Monday, December 14, 2009
Sunday, December 13, 2009
One Month Milestone
Whenever the phone rings and we see the ICU phone number we panic...this morning on our way to the hospital the nurse called to say that she was concerned about Kaitlyn and her philosophy is that if she concerned then she thinks that the parents should know. Kaitlyn was having a hard time breathing this morning so they gave her some medicine for the swelling in her upper airway and some morphine to settle her. She has been sleeping since. I was going to go to church today but I decided to wait by her bedside in case there was more drama today. I really want to hold her but it's more important for her to get some sleep.
The doctors and nurses here are very thorough and I like that they aren't in rush to boot us out. We have been her for a whole month already. I remember at 2 weeks thinking that we had overstayed our welcome but the doctor reassured me that they will take care of Kaitlyn no matter how long that takes. Now I know and trust that they are providing her with the best care. Our nurse thinks that they will hold on to Kailtyn in the TCU for a little bit longer. They want her to gain weight. She is currently 2.3kgs and the Children's ward does not take babies under 2.5kgs. Because Kaitlyn's health is compromised, she has to use more energy to sustain herself so gaining weight will take more effort for her than other babies. They have doubled the amount of formula supplementing her feeds.
The nurse is also concerned about her belly that looks like it's getting bigger. Because baby's use their diaphragm to breath, her swollen belly is placing more pressure on her upper respiratory system. Last night they were able to wean her high oxgen flow from 7 to 5...but this morning they put it back up to 7. Fortunately the nurse had warned us that this is a process where often it's one step forward,two steps back.
In spite of all these obstacles Kaitlyn is a fighter.
HAPPY ONE MONTH KAITLYN!
Today we went to visit Ed and Mel and their new baby girl, Evangeline. I got to hold their precious little baby and Lauryn asked me why I was holding this baby and couldn't hold Kaitlyn. She's so smart. On the way to the hospital today we drove past a mosque with spires and domes...and Lauryn said that it was just like in Jasmine...meaning Aladdin.
The doctors and nurses here are very thorough and I like that they aren't in rush to boot us out. We have been her for a whole month already. I remember at 2 weeks thinking that we had overstayed our welcome but the doctor reassured me that they will take care of Kaitlyn no matter how long that takes. Now I know and trust that they are providing her with the best care. Our nurse thinks that they will hold on to Kailtyn in the TCU for a little bit longer. They want her to gain weight. She is currently 2.3kgs and the Children's ward does not take babies under 2.5kgs. Because Kaitlyn's health is compromised, she has to use more energy to sustain herself so gaining weight will take more effort for her than other babies. They have doubled the amount of formula supplementing her feeds.
The nurse is also concerned about her belly that looks like it's getting bigger. Because baby's use their diaphragm to breath, her swollen belly is placing more pressure on her upper respiratory system. Last night they were able to wean her high oxgen flow from 7 to 5...but this morning they put it back up to 7. Fortunately the nurse had warned us that this is a process where often it's one step forward,two steps back.
In spite of all these obstacles Kaitlyn is a fighter.
HAPPY ONE MONTH KAITLYN!
Today we went to visit Ed and Mel and their new baby girl, Evangeline. I got to hold their precious little baby and Lauryn asked me why I was holding this baby and couldn't hold Kaitlyn. She's so smart. On the way to the hospital today we drove past a mosque with spires and domes...and Lauryn said that it was just like in Jasmine...meaning Aladdin.
Saturday, December 12, 2009
Addict
We noticed that Kaitlyn's eyes were red rimmed, that she was sneezing and yawning a lot. Since moving to the Transitional Care Unit we are meeting new nurses who do not know Kiatlyn yet so we mentioned it a few times to the nurses. When we called to check in on Kaitlyn last night the nurse told Paul that they think she is having withdrawal from the morphine. They are now giving her 0.01 mcg whenever she appears agitated. I noticed today that she has not yawned or sneezed once while we have been with her!
Now that Kaitlyn does not have the tube in her throat we are at liberty to pull her out of her crib whenever we want without assistance from the nurses. We are also more involved with her care which means we change her diapers which are courtesy of Children's Hospital while we are here!
Today we have Lauryn her with us. Since we are in the TCU they more lenient and Lauryn is allowed in with us. In the TCU there is a small playroom and there are less patients on this side. It's nice to be together like this.
I try to hold Kaitlyn as much as possible to make up for lost time. Most of the time she is just asleep in our arms. They have those swinging rocker chairs so we end up falling asleep with her.
Kaitlyn loves her soother. She may turn out to be a thumb sucker like her big sister. I know that I was tied to my soother till I was too old for it. It must run in my blood!
For those who are shy bloggers, I encourage you to write a comment, one day Kaitlyn will read her story and will read and see for herself how much she is loved and supported!
Now that Kaitlyn does not have the tube in her throat we are at liberty to pull her out of her crib whenever we want without assistance from the nurses. We are also more involved with her care which means we change her diapers which are courtesy of Children's Hospital while we are here!
