Guess who is 6 months old?

It is amazing how the last 6 months have gone by so quickly but have also been the longest 6 months of my life. I never knew I could run on so little sleep or handle so much stress, but I honestly can say that it was all worth it and I would do it all again in a heartbeat because this is the cutie pants that I get to snuggle every morning...

To say that Max is a sweet baby would be a huge understatement. He is the most darling, most endearing and gentle baby I have ever been around. He just smiles and loves everyone. He really does not cry very much and he is starting to sleep through the night. I just love him so much. We really struggled with the recovery from his second surgery but now that his body is feeling healthy his little angel spirit is really shining through.

Compared to other 6 month old babies Max is not far behind. His verbal development is right on track and he is starting to catch up with his muscular development. His neck and back muscles are still weak for a baby his age so we are going to be starting some early intervention physical therapy with him. But overall his pediatrician could not be prouder of him. She really has been surprised with how well Max is doing considering that a huge chunk of his time has been spent in the hospital or recovering. Right now Max is in the 5-10% for his weight (he has stayed in that same % so even though he is small he is growing at a steady and healthy rate) and height is 50% (yeah for tall genes from the Kelly side).

So we great check-up with his pediatrician but even better was his check-up with his cardiologist. When we first went into the appointment with Dr. King I asked how long Max will need to be on his prescription medication to regulate his blood pressure. The doctor simply stated that for a patient with Max's condition it would probably be a long term necessity although the exact prescription would be adjusted as he got bigger. Max then got a physical and and had an echocardiogram done. The results... amazing! Max's oxygen levels were around 82! When he had his second surgery the doctors were all hoping that his oxygen would stay between 75 and 85. Right on Max. Also, after taking a closer look at Max's heart rhythms, blood pressure and blood flow Dr. King said that Max did not need to be on any more prescriptions! Max's body has totally adjusted and regulated to the changes that happened during his surgeries! Incredible. Max's heart is still not, and never will be, totally healthy but the fact that his body has figured out how to efficiently work with his little mixed up heart is a miracle.

The end results from both doctors... Max is doing great! We do not need to see the pediatrician until he is ready for his 9 month check-up and we don't need to see his cardiologist for another 4 months! Whoo-hoo! Max has proved it to us and his doctors that he is healthy and although we will always be concerned about his heart, Max is a champion and I am so proud of my boy. He has overcome so much in his short, sweet life. Now this chapter of our lives is over. There is still a lot to be written about Max and his heart of gold but for now our focus can shift from medication, hospitals and doctor visits to giggling, playing, getting stronger and enjoying the summer!

The Max Report

-Max has starting eating solid foods. So far he has only had rice cereal, sweet potatoes, green beans and applesauce

-Max still does not take a pacifier and much prefers to suck on his fingers, a blanket or the collar of your shirt

-Max LOVES Morgen. He will just watch in awe as his brother sings to him, plays with him or simply plays next to him.

-Max is a cuddle bug through and through.

-Max really enjoys being outside. If he is having a fussy spell he usually can be calmed down by just stepping out onto the balcony.

-Max is really good in the car. I don't know what he does back there but he usually doesn't make a peep.

-Max will let anyone hold him and his very good at flashing his gummy smile to strangers.

-Max's scar is really sensitive. If you run your fingers along his chest he always squirms and smiles.

-Max has a darling little giggle but you really have to work hard to get that giggle out of him. He is quick to smile but not as quick to laugh.

-Max takes a morning nap, an afternoon nap (at the same time as Morgen- yeah for me), and an evening nap on daddy's chest (he absolutely loves sleeping on daddy's chest).

-Max is starting to play more with toys. He likes to grab, shake and taste anything that is within his reach.

-Max really likes taking baths and going swimming.

-Max still does not have any teeth but he is starting to drool more and more which makes me think those teeth are not far behind.

-When Max wakes up in the morning or from a nap he does not cry. Usually when I go to get him out of bed he is just patiently waiting with a huge grin on his face.

-If Max gets upset he has a really cute pouty lip.

-Max really likes to play patty cake.

-Max still gets comments all the time about his big, round eyes.

-Max knows how to click his tongue and blow raspberries.

-Max likes it when you nibble on his cheeks and toes.

-Max likes to be naked and it usually makes him really hyper.

-Max's nicknames: Mighty Max, Maximilian, Tark, Mr. Moo, Maxy boy, Boo

And some pictures of our Max...

Big eyes and messy face.

Whoa, sunglasses!

So sleepy.

Twinkle eyes and finger sucking.

Bath time happiness.

All smiles.

I love you a million my mighty Max!

3 week post-surgery appointment...

Yesterday Max met with his cardiologist and I happy to announce that Max has made a full recovery!!! I would say for the past 3 weeks Max has been more then a handful, he has engulfed every ounce of energy and patience from me. He has been cranky, not sleeping, not eating enough, throwing up, gaging on medication... and the worst part was that he was not himself. Normal Max is content, happy and easy going. Post-surgery Max has been fussy, irritated and quite demanding (I can't blame him considering what he went through). Well something changed this weekend. I don't know what happened but all of a sudden Max is back! No more crying, no more sad eyes, no more wailing for hours... our little boy is back to acting like himself. Phew!

