Hanhah did great during her surgeries, the surgeon found that her Nissen had totally come undone. After surgery she went to a regular floor, we were only there for a few minutes and she started having trouble staying awake and breathing. We were admitted to the PICU and they gave her narcan to help wake her up. She had a great night last night and we are just waiting to go to a regular room. She will be here until Monday or Tuesday.
THANKS for all your love, prayers and support.
Family
Saturday, February 28, 2009
Thursday, February 26, 2009
Prayers for Hannah
Life around here this past 10 days has been crazy. I will post about some of the positive things that have happened as soon as Little Miss Hannah gets home from her surgeries and hospital stay. She will be having her surgery tomorrow at 9am. She is having her tonsils and adenoids removed, her Nissen repaired, and a hernia repair. Each of these procedures will make her feel better, she will be able to breath better and she won't have to sit upright with slow feedings.
Each of us has been anxious and worried because of our experience with Jacob last year, so our home teachers from our church came over tonight and gave Hannah, each of the girls, Mike, and I a blessing of comfort. These prayers were very powerful and gave each of us comfort and we feel very positive about tomorrow's surgery. It helps to have many friends and family members praying for her surgery to go well and for her to some through it all and come home.
Thank you for your prayers! I will keep you posted on Miss Hannah.
Each of us has been anxious and worried because of our experience with Jacob last year, so our home teachers from our church came over tonight and gave Hannah, each of the girls, Mike, and I a blessing of comfort. These prayers were very powerful and gave each of us comfort and we feel very positive about tomorrow's surgery. It helps to have many friends and family members praying for her surgery to go well and for her to some through it all and come home.
Thank you for your prayers! I will keep you posted on Miss Hannah.
Tuesday, February 17, 2009
Our little wounded angel is now our amazing 4 year old
Our little Hannah came into this world fighting to stay alive. Her wonderful, courageous birthmom almost lost her own life during Hannah's delivery. I will never forget the day she was born, we were driving to Idaho to be there for the delivery. When we were 20 minutes away from the hospital the NICU doctors called us and told us to hurry as Hannah and her birthmom were both in critical condition. They each were strong and they both survived. Hannah has become a pro at being a survivor. She is here due to the loving prayers, faith and the power of fasting from our family and our church family. Each of you from the youngest to the oldest has a special place in our hearts and we know Hannah is blessed because of your faith. We hope you enjoy this special presentation in celebration of Hannah turning four years old.
Monday, February 16, 2009
Update on Hannah
Several people have asked me for an update on Little Miss Hannah so here it is.
We saw our pediatric surgeon on Friday and he agreed that Hannah needed to have her Nissen redone he will also be fixing a hernia she has. The hernia is located between her open heart surgery scar and her Nissen,G-button scar. She has an upper GI scheduled for next Monday so the surgeon can get a picture of the anatomy of her stomach since she has some anomaly in every part of her body and he did not do the original nissen as it was an emergency and he was out of town. He will schedule her surgery after he gets the results from the upper GI. We go to see our ENT tomorrow about her tonsils and adenoids. Our surgeon said that all of the surgeries could be done at the same time. She will be in the hospital for at least 5 days. Mike, the girls and I feel alot better about the thought of her having surgery. We not only love our surgeon but he is the best. Over the years when my children have been in the hospital I have asked nurses and parents about their experiences with the surgeons and no one has anything bad to say about him. If he is walking down the hall in the hospital and he sees us he Always stops gets at eye level with Jacob or Hannah and shakes their hand an asks how they are doing. I feel that if Hannah has the best surgeon, the best ENT, and the anesthesiologist we love then we have to give the rest over to the Lord and have faith and hope.
In the mean time she is very grumpy because she is not sleeping well at night and she has to sit upright for an hour and twenty minutes four times a day while she is fed. The feeding schedule frustrates her so because she is all about trying to stand up. Tonight at our family home evening she was sitting on the floor and pulled up on Noah's leg and was half way standing before she lost her grip and gently laid herself to the ground.
