October 23, 2000
Kaylee is doing better today, her doctor said her heart actually had a murmur today which she didn't have when she came in, which means her heart is not a sick as it was when she was admitted and her heart is stronger due to all the medication they are continuously giving her to help regulate her heart and to keep her out of congestive heart failure. She has been smiling a cooing and seems happy and comfortable.Thank you Carol for the Beautiful Poem....it helps to know there are people who care and I appreciate it more than you know.....
~ Poem ~
I Will Be There
Sometimes the road of life becomes unbearable and it seems easier to give up than to go on. But you should always remember that there is light at the end of the tunnel. For every tear; you will smile, for every rainy day; there will be a rainbow, and for every moment of every day, forever and always there will be someone there to love you and to confide in. I will always be there for you. To carry you over the rocky roads and lead you through the tunnels. To share with you the smiles, the tears, the rainy days and the rainbows. Whenever you need me I will be there.
October 24, 2000
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| Daddy & Kaylee night before surgery. We couldn't take our eyes off of you...we were so scared. |
We spent today preparing for the surgery tomorrow. Doctors and nurses were explaining everything that will happen to Kaylee and preparing us for what it will be like after surgery. We also met the surgeon Dr. Damus who is supposed to be one of the best pediatric heart surgeons. He explained the risks of the surgery to us which was very scary but also explained that if she does not have the surgery that she wouldn't live very long. Not anything I would ever would want to experience again. Kaylee was also visited by a nun who prayed with us and gave Kaylee a blessing.
Please keep Kaylee in your prayers tomorrow. She will be taken up for surgery at 6:30-7:00 a.m. to be prepped for surgery which will start around 8:00a.m. The surgeon said the surgery should last about 3-4 hours so she would be back in the Intensive Care Unit around 11:00-12:00.
We also want to thank everyone who sent there messages to Kaylee via the Guestbook. I was reading them to her today she was just smiling. Thank you for all your prayers and support. We will try to keep you all informed tomorrow.
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| Nana, Kaylee and Mommy she was still wearing heart monitor. |
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| Kaylee the night before her surgery |
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| Kaylee the night before her surgery. We couldn't sleep all night. Daddy and I just sat and watched you. Praying you would be alright. |
October 25, 2000
Kaylee's surgery was today. The day started very early. Alan and I stayed in the hospital so that we could spend time with her before her surgery. She seemed happy as usual. The nurse came in around 6:15 a.m. to give her a special benadine bath to get her cleaned up for the procedure which Kaylee did not like. The surgeon came to Alan and I and explained the srugery and what he was going to do. He told us that she was very tiny and that there was only a 30% chance that Kaylee would make it through this surgery. It scared us so much to hear that percentage, but we knew without the surgery she would have no chance of surviving. Around 6:45 a.m. we carried Kaylee up to the pre-surgical area and waited till the anesthesiologist was ready to begin prepping her. At 7:10 a.m., the anesthesiologist came for Kaylee. He would only let one of us walk her into to the operating room, so Alan just gave his little girl a kiss on the forehead. I walked Kaylee into through the operating room doors before they took her from my arms. It was so hard to let go...and I cried. I just kept praying that everything would work out fine. We went downstairs to the surgical waiting area where the surgeon called us at 11:25 a.m. to tell us that the operation was a success. Everything thing went just as expected. He said that it was a very complex operation but everything went smoothly. He was able to take a piece of her artery from her left arm and use it in repairing her aorta. Also a band was placed on the part of her heart that supplies blood to her lungs. The band slows down the blood supply to the lungs which keeps her from going into congestive heart failure. This was done due to the hole in her heart which they were unable to repair today because it would have been too risky and will be repaired when she is 18-36 months old depending on how she is doing.
After waiting about an hour we were finally able to go and see her in the Pediatric Intensive Care Unit (PICU) she was hooked up to many tubes and IV's. She is also on a ventilator to help her breath. The doctor said she was doing very well. They were even able to reduce the amount of oxygen they were giving her through the ventilator to 50% because her body was fighting to breath on it's own which is a very good sign. She also finally getting a pulse in her lower extremities which she did not have before due to the narrowing of the aorta. It was horrible to have to see her like that but we were reassured that in a few days she should start beginning to be herself again as she recovers. We are now home and will be going back up to see her around 5:00 p.m. as we are only allowed to stay with her for short times right now because it is important for her to rest and regain her strength and let the doctors and nurses work to help her get better.
October 25 (Night)
Well we went to visit Kaylee tonight which the doctors and nurses have been working around the clock to keep her comfortable and stable. Her color looked so much better. She was actually looking a little pinker and had more color than the first time we saw her. She was nice and warm and for the first time her feet were getting all the circulation and oxygen they were lacking. Her pulse was beating stronger in her feet. We were told that maybe tomorrow her ventilator tube would come out since she is trying to breath on her own and they decreased the amount of oxygen down to 40% which means she is doing at least 60% of the breathing herself. She also had to receive some blood tonight due to loss during the surgery which is common for a baby since she is very small in size and any blood loss is significant. The doctors think that she is doing great and should improve more by tomorrow. We will keep you posted of any further developments.
