Saturday, September 24, 2005


Good news on the nose today! It does not appear that the passages have closed any further from yesterday. HOPEFULLY the initial narrowing was just a bit of scar tissue (which is to be expected), and Max will not require any further procedures or surgeries on his nose. They will continue to check it daily to monitor any changes. Please keep praying for Max's important to his recovery!

His nose is sooo cute without those stents...and wow, the ability to move around without the oxygen mask is wonderful! I told the ENT doc today that if Max's nose would be perfect from now on, he would forever be my best friend! He laughed and said that I would certainly miss my 7 am wake up calls! The ENT team always does early usually I wake up with their arrival!


Many of you have asked for updated (drum roll please) here is MAXWELL!!! Bigger and better than ever! Couldn't you just eat him up??? He is soooo yummy delicious!

Notice his "little hero" shirt in the photo on the perfect is that???


Max and I love bathtime, and we are looking forward to enjoying many fun times ahead in the water...the pool, ocean,! Additionally, the OT and I were talking yesterday about how great the water will be for him, because CHARGE kids often have low muscle tone, so we can develop strength and have fun at the same time!

Friday, September 23, 2005


As of this morning, the doctors are concerned that one of Max's nasal passages is narrowing. This could be nothing...or it could be that the scar tissue is building up and he will need another surgery very soon. I begged the doctor...PLEASE, PLEASE, PLEASE make his nose better, but of course only God can perform miracles. So again I turn to you, my family and friends, to keep sweet Max in your prayers and beg the Lord to watch over our little guy and keep his nose open and healthy and breathing clearly.

Regarding his lungs, there will be another test this weekend to see if the treatments, which he is handling like a champ, are making any change.

Both of these issues are critical to Max's health...and therefore I am on pins and needles right now just waiting and waiting.

On a less important note, today the Occupational Therapist is going to perform a test with Maxwell to determine where he is developmentally. The test is not normally done at this age due to the extended hospital stay (he will definitely be behind because of this), however, I wanted to get an idea so I would know if I should work with him more or the same with the different therapies. Should be interesting and at least a good distraction from the more important issues addressed earlier.

My mom, Suzanne, is coming in town tomorrow...and we are very excited to see her! She was here for the first two months of Max's life and then returned to AZ to get caught up on her life for a few weeks...and now she is returning to help me and Elizabeth for awhile. So excited for her to see Maxwell...he has certainly changed A LOT! And it will certainly be helpful to have her here if Max indeed returns to's always a very emotional and scary time.

Thursday, September 22, 2005


Today Max is three months old (one month old "corrected age")!

We will try to temporarily forget the frustrating news yesterday and focus on celebrating and enjoying Max's wonderful presence and enormous spirit! He is quite an amazing gift...and he is certainly here to teach us all valuable lessons on faith, patience, love and hope.

Perhaps we will even have a dance or two to commemorate the special day. :) By the way, it was so fun to hear that so many of you said you had a dance with your kids in Max's honor after reading the "dancing" blog sweet!

Happy Birthday Maxwell Bennett are certainly one LOVED little guy!!! (Isn't his name so incredibly powerful? I love saying it all together.)

And Happy "2 month" Birthday to Max's cousin "Thomas the Tank"!!! You are such a cutie and I love your new adorable noises...besides the bodily function ones! hee hee!!!


Yesterday was our care conference...and we had some disappointing news. Without going into too much detail, basically Max's lungs are still suffering from chronic lung disease because of his prematurity and time on the ventilator. There are some options the team is considering and several are not fun. Well none are "fun"...but some are less favorable than others in my opinion.

I am very, very frustrated right now with the medical team and I let them know it yesterday and meeting officially with a coordinator today to make my concerns heard loud and clear. Until I organized the care conference yesterday, there was little coordination among the different specialists...why did I have to be the one to focus everyone together? Some days I just want to be his momma...and not be worried that we are missing something medically. And there have been several instances recently that this has happened...I know I am his "best advocate" as everyone likes to say, but hey, aren't others watching out for him too? It is very frustrating because his attending doctors rotate so consistency is a big issue.

Additionally, Max had another one of his "spells" last my frustration is compounded with a lack of sleep. Eeks. I went and bought several books yesterday "Baby Whisperer", etc. to see if we can do something differently to appease him. I am hoping these spells are not medically related...but they are definitely quite confusing.

I have a special and very important prayer request today for everyone. First, please continue to pray for Max's nose (it is so cute without the stents). Second, please also pray...lots and lots... for the healing of his lungs. This is incredibly important. We are trying several treatments starting day...and the lungs must respond really well...or the docs will want to pursue some other more serious options. Thank you everyone for your love and support of us...Max really needs your prayers....and quite frankly, so do I. Love, Amy and Max

Tuesday, September 20, 2005


Max and I enjoyed our first dance together this was wonderful! You see, before when he had his stents and his blowby mask, movement was fairly limited. But now we can move a good 4-5 feet...just enough for some moving and grooving! I held him in front of me in my arms and he just stared right at me and really seemed to be enjoying himself. :) I laughed out loud and also was truly an amazing time for us. I know for some parents dancing with your baby seems minor, but this is a huge step for us for what we have gone through these past three months.