Today we have Lauryn her with us. Since we are in the TCU they more lenient and Lauryn is allowed in with us. In the TCU there is a small playroom and there are less patients on this side. It's nice to be together like this.
I try to hold Kaitlyn as much as possible to make up for lost time. Most of the time she is just asleep in our arms. They have those swinging rocker chairs so we end up falling asleep with her.
Kaitlyn loves her soother. She may turn out to be a thumb sucker like her big sister. I know that I was tied to my soother till I was too old for it. It must run in my blood!
For those who are shy bloggers, I encourage you to write a comment, one day Kaitlyn will read her story and will read and see for herself how much she is loved and supported!
Friday, December 11, 2009
THREE POINT TURN
sorry , I typed up a blog THREE times the day before yesterday because I kept losing our internet connection...I think this is also in line with my title...
Wednesday was a huge turning point...I think doctors were surprised to see her turn that corner. It's now Friday and she is in a transitional ward which is still a part of ICU but now that she require less intensive care they still want to keep an eye on her before giving her the all clear to enter the Cardiac Children's ward.
The first miracle is that she is now off the ventilator. This machine was doing all her breathing for her. I hated that tube. It was absolutely necessary for her to live but it was also the cause of all her throat difficulties. The second miracle is that when Dr Kozak removed the tube and looked down her throat he was, "delighted" with what he saw. He did not have to do any surgical procedure to remove any scar or swollen tissue.
Our third miracle is that we heard good news from the GI (Gastro-Intestinal) team. They said that her liver is shrinking. Because her liver is enlarged it was sitting lower in her abdomen than normal. They measure it by seeing how many fingers below the ribline the liver is sitting at. From birth it was about 6 fingers below the ribline. On Wednesday GI reported that it was now 4 fingers below the ribline. We are so happy to hear this because her enlarged liver and spleen made her abdomen look really swollen. It also means that the damage to her liver wasn't so great that it was irreversible. Praise God!
Now that the tube is out, Kaitlyn has a high flow oxygen prong in her nose which helps to keep her lungs from completely collapsing. This is because she doesn't quite have the energy reserve to breath completely unassisted. They will gradually wean the oxygen flow as she gets stronger. She can not go to the ward with the high flow prong as this is ICU equipment. She also needs to gain weight. They are now supplementing her feeds with a bit of high calorie formula. The doctors anticipate that she will graduate to the ward early next week!
Thank you to all for your prayers!
Wednesday was a huge turning point...I think doctors were surprised to see her turn that corner. It's now Friday and she is in a transitional ward which is still a part of ICU but now that she require less intensive care they still want to keep an eye on her before giving her the all clear to enter the Cardiac Children's ward.
The first miracle is that she is now off the ventilator. This machine was doing all her breathing for her. I hated that tube. It was absolutely necessary for her to live but it was also the cause of all her throat difficulties. The second miracle is that when Dr Kozak removed the tube and looked down her throat he was, "delighted" with what he saw. He did not have to do any surgical procedure to remove any scar or swollen tissue.
Our third miracle is that we heard good news from the GI (Gastro-Intestinal) team. They said that her liver is shrinking. Because her liver is enlarged it was sitting lower in her abdomen than normal. They measure it by seeing how many fingers below the ribline the liver is sitting at. From birth it was about 6 fingers below the ribline. On Wednesday GI reported that it was now 4 fingers below the ribline. We are so happy to hear this because her enlarged liver and spleen made her abdomen look really swollen. It also means that the damage to her liver wasn't so great that it was irreversible. Praise God!
Now that the tube is out, Kaitlyn has a high flow oxygen prong in her nose which helps to keep her lungs from completely collapsing. This is because she doesn't quite have the energy reserve to breath completely unassisted. They will gradually wean the oxygen flow as she gets stronger. She can not go to the ward with the high flow prong as this is ICU equipment. She also needs to gain weight. They are now supplementing her feeds with a bit of high calorie formula. The doctors anticipate that she will graduate to the ward early next week!
Thank you to all for your prayers!
Thursday, December 10, 2009
Global TV & Kaitlyn
* photos updated *
* blog was updated but internet connection was lost *
A small film crew from Global TV came by to film for the annual Children's Hospital Miracle Weekend. I got to pose with Kaitlyn. She did most of the work, I just held her soother in. I realized, while the guy was filming, that I had some hangnails. My cuticles are gross too. (This is the result of all the handwashing we have to do here at the hospital). I was excited to be a part of this b/c as parents, you dont realize how much you need something until it's necessary. The children's Hospital staff are amazing, the docs are amazing, the facilities are amazing, the supplies are amazing ... without all this, we'd be in dire straits when it comes to caring for Kaitlyn.
As mentioned above, Clara had typed up something for the blog but it was lost. we'll be updating/typing again soon.