October 26, 2000
We thought today that Kaylee would be able to come off the ventilator but the doctors decided that she still needed the ventilator in due to her having still a little bit of fluid in her lungs and if they took out the ventilator she would have to work to hard at breathing so the doctors decided that it would be best to keep it in one more day to give her time to rest. The hardest part of today was her realizing that she had the ventilator in. I guess being more aware of it made her upset. She would try to cough or get really upset and cry but you could hear nothing. It was so sad to see her like that and not be able to do nothing to make here feel more comfortable except to stroke her little head and tell her it would be all right. She would eventually calm down and just go back to sleep. Despite all that she is looking better. She has gotten back alot of her color and is still having great pulses in her little feet and they are as pink as ever.
October 26 (Night)
Tonight Kaylee seemed more comfortable. The doctors gave her some medication to help keep her calm and to rest easier. The doctors also decided that they would try in the morning to get her off the ventilator. Once the ventilator is out then they would be able to take out her chest tube and a couple of the IV's and hopefully we will be able to hold her again. Hopefully if all goes well she will be able to get out of the Pediatric Intensive Care Unit by Saturday.
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| This is a Picture of Kaylee Tonight around 9:00 p.m. She was resting very nicely and was very comfortable. |
I also read Kaylee all of her get well wishes that everyone has been sending via the Guestbook. We want to thank you all for them. They have been such a great source of support through this difficult time.
October 27, 2000
Today Kaylee was taken off the ventilator and alot of the tubes / iv's were removed. She was alot more alert. She seemed very comfortable. By late afternoon (5:30 p.m.) they even tried giving her about an ounce of glucose water. She gulped it down. I guess since was her first meal since the night before surgery she was hungry. She cried because that was all we were allowed to feed her. The doctor's wanted to start out slow and she how she would tolerate it before giving her any more. She wasn't happy about that and did cry for more but eventually cried her self right to sleep.
October 27 (Night)
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| David visiting his baby sister. |
We returned at 8:30 p.m. she was still sleeping. We bought David up with us this time because he had been feeling really sad and wanted to see his baby sister to make sure she was alright.
It was also time for her next feeding. The nurse said this time we could actually hold her. The last time I held her was when I gave her to the nurse at the operating room doors. It felt so good to hold her again and I think she was looking for that kind of attention too. She ate all that she was allowed and was happy with it this time. The nurse said her next feeding they would give her regular formula. We got Kaylee in pajamas and laid her down to sleep. It was the most normal she had been since the surgery. Tomorrow, if she keeps on doing well the doctor's will be able to remove the iv from her neck and get her into a regular room by late afternoon.
October 28, 2000
Kaylee is doing very well today. This afternoon they were able to take out the last IV so the only thing they have her hooked up to is the heart monitors. She is eating well and is being moved into a regular room this evening so Mommy gets to sleep over with her. If all goes well Kaylee should be home by Monday or Tuesday.
October 28 (Night)
This Picture was taken Saturday Evening (Oct 28) around 5:00 p.m. while we were sitting in the ICU waiting for her bed to be made in the regular room
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| Pop-Pop, Nana & David. The first time we got to hold her 2 days after surgery. |
October 29, 2000
Good News! The doctor came in to see Kaylee today and said she will most likely be able to go home tomorrow. She has been progressing very nicely and can do the rest of her recovery at home from this point. She is still a little sore from her incision but we were reassured that she should feel better as each day goes by.
Hopefully tomorrow we will have our little girl home with us again!
October 30 & 31 2000
Well we finally have our little girl home again. She is doing great. She was sent home on a couple of medications because she still has the VSD (hole in her heart) and the medications will help that until she has it corrected when she is 18-36 months old. She is going back to her cardiologist next Tuesday for a follow-up.
November 2000
I can't believe how much time has passed since the surgery it seems like it was just yesterday. Things are slowly getting better. I have had alot of people helping me since I have bought Kaylee home. My Aunt Marilyn came to stay for the weekend and Kaylee's Great-Grandmother came and stayed for 10 days and of course I have had lots of help from Kaylee's Nana & Pop-Pop and my sisters. It was really a great help to have them here. I appreciate it so much and want to say "Thank You". I guess you never realize how important it is to have family when something like this happens. I guess I have alot to be thankful for this Thanksgiving!
Kaylee had an appointment with her cardiologist a week after coming home from the hospital and everything was good (he gave her an E.K.G.). Kaylee has to go back on December 19th for another visit with her cardiologist to have an echocardiogram done.
Kaylee also went back to her regular pediatrician. Her weight increased to 7lbs. 8oz. so things are going in the right direction. I have another visit with her pediatrician on December 12. Her pediatrician is hoping she will be eating better and will be at least 8lbs ??oz by then.
