We had a Pediatrician appointment yesterday (that I called and scheduled due to Mason gagging constantly) and a Cardiology appointment which was already scheduled.
Mason has lost a tiny bit of weight. The office is trying desperately to get us into a consultation with an OT, but the OT office has not been returning their calls. Boooo.
The Pediatrician said that the gagging and coughing are from Mason's newly-acquired reflux. We kind of got side-tracked so I didn't get a chance to ask about the prescription some of you have mentioned (Acix or something like that?) but for now we're still on the Prevacid tablets. Mason's lungs and ears are clear. Honestly, we don't think he has ever caught the cold that Todd, Carter, and myself have. Breast milk is amazing.
The nurse at the Pedi checked Mason's O2 level. I was standing at Mason's head while she had the Pulse ox at Mason's foot. When the O2 sat popped up, I thought it said 46. I told the nurse, "Um, you need to call an ambulance." She looked confused and then she showed me that the number was 96... hee hee., whoops.
Next, I walked next door to Cardiology. The nurse I adore there came to the waiting room and gave me a big ol hug. She was the last person we had seen before getting hauled off to an ambulance. We did the usual weight check, BP, and echo. Everything looks great. The Cardi did not seem concerned with Mason's weight. He feels it is all related to the reflux.
I told him how hard it is feeding Mason. He only takes a few sips at a time so I feel like I spend 20 out of 24 hours of the day feeding Mason his bottle. That's part of the reason we've had so little success using alternative methods of feeding other than bottles.
The plan for Mason: We'll continue monthly Cardiology appointments to keep a check on the BT Shunt that was put in. When Mason's O2 levels start dropping (meaning he is outgrowing the shunt) we will head back to Charleston for (hopefully) a full repair. The shunt should stay "good" for 9 months or so, putting Mason at having surgery at a year old. However, I've learned what a game of surprises CHD's are, so we'll just anxiously play each month's cardiology appointment by ear.
The second thing we discussed was the placement of Mason's heart. Mason's heart is actually below the sternum. You can see nearly every detail of it through Mason's skin when he's laying on his back. There's no way to move the heart, but they are hoping the sternum will grow over the heart as Mason grows. If it doesn't, he will not be able to ever get hit in his chest. "No contact sports" is what Dr. L told me. However, as a mom, my mind begins wandering to kindergarten and beyond. How do you keep kids, especially little boys from rough housing? I can't go to school with Mason and kick/shove every child that tries to get near him, throw a pillow, wrestle, etc. It's a world of what-if's and worries that is too early to venture into. I just pray that Mason's heart gets covered by the sternum as he grows.
I love and adore our Pedi, Dr. M, but I feel like all our focus turned to Mason's heart yesterday and (we both) kind of forgot about the reflux. Honestly, Mason is not in tons of pain. He rarely spits up (I think this is called silent reflux). He just gags constantly and does not feed well. He's a tad more fussy at night between 8-10. He will be asleep in our arms and just scream out every few minutes.
He sleeps with very little issues on his back, or sometimes he rolls to his side, in bed with us. He just wakes to feed several times per night. Luckily, breast fed babies rarely have severe reflux to do how quickly breast milk is digested compared to formula.
That being said, the pumping and giving bottles is the worst thing I've ever done. Don't get me wrong, I'll do it for as long as I need to. My goal is to have Mason strictly on breast milk through his next surgery. If he's 18 months old for surgery, then so be it. It's just nearly impossible to keep a pumping schedule with two young kids. It's nearly impossible while Todd is still home. There's been a few times I've pumped by myself with the boys and Mason (who I had on a boppy next to me) screamed the whole time while Carter (who knows I'm connected to the pump) got into everything in the world he shouldn't. The whole process of pumping, measuring the milk into bottles, rinsing the pump parts, putting the bottles in the fridge, washing used bottles, while simultaneously trying to feed a baby who only takes a few sips at a time is.exhausting.
I'm hoping to get an OT appointment, soon. In the meantime, I called the LC who had cancelled our appointment back and told her I want to come in anyway and troubleshoot together. I haven't heard back, yet, but the snow we had here has shut down offices for the entire week. I've also just placed a call to a wonderful IBLC member who is located 2hrs from here. I had emailed her once before and she had called me and spent nearly an hour on the phone with me and lots of knowledge of heart babies as well as success with getting them to the breast. I think Mason and I are going to make the 2hr drive to see her.
