Monday, March 29, 2010

My Beautiful Sweet Heart Baby.. We LOVE you soooo Much! You are so Brave and Strong and you don't even know it.. I can tell by the look in your eyes that you know something BIG is about to happen. Daddy, I and Cayne will be with you through it all! We love you little guy!!

Well the countdown has begun.. A countdown that I wish I never had to think about.. Today it is 2 weeks and 2 days before Maccoy's Open Heart Surgery.. We met with the surgeon Dr.OBrein on Friday for our Consult. He seems like a very smart man who cares about his patients and knows what he is doing. Clint and I both walked out of that appt. feeling very confident that he would do a great job of mending our little guys broken heart! Really the info he gave us was all stuff we have heard a dozen times before and read a million times over. He did tell us that he was impressed by Maccoy's size and him still being pink tet guess they don't see a lot of heart babies as chubby and Pink as Maccoy (patting myself on the back again Good old "boobie juice"). He thought Maccoy's surgery would take about 4 hours but we probably won't see him for close to 6hours. They will take him from us in PreOP holding back to the OR where they will put him "to sleep" and then place all his lines (IV's etc.) much better than sticking him a dozen times while he is screaming/crying this takes about 1 hour, then once all those are in place they make the incision cut the sternum and put him on the heart/lung bypass machine surgery has began once all the patches are in place and the muscle bundles cut out and his heart is REPAIRED they will take him off the bypass and his heart will start beating on its own again they will close and take him back to the Intensive Care Unit and once he is settled and we have talked to Dr.OBrein about how surgery went (about 45mins) they will take us back to be with him. He will be Sedated and have Several IV's, a central line, a arterial line, NG tube in his nose to empty his stomach, his incision will be dressed and have two drains in it, BP cuff on, and of course be on the Ventilator. He will have his own nurse who is in the room with him always in the PICU, and Clint and I (an Cayne) can be with him 24hrs/day and you can bet we will be! I AM NOT LEAVING MY BABY! We of course are scared to death, but this is our only option so we must be strong/brave and move forward so that we can put this behind us.. We are already planing a CELEBRATION Vacation just the 9 of us enjoying each other and Celebrating getting through this past 18+mths of Craziness!
Dr.O said he usually doesn't take them off the ventilator for at least 24 hours this is so their body has a chance to start to heal/rest from such a Big surgery and sometimes they are on it longer just depends on the kiddo. He said to expect 4 days in the PICU and then 4 to 5 days on the PEDS floor of course this is only an estimate could be shorter (they would be great) or could be longer :( Every kid is different. He did say that Maccoy's echo (sono of his heart) shows stenosis above,at and below the pulmonary valve which means if they have to cut over the pulmonary valve we could see some leaking around the valve later on which would lead him to need more surgeries to replace the valve.
I went to visit Immanuel in the PICU on Friday the day after his surgery and he looked so great! even with all the tubes/wires/drains etc.. I walked away happy thinking that wasn't so bad only to have it catch up with me later. You see I started thinking about all the Pain my baby would be in, the fact that I won't be able to pick him up and sway with him and whisper in his ear to calm him down, I won't get to see his beautiful smile when I say "Hi HONEY", or watch him do his army crawl for many days.. All this just about BROKE me... Can you imagine how hard that is going to be? Screw all the wires/tubes/drains those I have seen many times before(I was a nurse ya know) but to not be able to comfort my child like I do a million times a day is just to much for me to think of.. I wish I could take all the pain from him and put it in me..I did this to him and now he must pay for it. Just not fair not fair at all.. MACCOY I AM SO SORRY SWEET BABY..
So now we plan,pack,prepare and wait.. And hope that he can stay healthy til surgery day ( i think i am secretly wishing that he gets sick so we don't have to go through with it, but on the other hand it would sure be nice to get it done/fixed/mended/repaired whatever u want to call it)

Thursday, March 25, 2010

IMMANUEL Updated 3-26-10

Immanuel and Maccoy 3-24-10! Our SWEET Heart BABIES!! They are So CUTE!!

Thinking of Immanuel right now as he undergoes Open Heart Surgery to REPAIR Tetralogy of Fallot at Children's Mercy.. They took him away from his parents at 8:15 a.m. surgery is expected to last 3 to 6 hours I believe is what they were told! I have talked to his mommy this a.m. and she is holding up well staying Strong!! I am thinking of her, Immanuel and his whole family every min.!! I can't wait until Kendra calls and tells me that Immanuel is REPAIRED!!
We got a chance to meet face to face yesterday and Maccoy and Immanuel seemed very interested in each other! Our hope is that sometime this summer we can get together and PLAY!