Wednesday, December 9, 2009
The Waiting Room
Kailtyn went into OR this morning at 8.30am to have her breathing tube removed and the swelling in her trachea examined.
...we're waiting to see Kaitlyn. We bumped into Linda (our favourite nurse) at Starbucks. She said that she saw Kaitlyn in the ICU without her tube. That means that things must have gone well in the OR this morning! Praise God! I'm so excited to see her without that dratted tube. The doctors are doing their rounds so we are just waiting in the waiting room. In this day and age you don't have the pace the room, you can just blog! On our way in this morning I had a moment of anxiety...I can see how being anxious can make you feel like you're doing something when you really are helpless. But a split second later I felt my spirit tell me to rest...it's much easier resting than worrying!
Yesterday we got to hold Kaitlyn. The nurse also modified a pacifier. She is so cute! Apparently you suck in a lot of air as well so she spat up. It freaked me out because I didn't know she could do that with the tube in her throat. It looks like she might be a spit uppera...gosh when Lauryn was a new born I remember wondering what I'm supposed to do with all the burp cloths I had because I had so many of them and didn't even need to use them, not once! Looks like I'll have to dig them up for Kailtyn!
Lauryn had fun on her birthday yesterday...she licked off all the pink icing from her cupcake like a little kitten! She got a stamp set as gift and God please help me...there are 40 rubber stamps...and last night she wanted to sample every one of them!
We're going to head in to see our little one!
...we're waiting to see Kaitlyn. We bumped into Linda (our favourite nurse) at Starbucks. She said that she saw Kaitlyn in the ICU without her tube. That means that things must have gone well in the OR this morning! Praise God! I'm so excited to see her without that dratted tube. The doctors are doing their rounds so we are just waiting in the waiting room. In this day and age you don't have the pace the room, you can just blog! On our way in this morning I had a moment of anxiety...I can see how being anxious can make you feel like you're doing something when you really are helpless. But a split second later I felt my spirit tell me to rest...it's much easier resting than worrying!
Yesterday we got to hold Kaitlyn. The nurse also modified a pacifier. She is so cute! Apparently you suck in a lot of air as well so she spat up. It freaked me out because I didn't know she could do that with the tube in her throat. It looks like she might be a spit uppera...gosh when Lauryn was a new born I remember wondering what I'm supposed to do with all the burp cloths I had because I had so many of them and didn't even need to use them, not once! Looks like I'll have to dig them up for Kailtyn!
Lauryn had fun on her birthday yesterday...she licked off all the pink icing from her cupcake like a little kitten! She got a stamp set as gift and God please help me...there are 40 rubber stamps...and last night she wanted to sample every one of them!
We're going to head in to see our little one!
Tuesday, December 8, 2009
GOOD NEWS
I told you once before that I like the hematology doctors...they are always smiling but the best part is they always have good news and are always optimistic. This morning one of the hematologists that was at the round table meeting yesterday came by. She said that they are not going to go ahead with chemotherapy. Although her bilirubin levels are high they said they have seen children with higher levels and they were ok. The conjugated bilirubin is not as harmful at high levels as the unconjugated...the latter can cause brain damage. We learn something new everyday. The hematologists convinced the GI team that Kaitlyn will be ok, that her liver is working fine and that the side effects of chemo outway any benefit at this point. This is such good news because since the doctor mentioned it we have not been given an definitive plan, leaving us hanging in a limbo. Thank you for everyones prayers. We know that our family is covered by an amazing family and community.
Kaitlyn is stable. The nurse put some jammies on her and is modifying a soother. Kaitlyn is off morphine and seems relatively comfortable. This also means she is more alert so we get to see her beautiful eyes.
The plan is to take the breathing tube out first thing tomorrow morning. She has been on steroids to reduce swelling and give her the best possible fighting chance. I really believe it's going to come down to God coming through for her. Please keep her in your prayers today because it will happen first thing tomorrow morning at about 7am or 7.30am.
Gotta keep this short as it's Lauryn birthday today and we want to leave the hospital early to spend time with her on her special day.
Some people have not been able to wait for this chapter and have been calling...thank you for your love and concern...to everyone, your calls are not a bother...we appreciate everyone's support!
Kaitlyn is stable. The nurse put some jammies on her and is modifying a soother. Kaitlyn is off morphine and seems relatively comfortable. This also means she is more alert so we get to see her beautiful eyes.
The plan is to take the breathing tube out first thing tomorrow morning. She has been on steroids to reduce swelling and give her the best possible fighting chance. I really believe it's going to come down to God coming through for her. Please keep her in your prayers today because it will happen first thing tomorrow morning at about 7am or 7.30am.
Gotta keep this short as it's Lauryn birthday today and we want to leave the hospital early to spend time with her on her special day.
Some people have not been able to wait for this chapter and have been calling...thank you for your love and concern...to everyone, your calls are not a bother...we appreciate everyone's support!
Subscribe to:
Posts (Atom)