MAX'S "DUE DATE"

Friday the 19th was Max's official due date...wild to think he was just supposed to be arriving now. Monday is his two month birthday. He certainly has many challenges ahead, but it's wonderful to think of all the progress he has made. He is absolutely amazing.

In the past few weeks he is acting more and more like a "term" baby...more alert time, which I love and cherish. Here is a snapshot of Max enjoying his new mobile.

He had another hearing screen this week. One ear they have detected mild hearing loss and the other ear's canal is too small to test at this time. They will retest in a month when he is bigger. While it is disappointing that he has any hearing loss, I am relieved to know it is not a profound loss which is quite common with CHARGE. Hopefully he has hearing in his right ear, but we will just have to wait and see.

Max and his cousin, Thomas (I like to call him "Jabba" - he is huge...and adorable!), finally met this week...fun to think of them growing up together. Eliz and I enjoyed putting them together on Max's bed for a brief moment!

FIRST DAY OUT OF ICU

Last night was such a crazy night. I maybe got an hour of sleep...monitors beeping, alarms sounding, babies crying...yikes. I was jumping out of bed every ten minutes checking on Max and trying to do his care. However, as wild as it was...it was wonderful to be in the same room together!

Today was just as exhausting though! I am trying to do a lot of Max's care on my own and between that, pumping and meeting with Max's medical specialists, there is really no time to even sit down. We have two wonderful friends coming in town this week so I will head home to Bellingham for a day...and that will be a nice "day off" to relax and regroup. It will be much needed!

Today a pulmonary doctor has joined Max's medical team...I don't think there are any specialties yet not involved with Max!!! As they said in rounds this morning, Max is quite "complicated." I added..."and very cute!" :) They are thinking that he has more prevalent lung disease (preemie issue) than expected and that is contributing to his labored breathing and need for oxygen support. I am meeting again with the doctor in a few minutes and they'll let me know the course of action.

They took him off of one of his new heart meds that was causing him issues with his blood pressure and heart rate, so the cardiologist is also coming up with a new plan for his heart.

And regarding his hearing, he is having a more intense screening tomorrow afternoon...so we should know more about that situation soon.

Lastly, I met again with his craniofacial doctor today...he will be following Max in upcoming years as we go to clinics, etc. He is a wonderful man who is so great about answering all of my questions and understanding my many, many concerns. He has had experience with many other CHARGE children and I think he will prove to be an invaluable resource.

I know there was more that happened today but my brain is about fried. Keeping my fingers crossed about my upcoming meeting and also for tonight's sleep!

GRADUATION DAY!!!

Max officially graduated from the Intensive Care Unit today...so exciting! He had quite a send off with several nurses tearing up as they said goodbye to sweet Maxwell.

The transition went well, but there was/is some confusion because everything is handled so differently on this new floor. We did have one "scare" (low blood pressure due to a new heart medication) which threatened his return to the ICU but it resolved within the hour thankfully.

Max watched TV for the first time tonight...ok, he slept in my arms and I watched! Oprah of course...I want to break him in early to good television :) (Meredith, I need to put his Oprah onesie on for next time!) However, right in the middle of a good show, Max decided to have a major desat (low oxygen level) and disturbs everything...crazy Max!

Now I am heading to bed and preparing for a restless night as I anticipate jumping up every time a monitor goes off...we'll see how it goes! But I am soooo excited about sleeping in the same room and tonight I had my first meal with him. Ok again, he slept and I ate...but we were in the same room! :) Progress is good!

Good night!

MEDICAL UPDATE

Monday was a very big day for Maxwell with many appointments...

First, the cardiologist evaluated him and while they are happy with his weight gain, the heart failure is taking its toll on other areas of the body. So they added yet another medicine and keeping a close eye on his blood pressure, heart rate, etc. But they are definitely very pleased that he has been able to gain weight. The dietician and doctors have really been working on this and have him on a VERY high calorie diet and so far Max is tolerating it well (with a few "toots" here and there!).

Second, the nose continues to be a struggle and I am meeting again with the ENT team tomorrow to decide what to do next. I have talked with another parent of a CHARGE child (a beautiful three year old girl - hi Renae and Cassidy if you are reading this!) who also has choanal atresia...and I am learning it can be an intense battle to keep the nose open and quite challenging to manage at home. Quite frustrating and scary as you can imagine. Perhaps one day Cassidy and Maxwell will be hanging out as teenagers and stick straws up their noses to be funny and remember the good ol' days of nose stents, suctioning, surgeries...

