Another uneventful day in the life of Maxwell...that's wonderful! He had a very peaceful day and enjoyed lots of good cuddling time with Mommy, as well as his Uncle David and Aunt Meredith. Max also got a big boy bath and is looking pretty darn cute!
There actually was talk today in morning rounds that if Max continues to have stable days, he might be transferred to the lower level unit next week sometime. (This was also discussed three weeks ago and then he went downhill quickly and had to have surgery, so I am trying to not get overly excited until it actually happens.) In the lower level unit, he still is very closely monitored but not as intensely as in the IICU. Parents play more of a role and are prepared for taking care of the babies when they come home. The other fun part is that I will get to sleep in the room with Maxwell!
We have been in the hospital for over 6 weeks (and another 3 weeks on bed rest)...I am getting very excited to bring my little guy home! Most likely it will be atleast another month before he actually heads to Bellingham, but still...progress is progress!
Friday, August 05, 2005
Thursday, August 04, 2005
EYE EXAM
Yesterday afternoon Max endured yet another extensive eye exam. Coloboma is a common eye problem with CHARGE (80% - 90% probability) and causes severe loss of vision. MAX DOES NOT HAVE COLOBOMA! WOW! 
This was amazing news. A few weeks ago we were initially told that he most likely did not have this issue, but I wanted to be reassured on this and other eye matters. He also does not have glaucoma (which they thought was a possibility last week) or detachment of the retina (problem with preemies).
So while Max did not enjoy his exam (he was on morphine so he actually handled it pretty well!), I definitely enjoyed the good news!
This evening Max will be visited by his Uncle David and Aunt Meredith. So excited to introduce my beautiful baby to more family!
This was amazing news. A few weeks ago we were initially told that he most likely did not have this issue, but I wanted to be reassured on this and other eye matters. He also does not have glaucoma (which they thought was a possibility last week) or detachment of the retina (problem with preemies).So while Max did not enjoy his exam (he was on morphine so he actually handled it pretty well!), I definitely enjoyed the good news!
This evening Max will be visited by his Uncle David and Aunt Meredith. So excited to introduce my beautiful baby to more family!
Wednesday, August 03, 2005
HAPPY TIME
Max and I enjoyed a wonderful morning together! After being a bit cranky (ok, more than just a bit!), Pru (one of Max's FAVORITE nurses) and I decided he needed his nose stints suctioned...and sure enough after that, he was wide awake and looking absolutely gorgeous! We read books and sang songs and just loved on each other big time! Here is one of my favorite photos...isn't he so yummy cute!?! 
Couldn't you just eat him up! ENJOY!Speaking of Pru, this is a photo of Max being held by her as she prepares him for care. Can't you just see the love in his eyes? He really likes her a lot!
UNDERSTANDING "CHARGE" SYNDROME
I have had many people ask..."exactly what is CHARGE and is this really bad?" I know it is scary, especially when you read information on the internet and you aren't sure what is/isn't factual and how this relates to Maxwell. CHARGE is indeed a rare and serious genetic disorder. However, the good news is that there is a very WIDE spectrum within the syndrome...and that gives us great hope!
It can affect the eyes, ears, nose, heart, brain, kidneys among other issues. However, every "CHARGE" case is completely different. For example, there is another "CHARGE" kid in the ICU right now (strange considering how rare the disorder is) and he and Max are very different from each other. And I met a wonderful mom of an adorable three year old girl with CHARGE who had a very complicated open heart surgery last week. She is doing great!
So far we have been fortunate to have good news in several key areas, including Max's eyes, ears, kidneys, and brain. They are not definite (since he still is so little and young) but initial tests prove the structures appear normal, which is incredible! Vision and hearing loss typically affects 80 - 90% of people with CHARGE, so we are keeping our fingers crossed that the initial tests prove accurate in weeks and months to come! Having at least partial (and hopefully complete) hearing and vision would be amazing and so pivotal in securing strong development for Maxwell.
We certainly have many health struggles ahead, but I am incredibly blessed that Maxwell is proving to be such a fighter and he is beating the odds and amazing me more and more each day!!!
If you have any specific questions about CHARGE or Max's particular issues, please feel free to ask...I will not be bothered or offended. I want you to feel knowledgeable and understanding of what Max is going through.
It can affect the eyes, ears, nose, heart, brain, kidneys among other issues. However, every "CHARGE" case is completely different. For example, there is another "CHARGE" kid in the ICU right now (strange considering how rare the disorder is) and he and Max are very different from each other. And I met a wonderful mom of an adorable three year old girl with CHARGE who had a very complicated open heart surgery last week. She is doing great!
