors had plans of going through her side, but had the feeling to open up her chest, fearing she may need the bypass machine. During the surgery her sternum was broken and she was placed on the bypass machine for 20 minutes. After surgery she was attached to 10 different machines.
Week Three: Gracelyn spent week three recovering from her surgery. During this time she had a rapid heart rate. At one point it was at 230 bpm causing the cardiologists to try to put her body into shock. To stop her from breathing and to stop her heart from beating they placed an ice pack over her entire face. Later they discovered Atrial Ectopic Tacycardia. The cause of her rapid heart rate. She was placed on a drug to slow her heart.
Week Four: Gracelyn has spent this week at home healing. She has done so well! Since returning home she has really progressed.

At four weeks old Gracelyn:
-Loves to be held
-Loves to have her hair washed
-Can hold her head up
-Has begun to smile
-Loves to be a"burrito baby"(wrapped up super tight)
-Loves when it is noisy (won't sleep in silence)
-Loves her binki
-Sleeps 6 hours at a time during the night
-Is still covered in adhesive from all the IVs
-Is still healing from all of her pokes
-Has a heart that sounds like a washing machine
-Is on 4 medications
-Eats partially through a feeding tube
-Is on .06 liters of oxygen
-Has a piece of gortex in her heart to keep her alive
-Makes her parents and brother very happy
-Has received more prayers than any baby I know

The last four weeks feel like a dream. Gracelyn has received several blessings. All stating what a joy she is and how much she has taught us in such a short time. We realize that all of us face our own kind of trials and challenges. Though most of the time it is hard to be grateful for our trials we are so blessed to have ours come in such a beautiful little package. We are so glad to finally have her in our lives!

Tuesday, January 12, 2010

Making progress...

Gracelyn is doing great! We are so proud of her! Friday she ate her first full bottle. If she keeps it up she could have her feeding tube out soon. We can't wait to get rid of it!

We met with our pediatrician Thursday. It is nice to have someone we can take her to that is close to home. Her doctor is the same doctor that we have been taking Mr. C to for the past three years and coincidentally happens to have done his fellowship in cardiology. After speaking with him I feel confident that she is in good hands. He gave us some pretty strict restrictions when it comes to where we can take her and who can see her. Pretty much no where and no one until May 1st. He feels that if she were to get RSV it would probably take her. Mr. C has been sick, but he feels it is important for them to bond. Anytime he holds her he needs to be in clean clothes with a mask and clean hands. We knew we needed to be careful with her, but I didn't expect what he had to say. It is completely different from what we are used to at our house, we are always on the go, but I know this short time will be worth it to keep her healthy. Mr. C couldn't have said it any better than when he told me that he "wanted to take her to everyone's house so everyone could see her out of my belly." She is such a sweet beautiful baby I hate to not be able to share her sweet spirit with the world.

They weighed and measured her for the first time since we left Primary's. Here is where she is at:
Weight: 7lbs
Height: 20.25"
Saturation: between 86-90

Her weight is down two ounces from when we left the hospital. I would be worried about this, but we have had a few problems with her diet since we returned home. Her diet consists of 2 parts breast milk to one part Pregestimil formula. When we left Primary's we were given some formula since it was a holiday and it is hard to find. When we got home I ordered some from Target and when I went to pick it up they didn't bother to let me know they couldn't get it in. She was on just breast milk for a couple of days and her little belly struggled. She would just cry and wouldn't sleep much. Fortunately, I have great friends and within hours of making the call I had 2 cans of Pregestimil brought to my house from McKay Dee. Thanks Kathryn! We got everything straightened out and her diet back to normal. She isn't fussy anymore and is sleeping, waking only once during the night to eat. We will go back to the pediatrician on Thursday and he hopes that she will have gained an ounce each day. Her sats were great! Higher than they want them. Hopefully that means we can lose the oxygen soon too. We will also be meeting with our cardiologist on Wednesday. We pray all will go well with both appointments and that she continues to make progress.

Monday, January 11, 2010

First Bath at home

On Januray 4th Gracelyn was given her first bath at home. Like I mentioned in a previous post she loves her hair washed. Mr. C washed her hair and kept her calm while I washed the rest of her. He is a great help!Thanks to the Palmers in our ward she was able to use a cute pink towel instead of one of the blue ones we have around our house. Thanks Dan and Ann!

Monday, January 4, 2010

Our new "normal"...

We have been at home for two days now. I'm not sure how long it will take for us to figure things out and be "normal" again, but for now our days are pretty much full of giving medications, pumping, working with Gracelyn to eat out of a bottle, gavage feedings, checking her heart rate, checking her capillary refill, keeping Mr. C from trying to "love" his baby sister too much, answering calls from the hospitals/medical supply stores/insurance companies...a little different from the way things used to be, but better because our family has grown from three to four.

