It's now Sunday evening...sorry to keep you all waiting to hear how her surgery went. (That's the cliff hanger, just so the title doesn't have anyone anxious that Kaitlyn is in a critical situation again). Kaitlyn went into surgery at 11am. At around 1pm the surgeon, Dr. McDonald came out to tell us that the surgery went well. Given that they have closed one source of blood to the lungs I was expecting her Oxygen saturation numbers to come down from the 90% that it was previously sitting at...however, it is still hovering around 90%. The nurse told me to ask the doctor to discuss this. I pray and hope that her surgery was not in vain and that it was beneficial to her heart and body function.
We went to church today. Friends in Sydney, if you want to hear an awesome message please download Sunday, Dec 6th message from our church website, www.newjoychurch.com...I have yet to listen last Sunday's message which was dedicated to our family. I think both Paul and I were a little nervous about seeing so many people but it was good to see and be with our greater community. I'm not sure how Paul felt today about being at church but I felt God's presence...during worship I felt something tickling the top of my head...as if a breeze was blowing through my hair.
Tomorrow the doctors are going to have a round table discussion with all the specialists involved with Kaitlyn's case. This involves cardiology, oncology, hematology, GI (I met Dr. Guttman today)and the Intesivists (doctors of the Intesive Care Unit)...they are going to discuss the next steps and then discuss their plans with us afterwards. Please pray for continued hope for Kaitlyn's life. Despite the doctors having to prepare us for the worse, we have to stand defiant, strong and continue to believe in our God who defies the natural and normal realm.
Even though Kaitlyn is pretty sedated she is still sucking on her tube...I'm very encouraged to see her be a regular baby. One of the things that keeps me going and believing is a vision of picking her up one day. I will scoop her up under her arms and hold her without being anxious about tubes or her being too fragile...when we sit by her bedside, she's so close yet so far...but this picture makes me feel like it's not that far or impossible.
Sunday, December 6, 2009
Saturday, December 5, 2009
PDA Ligation
...at last, I watched as they wheeled our daughter away to the operating room. An hour behind schedule this morning, that's not too bad. The anethesiologist had quite the sense of humour...he said that they were taking her back in under warranty! :)
We're waiting in the waiting room with Lauryn...we'll keep you posted once Kaitlyn comes out of the OR...
We're waiting in the waiting room with Lauryn...we'll keep you posted once Kaitlyn comes out of the OR...
surgery update con't
ok. so we were told yesterday that the surgery would be at 9pm. then a doc came in and said that it'd be at 6:30 or 7pm. then it went back to 9pm. so we went to eat and then a phone call came saying that the surgery would be bumped to saturday morning at 10am. aiya. we've learned that nothing is exact or on time at the hospital. we'll keep you all posted.
Friday, December 4, 2009
surgery update
just found out that Kaitlyn's going in for surgery btwn 6:30-7pm. we'll keep you posted
for more information on the type of surgery, please read the link below
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
for more information on the type of surgery, please read the link below
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
Dec 4th - In His Loving Arms
We haven't been blogging everyday...some days we just can't squeeze it in...first priorities are our children...then there are everyday things that just need to get done, like grocery shopping, laundry and cleaning, esp. when you have a toddler who loves to create mess!
...so today there are two blogs.
Kaitlyn has developed her sucking reflex. I'm very excited about this because baby's with trisomy can have low muscle tone which can result in difficulty with nursing...but she's sucking on her tube which is in her mouth and down her throat. Kaitlyn may go into surgery for her PDA ligation at 9pm tonight...this means they have kept her stomach empty all day...so this sucking reflex may be a combination of just being hungry and reaching her due date milestone. Although she was scheduled to be delivered via c-section on Nov 17th, she surprised us all and arrived early on Nov 13th. Her real due date, however, was Nov 30th.
The GI (Gastro Intestinal) doctor (one named doctor Gutman!!!) think that her high bilirubin (Soo is that the right spelling?!?) may be caused by her transient anemia...it has another medical name but don't know how to spell it. Transient anemia is similar to luekemia but it is meant to get better on it's own...but the doctors are now talking about giving her some chemo therapy...they will talk to us more about it tomorrow. Please pray pray pray that it's not luekemia. Children with trisomy 21 have more prone to developing luekemia. Because Kaitlyn was born with transient anemia she has a 30% chance of developing luekemia in the first 3 years of her life. However the success rate for treatment is 80-90%. Still it just seems like too much for a baby to have to endure.