4p.m. Just talked to Kendra and Immanuel is out of surgery and in the PICU (pediactric intensive care unit) and he is doing well!! They didn't have to cut over his valve which is GREAT News most of his stenosis was in the ventricle!! All family has been allowed back to visit and give love and kisses to the little man!! What a strong brave baby he is!! So Happy that he is doing so well!!!

I got to go in and visit Immanuel today! We had our Consult appt. with Dr.OBrien the surgeon who is doing Maccoy's repair(that also did Immanuel's) at 9a.m. this a.m. so we went to visit Immanuel and tell
He looked great and had even given his mommy a great Bday present by opening his eyes to look at her!! All is going well!! Way to Go Immanuel keep up the good work!!

Wednesday, March 17, 2010

And the AWARD Goes to......

Yep I got an award only it's not really the kind that I want to brag about! It's the Most Horrible Mother award :( Last night at about 9:40p.m. I let my 8.5mth old fall off of my bed ( and lets just say you need steps to get into our bed its about 5ft tall) .. After a quick assessment of him Clint and I both decided that he needed to be looked at we felt that his Right Leg maybe broken.. I don't have time to get into the details but after a trip in a ambulance and a few xray's it was determined by a kind Orthopedic Surgeon that indeed my sweetbabies femur bone is fractured. So after many doses of pain meds (heartbreaking to see my baby hurting so bad) and a cast he is home and resting as comfortable as he can.. More to come along w/ some sad pictures of the little guy...

Tuesday, March 9, 2010

Cayne and Maccoy 8months old!! Holly Cow!

Well the babies turned 8months old on the 4th! I can't believe it! They are the sweetest babies. I just love their smiles they melt my heart! I love to pinch their chubby cheeks, snuggle with them at night and smell their sweet little heads!
2 weeks ago when they were weighed Maccoy was 18lbs8oz and Cayne was 19lbs 6oz.. Cayne is crawling now it is an army crawl but he can get where he wants to go fast! He does get up on all fours and he can crawl backwards but hasn't mastered forwards yet! He has his 2 bottom teeth, loves to say DaDa, and loves to pinch and pull hair!! Maccoy is starting to army crawl as well, but hasn't really mastered it yet, he would rather get where he wants by rolling and he makes it wherever he wants to!! He has his bottom 2 teeth as well and loves to pinch,pull hair, and babble! They can both sit up unsupported for awhile. They love to interact with each other sometimes it's nice like handholding and sometimes its mean like ear pulling! They are very aware of everything that is going on around them they love to watch their siblings jump around and be silly! They also love to watch the TV sometimes! They have the cutest laughs. Cayne is a little easier to get to smile and laugh than Maccoy who you have to work to get it out of him! They love to take walks in their strollers, they are wonderful car riders, they are still in their infant seats (getting our money's worth), they continue to like to take turns in the jumperoo. They go through about 6 diapers each/day. They are still nursing only and getting a bowl of oatmeal with a fruit mixed in at night before bed. They have had some table foods like greenbeans and carrots oh and mashed potatoes! They have tried the puffs out and Cayne is a fan but Maccoy mostly just chokes on them and makes a funny face! They love to be read to and sang to and danced with! Maccoy absolutely loves bath time now that he just lays in the big bathtub with Cayne he rolls over onto his belly and flops around like a fish and splashes and has a great time!! Cayne can sleep through the night, but lately has been getting up around 2a.m. Maccoy doesn't sleep through the night he usually gets up once eats and goes back to bed snuggled up by Clint or I. So needless to say I am tired! I haven't had a full nights sleep in over 8months. YUCK! But I will miss it when its over! So I continue to let them get up whenever they want!! I love to cuddle with them! Overall we are all doing well!


Mallory got student of the month!! We are so PROUD of her!! She is an awesome student and a wonderful little girl! We couldn't ask for a better daughter!! It is a surprise to the kids so they call the parent and tell you that your child has been chosen and the date of the award but your not allowed to tell your child!! I love surprises!! We got the call in early Feb. from her teacher! So the night before I asked her what was going on at school the next day and she said "in the afternoon we have the assembly for student of the month, man Mom I wish I could get it, do you think if I was the school would call you?" I responded yep I am sure they would! So the next day at 2:30p.m. I packed up the 4 youngest boys and off to school we went to surprise her we meet Clint there and man was she Shocked and so excited! She was beaming!! It was so fun!!

This past Friday night Clint decided that it was time for Daddy/Daughter Date night.. Mallory was so excited to get some one on one time with her Daddy! She curled her hair with curlers, put on her Best Outfit (appropriate for bowling ;) and a little lip gloss and we met Daddy at his work and off they went for their night out on the town! Boy did they have fun!! They went to eat at the Cheesecake factory, then ice skating and then cosmic bowling and the didn't get home til 12:30a.m.! She loved every minute of it and so did her Daddy!! She is already planing their next date!!

