MJ's 6 Month post opp check up

MJ recently had his 6 month post opp check up!! I cant believe it!! Its so crazy to think that it was only 6 months ago and he is doing amazing. He is such a curious and active little boy. He is trying his hardest to walk right now which is a little scary, but I'm trying not to be paranoid about him hitting his head on everything. He is so tough he usually falls and bounces right back up. I'm the one that is freaking out lol. 

The doctor said everything is going great with his head! YAY! There are a few bumpy spots and his soft spot is still open but they are going to keep an eye on it. MJ goes back in 3 months for another follow up visit.

Here are some pictures of his visit. :)

MJ's Hospital Packing List

Here are some items that were so helpful in the hospital. When I was packing it was hard to know what to pack I just over packed. I brought everything I thought we would possibly use. I wanted to but a few posts together to help others going through cranio surgery. This will help you to know the top items we used and the links to purchase them. 

My biggest tip would be to hold your baby right away. I was encouraged by my doctor to do this. When MJ got fussy or was crying we got him out and held him. This helps because in our case his eyes were swollen shut and then he could feel, smell, and hear us. He calmed down so much when we would hold him. It is also good o he can move around and not just be in one or two positions. 

1. I-Pad Mini -  We used our iPad so much we had music playing non-stop since he woke up from surgery. He has always listened to these CD's so we created a playlist just for him to listen to on repeat. It was a mixture of instrumental music and christian lullabies that we had since he was born. The music calmed him so much. Also make sure you bring your charger we just left ours plugged into the wall. Once he opened his eyes on the 4th day in the hospital he watched Mickey mouse clubhouse which he has always liked. Also make sure you know how to work the guided access mode this is so amazing it locks the iPad so MJ can hold it and he can touch the screen. 

2. Hidden in My Heart: A Lullaby Journey Through Scripture by Jay Stocker - This album is amazing it sings the bible. MJ has loved this since he was born. It calmed him so much when he was in the hospital. 

3. Cloud B Sleep Sheep Sound Machine - MJ has also used this since birth when we were traveling it helped put him to sleep. He loves the ocean sound on this sound machine. I was given this lil sheep as a shower gift and I have used it so much. In the hospital I had the music on and I had this sound machine on his bed playing. When he would fuss we would turn the sound machine back on and he would calm right down. 

4. MAM Anti-Colic 9oz Bottle - Make sure to bring your own bottles to the hospital. When MJ was ready to drink liquids he started on pedialyte. The nurse brought in the bottles he wouldn't take it. I was so happy that I brought his from home he took it right away. Why make him more confused after the surgery give him a bottle/nipple that he knows. 

5. MAM BPA-Free Pacifier -  This is a life saver the sucking was so soothing to him right after surgery. It took us a while when he was born to find the right pacifier. He would gag with most of them when we tried MAM he it was natural to him. Make sure to have a few in case they hit the floor. 

6. Burts Bees Baby Essential Kimono - In the hospital MJ went from hot to cold to hot a lot it was the pain meds that made him like that. He also hated the hospital gown he would pull it off. I wouldn't like it either it was itchy and so awkward to wear. We used this Kimono top it was nice because it doesn't go over their head. Also we didn't put pants on him so we could change his diaper easier we just put a blanket over him. Make sure to have a lot of tops. MJ would throw up when we tried to get him to drink formula. So my mom washed our laundry every night because we went through all of our clothes everyday. 

7. Pedialyte - MJ went through a lot of this. Its all he would drink for the first 4 days. We had to ease him into the formula/ baby food. He would throw up every time we fed him for a bit. The hospital did supply the pedialyte but once we got home we needed a lot of it still. 

8. Similac: Sensitive - MJ has used this formula since he was a baby he only breast fed for a month. 
(thats a whole other story lol) He only likes this formula I have tried to change but he loves this one. I brought it to the hospital just in case and good thing that I did they didn't have this formula. So make sure you bring your formula just in case the hospital you go to doesn't have it. 

9. aden + anais Muslin Swaddle Blanket - These blankets were soooo helpful to have. The blankets in the hospital are so rough and thick. MJ was hot most of the time. These blankets are so nice and soft and thin they are perfect to have just a light cover over him. I had the shirt on him and covered the lower half of him with the blanket. 

**Another useful tip is after surgery in the hospital MJ had to be elevated. He kept sliding down the bed and every time we had to push him up to readjust him he would cry and moan in so much pain from being moved. We had an amazing nurse that showed us a trick to keep him cozy and up on his gel pillow the doctor wanted him to use so he wouldn't get a flat spot on the back of his head. She took a large hospital blanket and rolled it up and wrapped it in a U shape around him. We would rotate him from his back to his side in this U shape blanket. He really relaxed in this compared to just laying in the bed and sliding down. Such a good trick. 

WE ARE GOING HOME!!!

Yay!! We are going home!! MJ is doing so good he hasn't thrown up since last night. Yay. We are so excited. We know this will be a big transition for MJ but we think he will be so comfy in his own room and bed. Please pray that he continues to heal fast. Thank you 

                                  

One Step Forward Three Steps Backward

                                   

MJ is so cute he is laughing and smiling
but he is still in so much pain. Today we were moved out of the ICU (room 5116) I think that was hard on MJ it was stressful. He also had his first sponge bath today. He didn't like it much lol. We need prayer that he will keep food/liquids down. He gets sick a lot. They thought it was the pain meds so they slowed those down. He is now only on Motrin and Tylenol. He is still in pain when taking those. He is still getting sick and he hates taking the meds because they taste so bad. He has learned how to spit them out smart lil guy. His blood cell count was low so he will get that tested again in the am. He just can't get comfortable which is so difficult to deal with because I can't really do anything about that. On top of that he has blown his 4th IV. They didn't put another one back in yet to give him a rest and see if things turn around tomorrow and we go home. Which I don't think will happen. So he is bruised and poked from head to toe. He is also still really swollen so that needs to go down. We are asking for prayer that things keep pushing toward healing. We miss our lil baby.

