Puck has been hit hard by the cold that has been circulating our house despite our best efforts to keep him well. With a head cold his breathing has become laboured once more and I'm terrified it could turn into a lung infection in his fragile state.
Today we are meeting with a new pediatrician so she can assess him and determine what if anything can be done about this new turn of events. I'm trying my best to remain upbeat but it's hard to do when I'm sleep deprived and terrified.
I feel like our lives have been put into stasis. I can't be around my other two kids because of their colds, I don't sleep much because of my worries over Puck, and my anger at the whole situation is becoming nuclear. I just want to break something. I want to scream and yell and blame something or someone. Instead I sit here and write because I dont know any other way to express such horrible emotions.
I feel so helpless. My stomach is so tied up in knots it's hard to choke down food. I eat though. I eat so I can maintain my breast milk, but truthfully I haven't felt hungry since Puck first wound up in the hospital. I wish I could see the future. I wish I knew what was coming and how to prepare. Instead I have to consider every possibility and it's killing me. I find myself taking pictures and videos of him...just in case... And just admitting that makes me cry. A mother shouldnt have to contemplate such possible scenarios. It's not fair.
But this is the hard part of motherhood. The parts you have no control over. The parts that make you break out in cold sweats and make back room deals with any and all parties. It's the desperate prayers and the quiet tears. It's the sobbing I did on my husbands shoulder this morning. It's the love you feel so deep that when it's threatened... cuts you to the soul.
7 comments:
I am glad you have your writing Carrie. With all of what you are going through, it's so important that you express some of these emotions and release what you can. You are doing all you can do and I am so proud of you.
love you
Mom
Be brave Carrie. It's never easy to be in that situation. I remember those very well. Taking the pics and vids just in case.. But look at Abby she was given a 7% chance of life. Now she is nearly 5. Kids are very strong and we as mothers have to be strong for them as well. stay strong and please feel free to call or email me anytime. thinking of you. xo
So sorry to hear all that you've been through during your pregnancies, enduring pPROM and PROM, then Puck's health situation. Saying a prayer for you and Puck.
I understand your feelings and your fears.I know exactly how you feel as I was in your position just over 4 years ago.My son has Pulmonary Artresia with VSD.His first heart surgery was at 36 hours old,his second at 3 months and his 3rd open heart at 9 months.He has many more to go as they have to replace his valve through his life.The Heart Network has Mom's coffee groups if you would like to come sometime.I wish I knew of this network of help when my son was born because I had no one to talk to that could understand my fears.Scott has my number,I emailed it to him last night.If you would like someone to talk to please call me ;)
Thanks so much for everyone's support. And thank you Dana for your email. It made me feel like Puck getting better wasn't impossible, it gave me the hope I desperately needed right now. I think attending the support group will be good in the future, right now though i feel so very overwhelmed with everything. But I would definitely like to continue talking with you and learning about other mom's journeys through congenital heart defects. I feel like im floundering for information. I will email you as soon as my brain works enough to form coherent questions. Thanks again Dana. Truly you have been a life saver.
I am so glad I can help!I know when we were in the hospital and shut everyone out,which is not like me at all!!!I didn't want to explain it,I didn't want to believe it,I didn't want to see anyone,I was sure I was going to wake up from the nightmare I was living.We get together once a month in all different areas in the lower mainland.I totally understand not coming to one right now :) I am not sure as I don't think you are either how large or severe the hole are,but to give you an idea......Pearce has 4 things wrong with his heart.He had a very large VSD,his pulmonary valve was pretty much absent,his pulmonary veins were very narrow,he had an ASD and his heart was very large.
His first surgery was a temporary 4 mm BT shunt they put in by making an incision under his right armpit and collapsing his lung.This was only supposed to carry him till he was around 3 months and he would be big enough to undergo OH (open heart) surgery.From his first surgery to his second I had to go to MSA Hopital to get what they call an insuflon changed once a week,this is a subcutaneous needle that stays in his thigh for one week and twice a day at 8am and 8pm I would have to give him a heprin shot in the insuflon.I would have to wear a head band cuz I would be sweating from fear of doing it wrong and harming him ;( Then at 3 months old we had our OH date,we take him in,the surgeon takes him to the OR and we go to leave but the surgeon comes and stops us and says he is too small and the risk is too high to do the OH and he would like to put another BT shunt in the left side which would hold him till he was between 8 and 12 months.My first questions was "do I still have to give him the heprin shots?" He said no,half a baby asprin a day would be fine.What a relief!!! I believe they like the babes to be 12 lbs before OH surgery.(a very good friend of mines daughter had OH at 3 days old!!she is fine ;)) So,they did the other shunt and we were out of BCCH in 4 days!!Then at about 6 months he started to lose weight so we had to get an ng tube.I would still bottle feed him boosted bm then tube feed the rest(ng fed babys get lazy if they are on it too long and some have to get G tubes,I was not having that for my son if it could be avoided.) At about 8 months he was getting so bad that I couldn't get 3 oz into him without him throwing it back up!He would vomit every time I fed him.So at 9 months he was losing weight again and was not improving at all even with solid foods so we went in for the big OH :( He was in surgery for 6 1/2 hours! They replaced his Pulmonary valve with a vein from a calves neck,they repaired the VSD and they stretched his pulmonary veins.So he had his large VSD for 9 months before it had to be fixed :) Some don't need surgery for years,some never.We were in the hospital for 6 days,that is it!!!I was shocked!But he did take a small turn,his lungs filled with fluid so we were back on lasiks,digoxen and 4 other meds I can't remember the names of!He lost over 1 pound in the first week after surgery!Most of it being fluid though.So,take a deep breath and know you are not alone Carrie & Scott :) don't forget that ;)
I really hope Puck is one of those kids whose holes close over on their own!!! And im breathing easier now that you have told me your story and the stories of others! Thanks again, Dana!
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