So a happy Max went to meet with his cardiologist yesterday. Dr. King was extremely pleased with Max- oxygen levels are up, blood pressure is normal, heart rhythm is regular... AMAZING! In fact, while Dr. King was doing the examination Max was all smiles and coos. It was darling. Since our little trooper turned a corner and proved to Dr. King that he is ready to grow big and strong he was taken off his prescription formula (yahoo- no more vomit!) and he is down to only one prescription medication (yahoo again!).

It seems that we are out of the woods. Max is finally feeling better. We will still see Dr. King every few months to check on Max's heart and we know there is another surgery looming ahead in a few years but for now... Max gets to be Max! He gets to be a regular baby, doing regular baby things. That makes me SO happy to know that my baby does not have to hurt or be sad or be in the hospital any more!

Here is a picture of Max during the echocardiogram...

Dr. King does not like his picture taken so I was lucky to get this shot of the back of his head. Since it is a pediatric cardiology office there are all sorts of toys to distract the kids during the echo- mobiles, bubbles machine, books, DVD player, etc. Max will go see Dr. King again in 2 months. In the meantime we will be working on Max sleeping better at night and lifting his head when he is on his tummy. Good job Max!

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!

Loves for Max...

Into the PICU

After surgery Max was brought into the PICU for recovery. Once he was settled and hooked up to all of his monitors we were able to visit him. His heart rate was pretty high when he was brought into the PICU but this morning it has settled down to a normal rate. Last night he was kept heavily medicated and this morning the nurses are weaning him off some of the medication with the hope of taking him off the ventilator today. It is a difficult balance to find with pain medication. Obviously we want Max to be comfortable and not throbbing with pain but too much medication keeps him from being awake and able to breath on his own. Right now we are waiting for him to wake up a little more and then the respiratory team is going to try taking him off the ventilator sometime this afternoon. He is really swollen today but he is responding well to touch and is wiggling around quite a bit. For most of the day I will just sit by his side. It is comforting to me to watch him breath, watch his heart rhythm and every once in a while I see his little eyes open for a second. I really can not believe how strong my baby is. He amazes me.

Here is Max being wheeled from the operating room to the PICU with the surgical team.

This is a picture of the first time we saw Max for the first time after surgery.

What do you do while you are at the hospital for 12 hours? We read, knitted, checked emails, updated blogs, checked facebook...

Max in the PICU

Surgery is over!!!

Max is all done! We just got word that the surgery is complete and the surgeons are working on closing the incision! He made it! He was strong! I am SO relieved but I feel like I won't believe Max is okay until I see him. Even though it has only been a few hours I feel like it has been an eternity since I last saw my little boy. In a few minutes the surgical team will be bringing Max up to the ICU. We will get to see Max just for a minute as his crib passes in the hall and then we will have some time to talk to the surgeons. I am so proud of my little boy. He was brave and made it through.

By-pass machine...

Max is doing great so far. He was hooked up to the by-pass machine around 10:15am. The last update we got from the nurse was all positive. Max was stable and tolerating the anesthesia well. We still have a long wait but so far so good.

My heart flips back and forth from worry to calm. I am so anxious for the surgery to be over and for Max to be stable in the ICU.

Back in the waiting room...

Max was admitted to the hospital this morning for his second heart surgery. It is almost 9:00 and Max has been in surgery for about an hour already. Spencer and I are sitting in the waiting room. Waiting...
We have had a busy day already. The last time Max could eat this morning was 3:30. We both got up with him to feed him a bottle and give him some extra cuddles. 5:00 Spencer and I were both up and getting ready. 5:30 we woke Max up from a deep sleep to get in his car seat and we were off to the hospital. 5:45 Max was wide awake while we were driving and started sucking on his hands. 6:00 we checked in to the Pediatric Admitting Office. 6:30 Max had a pre-surgery check-up (weight, length, blood pressure, oxygen saturation, etc). 6:45 Max fell asleep in my arms. 7:00 we walked down to the surgery waiting room. 7:20 we met with Max's anesthesiologist and surgeon. 7:30 I handed my sleeping baby over to a nurse and he went through the double doors into the operating room.

Spencer and I are a mix of emotions. There is no way to really explain how we are feeling at this point. I will say that it was easier for me to watch my baby go into the operating room because he was asleep. He look peaceful and calm. I can only hope that the anesthesia kicked in before he woke up and realized he was hungry, cold and not with mommy. We will hopefully get an update on the surgery and how Max is doing within the hour. We love you Max! Be strong!

Does this look like a baby who is going to have heart surgery in an hour? Max made us feel less nervous because he was being so sweet and cute while we were waiting this morning.

Max saying, "Don't worry dad!"

Sleeping in mommy's arms in the operating waiting room.

Last kiss from mommy.