My Sweet Baby Boy,
I just want to run away far away and pretend like you are not sick, but would that change anything. I am mad at the world lashing out on anyone who gets in my way. I pray to the Lord everyday to help me understand and give me the strength to be strong for you. I could spend hours just starring at you and watching you sleep I don't mind holding you 24/7 like I do you are my baby the baby I wished for. No matter how many kids I have I knew I wanted to have just one more I didn't care what anyone thought. I prayed and prayed for you and wished on shooting stars. It took 2 years and then I found out you were growing inside me. I was so excited so excited in fact I took 3 tests and sent every picture to daddy while he was at work. I did everything right took extra special care of myself mommy was very sick while you were growing inside of me. Some days I would just sit and cry over how much I loved you and how you were special and meant to be here. At this time I had no idea just how special God had made you. I think Daddy thought I was loosing my marbles LOL. I couldn't explain it and even if I could I don't think anyone would of understood the love I felt while you were growing inside of me.
That morning you were born the whole world stopped everyone in the room disappeared in my mind. You barely even cried you were so beautiful and sweet and the way you looked at me it was if we had met before in some other time. Daddy was so in love with you too and so were you big brothers and big sister. On the day we got that shocking news I was devastated and terrified to loose you. I went over for days asking God why, why God , why my baby , why me? It took about a week and then it came to me a voice said. I was chosen to be your mommy to love you every second of the day with everything I had. To be the best mother I have ever been in all my years of being a mommy. That I could do this and I must look very deep within my self to find the strength to get us all through this. That I must turn to faith and seek out the Lord in your journey. the more I pray and attend worship the more your journey all makes sense. I've learned just how selfish I have been in the past and how there is a bigger picture in life.
Your surgery is 11 days away to say I'm not afraid would be a lie. I know your doctor can fix you that is not my fear. I have an uneasy feeling when I think of your recovery. I know I need to be strong for you and not underestimate just how strong you are. So today I'm saying and believing you are strong, you are my son and I can tell you will fight with everything that you have. I will not cry while I hold you because I refuse for you to feel my weakness or think I don't believe in you. I pray you feel all the love I have for you and wouldn't change that you are my Son for all the riches in the world. I can't wait to hear your laugh see you sit up and crawl to take your first steps and go to your first day of kindergarten to hit your first home run. Every month that passes I am blessed that you picked me to be your mommy. Just as I whispered in your ear the day you were born
"I love you as high as the sky and as deep as the oceans that never end."
I love you Cole Anthony.
Love Always,
Mommy
Monday, June 24, 2013
Monday, June 17, 2013
We Have A Surgery Date
Well we have a surgery date July 5th at Seattle Children's . I couldn't be happier or more afraid for my Cole. Our surgeon is Dr. Permut and what I've researched he is amazing. I should have an appointment to meet with him sometime this week. Cole is now 7 lbs 8 oz !!!! Wooohoooo we've made the goal weight now anything else he gains is an added bonus.
My mom is here from California spending time with Cole and helping us out. What a huge blessing it has been having her here. My in laws will be up sometime next week to meet and spend time with Cole and to take the other children to back to California with them while the surgery happens. I am sleeping a little more and Cole sleeps more through the night uninterrupted. I do let him sneak in my bed every so often I have to get my snuggle times in with his as much as I can.
I have so many fears going on in my head and just need to trust that this is all in the Lords hands. We have another cardiology appointment on June 24th and will find out about the pre-op appointment at that time.
My mom is here from California spending time with Cole and helping us out. What a huge blessing it has been having her here. My in laws will be up sometime next week to meet and spend time with Cole and to take the other children to back to California with them while the surgery happens. I am sleeping a little more and Cole sleeps more through the night uninterrupted. I do let him sneak in my bed every so often I have to get my snuggle times in with his as much as I can.
I have so many fears going on in my head and just need to trust that this is all in the Lords hands. We have another cardiology appointment on June 24th and will find out about the pre-op appointment at that time.
" I will be with you. I will not leave you, nor forsake you." ~Joshua 1:5
Sunday, June 9, 2013
23 Days Old
I can't belieive my baby boy is already 23 days old. He is still tiny growing pretty slow, that of course is to be expected. He still eats every 2 hours and is up to 3oz each feeding. The spitting up is getting better and his bm's are happening daily now (TMI sorry). Newborn sizes are all that seem to fit him. Pet peeve why are newborn socks so big for newborns?