So far we have been fortunate to have good news in several key areas, including Max's eyes, ears, kidneys, and brain. They are not definite (since he still is so little and young) but initial tests prove the structures appear normal, which is incredible! Vision and hearing loss typically affects 80 - 90% of people with CHARGE, so we are keeping our fingers crossed that the initial tests prove accurate in weeks and months to come! Having at least partial (and hopefully complete) hearing and vision would be amazing and so pivotal in securing strong development for Maxwell.
We certainly have many health struggles ahead, but I am incredibly blessed that Maxwell is proving to be such a fighter and he is beating the odds and amazing me more and more each day!!!
If you have any specific questions about CHARGE or Max's particular issues, please feel free to ask...I will not be bothered or offended. I want you to feel knowledgeable and understanding of what Max is going through.
Tuesday, August 02, 2005
SURGERY UPDATE
I haven't talked with many of you since Max's surgery last week. I was a nervous wreck, but fortunately, everything went smoothly. The medical team here is amazing! Can you imagine operating on such a tiny, tiny nose? The ENT doctor actually said it was one of the smallest noses he ever worked on!
The breathing tube had to be put back in for the surgery (that's never fun) but Max was successfully extabated on Monday. Hooray! The stints will stay in his nasal passages for several months and hopefully they won't close again. He will need at least one additional surgery to solve that problem.
So Max is busy recovering from surgery and also working REALLY hard at breathing. With his heart defect, his lungs have to work overtime...which really wears out Max! The doctors and nurses are also concerned about his weight. (But he has finally put some weight on - up 7 ounces since birth! So he now weighs a whopping 4 pounds, 9 ounces!) They are trying several different options to put some "meat on his bones." Unfortunately the more he works at breathing, the more calories he burns. And that won't stop until he has surgery, which can't happen until he puts weight on. Quite a dilemma!
We have a million photos of Max...but this is one of my favorites because I think his big purple goggles (for the jaundice lamp) and oversized, girly hat are quite a winning combo!!! This was right before he got wheeled away for his first MRI. In the midst of a very serious and sad moment, seeing him in that funny hat made me smile! :)
The breathing tube had to be put back in for the surgery (that's never fun) but Max was successfully extabated on Monday. Hooray! The stints will stay in his nasal passages for several months and hopefully they won't close again. He will need at least one additional surgery to solve that problem. So Max is busy recovering from surgery and also working REALLY hard at breathing. With his heart defect, his lungs have to work overtime...which really wears out Max! The doctors and nurses are also concerned about his weight. (But he has finally put some weight on - up 7 ounces since birth! So he now weighs a whopping 4 pounds, 9 ounces!) They are trying several different options to put some "meat on his bones." Unfortunately the more he works at breathing, the more calories he burns. And that won't stop until he has surgery, which can't happen until he puts weight on. Quite a dilemma!
We have a million photos of Max...but this is one of my favorites because I think his big purple goggles (for the jaundice lamp) and oversized, girly hat are quite a winning combo!!! This was right before he got wheeled away for his first MRI. In the midst of a very serious and sad moment, seeing him in that funny hat made me smile! :)
HELLO FRIENDS AND FAMILY!
First let me thank you so very much for your warm thoughts and prayers for my sweet little Maxwell. He is such an amazing baby...I am head over heels in love! It warms my heart to think of the hundreds (possibly thousands) of people across the country who are praying for Max through their churches, prayer chains, and daily thoughts. I truly believe your prayers, God's loving arms around Max, and Max's strong spirit are making the difference!Many of you have requested more updates on Maxwell (thanks for your concern!), and a friend I met in the hospital suggested I start a blog (as she did for her son who is currently recovering from open heart surgery). So here I am...starting my own blog for all of you! Hope this helps keep you informed about our sweet little Max and the latest in his medical condition.
We love hearing from everyone! Please keep the emails, cards and phone calls coming. I might not respond right away but please know how much your thoughtfulness means to me and my family. Sometimes an extra dose of love, supportive words, or a warm smile is exactly what we need to get through a tough day! Thank you everyone!
NEW CONTACT INFORMATION:
amysmckinley@aol.com
360-927-0099 (cell)
*Currently Max is in the IICU (Infant Intensive Care Unit) at Children's Hospital in Seattle.
www.seattlechildrens.org
Children's Hospital and Regional Medical Center
P.O. Box 5371, Seattle, WA 98105-0371
