I probably shouldn't blog right now as I am feeling ridiculously overwhelmed, discouraged, stressed, weepy. I'm a mess. A week ago today while my sister and her family were visiting I saw specks of blood in M's diaper. I took pics and sent them out to his various experts. Consensus was to keep watch but as long as he looks good - eating well, happy, gaining weight, good oxygen levels and pulse then we do nothing. I have been off dairy since 36 weeks pregnant b/c these heart babies can have gut issues too and milk protein allergy is usually the prime suspect. So I cut it out long ago to eliminate that possibility. Over the holidays I wasn't as diligent and didn't forgo every cookie and holiday side dish because it could have a little milk in it. So I buckled down again and cut everything out - no chocolate, breads, anything with casein, soy, wheat.... He had diarrhea and was pooping almost every hour. We had a pretty bloody one New Years Eve morning - and felt he needed to be seen by a gastroenterologist. we brought him to Pensacola - so much for our appt free week:( Milk protein allergy is the doc's best guess but he wasn't Very concerned. The blood dwindled to almost nothing and he seemed to get better.Then last night before bed a few flecks - oh no- then at 4 am a blood drenched diaper. 95%blood. I texted it to my husband who was at work and he came home. Macsen seems fine though and after that horrible diaper and one 1/2 as bad an hour later there were no more bloody diapers all day. The team has been consulted with no consensus this time. CHOP team feels as long as this is his only symptom and everything else looks good then we just stay the course - keep on with the current meds (lasix, Prilosec, Zantac and baby aspirin 3x/wk) and unless his sats tank, pulse rate changes, color changes or he stops eating/gaining don't think I should worry. His local card wants me to stop the aspirin until Monday - I agree b/c the super bloody diapers were always in the 8-12 hrs following his aspirin.) the GI doc wants me to stop with the breastmilk and put him on special formula which after all the months of diet restrictions and round the clock pumping you would think I would be ecstatic to hear that - but no, I am heartbroken. I don't want to believe that we will never nurse again (we were going to really try again after his next surgery when we no longer have to track every ounce and only give him hind milk.) I won't be able to comfort him in that way ever? I can't believe after all these months with normal baby poo now suddenly he would be intolerant to my milk. He has no other symptoms of an allergy.
This week our oldest got the flu - probably picked it up at the hospital when we went to the GI doc. Throwing up, fever, chills,shakes... Thank God Aaron was home because as hard as it was on her it could easily kill Macsen. So there she is shaking, crying, feverish and my first thought is to hold her - comfort her- and as I reach out my arms I hear her brother cry and know if I hold her now I will need to shower and change before I can hold him. I tell her i can't hold her now and her little face crumbles and my already beaten up heart breaks in 2 and I feel like the very worst mother in the world. Over and over in my head I hear our nurse tell me "you are his first line of defense" and I feel like I can't miss anything or he will die - are his hands colder today? Does his nose look more purple? Is he breathing faster? Did he just stop breathing? Why isn't he eating as much? Is he peeing enough? Why did he lose weight? I am going crazy with worry about every little thing with Macsen and my girls are being raised by Disney Movies and whatever looks interesting on Netflix Kids. :(
He is now sleeping soundly on my pillow- beside the 2 (TWO!!!) sleep positioners that didn't position him to sleep tonight.
Tomorrow we go in for blood tests and just get reassurance that he really is ok. That is so important - I feel so sad, and lost... I barely sleep with the round the clock feedings and bouncing and walking and pumping and washing and feeding again. And in the morning our 2nd appt of the week when we weren't supposed to have any.
Oh, Alex. I hate all of this for you. Macsen is so lucky to have you and Aaron as his parents. I wish there was something I could do to help. I will keep praying for M and his doctors and especially for you.
ReplyDeleteI am pryaing for you, Aaron and Mascen.. I hate that your put through this, Mascen is luck to have parents like you two.. I will keep praying for you and family and my heart goes out to you. If you need anything, just to talk or anything please let me know Meghan
ReplyDeleteHang in there kiddo - I (and all the prayer warriors I continue to recruit) continue to pray for him and all of you every day. M. chose very well when he picked his family, and even if you feel a bit overwhelmed right now, I know you'll pull through with flying colors. Lots of love to you, Aaron, Carys, Kismet and Macsen. Martha.
ReplyDeleteOur son doesn't have the same defect but I understand all your emotions you're going through. We have to go back to Mott's at the beginning of February for another procedure (he'll be 4 months old at the time) and we're trying our hardest to keep him healthy and isolated during this cold/flu season. It's so stressful looking and watching for any signs of heart failure. Is he eating enough? Is he sleeping too much? Why is he fussy, is it his heart? It's hard. And it's so hard when you have other kids as well. My 3 year old got sick and I just wanted to sit and hold him and comfort him but it's just not possible. I'll say a prayer for Macsen and the rest of you guys. Hang in there!
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