Mr. Blue eyes is back

He is doing so so good. HE OPENED HIS EYES!!! The swelling is going down and he is getting more active like moving his hands around and reaching for things. His eyes opened at 5:30am this morning we both were there when he opened them. He opened his eyes and we could see him just slowly look around it was the best feeling. He keeps staring at the balloons we tied on his bed. He is the best baby so peaceful and relaxed. Sorry for not posting yesterday it was a busy day. Thank you for all that came to visit us it means so much to us. On Tuesday we had Uncle Eulie Brookins who is my uncle and he also married us and was my youth pastor growing up. He drove from Ocala to see us and pray over MJ thank you. Also on Tuesday we had Jimmy Benner who worked with Nick at ups and he was in our wedding. Thank you Jimmy for coming and just sitting and talking with us durring the surgery it means a lot. On Wednesday we had Rodney and Michelle Gage from Rethink life church they are good friends and neighbors. Thank you both for coming over and talking to us and praying over MJ it really does mean a lot that you were here. On Thursday Great Grandma and Grandpa Merritt came to see us and MJ it was nice to see them and get to talk and hangout for a bit thank you so much for coming over. Also on Thursday Jody and Regis Andrews came to visit. They said that when they didn't see me post on the blog yesterday they knew they needed to come and see us and pray over MJ. Thank you for that you two are so great. 

MJ is improving so much the dr said that we could be moved out of ICU today. Please pray that the swelling continues to go down and that he will be able to keep food/formula down. MJ is getting sick randomly we are thinking it's from the pain meds. Today he just now kept down 4 oz of formula so we are praying it stays like this. 

Thank you for all the goodies that were sent for MJ. We are so grateful for all the prayers for our lil guy. 

MJ Update from Aunt Clo and Aunt Rai

Thursday’s update, it has been a very tough few days for everyone, especially MJ. It didn’t hit us hard until the moment we said goodbye to him just before surgery. He is such an amazing little boy with the best personality. He never cries. He is always smiling, and he has the most adorable little giggle. Coming into the room in the ICU after his surgery was extremely hard. Hearing that perfect little boy in such agony was heartbreaking. We broke down. He has been so tough throughout this whole experience, and we couldn’t be more proud of him. Today he has improved a lot. Yesterday was definitely his worst day. His swelling is finally starting to go down, and we are starting to see our perfect little MJ again. He brought us so much joy today when he started talking and giggling again. He hasn’t cried at all and has been so calm. We are getting so excited to see those beautiful blue eyes again! He just opened his right eye the slightest little bit tonight! Please continue to pray for his swelling and his pain to go completely away! We are hoping to see him open both eyes tomorrow.

P.S. Thank you all for the goodies and balloons. MJ will love seeing them when he opens his eyes!

Much love,

Auntie Raimi & Auntie Chloe

To send MJ cards and goodies

A lot of people have been asking where they can send cards and goodies to MJ. We are at: 

Nemours Children's Hospital ICU

Merritt J Whitt room 3101 

13535 Nemours Parkway
Orlando, FL 32827 

We are still in the ICU the Dr told us today that we might be here the whole stay or most of our stay. If you are wanting to send anything please put attn to Merritt Whitt. They are very good about deliveries here. We will be here for about 4-5 days.  Thank you to all that have sent things for MJ mom and dad appreciate it. He will love seeing gifts when he opens his eyes. You can email us too

Growingupwhitt@gmail.com

Thank you for all the love and prayers. 

Long nights turn into early mornings

  

Yesterday he was groaning and whimpering all day in pain/frustration. Since this morning he has stopped that and is sleeping so peaceful. And he started eating yesterday bottles only but he was hungry. Grandpa got to help feed the lil man. 

He is doing amazing today. Nick and I took turns staying awake with him last night which helped so we could get some sleep. This is the sunrise this morning. Every once in a while he wakes up and rubs his eyes and moans. He doesn't understand why he can't open his eyes. (They are swolen shut) The swelling has gone up a lot just since this morning. The doctor said he thinks it will reach its peak tonight and then slowly go down from there. His eye lids are also turning black and blue this is all normal. We miss seeing his big blue eyes. One thing we are so excited about today is poop he has pooped!!! YAY!! Never thought I would get so excited about poop. Lol. He is so good. Since he can't see us he loves to be held and the doctor said this helps him relax. So everyone has been coming in to take turns to hold the lil cutie. 

He is out and doing great

He is out and doing great. His head looks different already. He is sleeping it off. So relieved that he is out and we can see and touch him. In the ICU now. The doc even saved his 1st hair cut. 

Update on MJ

Here is a bit of this morning and leading up to now. He has been having his Monavie. He loves it!!! He cries when it's all gone. 

Mom and Dad in the morning arriving at the hospital. 

He liked his hospital socks. 

He fell asleep before they took him back so sweet if he couldn't eat he was going to sleep. Up way too early. 

In progress

This hospital is so cool they give you a pager and update you throughout the surgery.