Friday, October 28, 2005


Currently Maxwell is still intubated and will remain so for several more days. He is having strange episodes of low oxygen saturations and high blood pressure that are concerning. Until these are resolved, he will not be extabated. He is fairly heavily sedated because of being intubated...but at least he is comfortable. However, it is breaking my heart that I cannot hold him right now. It has been three days since I have held him and it feels like a lifetime.

The urine test came back positive for infection so they are retesting that again this evening to confirm those results. Antibiotics will be changed accordingly. He is also getting a blood transfusion in the next hour. He lost a lot of blood the other day when they were starting an IV and they are thinking that his low O2 sats are partly due to that.

We had our Care Conference today focusing primarily on the upcoming heart surgery. Despite cardiology's initial wish for us to wait until he is bigger and stronger, the team has decided to move forward because of some changes in his lung and heart status. We are HOPING the surgery improves his breathing and better regulates his body. However, the cardiologist continues to warn that we might not see dramatic changes afterwards. We simply don't know at this point what the outcome will be.

Eliz and I had a lengthy discussion with the cardiologist earlier today about the risks associated with surgery, especially on such a small baby. Quite frightening. No mother wants their baby to have open heart surgery, but we have to trust in our team and the surgeons. I agree that something is going on differently with Maxwell and I am hoping that this eliminates at least some of the issues.

The surgery will happen within the next two weeks. I think it will happen the later part of this upcoming week or the beginning of the next. They first want to ensure he is "stable" and that we have not missed anything, i.e. infection. Once he is stable, they will coordinate a day with the surgeons. The surgery will take approximately five hours.

Tomorrow I will be attending the funeral for sweet 6 year old Timmy, who departed his earthly body Monday evening, after a vicious battle with cancer. I took Elizabeth to meet him and his family on Wednesday and we came upon an empty room. It was a devestating afternoon. Please keep lil' Timmy and his loving family in your thoughts and prayers this weekend.

I have seen so much sadness and loss in recent months, I know I will never be the same again. Yet while it can be extremely depressing, it also allows you a clear, fresh view of life and puts everything in true perspective. I know Max...and all the wonderful, inspiring children and families here at the hospital...have changed me for the better. I had the strangest thought tonight as I was putting away my breast milk. In some odd way, I feel like my life has been training me for be Max's mom, his advocate, his strength. Even though there are days when I feel like I just cannot do this, I look at Maxwell and am amazed at his spirit and just know I was destined to be his mommy. He is absolutely incredible.

Please keep my lil' man in your thoughts and prayers...he has a tough couple weeks and months ahead. Thank you everyone!

***And a special thanks to those of you who have sent such fun gifts and cards to Maxwell. Sorry I have been late on my thank you notes, hope you understand! Once Max is no longer "snowed" on sedatives, I'm sure he will love all his new toys and clothes...thank you, thank you, thank you!!! :)


tessa said...

Amy and maxwell
i will be thinking of you both in the next few weeks and praying extra are both amazing,beautiful people who are in my thoughts always...i am also sending all my strength to lil max to get better so you can hold him again....hugs and kisses to both of you....
much love

Anara said...

Maxwell is your gift Amy;

Babies are a gift from God
Sent from up above
We receive them tiny and fragile
And needing of our love

From the moment that we hold them
They are bonded to our heart
We do the very best we can
And let the doctor's do their part

We pray for strength and courage
And peace within our souls
To keep on fighting every day
And never lose sight of our goals

The warmth and comfort we can give
That calm's away their fears
Protecting Gods most precious one's
With love and hope and tears

I love you two!! Anara XOXOXO

Kerry said...


I have tears in my eyes reading all that Max is going through. My heart hurts for him and for you. I will definitely continue my prayers for you both, and also will keep Timmy's family in my prayers. Having lost our baby granddaughter last April, I can identify with the pain they are feeling right now. Please stay strong, trust in the Lord, and know that He is walking through this with you. Max is an incredible little guy, and such a fighter! God bless you both!


Dylan (and Kristy) said...


I am praying that the heart surgery does help Max although it won't obviously eleviate all of his issues. But from my experience with Dylan's heart surgery was the surprising amount of energy he had in the weeks following. Hopefully, following Max's surgery, he will also have this abundance of energy to focus on getting better with as well as free up his breathing a bit. We are praying for lil' Max and you.

Kristy, Ray, and Dylan

Meredith said...

Hi, Amy:

I cannot believe all that you and Max have endured lately. My heart goes out to both of you. I pray that the surgery makes him feel so much better, and I wish you continued strength as you weather through these next few weeks. Maxwell is truly blessed to have you as his mommy!