~~HOME~~

Just wanted to take a minute and post that we are home! JM had a good morning so far. He is eating well and played a good part of the AM, before we got discharged! He got a bath and he felt so much better.
WE got here about noon and are relieved to be back to a normal setting. EM and SJ were so happy to see baby brother. THey didn't know the details, but especially EM was really wanting him home!
I will try and post more another time...but just know we are here and all is going well now!

Hopefully HOME soon!

JM has made amazing strides forward in the last 24 hours. He is such a little trooper. He made it out of the PICU yesterday morning about 11 am and has been improving since. He off oxygen and his sats have been good all night. He started eating about 2PM yesterday and is doing well with that. We started out slowly as we didn't want him to get nauseous and decide he didn't like to eat. He took a full bottle last night about 8PM and has slept well overnight. They have had to wake him up for pain meds a couple of times but otherwise his night has gone smoothly.
He played in his crib a bit from 3-4AM...but then went back to sleep till now when they had to awaken him again.
The hope is that we will make the trip over the river sometime today. I know 3 kids that will be glad to have "baby brother" home. They don't know all that he has been through, but just know he didn't come home when they expected him.
EM had a follow up appoinment with his surgeon yesterday and all is going well with him. He can now eat whatever he wants...boy did that make him happy!!
I will try and post once we are home.
My parents are still here and have been such great help. Knowing that they kids are being so well taken care or makes me not have to worry about that!

Thanks for all the support. We love you all.

IMPROVEMENT

I want to try and get something updated here before the day gets going. JM got extubated about 1PM yesterday afternoon. It has not been easy for him, but he is improving. About 3:30 he had an episode that he either had a slight seizure or he held his breath and passed out. One way or the other it was not fun to watch. He seems to be bouncing back from that as well. No repeat performances thank goodness. As far as we know he has never done anything like that in the past and hopefully he will not repeat.
They have him in a stroller overnight. It keeps him upright and his vital signs have been good. He is off all oxygen support this am and his sats at 100%. That is good to see. He has eaten anything yet, so hopefully he will show interest in that soon.
The bleeding seems to have stopped. His Hemoglobin seems stable at 8. He was 13 prior to his first surgery. They didn't check one prior to this surgery. When he started bleeding in the PACU he was 9.9 and by the time he was out of surgery he was 6.9. So 8 is good for now. He looks pale, but cute!
OK I need to get a shower. Hopefully we will get moved out of the PICU today. I will try and post again with any major changes.
Thanks for all the prayers. I can feel your support.
HUGS

Nothing seems to be Easy for JM

Thought I would let you all know that we are in need of you prayers. JM had a rough go after his palate repair yesterday. Things seemed to be going smoothly. They were prepared for his trouble with the anesthesia and had talked to the PICU incase he needed to go there again. They were about to transfer him to the PICU, when the bleeding from his mouth really increased. To make a long story short...he ended up back in surgery and on a Ventilator overnight in the PICU. That is where things stand now. His bleeding has nearly stopped and they are working to extubate him. Hopefully sometime yet this am.
He looks like a little angel, but it is really difficult to see him go through all of this.
Please pray for him and that the bleeding does start again. That he will be able to be contented until they allow us to feed him.
Thanks for all the prayers you have already said on his behalf.
I will try and keep you posted.
HUGS

BIG HAPPENINGS

Just wanted to take a minute before this week gets going. As you can see JM was Batized today. It went well and we were blessed to have many friends at the service. He held up really well. It gets to be long, but I was amazed how well he did. Several of SF's co-workers came and I know that was very special for him. Our church family is such a blessing to us and we enjoyed the day very much.
Tomorrow at 2PM is Joshua's 3rd surgery. He will have his palate closed. We hope everything goes smoothly, but after his last experience with anesthesia, I must admit I am a bit anxious. Please keep us in your prayers. Once this is complete we should have a break from the surgical rooms for a while. This will be our 5th surgery for our boys in the last 3 months. 2 for EM and 3 for JM. I must be honest and say it has been a bit overwhelming. We are so blessed with all the help and support, but it has been a bit much. I look forward to when he is healed up and Spring will come and we can just be normal busy!!
My parents arrived Saturday afternoon and will be here to help in anyway we need them. I don't think we could have done this without our family. All of our "parents" are such a blessing to us!
Guess this is it for now. I will try and post as soon as I can. Probably Tuesday...if we get home as expected!

~JM's BAPTISM~A BLESSING TO US ALL~

WE LOVE OUR NEW SWEATSHIRTS Thank LUCY

~LONG WEEK~

    I have managed to get photos posted in the last week, but have not really found the time to add any update on what is going on!

    Thankfully EM has done amazingly well with his post-op from the pharyngeal flap! Nothing really seems to phase this kid! As I posted he had bounced back quickly on Tuesday from the surgery Monday morning. I think he took pain medicine yet on Wednesday, but after that he said he didn't need it! Well their was one evening, I think it was Friday he thought he might need some. He had asked for water and I said it was getting too close to bed time...so he couldn't have any more water...I didn't really want him up and in the bathroom all night...He then decided he needed "pain medicine". That seemed strange, as he hadn't taken any for several days...well it dawned on me that he drinks water after he takes the pain medicine and that was his way to get water!!! I aske him if he needed medicine or was just thirsty. He said he just wanted the water, so I let him have the water and he didn't need medicine. He is so smart...sometimes I get nervous! I think he is going to be very bright!!

    As you can tell from the photos, SJ had her 5th birthday on Friday! Not sure how she got to be that old so fast, but time does fly. She thinks she should go to school now, since she is 5!!! I told her she will start in the fall and that seems OK. I think she thought she would start as soon as she turned 5!

