May 11th...

One year ago I found out I was pregnant with Max! What year it has been!

Hospital face...

This is the face we saw constantly while we were at the hospital with Max- this look of "please don't touch me because I'm scared, tired, hurting, annoyed and sad." Now that we are home we are seeing this face less and less. We can't wait for our happy-go-lucky, mellow baby boy to make a full recovery and start smiling all the time!

Our pharmacy...

Pill splitters, pill crushers, syringes, perscription formula...this is all part of our daily routine. Since being home from the hospital Max has needed to be on a number of medications. He has been on a total of 7 different medicines that are needed around the clock. Some are needed every 4 hours, some every 6 hours, some are needed twice a day and some are needed 3 times a day. It makes for a long day trying to get in all the medicines at the right time, especially since every time we give Max one of his medicines it makes him cry and/or throw-up. Fun stuff. We are all super excited though because as of tomorrow he will only be on 2 medications and only need to take Tylenol as needed! No baby that is 4 months old should ever have this many drugs running through their system. Poor Max- I can't blame him for being so cranky this last week and a half.

Max is going home!!!

We made it! Max gets to go home today. The hospital is an amazing place. I am just in awe with the knowledge and experience of the doctors who have helped us. The nurses have all been so sweet and helpful. Along with all the care we received from the nursing staff and doctors there are some other things we will miss about the hospital...

-endless supply of free diapers, wipes and formula
-instant hot water tap (so easy when you need to warm bottles)
-as many clean wash clothes and blankets as we need
-the nurses changing dirty diapers
-crushed ice and juice
-watching TV in the middle of the day and not feeling guilty
-the sweet volunteers who would hold Max when I needed a break
-hand sanitizer available around every corner
-the "call" button to the nurse station
-our Case Managers- so helpful, caring and wonderful every step of the way

I could go on. I also could make a list of all the things we will not miss about the hospital but I would rather just focus on the positive things because today is our happy day- Max is going home!!! He did it! He was tough! He was strong! He is Mighty Max!

What difference a week can make...

Max last week...

Max today...

I would say he is feeling MUCH better!!!

Hearts! Hearts! Hearts!

It is almost time to leave the hospital and Max has received over 250 hearts! Some hearts were hand delivered and most were sent in the mail. Every heart was unique and special. Max received hearts from aunts, uncles, grandpas, grandmas, cousins, greats aunts, great uncles, great grandma, great grandpa, second cousins, first cousins once removed, veterans, veterinary techs, preschoolers, nursery kids, neighbors, friends, pets, ward members and missionaries from the Winnipeg Canada mission. Hearts came from Hawaii to New York and many states in between. The smallest heart was 2 inches long and the largest heart was 2 feet long. The oldest person Max received a heart from was great grandpa Southwick (82) and the youngest was cousin Talan (2 months). The hearts were every color of the rainbow and decorated with buttons, ribbon, glitter, stickers, pom-poms, popcicle sticks, beads and candy. Each heart had a special message to Max. He received hearts with scriptures, quotes from Dr. Seuss, an original poem, and lots of loving, encouraging words. There are hearts with pictures of Disney characters and Superman. There are hearts written in Spanish. There are hearts with the BYU fight song. There are hearts that were hand painted. There are hearts that were made of gold. Max was called a champ, a tiger, an angel, a rockstar, a cougar, a baby and a hero.

Lots of hearts=lots of love for Mighty Max Kelly

One step forward and two steps back...

Recovery for Max has been up and down. We are still at the hospital and the doctors still can not give us a date when they think we will be going home. I just finished giving Max his 3rd bath today because he pucked all over himself once again. I am so incredible happy that everything regarding the surgery and the healing of Max's heart is going well but we just seem to be hitting every other bump along the road.

Max has something called chylothorax and consequently he needs to be on a special formula. The new formula is pretty nasty and Max was getting his food through a feeding tube. We have been slowly trying to reintroduce the bottle and in the past 24 hours he has made a lot of progress (step forward). Since he is taking his formula orally he is also given his medication orally. The medication makes him gag and then he vomits- medicine and formula both come up (two steps back).

Max has also developed a fever which is an indication of infection. Today the nurses took blood samples and samples from the fluid draining from his chest tubes. It take 24-48 hours for the lab to test the samples so we just have to wait to figure out the results. If it is negative for infection- good. If it is positive for infection- we have to start on IV antibiotics and stay at the hospital until it clears up.

I am just wearing out. We did not expect to be at the hospital this long. Everyday that we are here is another day I miss being with Morgen and Spencer. It is another day of sleepless nights on the hospital cots. It is another day of Max being exposed to germs. It is another day of gross hospital food. It is another day of no fresh air and exercise. It is another day that Max is uncomfortable and constantly poked and prodded by nurses and doctors. It is another day of being surrounded by sadness, worry, and frustration.

Hopefully we will start taking more steps forward with Max's recovery but at this point I feel like I have to have a pessimistic attitude so I can protect my hopes of going home soon. Max is so strong and he is toughing out the situation the best he can. I wish I could be more like him.

Pictures...

Our friend Laura came and took some pictures of Max. She is so talented and captured some great images of our tough little guy.

Recovery time...

Max's recovery has been a bumpy road but that is expected after open heart surgery. The main source of discomfort for Max has been headaches. Since he is so swollen the nurses said that he is experiencing his first migraine- poor guy. Lights, noises, touch... he is sensitive to everything and quite cranky. As the swelling goes down, so will his pain.

He is on a special formula now that is low fat and high protein. It tastes awful. In fact, one of the nurses said that at one point the hospital staff did a taste test of all the formulas that patients receive and the one Max is on was the worst of the bunch! We have to try to feed him a bottle and whatever he does not finish is given to him through a feeding tube. Most likely we will go home with the feeding tube since he needs to stay on the formula for at least a month.

Max has been transferred to the pediatric ward which means the doctors feel he is doing well. We are not sure how many more days we will be in the hospital. Right now we are just trying to keep Max as calm and comfortable as possible.

This is me feeding Max for the first time. We can hold Max now but as you can see in picture it isn't easy or very comfortable with all the wires and monitors attached to him.Today the swelling has gone down a lot and Max has been awake more. He is starting to look more like himself. His eyes still look very sad but soon enough we will have our happy boy smiling back at us.Morgen was able to visit Max today. Morgen was more excited about pushing the buttons on the TV remote then seeing Max but it still felt great to have both of my little boys together for a few minutes. Hopefully the next few days will be full of rest and we will be home soon!

I "heart" Max...

Max has received so many hearts. His room is so cheerful, bright and full of hope from all of his family and friends. It is tricky finding enough room to hang all of his hearts without getting in the way of the monitors and equipment but we want Max to know how much he is loved. We are still getting hearts in the mail so there will be even more added to the wall by the end of the week!