Monday, August 22, 2005


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!

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!) 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!

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!

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!


rebecca said...

Note quite sure what to say; I pray that his lungs will grow strong very, very soon. What a special treat for the two of you to have a nap together. There is nothing better than sleeping with your little one. Just gazing into their face as they sleep is so therapeutic for our souls.


Ruthie said...

Just wanted to say "Way to Go" Max for his massive poop explosion!! Everyone needs one of those occasionally!! And by the way, I would rather have vomit on the blanket verses the poop explosion. (smile) Besides, he is just breaking it in properly. As far as the lungs go, he's proven he's a fighter and will continue to be.

Grandmaboyle said...


trying to learn how to write to
you. The picture of the two
cousins is just wonderful. I
am coming for Christmas and will
have several days to be there.
Dave ans family are also coming.
I have enjoyed reading every
word about Maxwell and you.
The man who spoke at Dons funeral
gave the talk at church. He had
prayer for Maxwell. Jim told me
about writing to you. This is
about my 4th try.
Sure good to read about you Amy.
You are doing wonderful. Looking
forward to reading all the news.
Much love, Margaret

Drew said...

Hey Amy,
It was really terrific to see you and to meet Maxwell over the weekend. I told Steph that I was tempted to head to Children's on my way back to the airport Monday morning just to say goodbye to you guys. However, I was afraid I might not make my flight if I did.

Anyway, it was a really inspiring experience to be in the room with you and Maxwell and see you in action when his team of Docs came in on Friday. You are a truely amazing Mother and a wonderful advocate for that sweet little guy. He couldn't ask for a better Mom.

Keep it up. He'll come home before you know it, with a Mom like you fighting for him!


Lori said...

Amy I just want you to know that all of the girls at the Pinch curves are praying for you and Maxwell. We miss you, but love getting the updates and pictures. Max is beautiful, and I know both of you are strong and you will make it through this. There's no drill sargent now that you aren't aruond to push us.....but Kim and Judy do the best they can. Please know we are thinking of you, we love you, and we wish you the best.

Dianne said...

Amy, I was reading the latest on you and Maxwell today at the Ripley Curves. I keep you both in my prayers. I don't want to "nose in" on his care but wondered if he has been seen by a speech language pathologist for the eating problems. I'm an SLP and work with WV Birth to Three. I've also worked in the hospital setting. In order to keep him from becoming orally defensive if he gets the feeding tube (and even if he doesn't), the SLP should be able to set you up with some oral facial stimulation techniques for little Max. It could really help and they're simple to do, nothing complicated, and really do work well. You may want to speak to his doctor about this. Max is so blessed to have such a caring mother. Thanks for keeping us all informed. Cares and Prayers, Dianne

Cyndee said...

Both you and Max are on my mind daily - you both are such fighters! Although I can't imagine what you have gone through and what you will face in the future, you have handled all of the challenges with such faith and grace that I have a whole new respect and admiration for you, and you know that I did before, too! I'm not sure I could be doing what you are.

Max will conquer each of his challenges the best he can - just look how far he has come already - just keep on keeping your faith and loving your baby like only a mommy can do. He knows you are there and he depends on you so much! Aren't the naps together great?! Watching them sleep is precious!

Love and hugs,

Michelle Martin said...

Amy, want you to know that you are a wonderful mother. Both you and Max are doing a great job!!! I love to read your updates and look forward to the day you bring Max to Curves to meet everyone. My oldest son, Schayne, has Angelman Syndrome, so I guess I can say that I sort of know what you are going through. You are already off to a great start. If there is EVER ANYTHING that I or my family can do for you guys, please let me know.

All my love and strength to you and MAX!!!

Steph said...

Happy Two Months and Five Days Max! We miss you!

Amy -- it was soooo wonderful to spend time with you and Maxwell. Please give him some more kisses from us!

We're in the Cape at the moment and wanted to get online to check for the latest update...thinking of you guys. Watched the sunset on the beach tonight and thought "wouldn't it be great to watch one of these on the west coast with Amy and Max next time we come visit?" So many things to look forward to...

Love you guys...Steph

Zach and Mel said...

Yay! I finally figured out how to do this... :)
Zach and I really miss you. We continue to keep you and Max in our prayers. Zach asks about you and your dogs all the time. He wants to know when we're going back to the dog park. :) You haven't posted in a while and I just want to make sure you are okay... hope to hear from you soon!
Love ya,
Mel and Zach
p.s. working out just isn't the same w/o you!