GOOD DAY!

Max is feeling a lot better! Woo hoo! Last week was a "doozy," and I am relieved to see him back to himself again. Today he is bright eyed and alert and loved spending time with his grandparents who were in town from WV.

Max is really making progress...and there actually is talk about him coming home before heart surgery. He would require in home nursing care and a lot of medical equipment of course, but still to have him home would be fabulous! The docs are very impressed with his weight gain...he is now 6 pounds, 10 ounces!!! That is great news considering all the work he does to breathe.

Keep up the great work Max, and before you know it, you will be getting lots and lots of doggy kisses from Barney and Shakespeare! :) That will be one terrific day!

ISOLATION

Today Max and I are officially in "ISOLATION" so everyone has to wear gowns and masks in our room. Pretty strange feeling...reminds me of the movie E.T., which atleast brings a smile to my face. :)

They think he has a respiratory infection...actually I (with my medical degree and all - ha ha!) somewhat diagnosed him first and sure enough they agreed once I brought it to their attention. While nurses and doctors are wonderful, I am quickly learning that you really have to be an aggressive advocate because symptoms are overlooked and mistakes are made. It's quite frustrating at times, but I must remember that no one is perfect and medicine is not an exact science.

This week we have had major issues with keeping his nasal stents clear and he's struggling to breathe...and yesterday it seemed to get worse. Additionally he has thrown up several times, which then throws his "OD tube" (his feeding tube that goes to his intestines) out of whack and we have to get an Xray to make sure the tube is in the right place. Yikes! Never thought I would be so excited for him to have the g tube surgery (where they insert a device to allow us to feed him directly to his little tummy through a "belly plug") but I am now pushing the doctors to make it happen sooner than later. Unfortunately he still is too small. They are estimating (they know I LOVE my "estimates") that could happen in a month or so. Until then, we struggle daily to keep the tube in the right place. If it moves to his stomach, his reflux causes him to throw up and then it could possibly get into his little lungs. Sounds frustrating, doesn't it?

Illness is hard enough on a "normal" child at home, but it really hits you hard in the hospital when you have so many other more serious issues. And this complicates his already labored breathing due to his "chronic lung disease" and "congestive heart failure." Boy, do I hate those definitions. I always grimace when the doctors refer to those and say "can we not just say lung and heart issues?" Oh well! I'm getting a thicker skin but you never want to hear those conditions associated with your tiny baby!

We will get more information as the day progresses. Thanks everyone for your kind emails and calls the past few days...greatly appreciated. I tell Max all the time about all his friends and family who are praying for him every day. He can't wait to meet everyone someday!

MAX GETS SICK

Today was a yucky, yucky day. Max cried for five hours straight today...and that is VERY unlike him. He is typically a very mild mannered baby (except when he is gassy!). So after nearly every nurse in the unit tried to help me comfort him (including a volunteer who played the guitar and sang for Max - the volunteers here are amazing!), we realized it was something more. He had a temp of 102 and his heart rate was over 200 continously.

So they did a spinal tap (for meningitis), a catheter up his little wee wee and blood tests to determine what was causing the fever. We are still not sure. Fortunately the tests so far show nothing "growing" but we are just in the wait and see period. The doctors said we should have a good idea tomorrow if anything is seriously wrong. Fortunately Max seems much more comfortable than earlier and appears to be ready for a good night's sleep. It was excruciatingly painful to see him in such discomfort and absolutely nothing made him feel better.

I was determined to not leave his side for all the tests...if he could endure the tests so could I. (But yikes, quite a long needle going in his back...and then again up his wee wee....it was a little intense!) It took three different people to eventually get the catheter up his small wee wee and three different tries with his veins (pretty fragile) for the IV. It was two solid hours of tests and procedures, yet Max was amazing...he is absolutely one incredible lil' guy!

I'll keep you posted...I am ready for bed big time. We were up VERY early and it's been a long day of rocking, shushing, and stressing out! HOPEFULLY we are going to have an uneventful day tomorrow...hopefully.

BAPTISM

Maxwell Bennett McKinley was baptized on Sunday at Children's Hospital. What a magical moment! Celebrating the momentous event were Elizabeth and Jim (Max's godparents), Jackson and Thomas (Max's cousins), and three of Max's favorite nurses. It was an incredibly special day, and Max looked gorgeous in his beautiful white baptism gown. He was on the slightly fussy side (looking back, I think he was starting not to feel well), and we said it's because he thought he was wearing a dress and was embarrased! We did find ourselves telling him how pretty he looked!

We were able to hold the baptism in the church chapel, which is down the hall from Max's room. Typically it would take two minutes to get there, however, we had quite an entourage of staff helping me with the oxygen tank, monitor, etc. so it was a much longer trip and we garnered much attention! It was certainly worth it, but it was also frustrating. I cannot wait for the day to be able to walk around with Max by myself, and not with a whole team! Oh what independence! :)

We would love to have had more family and friends with us for Max's baptism, but I hope everyone understands that I felt it was important to have him baptized now. The chaplain is a wonderful woman and I feel a strong connection to her. She comes every day and says a special prayer for Max, which is incredibly comforting and inspiring for me. Perhaps in the future we will hold a more formal baptism and everyone will be invited.

I will post photos later this week of beautiful Max on his big day!

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!