    We had a really cold weekend! Saturday we stayed inside all day. I think the high was Zero and the low I saw on our Thermometer was -12. Way too cold for me. Sunday we did make it to church, but it was not much warmer. Today it was +5 when I got up. Scary when that seems warm! We loaded up the van and took the kids to the zoo! Nice thing about living in the north. They make the zoos friendly for all kids of weather. Many of the exhibits are completely indoors. All 4 seemed to have a good time. We stopped by a favorite Vietnamese Restaurant near the zoo. We lived near there before we bought our house, so when MR was little we went there often. The soup and wontons are still great as was the "pancake". Not sure of the official name, but all the kids loved it!

    Had a message on the answering machine when we got home. Pre-op for JM for next Monday! I called back. I guess you know you have had a lot of surgeries when the pre-op nurse recognizes you and you know the answers before they ask the questions! I made sure they had noted his difficult time coming out of anesthesia and they will see if any changes can be made that might help! I'm sure I will be a bit anxious to send him off for his palate repair, but I know I will be really glad when it is over. My parents will come out to help this time. JM will be baptized on the 27th. So well will once again have a busy week. Prayers will be appreciated. I will do my best to keep you posted.

All for now!

    

SJ TURNS 5

A silly Slide show of the kids at SF's NEW SCHOOL!

Visit with Grandma and Grandpa

~HOME WHERE WE BELONG~

Just wanted to post that EM and I are home and glad to be here. His surgery went as expected. Nice not to have any real surprises this time! The surgery was scheduled to start at 9:15AM. It didn't really start till 9:55, but then it took just the hour that was expected. After 40 minutes in recovery they came to let me know we would be going to the short stay area. We had a nice private room for the 2 of us to spend the night. EM, is really a trooper when it comes to this...but he was really having quite a bit of pain yesterday. He didn't want to talk and he would try and take a popsicle or ice and after only a tiny amount that was enough. About 4PM yesterday I got him to get up and walk, he watched a movie, but still didn't really want to eat much. He did take some Chocolate Ice cream about 6PM. Then in the evening they gave him an extra dose of pain med and that seemed to help get things under control. They gave him pain med every 4 hours and by this morning he was asking for it! He didn't like the taste and fought us one time, but after we worked out the ice cream routine all went well!

    He ate scrambled eggs for breakfast and our MD came around and said we could head home! He ate more for lunch and about 12:30 really started acting like himself. Non-stop questions for Grandpa and played several card games. He is napping now, so I hope he wakes up feeling like himself! I do get tired of hearing him talk non-stop...but yesterday when he was so still and would only shake his head yes and no...I did want to know what they had done with my son!!

    It was good to get home to see JM and SJ...I will be glad to see MR when she gets home from school! We have been so lucky to have SF's parents here to help us out. We are so blessed by family and friends.

    All for now!

~~January 13th~~

 

    Just a quick note today. EM will have surgery in the morning! It is at 9:15, so good thoughts and prayers will be appreciated. He is having a pharyngeal flap done. This should help him to make some of those sounds that have proven difficult for him. He is OK with it because his MD, says it is a good idea. They have a good relationship and we are lucky for that. His MD was born with cleft lip/palate...so he has lived it and that really makes him extra special!

    The kids are enjoying having the extra attention with their grandparents being here! The extra sets of hands really come in handy that is for sure!

    Well I need to get busy. Need to make things are set for the morning. I will be glad when February gets here and all these surgeries are behind us!

    

~GROUP HUG~

    I just noticed it has been awhile since I checked in so thought I would try and update a bit. This last week has been a bit of a whirl wind! I guess they all are when you have 4 kids...but this one was really busy. SF teaches at a school that has Evaluations 2 times a year. When this happens the teachers meet with each parent for 1/2 hour...this makes the days really long. The evals start at 10AM and the last one is finished at 10PM. So the kids and I didn't see SF much this week! To our advantage the school just moved to a new location and it is only 5.5miles from our house...so that did help!

    SF's parents arrived Thursday evening and have already been a great help! EM will have his pharyngeal flap surgery done Monday morning, so they will be here to hold down the fort! I will spend the night in the hospital with EM and hopefully be home sometime on Tuesday! Having 2 boys with cleft lip/palate...can equal many surgeries...but we are so blessed to have them!

    I think I have mentioned that JM will have his first palate surgery the 28th...so once this month is over we might be able to come up for air! I did make a call to our insurance the other day...just to make sure that we really do have as good of coverage as I thought and yes everything is covered! We are so fortunate in that respect. We couldn't do it otherwise.

    The photo is of SF's dad with the 3 oldest...they do love having their Grandparents here!

All for now!

    

~JM'S NEW HAIR CUT~

~Sibblings!! What a Blessing~

    Each day I am amazed to watch our 4 children together!Sure they have their share of squabbling...but most of the time they show each other love and caring that makes me very proud! Many people have asked me "how are the other kids doing with JM?" I am happy to report that they all love him.

    I was able to get ahold of our surgeon's scheduler today and am happy to report that JM's palate surgery will be the 28th of this month at 2PM. It is really hard to believe in less than 3 months since JM's Gotcha day he will have had 3 surgeries and both his lip and palate will be repaired! We are very fortunate indeed.

    I am looking forward to February when I can say that both the boys are done with surgery for awhile and we can enjoy just being family!

    I worked New Year's Eve and work again tonight. It is nice to get back to a routine of sorts!! Well OK not a normal routine and it will be nuts till this month is over ...but it was good to get back to the Hospital and I really enjoyed seeing so many of my co-workers.

    Better run but wanted to post a few new photos and show off JM's new lip! It is healing nicely!