I was talking to my sister last night...who has been a great comforter and encourager (along with our awesome New Joy Community)...she was reminding me that Kaitlyn's middle name is Faith. And that standing firm in the midst of this trial is all about faith. Thanks for preaching it to me!
It's highly unlikely that my parents will read this blog, not because they don't care...but they just aren't computer or technology savvy...I haven't called them yet...not because I mean to be a bad daughter but I know I won't be able to talk to them without breaking down completely and I mean completely...the blubbering crying where you just can't talk...I just can't go there right now. My sister has been the middle man, updating my parents...why am I sharing this? As much as I am sharing this blog with everyone...it's also a way for me to journal everything we're going through; the good, the bad, the ugly.
As we pray for Kaitlyn before she goes into surgery. I pray and place her in God's loving arms...and I say to God...if He takes her I understand...and if He gives her back to us, that I will love her with everything we've got...so we entrust her completely into His loving arms knowing that He is trustworthy, good, faithful and most of all, that His love is perfect.
We just signed the consent for the surgery with the cardiac surgeon...she's now slated for 6.30-7pm.
...so today there are two blogs.
Kaitlyn has developed her sucking reflex. I'm very excited about this because baby's with trisomy can have low muscle tone which can result in difficulty with nursing...but she's sucking on her tube which is in her mouth and down her throat. Kaitlyn may go into surgery for her PDA ligation at 9pm tonight...this means they have kept her stomach empty all day...so this sucking reflex may be a combination of just being hungry and reaching her due date milestone. Although she was scheduled to be delivered via c-section on Nov 17th, she surprised us all and arrived early on Nov 13th. Her real due date, however, was Nov 30th.
The GI (Gastro Intestinal) doctor (one named doctor Gutman!!!) think that her high bilirubin (Soo is that the right spelling?!?) may be caused by her transient anemia...it has another medical name but don't know how to spell it. Transient anemia is similar to luekemia but it is meant to get better on it's own...but the doctors are now talking about giving her some chemo therapy...they will talk to us more about it tomorrow. Please pray pray pray that it's not luekemia. Children with trisomy 21 have more prone to developing luekemia. Because Kaitlyn was born with transient anemia she has a 30% chance of developing luekemia in the first 3 years of her life. However the success rate for treatment is 80-90%. Still it just seems like too much for a baby to have to endure.
I was talking to my sister last night...who has been a great comforter and encourager (along with our awesome New Joy Community)...she was reminding me that Kaitlyn's middle name is Faith. And that standing firm in the midst of this trial is all about faith. Thanks for preaching it to me!
It's highly unlikely that my parents will read this blog, not because they don't care...but they just aren't computer or technology savvy...I haven't called them yet...not because I mean to be a bad daughter but I know I won't be able to talk to them without breaking down completely and I mean completely...the blubbering crying where you just can't talk...I just can't go there right now. My sister has been the middle man, updating my parents...why am I sharing this? As much as I am sharing this blog with everyone...it's also a way for me to journal everything we're going through; the good, the bad, the ugly.
As we pray for Kaitlyn before she goes into surgery. I pray and place her in God's loving arms...and I say to God...if He takes her I understand...and if He gives her back to us, that I will love her with everything we've got...so we entrust her completely into His loving arms knowing that He is trustworthy, good, faithful and most of all, that His love is perfect.
We just signed the consent for the surgery with the cardiac surgeon...she's now slated for 6.30-7pm.
Dec 4
We weren't sure if Kaitlyn was going to have her PDA ligation surgery yesterday but in the end the docs decided to postpone till Friday...so we spent the day with Lauryn. We started the day with a trip to the Aquarium and then we stopped by the hospital. They allowed Lauryn into the ICU and the nurses were great...they let Lauryn help them pick out a blankie for Kaitlyn among handling some of the medical stuff...after a short visit we went to Sophia's princess birthday party. Lauryn dressed up as Cinderella, complete with dress and Cinderella shoes. The funniest thing was that Sophia was wearing the same dress and shoes...as Tai put it, "how embarrassing"...but maybe they did plan it that way! 