Monday, March 8, 2010


I have been trying to post my thoughts,feelings and recent happenings about Maccoy's surgery but every time I begin I start to cry and then my mind begins to go down paths I don't want to think about..... Maccoy is scheduled for his open heart surgery on April 14th, his pre op appt. is April 13th and our consult with Dr.OBrein the surgeon is on March 26th.. Every time I repeat this information out loud my stomach does flip/flops and I feel like I could vomit..(here come the tears but I am going to push through).. I have had many breakdowns over the last 8months, mostly its just the ANGER that I feel towards the whole situation, I cry,sometimes I scream, I ask why my baby, what did I do... Oh My God the ANGER there is so much of it I could just hit the wall over and over again and scream throw a tantrum like a 2 year old.. Then there is the part of me that is so scared of that day and the following days of the unknown so scared like I have had a nightmare x 20. I look at this beautiful chubby happy baby and think there has to be a mistake? How can there be something wrong with his heart? He looks perfect and he acts perfect.. Are you sure they are hearing things right reading those echo's right? He is fine, he is fine.. To anyone that would see him he is fine, but to us he is sick.. The last few weeks his O2 Sats have started dropping before he ran like a normal kid 97-100%, within the last few weeks they have dropped to 93-95% which is still safe, we have noticed some blueness around his mouth,his hands and feet and he just seems to be very pale, he doesn't have the strength that Cayne has and seems to tire more easily. So I called Pam our nurse practitioner in Cardio and told her and she said "Melissa we know he needs to be repaired your going to see his 02 dropping and the blueness it's time we get him fixed lets move up surgery", but since Maccoy just got off antibiotics a few weeks ago he can't have surgery for at least 4 weeks so that put us to April 5th and while it was a week earlier we already have childcare planed for the other kids and Clint has work taken off ( a lot of planing goes into being away for 2 weeks when you have 6 other kids to worry about)so as long as it is safe for Maccoy we are continuing with the April 14th date... I wake up every morning dreading, and wondering how will I ever hand my baby over to that nurse for her to take him from me and to go have his beautiful perfect soft/smooth baby chest cut open and work on his tiny little heart??? How??? How does a mother or father do that and be strong for their child? I melted down when Maxton had his hernia repair, or Cater his tonsils taken out and Mallory her tubes in her ears for crying out loud but this is a MAJOR life altering surgery.. Am I that STRONG?? I know Maccoy is a fighter and he has to be strong to deal with all this. And while we don't go to church every Sunday I do believe in God and I do believe or I have to believe that God will take care of my baby....
We got the packet of information from the hospital a few weeks ago and I opened it and read a few things and then I put it back in the envelope because it made it all to real and I couldn't handle it... A few days later I got brave and I opened it and read it all of course I had a meltdown but what good/caring/loving parent wouldn't reading things like complications, breathing tubes, hear lung bypass?? The main thing we have to worry about in the next few weeks is keeping Maccoy healthy. Any illness within the next 4 weeks pushes back surgery for him and with his "numbers" the way they are that really isn't a good thing.. I don't know how many times we have asked but we are asking again IF WE ARE GOING TO BE SPENDING TIME WITH YOU PLEASE LET US KNOW IF ANYONE IN YOUR FAMILY HAS BEEN IN SICK WITHIN THE LAST 7 DAYS THIS INCLUDES FEVER,VOMITING,DIARRHEA,COUGH AND RUNNY NOSE. Thank You!
the other thing we have to wonder/worry about is Cayne. Of course this will be hard on him, this is his Best Friend the one he has been right next to for the past 16+months, his playmate, the one who's ears he pulls (LOL) , they say that twin bond is amazing so I guess we will get to see that in action. Also the fact is Cayne and Maccoy are spoiled they are my last babies and I have spoiled them rotten along with everyone else in this house.. They will NOT take bottles, the love to sleep with Clint and I , I even lay down with them at night to put them to sleep. I know I shouldn't but I do and I LOVE every minute of it! With that being said Cayne will have to be with us 24/7 so that he can nurse so after contacting the social worker at Children's Mercy I have found out that they are very accommodating to the twin in fact Cayne can be with me 24/7 he is what they refer to as an "extension of me" so even though nobody under 16 is aloud in the Intensive Care Unit Cayne will be able to be there with Clint and I and his brother, he will also be able to sleep at the hospital in Maccoy's room when he moves to the "regular" floor. It sounds like everything concerning Cayne is going to work out well. My girlfriends being the WONDERFUL ladies they are have offered to come to the hospital while Maccoy is in ICU to take turns caring for Cayne so that Clint and I can focus on Maccoy! And my AMAZING mother in law will be holding down the fort here at home making sure the kids are taken care of and that is a huge job in itself. We are so lucky to have such Great/Loving/Supportive Friends and Family. We wouldn't be able to get through this without those of you who understand how SERIOUS and SCARY this is! Thank You!