Cole is starting to coo and make all those cute noises. He is doing great on the soy so far. Of course soy formula stains and stinks more but I'll take that any day over Cole being in tummy pain and gassy.
I heard from the cardiologist office I can't believe they didn't get to making an appointment to present Coles case to the surgeons. I guess there is only one lady who schedules those and she just so happened to be off when I called on Friday. I'm a little irrated to say the least. Guess I'll be bugging her tomorrow. Our next cardiology appointment is this Friday June 14th they are going to do another echo.
As for some happier news in the Pombo house. Cole has slept in his crib for the past 2 nights yay. I am very excited for this milestone. I mean don't get me wrong I love snuggling my boy but I'm kind of a bed hog, just ask my hubby. I have to be honest I'm still totally freaked to find him not breathing in his crib but I have a monitor to alert me if he quits breathing on it's way. Thanks Grandma Caren for the monitor.
:) next update Friday after our appointment. Thank you everyone for all the prayers.
Cole is starting to coo and make all those cute noises. He is doing great on the soy so far. Of course soy formula stains and stinks more but I'll take that any day over Cole being in tummy pain and gassy.
I heard from the cardiologist office I can't believe they didn't get to making an appointment to present Coles case to the surgeons. I guess there is only one lady who schedules those and she just so happened to be off when I called on Friday. I'm a little irrated to say the least. Guess I'll be bugging her tomorrow. Our next cardiology appointment is this Friday June 14th they are going to do another echo.
As for some happier news in the Pombo house. Cole has slept in his crib for the past 2 nights yay. I am very excited for this milestone. I mean don't get me wrong I love snuggling my boy but I'm kind of a bed hog, just ask my hubby. I have to be honest I'm still totally freaked to find him not breathing in his crib but I have a monitor to alert me if he quits breathing on it's way. Thanks Grandma Caren for the monitor.
:) next update Friday after our appointment. Thank you everyone for all the prayers.
Wednesday, June 5, 2013
First Cardiology Appointment
On Tuesday June 4th we met with Cole's cardiologist Dr Krabill for the first time from Northwest Congenital Heart Care. We went to their Issaquah location located at Swedish Hospital. The appointment lasted almost 3 in a half hours. They weighed Cole, measured him, checked his oxygen level, did an EKG and an hour long Echo. Good news 2 weeks ago Cole was 6 lbs 4.8 oz yesterday he weighed 6 lbs 12 oz so YAY he is gaining weight. He isn't gaining fast enough in the doctors eyes but my little tough dude is gaining that is all that matters to me.
A part of me was praying that during the Echo they would tell me they were wrong and Cole didn't have a heart defect and the first diagnosis Dr. Park had given was wrong. Although that didn't happen they did confirm that Cole still only had 2 defects TAPVR & ASD I am thankful the Echo didn't show anything new. Dr Krabill let me know she would like to have the surgery done no later than 2 months of age that would make the surgery date sometime mid July. She also would like to get him up to 7 -7 1/2 pounds as 10 pounds just wouldn't be feasible at the rate he is growing as of now.
He was such a good boy for the appointment and slept for most of it. I shared my concerns with the Dr and she comforted me by telling me that what I am feeling is normal. I am still angry with the world I'm trying so hard not to be angry. Cole's medical case will be presented to the Doctors at Seattle Children's Monday and Tuesday of next week at that time 3 surgeons will choose to take Cole's case and will pick a date and time for the surgery. I will find out the surgeons names and the date of the surgery on June 13th. Cole will have to see his cardiologist weekly till surgery.
Cole has an appointment with his regular pediatrician tomorrow because he is now failing to have BM's they are happening once every other day. I will update again tomorrow when I know more of what the doctor is saying about this new problem.
A part of me was praying that during the Echo they would tell me they were wrong and Cole didn't have a heart defect and the first diagnosis Dr. Park had given was wrong. Although that didn't happen they did confirm that Cole still only had 2 defects TAPVR & ASD I am thankful the Echo didn't show anything new. Dr Krabill let me know she would like to have the surgery done no later than 2 months of age that would make the surgery date sometime mid July. She also would like to get him up to 7 -7 1/2 pounds as 10 pounds just wouldn't be feasible at the rate he is growing as of now.
