Saturday, April 23, 2005

Day 13 - Back to Normal Rhythm

The digoxin worked. Yesterday his heart just went back to normal rhythm and speed. The cardiologist said he will stay on the digoxin for the next 6 months and we will be bringing him in regularly to have his heart checked. We also have to go through CPR and learn to use a stethescope to check his heart rate. They still don't know what caused it, and the cardiologist strongly indicated that it wasn't the deep line although I still have my doubts.

Then we were able to go back to starting him on breast milk. The problem with feedings in the hospital are that they are done every three hours when I've always believed in feedings on demand. Of course our little guy hasn't eaten in weeks so he can't demand. But it's hard to feed a baby at exactly 3pm when he's asleep. When I try to feed him, he screams. He doesn't have a strong sucking reflex, but mostly I think he's just not used to having liquid come out when he sucks. And, my opinion is that he's also tired from all the heart activity and has memories of feedings being painful back from his first days of life. After a lot of work and screaming, he'd eventually choke down 5cc's or the equivalent of a teaspoonful, then fall asleep again. Feedings are the only times he screams, and he really lets loose with it. Everyone looks over like I'm torturing him. He has no idea that feedings are supposed to be soothing times.

Yesterday Matt got to change the colostomy for the first time. I tried to help, but really Matt did everything. Before Jack can be discharged I will have to demonstrate that I can do it. It's especially important since he'll be home with me everyday.

Today Janie and I are hanging out together. A guy came by my house and offerred to pull the weeds for $20. Usually I would not even answer the door for some strange man I don't know. Yet, I'm not myself and far less afraid of things. Instead I accepted his offer and now I have a weed-free front yard for very little money. It will surprise Matt when he comes home. I don't think he'll even imagine that I did it, so he may be confused how it got done.

I could write more and have more to say on many things about all this, but I've got to get to playing. Janie is wearing her dress-up wedding dress and holding her baby ducky wrapped up in one of Jack's blankets. It's so easy to have her ducky play baby when we have so much baby stuff in the house not being used. Maybe we'll make cookies today.

(Wrin - You did a great job translating my vague understanding into the exact stuff the cardiologist said. Thanks!)


Anonymous Anonymous said...

Thinking of you Pazel.

1:00 PM  
Anonymous Wrin said...

My thanks to you, Pazel.

It's very nice to feel like you can help, even when you really can't.

(You actually helped me know what I was talking about; I was on rotation in the NICU at this particular cardiac-hospital, where we admitted a kid with query-bowel-obstruction, and my preceptor was asking me questions about what many things could manifest as bowel obstruction, whereupon I whipped out the HD assessment. He smiled; I'd never heard about it until after I'd read your post! So thank YOU!)

1:11 PM  
Anonymous Anonymous said...

I can't pretend to understand where you are, but when my now seven month old son was born he was in the Special Care nursery for a week because he come early and was too sleepy to feed correctly. I spent alot of time waking him to feed, him crying because he'd rather sleep and me upset beyond words. The bright side of it, though, is that he did learn to feed, and did become entirely breastfed, and now is happy about it. While there are obviously other factors going on for you and Jack, his lack of appreciation of breastfeeding sounds very much like John, and I thought it might give you some small grain of comfort to know that it can straighten out to a point that the baby is happy breastfeeding. Don't worry about the schedule to demand transition- unless there is something different due to the HD, I'd bet that as he gains knowledge and ability to feed you will be able to move over to demand feeding. The schedule is just until he knows that he needs to eat. It took us around three weeks to make the transition. You are amazingly brave and a wonderful mother.


1:12 PM  
Anonymous lisa said...

Glad to hear Jack's heart is behaving normally. SVT runs in my family, though it doesn't appear until the teen years. Usually it's not life-threatening and is easily managed by digoxin.

When my son was in the NICU, the nurses did keep the babies on a 3 hour schedule, but if a baby got hungry before the next feed they'd prepare a bottle.

I couldn't breastfeed at all for the first 5 days, but my son took to it like a pro from the beginning. He still got bottles reguarly for the first month, and never had any problems going back and forth. Hopefully when Jack feels a little better, he'll do just as well.

2:18 PM  
Anonymous Anonymous said...

Babies that are on medications for their heart are notorious for being fussy eaters. Typically, it gets better with time. Glad to hear the med. is working.


3:42 PM  
Blogger Erin said...

As a woman who is pregnant with her second baby, I just keep asking myself, how can this happen? How can a perfectly beautiful healthy baby have so many problems? I am so sorry that Jack is having this tough time, and I know that it doesn't help. We don't want people to be sorry for our babies, because that means something is wrong.
I can't believe that you are still going to school. I went to school through my entire first pregnancy and I knew I didn't have the strength or will to do that again. You are a very strong woman.

7:08 PM  
Anonymous Julianna said...

That is fantastic news about the meds working.

Thinking of you.

7:16 PM  
Anonymous terri c said...

I second what Marla says, I do know dig can cause some tummy upset, esp. in the first days. You are doing phenomenally. Keep on keeping on and kiss Jack for us.

6:55 AM  
Anonymous Menita said...

So good to hear about Jack's heart behaving itself. You are doing so well, Pazel, your strength and willpower are impressive. Thinking of you every day, my friend.

8:52 AM  
Blogger The Lioness said...

Very good news, Pazel. I hope knowing CPR, especially as a parent, will make you feel more secure, even if the reasons behind it are bad ones. You never know, and knowing what to do at the right time when it can save a klife, any life, is a momentous thing.

9:46 AM  
Anonymous Anonymous said...

I've been checking in, and though I haven't had time to post, please know you are all in my thoughts. So glad to hear the med is working. I hope it is only "two steps forward" from this point on.

7:28 PM  
Anonymous j said...

So glad to hear Jack's heart is behaving normally again on the digoxin. Sorry about the feedings issues. My girls were in the NICU for 5 and 6 weeks, because they were born 9 weeks early. I also was amazed that the NICU kept to this strict 3 hour feeding schedule, but it really seemed to work. Now, for preemies like mine, I think they spend so much time sleeping, that the 3-hour schedule just works. I decided to stick to it when they came home from the hospital, it seemed so easy. It lasted about a day, and then they figured out that crying got them food, and the 3-hour schedule was out the window, and we were back to demand feeding.

I think when a baby has had all the trauma that Jack has had, it is to be expected that there will some eating issues. But I'm sure he will work them out. Try and be patient, as frustrating as it is. Keep the good news coming.

7:13 AM  
Blogger Floyd said...

Happy to hear Jack's heart is better.

Thinking of you.

7:36 AM  
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