December 2000/January 2001
Kaylee had a doctors appointment on December 12 and weighed in at 9lbs 5oz. Then on December 19th she had another appointment with her cardiologist which was even better then what we thought. Kaylee's hole in her heart went from 6mm to 4mm. It is actually shrinking in size. We are hoping that the hole continues to shrink so that she may never need the open heart surgery. I guess we will leave that one in God's hands.
On January 22, Kaylee developed a cold and spiked a temp of 103. We became very worried and called Kaylee's pediatrician who told us that it would be a good idea to take her over to St. Francis Hospital just to be checked out. We arrived at St. Francis and they took Kaylee right away. The doctors ran some blood work and did a chest x-ray. When the results came back we were told that here white count was elevated slightly and her chest x-ray showed a hazy area in her right lung. Which at the time they were thinking it was pneumonia so they decided to admit Kaylee just to watch her and recheck here x-ray in the morning when her cardiologist and the head x-ray tech came in. As it turns out we were told that Kaylee did not have pneumonia that she went into a little bit of Congestive Heart Failure. The hazy area in her lung was fluid that was building up. The doctors decided to increase her digoxin and her lasix and watch her one more day to make sure that she did well with the change in medication. Everything went well and Kaylee was released from the hospital on January 24.
August 31, 2003
Kaylee Celebrated her 3rd Birthday today!! She has truly made it a long way since her surgery. She has been the picture of health with maybe an occasional cold but no problems with her heart since January 2001 when they had to adjust her medication a bit. Kaylee was at her cardiologist just a few months ago and we were told that it was time for her to have her pulmonary band removed. So Wednesday, Sept 17th we are going to Schneider's Children's Hospital to have pre-testing done and then that will be followed by a Cardiac Cath. on Sept 22nd to get good pictures of her heart so that the doctors know what they are dealing with when the actually do the surgery. As it is right now, I would imagine her surgery to remove her pulmonary band will follow shortly after which is why I choose to start Kaylee's webpage back up to keep you updated as to her progress if I am unable to call anyone. So please check back. Thanks!!! Hugs. ~Dawn
Here are some Guestbook Comments during this time....
| Friday 11/21/2003 10:16:59pm | |
| Name: | Melissa and Hailey |
| E-Mail: | rumorsbasenjis@aol.com |
| Homepage Title: | Hailey's Page |
| Homepage URL: | http://members.aol.com/rumorsbasenjis/Hailey.html |
| Referred By: | Search Engine |
| Location: | Jones Michigan AKA the tundra |
| Comments: | My little Hailey had the same defect (COA) It was encouraging to see that your little angel has grown into a beautiful little girl! Good luck in the future, I would love to hear from you! |
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| Colleen and Kaylee before her surgery |
| Sunday 10/29/2000 10:20:16pm | |
| Name: | Colleen, Joe, Sean and Caitlin |
| Comments: | Dear Kaylee,
As I told your mother, I was a little hesitant to write a message. Let me begin by saying that I always belived in your strength. The day I came to see you in the hospital, I sat there with you in my arms with the heart monitor hanging on my shoulder and I looked into your eyes and you smiled up at me only reaffirmed what I already knew. That you were a fighter. I won't lie and say that I wasn't scared, but somehow, deep inside, I knew that you would be fine. I told this to your mother every night when she phoned me to keep me up to date on your condition as well as hers. Your mother is a remarkable woman. As you get into your teens years, you won't see that, but as you get older you will see the strength and love that she and your father have had through this whole ordeal. You are a very special little girl, with a very long life infront of you. Trust me, your mother will be calling me when your 16 telling me how afraid she was of loosing you when you were little and how she wants to strangle you now because of some typical teenage thing. I will tell you one thing, you came into the right family. We may not have riches or fame, but we all have something that is sadly very rare these days. Afamily that will love you beyond reason. I often joke around with people how crazy our family is and how your mother and I could write the TV version of the "Poor Man's Dynasty" with all the troubles and everyday situations that we have as a family, but the one thing that I also do point out to them is the undying love that we all have for each other. Don't you ever forget that. I will promise that we will make you crazy, you will even hate us for butting into your life at times, but that is because we love you so much. I will leave you with this, you have many earthly and heavenly angels watching over
you and never forget that. We will always be there to help you through the good and bad times.
I hope you have many, many good times. We love you very much.
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| Thursday 10/26/2000 6:51:54pm | |
| Name: | Judi Bacchioni |
| Comments: | Dear Kaylee: God is with you and remains with you. He has showered you with love. I want you to know that I've sent out prayer request for you to the four corners of the world. To Colombia South America, to Indonesia, to Italy, to Taiwan, to Cameroon, Chad, and Sierra Leone in AFRICA, and to Mexico, as well as many friends across the United States. And I have received responses from many of them. They are praying for you, for Mom & Dad & for your brother and sister. Many have celebrated a Mass for you. See, Kaylee, see how special you are. People who don't even know you are praying for you. They have all promised to continue to pray, and I will too. All you have to do is to get better! And you can and will, just put yourself in his hands. In Pauls letter to the Phillipians he says "In all things put your trust in God who strengthens you". God Bless you Kaylee. Love, Aunt Judi |
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