He was such a good boy for the appointment and slept for most of it. I shared my concerns with the Dr and she comforted me by telling me that what I am feeling is normal. I am still angry with the world I'm trying so hard not to be angry. Cole's medical case will be presented to the Doctors at Seattle Children's Monday and Tuesday of next week at that time 3 surgeons will choose to take Cole's case and will pick a date and time for the surgery. I will find out the surgeons names and the date of the surgery on June 13th. Cole will have to see his cardiologist weekly till surgery.
Cole has an appointment with his regular pediatrician tomorrow because he is now failing to have BM's they are happening once every other day. I will update again tomorrow when I know more of what the doctor is saying about this new problem.
June 6th
So Cole had an appointment to see his pediatrician to determine his BM problem. Looks like he just has a lactose intolerance problem and possibly acid reflux We are now on the Soy looks like I see a difference still to early to tell though.
Monday, June 3, 2013
Calm before the storm
The calm before the storm is what I'm calling today. As of today I know of one heart defect Cole has and I pray that tomorrow no more defects are found during his echocardiogram. Today we only know of the plan let him gain 10 pounds then doctors can operate. Tomorrow everything changes, more plans will be in effect, why does that scare me so bad??? I mean the doctors will give us a date to be able to fix him. I am happy they will fix Cole but I'm just terrified to have the surgery and to lose him. I know this is God's plan and everything happens for a reason. I just wish life had a fast forward. Cole was very fussy today but on a more positive note he was up more today than he has been in the last 2 weeks of his life. I hope our families can meet Cole soon. Being far away from our families are hard right now. I'm thankful for my 16 year old daughter's enthusiasm to help with Cole. My 5 and 3 year old sons they have been so good and understanding these last few weeks. Tonight I sat by their bedside as they slept they looked so peaceful. I said a prayer over them and thanked the lord for my children I love them all so much. Tomorrow I will know more thank you to everyone for all their prayers.
Saturday, June 1, 2013
6/1/13 update
Total Anomalous Pulmonary Venous Return Total Anomalous Pulmonary Venous Return Total Anomalous Pulmonary Venous Return I HATE THAT WORD
As I look at my son he looks fine to me. It's what I can't see that is the problem that's whats killing me. Knowing that my son will have his chest opened up and his life will be in the hands of doctors. I know medicine has come along way and technology saves lives everyday, but this is my baby my tiny baby. UGHHH I want to scream.
Tuesday is the first cardiologist appointment and Tuesday can't come fast enough. I have so many concerns and questions to ask the doctor's. I'm still watching Cole sleep and breath and sleep is what he does a lot. I'm still terrified he will pass in his sleep. The Doctor said that won't happen but how does he know for sure. Cole looks like he really struggles to breathe at times and that scares me more than I can explain,
He looks like he is gaining weight which is a great thing but also scary because the faster he gains the sooner the OHS is. Cole eats every 2 hours about 2 ounces. He loves me a lot Dylan teases me that Cole only wants Mommy. I'm not sure if that is true but as the days pass our bond grows stronger. Cole is a fighter he will get through this he is tough I keep telling myself.
As I look at my son he looks fine to me. It's what I can't see that is the problem that's whats killing me. Knowing that my son will have his chest opened up and his life will be in the hands of doctors. I know medicine has come along way and technology saves lives everyday, but this is my baby my tiny baby. UGHHH I want to scream.
Tuesday is the first cardiologist appointment and Tuesday can't come fast enough. I have so many concerns and questions to ask the doctor's. I'm still watching Cole sleep and breath and sleep is what he does a lot. I'm still terrified he will pass in his sleep. The Doctor said that won't happen but how does he know for sure. Cole looks like he really struggles to breathe at times and that scares me more than I can explain,
He looks like he is gaining weight which is a great thing but also scary because the faster he gains the sooner the OHS is. Cole eats every 2 hours about 2 ounces. He loves me a lot Dylan teases me that Cole only wants Mommy. I'm not sure if that is true but as the days pass our bond grows stronger. Cole is a fighter he will get through this he is tough I keep telling myself.
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