She is such a beautiful mellow baby! She is so sweet! I could stare at her all day, if only there were time. All of her medical needs make her high maintenance, were it not for those, she would be the easiest baby. The first night home we set alarms to wake up and check on her, assuming she would wake us up first. We ended up waking up with the alarm, she was sleeping so peacefully. We woke her up to feed her and she slept until 8am. The past three nights have all been the same. We feed her at 11p.m., wake up to feed her at around 3 or 4a.m. and when she wakes up around 8a.m. The rest if the day she is like clock work, every three hours she lets us know she is ready to eat. She only gets fussy when she is hungry or has a dirty diaper. We are very blessed to have her be so mellow. With the stress of having to balance everything that she requires it is a huge blessing to have her be so calm and sweet. We had a scare the second night. We woke up in the middle of the night and checked her heart rate. It had a really strange fast beat. We called down to Primary's and they suggested we head to the ER at McKay. We worked through it with our Nurse Practitioner at Primary's. At this point it is difficult to see anyone in Ogden because no one has a reference point of what her heart does and what it sounds like. We will be meeting with her Doctor here in Ogden this week. We will also be working with a speech therapist every week to try and get her eating better. We have home care that will be coming in three times a week to weigh her and make sure that she continues to gain weight. When we left the hospital she was up from 6lbs. 12 ounces at birth to 7 lbs. 2 ounces. Right now she is on a diet of breast milk mix with a high calorie formula. We feel like she really is doing GREAT!

Mr. C is doing okay, he hasn't been feeling well and so we are having to keep him from getting to close. He isn't really understanding, he just wants to love her. Every time he changes his clothes or bathes we make sure he gets his mask on and we let him hold her until he is done. He has been an amazing help! Anytime we need something he is so willing to do whatever we need. All of a sudden he seems so big. Gracelyn is lucky to have such a great big brother.

Jeff and I are also doing okay, sleepy, but good. With only a few melt downs, of course on my part not Jeff's, we are getting by. Just trying to figure out a new "normal" for our life.

Saturday, January 2, 2010

Leaving the hospital...

At 7:50a.m. on New Year's Day we were told we could go home. We were so excited to finally be able to leave. I guess excited and nervous would describe it better. Excited to finally be able to bring our new baby home, excited to be able to be a family and be with Mr. C again, excited to sleep in our own bed, excited to eat homemade food, but very nervous for our new life.
It took us nearly four hours to leave once they told us we were being discharged. With it being a holiday none of the regular people were there to discharge us. Our nurse had to try and figure it all out on her own. While we sat around waiting we decided to give her a bath for the first time. She cried until we began to wash her hair. She loved it! We will continue to sponge bathe her until her incision is okay to be submerged in water.
We drove straight to grandpa and grandma's house to pick up Mr. C. We didn't tell them we were coming and they were so excited to see us home. The first thing we did was get Mr. C washed up and let him hold her.
He is going to make such a great big brother! He just wants to hold her and tell her how much he loves her. As much as we wanted to relax we spent the day with medical supply people coming over and trying to coordinate things with home care. Later that evening Grandpa, Grandma, Camee, Brian and Cami came over to visit Gracelyn at her new home.

Friday, January 1, 2010


We are on our way home.

One more day...

Our nurses told us that they thought we would be going home today. When the doctors came in this morning doing rounds they told us we needed to stay one more day to be monitored. We were quite disappointed after having been told we would be leaving, but trusted what they told us we should do. She has been doing so well since they gave her the beta blocker that we knew it would be a quiet day. Her heart has been beating perfectly.

She had her bandages taken off today. This is really the first chance we have had to see the incision. It looks really good. Much better than we had imagined.
Gracelyn hasn't been trying to eat at all. She isn't putting any effort into it. We think she is exhausted from having her heart beat so fast and she is finally resting/recovering now that her heart is allowing her to. We try to feed her by bottle, but once she has given it a good try we do a gavage feeding. The milk is put into a syringe and into her NG tube.
People are so generous with their donations to PCMC. Every time you walk passed the front door someone is bringing in some sort of donation. We have received so many hats and blankets. It has been such a quiet easy day, I could tell Jeff was getting bored. He had to find something to occupy his time and so he began putting all the different hats we have received on her.
Aunt Camee made this one while she was in surgery. By far my favorite.
My parents came down and stayed with her for a bit while Jeff and I went home and spent some time with Mr. C and showered. After we left home Mr. C spent the night with Grandpa, Grandma and Camee celebrating the new year and banging pots and pans on the porch. Jeff and I watched fireworks from our hospital room as we were feeding Gracelyn. We hope to start the new year off right by bringing our baby girl home in the morning.