We saw our pediatric surgeon on Friday and he agreed that Hannah needed to have her Nissen redone he will also be fixing a hernia she has. The hernia is located between her open heart surgery scar and her Nissen,G-button scar. She has an upper GI scheduled for next Monday so the surgeon can get a picture of the anatomy of her stomach since she has some anomaly in every part of her body and he did not do the original nissen as it was an emergency and he was out of town. He will schedule her surgery after he gets the results from the upper GI. We go to see our ENT tomorrow about her tonsils and adenoids. Our surgeon said that all of the surgeries could be done at the same time. She will be in the hospital for at least 5 days. Mike, the girls and I feel alot better about the thought of her having surgery. We not only love our surgeon but he is the best. Over the years when my children have been in the hospital I have asked nurses and parents about their experiences with the surgeons and no one has anything bad to say about him. If he is walking down the hall in the hospital and he sees us he Always stops gets at eye level with Jacob or Hannah and shakes their hand an asks how they are doing. I feel that if Hannah has the best surgeon, the best ENT, and the anesthesiologist we love then we have to give the rest over to the Lord and have faith and hope.
In the mean time she is very grumpy because she is not sleeping well at night and she has to sit upright for an hour and twenty minutes four times a day while she is fed. The feeding schedule frustrates her so because she is all about trying to stand up. Tonight at our family home evening she was sitting on the floor and pulled up on Noah's leg and was half way standing before she lost her grip and gently laid herself to the ground.
Sunday, February 15, 2009
Blog Challenge: 25 Random Things About Your Child With CdLS
Jacob...
1~ loves music!
2~ smiles all the time.
3~ has inspired many.
4~ loves his school teachers and Therapists
5~ once he forms a bond with you he never forgets you.
6~ loves Primary.
7~ is a Momma's boy.
8~ is stubborn
9~ has had 21 surgeries
10~ is fourth out of six in "birth order" but is 5th of 6 chronologically
11~ loves to go for rides in the car
12~ has always had great musical rhythm
13~ loves to be outside
14~ can sign over 45 signs
15~ loves to listen to music and stories about Jesus and Heavenly Father
16~ has 28 cousins
17~ loves the color yellow
18~ loves to go bowling
19~ loves to watch the Little Einsteins
20~ is eight years old
21~ has an ornery streak
22~ loves to cuddle
23~ can verbally say "Mom-Mom, Nigh-nigh"
24~ can hum the tune to many songs including Beethoven's Fifth.
25~ is such an important part of his family he teaches us everyday and is a joy to us all!!!!!!
1~ loves music!
2~ smiles all the time.
3~ has inspired many.
4~ loves his school teachers and Therapists
5~ once he forms a bond with you he never forgets you.
6~ loves Primary.
7~ is a Momma's boy.
8~ is stubborn
9~ has had 21 surgeries
10~ is fourth out of six in "birth order" but is 5th of 6 chronologically
11~ loves to go for rides in the car
12~ has always had great musical rhythm
13~ loves to be outside
14~ can sign over 45 signs
15~ loves to listen to music and stories about Jesus and Heavenly Father
16~ has 28 cousins
17~ loves the color yellow
18~ loves to go bowling
19~ loves to watch the Little Einsteins
20~ is eight years old
21~ has an ornery streak
22~ loves to cuddle
23~ can verbally say "Mom-Mom, Nigh-nigh"
24~ can hum the tune to many songs including Beethoven's Fifth.
25~ is such an important part of his family he teaches us everyday and is a joy to us all!!!!!!
Saturday, February 7, 2009
A Gift from Africa
In December I signed up on my sister-in-law Allison's Blog to play a "Pay it Forward" game. I have really enjoyed playing this game and had fun when I paid it forward to three of my blogging buddies. Allison went to Africa on a medical mission later that month, so she got her pay it forward players gifts from Africa. I received my gift this past week. I have really enjoyed reading her posts that journal her trip. It is really nice to have this bag that was made in one of the villages she was in. Thanks Allison
If you would like to read about her trip you can at
www.ethanjamescurtis.blogspot.com
Thursday, February 5, 2009
Just when you think all is calm.......