The other fun news is that Max has been on and off room air throughout the day. Right now his sat (oxygen saturation) is 95%! Wow Max...very impressive! All day I have been coming out to the cluster (where the nurses and doctors are) and bragging..."Hey come check out Max, he's satting 97% on room air!!! Come see, come see!" Plus many of them had the opportunity to hear me sing to Max while we danced...everyone got a big kick out of that too. We like to make up songs together...ok, I make them up but Max is always the star of the songs so it's a team effort! And now that I officially know that Max has a hearing loss, I sing louder for him, which allows the nurses to all hear my funny songs. Kind of embarrassing, but oh well! :)

Please continue to pray for no complications with Max's nose. But also, please keep sweet little Timothy, a precious 5 year old fighting terminal cancer, and Lane, a tiny little guy who is having a very important surgery on Wednesday in your prayers...their families are both amazing and would love your loving support during this difficult time. Thank you!

P.S. I was telling a nurse yesterday about the hundreds of people who have contacted me via email, phone or mail with prayers for Maxwell. It truly is amazing. She said she recently read about a scientific study of two sets of heart had lots of people praying for them, the other did not. And what do you think happened? Sure enough, the "prayed for" group recovered much more quickly than the other group. I'm sure there are several other similar examples, but it just reminded me of the tremendous power of prayer...especially when lots and lots of loving people are all praying for the same thing!


Another heartbreaking morning at Children's Hospital....

We learned today of the passing of a wonderful little boy, Conner, who was in the ICU at the same time with Max. He was born at just over 24 weeks, so he was very young and very little. He fought very hard for nearly three weeks but finally his body decided enough was enough. His mom, Jenny, was able to hold him as he went to be with his maker. Jenny is a wonderful woman and mother...we always would run into each other and give updates on each other's little guys. I hadn't seen her for a while, which usually means good or bad news. And unfortunately it was the latter.

Please pray for peace and comfort for Jenny and her family as they mourn the loss of their dear son, Conner.


I woke up bright and early Monday morning...after a long night with Max (off and on fussy andd needing suctioning) the ENT doctor shaking me. One of those situations where you think you are dreaming that someone is shaking you, but it is actually happening. Funny way to wake up! You truly have no privacy in the hospital! :)

The removal went well and the passages are open and clear. He is now able to use the nasal canula instead of the blowby mask. It was very strange to get used to not having to watch the mask all the time...I am so used to making sure his face is in the direction of the mask and now he has so much more freedom. Also, it was wonderful to turn off the mask because of the sound! You didn't realize how loud it was until it was gone. With Max's partial hearing loss, that probably wasn't helping him much understand the world around him.

I also can hold him in many more positions (including my favorite, kangaroo care) again. With his stents and mask, the options were pretty limited which was frustrating.

We had a great morning together and it was wonderful to be able to move around so much more freely. HOWEVER, the afternoon and evening was miserable for Mr. Max and therefore his mommy. He cried and cried and was like last week all over again. Not sure what is going on...and finally we did have to calm him down with Adavan. He simply wouldn't calm down and that is not good for his heart...and for growing. It really worries me that something medically is bothering him...but I am hoping he just was agitated with the stent removal. We'll see how today goes.

His weight is not doing as well as it was. He grew in length last week but gained virtually nothing...and yesterday he actually lost weight. I met with Max's dietician and we are going to keep a close eye on this, but she is not overly worried at this point.

We have several specialists coming by to check on him today to prepare for tomorrow's care conference. I have quite a LIST of I am quite eager to get together with everyone and plan for little Maxwell.

If you are praying for Max, please pray specificially for the HEALING OF HIS NOSE. Please ask God to eliminate any complications or future issues and to enable Max to have easy and clear breathing from this point on. I cannot tell you how important the solution of the nose problem is to Max's health...please keep him in your thoughts and please pray for this healing. Thank you very, very much!!!

Sunday, September 18, 2005


Max and I had a really good weekend! He managed to get through both nights without sedatives...way to go Max! :) I slept basically with one eye open and as soon as I heard even a peep or a difference in breathing, I jumped up and either suctioned him or just gave him some good TLC. We think he may medically be doing better and that is why he is more relaxed at night...or perhaps we tricked him out of his routine! Hoping tonight continues this positive trend. Is it strange that I don't find it weird to be half asleep and suctioning my baby's nose and throat at 4 in the morning...and I manage to still do it perfectly? Bizarre how you just do what you need to do, isn't it?

We do several "OT" (occupational therapy) sessions both days. This includes the "non nutritive oral stimulation activities"...basically getting him ok with having things near and in his mouth. We are starting to overcome some of the oral aversion...I think...he likes my finger but isn't too interested in the binky. He definitely enjoys lots of kisses all over his face!

We are also working on increasing his neck strength. He would rather have me lift his head for him...but he seemed to make some efforts today.

I met a really nice woman in the laundry room yesterday and today I spent the afternoon with her and her wonderful daughter. Her daughter was diagnosed with leukemia at age 2 and has been battling it ever since...she is now 13. I had fun going to Bath and Body Works today and buying her a fun assortment of goodies. I also bought Max's primary nurses lots of lotions and perfumes to thank them for their special care. Bribery can't hurt right? Last week I sent the team cookies and brownies...and they were much appreciated!

It is simply amazing all the stories you hear at the hospital. From the young woman with leukemia, to the baby born with a four pound tumor, or the father of a 5 year old with terminal cancer and their family just not giving up....every day I meet another incredible family who is battling the odds and holding on to their faith. Truly amazing.

Max and I have renewed faith and hope that we are not only going to survive, but truly THRIVE! He is such a terrific little man...and I am going to do everything possible (and more so!) to give him EVERYTHING he needs. Like my song goes..."I love Maxwell and Maxwell loves me...(and the rest changes ever day based on what we are doing)" It's a silly song, but we enjoy it! :)


Off to get some dinner...totally missed cafeteria meal time, but I think a peanut butter and jelly should suffice!