Kaitlyn's bilirubin level is up causing her to look yellow. The nurses are so considerate. They usually leave the lights out so the lighting doesn't highlight how yellow she is. When the lights are on she looks like the Simpsons who are also very yellow! Bilirubin is the broken down red blood cells that are meant to be secreted from the liver with the bile and out of the body with her stools. This is what gives our stool it's brown colour! (We are A-pluis students her in the ICU, we're learning so much). The doctors are going to do a series of different tests to rule out different causes for her high bilirubin levels. None of her symptoms correspond with the causes they are exploring but one thing I appreciate about the doctors here is that they are very thorough. They do not leave any stone unturned. Once they rule out all the simple causes they will explore some rarer causes that may be linked to genetics. Please pray that her bilirubin levels will drop and that her liver is functioning perfectly.
It's definitely difficult being the mother of two children let alone having one in ICU. We're torn between wanting to spend every moment with Kaitlyn and being a present for Lauryn. Every time we are with Kaitlyn we stroke her hair and talk to let her know we are there.
Yesterday was a short day with Kaitlyn. The nurses are careful to keep Kaitlyn sedated enough that she isn't active as she tends to wave her arms about and turn her head this way and that which is not good for her throat. But we're proud of her feisty nature!
Yesterday was a short day with Kaitlyn. The nurses are careful to keep Kaitlyn sedated enough that she isn't active as she tends to wave her arms about and turn her head this way and that which is not good for her throat. But we're proud of her feisty nature!
Kaitlyn's bilirubin level is up causing her to look yellow. The nurses are so considerate. They usually leave the lights out so the lighting doesn't highlight how yellow she is. When the lights are on she looks like the Simpsons who are also very yellow! Bilirubin is the broken down red blood cells that are meant to be secreted from the liver with the bile and out of the body with her stools. This is what gives our stool it's brown colour! (We are A-pluis students her in the ICU, we're learning so much). The doctors are going to do a series of different tests to rule out different causes for her high bilirubin levels. None of her symptoms correspond with the causes they are exploring but one thing I appreciate about the doctors here is that they are very thorough. They do not leave any stone unturned. Once they rule out all the simple causes they will explore some rarer causes that may be linked to genetics. Please pray that her bilirubin levels will drop and that her liver is functioning perfectly.
Wednesday, December 2, 2009
some medical stuff
After being at the ICU for this long, we've picked up a lot of 'medical lingo' i wanted to share and to remember the things that have happened.
Kaitlyn had a BT-Shunt surgery a few days after she was born (Nov16), hence the scar on her left side. She's recovering from that surgery. We were surprised to see how large the incision was but then realized that the hands of the doctor was large and she's so tiny. For more information, here's a link.
http://en.wikipedia.org/wiki/Blalock-Taussig_shunt
A few days after that her PDA valve reopened. PDA (Patent Ductus Arteriosus) not (Public Display of Affection) is a small valve that is open when the baby is in utero but then usually closes after a few minutes or a few days.
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
Kaitlyn is scheduled for surgery to close this PDA valve this Friday. It's a simple procedure but she'll end up having a scar on the other side. poor baby. The doctors are confident that doing this procedure is easy and that she'll pull through.
Kaitlyn had a BT-Shunt surgery a few days after she was born (Nov16), hence the scar on her left side. She's recovering from that surgery. We were surprised to see how large the incision was but then realized that the hands of the doctor was large and she's so tiny. For more information, here's a link.
http://en.wikipedia.org/wiki/Blalock-Taussig_shunt
A few days after that her PDA valve reopened. PDA (Patent Ductus Arteriosus) not (Public Display of Affection) is a small valve that is open when the baby is in utero but then usually closes after a few minutes or a few days.
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
Kaitlyn is scheduled for surgery to close this PDA valve this Friday. It's a simple procedure but she'll end up having a scar on the other side. poor baby. The doctors are confident that doing this procedure is easy and that she'll pull through.
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