With our weather yo-yowing all winter Hannah has had a lot of respiratory issues, but the last three weeks have been different. I have always given her 9 pm feeding to her while she is in bed because she is usually asleep by then and she also has continuous feeds through the night. She had a Nissen and G-button put in when she was one month old due to a life threatening reflux-aspiration event. Jacob is 8 and has never had a problem with his Nissen, but through the CDLS online support group I knew that many kids have had to have revisions. She has been having problems with a gurgling cough and this only happens at night. Mike and I both felt that she was most likely refluxing and that formula was getting in her throat at night. So I made an appointment and we saw our pediatrician yesterday. She agreed that it may be reflux and ordered a radiology procedure to see if it was and sent us home with a prescription for prevacid while we wait. Then last night the doctor's office called and said they were able to get her in for the procedure in the am. Our children's hospital is a regional one and it usually takes a while to get in for radiology tests, I was glad we would not have to wait to long to find out if we were right or if we were worrying needlessly. So I went this morning and she had the test done. The test was not bad and it only took about 45 minutes but the radiology tech did tell me that she in fact was refluxing but that our doctor should have all of the results tomorrow morning. I loaded Hannah up in the van and started to drive home. I could not help but have a good cry. I think the hardest part of having a child with medical special needs is finding out there is another procedure or surgery that your child may have to have. It is hard to see your children go through the physical trials and pain. We do not know yet if medication and a change in feeding schedule will do the trick or if she will have to have surgery again. I guess it does not help that this week marks one year since Jacob had his cardiac arrest and was fighting for his life. That was THE hardest trial I have personally been through. I do know that my Heavenly Father loves me and that he loves Hannah and He will not give us anything we can not handle. I can't help but feel His hand in guiding us to the doctor and in getting us in for testing so soon. So as hard as it is to get bad news I am so thankful for the promptings that I get as a mom so that I can get the best possible care for my children. The greatest lesson I learned last year was that Hope is a very powerful tool! So I will hope that Hannah will be alright and that we will continue to be blessed to know how to take care of her.
Wednesday, February 4, 2009
Sunday, February 1, 2009
CDLS Blog Challenge
What kind of jerry-rigging or child-proofing have you done at home to meet the needs of your child with CdLS? This could be a serious or comical post.
We haven't had to do much but here are the few things we have done.
1.We keep certain paths in the house free and clear because Jacob's vision is very poor and he does not see objects in the floor unless he is looking down. Boy, does he get mad if there is something that gets in his way!
2. We keep child safety handles on the door going to the laundry room and the garage.
Jacob like to let himself out or likes to get inside the dryer.
3. We keep a door bumper on his closet door because he likes to go inside and shut the door. He is not able to open the door from the inside and the bumper makes it so he can not shut the door at all.
4. There have been times we have had to tie a pillowcase over his pump at night because he would push all the buttons and the alarms would go off.
5. We had to put the child saftey lock on the door of our van where he sits because one day last summer I was driving down a busy road and he reached down and opened the door. He laughed himself silly but I did not find it so funny. Thank goodness his car seat is bolted in the car.
6. Jacob sleeps in a twin bed that used to be the top of a bunk bed set so it had rails on one side and Mike added rails to the other side. When he did not have the rails he felt compeled to get up and this would go on all night so for us the rails work and Jacob just knocks on his wall or bed when he wants up.
We haven't had to do much but here are the few things we have done.
1.We keep certain paths in the house free and clear because Jacob's vision is very poor and he does not see objects in the floor unless he is looking down. Boy, does he get mad if there is something that gets in his way!
2. We keep child safety handles on the door going to the laundry room and the garage.
Jacob like to let himself out or likes to get inside the dryer.
3. We keep a door bumper on his closet door because he likes to go inside and shut the door. He is not able to open the door from the inside and the bumper makes it so he can not shut the door at all.
4. There have been times we have had to tie a pillowcase over his pump at night because he would push all the buttons and the alarms would go off.
5. We had to put the child saftey lock on the door of our van where he sits because one day last summer I was driving down a busy road and he reached down and opened the door. He laughed himself silly but I did not find it so funny. Thank goodness his car seat is bolted in the car.
6. Jacob sleeps in a twin bed that used to be the top of a bunk bed set so it had rails on one side and Mike added rails to the other side. When he did not have the rails he felt compeled to get up and this would go on all night so for us the rails work and Jacob just knocks on his wall or bed when he wants up.
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