MAX IS TWO MONTHS OLD!

Happy Birthday Maxwell! Thanks to everyone who sent cards, called and visited....your thoughtfulness is greatly appreciated! (David, Max said he REALLY appreciated your card most of all!!! You definitely win the award for most e-greetings ever!) Max had several fun visitors today and we really enjoyed the company! Thanks again everyone!

Several of you noticed I didn't write much last week....sorry, it was a rough few days. But thank you for being so diligent about checking Max's blog. Wonderful to know that so many people care about Max and are interested in his daily updates! :) Actually tonight I wasn't going to write either, but he had a massive "poop explosion" on his new gorgeous white blanket and I needed to take some time to do laundry!

MEDICAL UPDATE
The pulmonary specialist joined Max's "team" last week and the news wasn't so wonderful. They are concerned about his lung disease due to early arrival and about the combination of other factors leading him to labored breathing. We are having a Care Conference on Tuesday afternoon with the many specialists involved to review everything with Maxwell and make sure everyone is on the same page and put together a plan that is agreeable to everyone.

Max is not gaining weight as well as he was and he vomited twice today (Ruthie - one episode was on your adorable duckie blanket!)...so there is a slight concern there. The nutritionist and doctor are discussing that this evening. I get very worried about the vomiting because he has such serious reflux issues. As soon as he is big enough (they want to wait another month or so), he will have surgery for the "belly plug." Basically the food will be put directly into his stomach versus using a feeding tube. The tube is problematic as they get older because they explore their face and pull on the tube...exactly what Max did tonight! I knew it would be anyday, and actually I was kind of proud of him for finally finding it. The tube is also bad for oral aversion and reflux issues. We are not sure if he will ever be able to breast feed (I am pumping and he gets my milk - plus extra calories through added formula powder) and that is incredibly disappointing and frustrating. If he was able to breastfeed in the future, he will still need the belly plug as well to make sure he maintains his very high calorie diet. A lot of his eating outcome will depend on his heart surgery, strength, and tests on his swallow ability, etc. This is an issue that only "time will tell."

We did a test today to determine his level of oxygen needs and the doctors were pleased. The need is slightly lower than originally thought. They used a square plastic tent covering his face, but with him, it pretty much covered his whole body. Max "the boy in the bubble" was not happy with it!

NAP TIME
To make him happy after the oxygen experiment, we tried something new...our first nap together! It was wonderful to just lay beside him and gaze at his gorgeous face and enjoy cuddling. However, I think I got high on all the extra oxygen blowing at our face!

BAPTISM
I have been talking with the chaplains at the hospital...amazingly supportive and helpful. We get together regularly and pray with Maxwell. We are planning his baptism for sometime in the coming weeks and are hoping that we can actually take him to the chapel for a more "official" baptism, or it may be at his bedside. My sister, Elizabeth, and her husband, Jim, are the godparents and will be with us for this special moment. Our original plan was to have a joint baptism (with cousin Thomas) at St. Matthew's Church in Wheeling but Max will not be traveling anytime soon and I didn't want to wait. I'll be sure to take lots of photos!

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.