Georgia has terrible reflux. She was on prevacid alone at one time then she was switched to just zantac. That did not help either. So when she was in the hospital they put her on zantac and prevacid. The two together seem to help her alot. Just a thought. I don't think Dr. M likes her being on both but they do help.
ReplyDeleteI commented on your Facebook yesterday, but just wanted you to know in case you didn't see it in time, in some areas of the country, speech Pathologists are easier to find that have dealt with feeding problems than OTs. I'm a speech pathologist, and this is my specialty. It might be worth calling your pediatrician and seeing if that is an easier appointment to get.
ReplyDeletePraying hard for Mason!! You are an awesome mama!!!!
iheartamerica
Saying lots of prayers that the feeding stuff can get sorted out. We too have always seen speech/language pathologists for Logan's feeding issues. They also specialize in feeding issues. I would try and find one of them to help if OT is not returning your calls. That is frustrating!!
ReplyDeleteSo sorry about the reflux. Here's another totally random idea that might be pointless: have you tried probiotics? Our son had some reflux/colic issues and I describe it as like labor contractions in the evening. He'd be fine, and then on came a bout of pain, and then he would be fine again, etc. We used BioGaia probiotic drops. They are kind of expensive -- about $35 a month -- and he got five drops a day in his bottle. They help get good stuff growing in the stomach gut and can help with respiratory infections. The doc said even now that the colic is over, it is good to stay on the drops for that reason. We don't anymore because he eats yogurt now. But we did last winter to get him through cold season. He was also getting breastmilk, which has so many immunities in it, but we still found the probiotics helpful.
ReplyDeleteI am sorry the pumping is so stressful. I pumped about 20 hours a week while working outside the home, and I remember thinking admiringly of women who pump 40 hours a week. And then especially of women who only pump. It is exhausting. I think it is wonderful that you are hanging in there with it, though, and I so hope M. will get back to breastfeeding soon. I know this costs money, but is there a way to get a second set of pump parts? That way you could pump twice in a row without cleaning up. It would be a one time expense but might help when you are alone. Also can you buy enough bottles to pump into to only have to wash bottles once a day? I know this is money and money is scarce, but it might help make things just a little more sane.
Forgive me if I am offering nane advice! I am just trying to think of ways that pumping could be 10% easier even.
Might I suggest that you keep a handydandy notebook near you so you can write down questions/comments/cncerns so you can go over them with the dr....I know it works for me. Sometimes when you get in the office you tend to focus on the big issue (heart) and everything else falls by the wayside. Then you walk out and think....I forgot to mention this or ask that. I started doing this when we were still in the hospital because we had so many dr's we had to work with and they would say different things...so I started writing down what they said, who said it and any questions I had for the next time. Just a suggestion.
ReplyDeleteShannon Egan
http://www.homeofsafeheart.com/ This is something available to children who play sports and may offer protection for Mason if required as he gets older. It was highly thought of at the last CHD conference I went to in Toronto and was used to protect heart kids playing sports.
ReplyDeleteThinking of you, glad you are being monitored closely as it gives us heart mommas a tiny bit of comfort during these difficult days.
Wendy
I want to second seeing a speech therapist--we've always seen speech therapy for feeding issues....and they're usually easier to get appointments with.
ReplyDeleteOR get a referral to see a Gastrointestinal Specialist. A GI doctor will take a really detailed history and then adjust Mason's tummy meds.
Ask GI doc or pediatrician about Reglan[metoclopramide](http://www.drugs.com/reglan.html) That's the other medicine (besides prevacid) that my daughter is on for reflux - it helps empty your tummy faster. It's pretty common for heart babies to have slow-emptying tummies.
Another thing you could do...
most of us have been to speech/occupational therapy with our kids. Maybe someone has an idea of some speech/occupational therapy that would be helpful to Mason. It's hard to remember...and hard to suggest without seeing him...but if you told us more about his aversions and what he puts in his mouth...when he seems to be gagging (after food or after meds) maybe it will click a similar memory from one of us.
I'd never suggest that for medicines...but therapy is mostly playing and touching. It couldn't hurt to share experiences. You would notice right away if it was helping or not.
-Nanette