Last but not least, the hearing test did not go as well as planned. I can't even admit to myself yet about the possibility of him not being able to hear...perhaps I'm somewhat still in denial or perhaps it is mother's intuition. There will be followup tests that will give us a better understanding of exactly what is going on. I told the resident tonight that Max and I won't leave the ICU (a "sit in" if you will!) until we have a thorough plan on studying the ear situation.

Another day on this crazy roller coaster ride...very emotional and fairly disappointing. And yet today it is officially decided he can leave the ICU. Up, down, up, down, up, down...roller coaster ride indeed.

MOVING DAY!

Max is moving tomorrow (Wednesday) to the craniofacial floor...we are finally leaving the Intensive Care Unit! We are making progress! While there are of course some serious health concerns right now, the cardiologist and ENT doctor (the two biggest areas of concern) both feel comfortable with this move....and for the most part, so do I. If things should deteriorate even slightly, he will be moved back to the ICU. They have reserved a very special spot by the nurses' station for Max...they want to keep an eye on this wonderful little guy! I am already being trained in his care, and this will allow even more intensive training so we can prepare for going home...someday. What is great about going to "the floor" is that I can actually stay with him in the room 24/7...sleep, eat, everything! To celebrate his move, I bought him a swing tonight and he really likes it! It will make our new room feel more like home.

Many of you have asked about his weight gain...he is doing really well putting on the pounds (or ounces in his case). Max is now weighing in at 5 pounds, 8 ounces! Finally getting some meat on the bones! They want him to gain an ounce a day...and he is doing just that!

Thank you everyone for your thoughts and prayers...greatly appreciated! Sorry if I don't respond to every phone call or email, but I do love hearing from you...sometimes it might just take me a while to get back to you! :)

HEART UPDATE / HEARING TEST

Max's VSD (hole in the heart) appears to be causing his liver some problems, so the cardiologist is reviewing the situation again tomorrow and possibly changing our course of action. However, they are encouraged that he has been able to gain weight despite his heart condition.

Tomorrow Max also has a hearing test. Last time his ear canals were too small so they were not able to complete the exam, but the initial news regarding his inner ear was promising. As you can imagine, I am quite anxious about this test and the results. Hearing loss (of different degrees) is prominent in nearly 90% of the children with CHARGE.

The ENT (ear, nose and throat) team is also checking in with Max tomorrow. They are trying to decide how long his nose stents should stay in place and how the nose situation will be handled once he goes home. There is always the danger of the nasal passages closing again and I want a clear course of action if that does happen and how I would know with enough advance warning. They are already training me on the suctioning and care of the nose....scary at first, but I am getting the hang of it!

So exciting to think of my beautiful baby coming home!!! The doctors are again discussing (of course this all depends on what the cardiologist and ENT doc think tomorrow of Max's progress) about him being transferred sometime next week to the "floor."

Please keep Max in your prayers tomorrow...he has a very busy and important day with a lot on the line. I am hopeful we receive great news about his hearing and that the doctors come up with an effective plan to temporarily deal with his heart failure.

LOOK MOM, NO WIRES!!!

Yep that's right, today Maxwell...for the first time ever...was off of his monitors! Ok it was only for our about 3 or 4 minutes, but it was major for us! It was incredible! We actually went outside on the balcony of the ICU and Max had an opportunity to breathe fresh air...again for the FIRST time ever! Then we did a quick tour of the ICU and all the nurses oohed and aahed over sweet lil' Max! Everyone is noticing how much bigger and stronger he is looking! He is now 5 pounds, 4 ounces! Of course he still needed oxygen so Anne (our favorite respiratory therapist) followed along with us and I held the mask up to Max's face...and he did great. He actually was asleep in my arms the entire time, but I'm sure he was loving the adventure!

MAX LOSES A FRIEND

Today was a very sad in the ICU at Children's Hospital. Trevor, a three week old beautiful baby, passed away after complications from a hernia in his diaphragm. He had two surgeries last week and things were looking better. His parents were finally going to be able to hold their little boy for the first time.

My mom and I talked daily with Trevor's parents, a wonderful and kind couple from Canada, and we enjoyed the mutual support we could give one another. Trevor was their first baby and their pride and joy.

Trevor is back with his creator...healthy and peaceful at last, but he will be sadly missed here.

I can't even imagine what Trevor's parents are feeling tonight...there are several times when I have stepped away from Max's room that my phone has rang or pager beeped and I fear the worst. It is the most terrifying feeling. I am so incredibly in love with Maxwell and feel confident about his future, however I also understand life is very fragile. What keeps me going is knowing that Max is getting the finest health care and his life is truly in God's hands. All I can do is give him as much love as possible and be the best 24/7 advocate for his health care, education, and future.

Good night everyone...and please remember to enjoy and cherish your blessings, family and friends. Love, Amy and Maxwell