Blenderized Diet Disappointment

For the past three weeks, Harlie has not thrown up. It has been a glorious three weeks (well, except for the whole pneumonia/hospitalization thing). Oh, how different my definition of "glorious" is!

Just in case you don't know - Harlie's vomiting has been out of control for a long time. At this time last year - she was throwing up an average of 40 times per day - and her day is only 12 hours long!!! And if you think I'm exaggerating - I'm not. I had to chart it so the docs would believe me. In May of last year she had nissen fundoplication surgery to stop it from happening. We tried everything first - wanting to avoid this surgery. For some reason - I just didn't want her to have to have it. But then I was told that she would have to have it in order for her to have her jaw reconstruction surgery. Since her jaw would be wired shut for 9 weeks post-op, it would not be safe for her to vomit - at all (much less 40+ times). So, nissen surgery it was. And it lasted for just over 9 weeks - weird, huh? Literally, just a few days after getting her wires out, she threw up. And over time, it has continued to get worse - up to 5-10 times per day (still better than 40, but come on!).

So, three weeks ago we tried a different way of feeding her. Oh, we've tried it all - pump, no pump, slow continuous, faster rates, slower rates, more times, less times, more meds, less meds, added some baby foods, and tried every kind of formula made, etc. Somehow, we must have found the right way (no pump, two doses of 100 mls each in a 30 minute time frame). And for some reason - makes no sense to me - she stopped vomiting. Don't ask me. I have no idea. I just go with the flow and ride the waves that come our way!

I have wanted to get Harlie on a blenderized diet for a LONG time. I have heard that many kids with Harlie's vomiting issues have found a "cure" with a blenderized diet. Hey! We want one of those! But making the change over has not been an easy task. We've tried, but there's always been too many other variables in the mix (her being sick, about to have surgery, recovering from surgery, etc.). So, now that she's getting better, and she hasn't vomited in three whole weeks - I thought we should try it again.


Yesterday was the day. We fed her and then crossed our fingers. The first feeding went down okay. And stayed down. YAY! Then her second feeding went down - and then came back up. Several times. Bummer. Real bummer. I'm very disappointed. It seems that it takes longer for her belly to empty the blenderized diet. So, it's a no go.

The reason why I wanted it to work so badly, is because if she could eat by mouth - she would be eating regular food. It just makes sense that even though the food goes in through a tube that it should be age-appropriate. Plus, I really wanted that to be the cure for Harlie, too. But her belly just can't handle it. There. That's it. For now, anyway. I guess we'll meet with her nutritionist at some point about other options.

I try really hard not to complain. I always try to find the positive - to be thankful for what we do have - and we have a lot to be thankful for. I truly believe that. But, sometimes I just wish that something would be "easy". You know, what's normal for most. I'll be fine. I'm just disappointed right now. It's not like I just learned about it and just tried it. I've been wanting to do this for a LONG time. And then to have it not work, well, I'm just bummed.

But Harlie is fine. In fact, she is so much better. She is playful again and it is so wonderful to see her back! Her oxygen requirement is getting less and her secretions are almost back to normal. Things are better and tomorrow I report to her local cardiologist about how she's doing so we can make some sort of decision on her upcoming heart cath. We should know soon so I can go about making plans!

More later,
Christy

We have a date.

So, they called and gave me a date. A date for her third heart surgery - the Fontan. It is April 2nd. Wowzers. It felt so weird to write it in my calendar. I wanted to laugh and cry at the same time. It will be nice to get this behind us, to have Harlie's heart function better and to see some better numbers on her monitor for a change! But, I know what lies ahead and it's not pretty.

We have to go up to DC the day before for her pre-op stuff. Then we will have to stay the night up there and then take her back to the hospital first thing in the morning. I can't help but feel bad that she has NO idea of what's coming. I suppose it is better that way. But, still...

Well, sadly, tomorrow we have our last session with Beth, Harlie's speech therapist. We will certainly miss her and I really hope that we will see her again. Murphy took right to her, too and I know he will miss her, too.

Luckily, for Harlie's feeding therapy we will get the same OT that we had from the beginning, Allison. She used to come to our house for feeding therapy until she moved to the clinic at the Children's Hospital here in Richmond. So, since we are losing Beth, it just worked out great that we can get Allison again. Although now instead of them coming to our house for therapy, we will have to go to the clinic. Budget cuts with the state, blah, blah... So, we go on Friday to see Allison. And we will also get Harlie's blenderized diet recipe. I am really excited about that. I am crossing my fingers that she won't have a reaction to anything in it. Normally, you introduce foods one at a time, but putting a child on a blenderized diet doesn't really allow you that kind of time. So, we're taking a risk, but I think it's a low one.

Beth also did one hour a week working on communication with Harlie. So, we will meet a new person on Monday for our first session of speech therapy. I hope we like her and that Harlie takes to her.

Well, that's it for tonight. I am going to get off the computer so I can relax for a little bit.

Take care,
Christy

Feeling crappy

It's probably no secret that I'm down in the dumps. I can usually pull myself out pretty quickly. But I'm having a harder go of it this time. Sometimes I just wonder if I will have the energy that this coming year will most likely require. For the most part I only look so far ahead - looking too far makes everything too overwhelming. But, trying to figure out which surgery will happen first (when I thought her heart surgery would surely be) is getting me down. Now I have to meet with her plastic surgeon and a new ortho doc in DC to try to get a handle on what needs to happen and when. Then I'll report back to her cardiologist in DC to try and figure out how it's all going to play out. I am very surprised how unsettled I feel about it all. This is when I wish I had someone (like, say, a medical professional?) to help me coordinate and figure all this stuff out. But there isn't such a person. The reality is that there isn't ONE doctor that knows as much about all of her specialty issues as me. Great. More fun for me!

Anyway, Harlie had an upper GI last week to check on her nissen fundoplication. It was awful. Not that it was "painful" for Harlie, but we had to hold her down under the x-ray machine and she hated that. Especially considering she had just gotten her ear tube the day before! They put some barium in her g-tube and then took x-rays to see what happened once it went in. The reason she had it is because she was back to vomiting every day again. They just wanted to see if it was still intact and that it was where it was supposed to be. The radiologist said that all was fine. Didn't know how or why she would be vomiting every day again. Oh well.

HOWEVER, I don't know if you remember, but I've been working towards getting her on a blenderized diet. I've heard so many good things about it and I really wanted to get her on it before we did the nissen (as I've heard that vomiting commonly stops when the child is on it) but there just wasn't time. Anyway, Harlie is now up to getting 3 ounces of applesauce and 3 ounces of green beans, plus 4 cans of formula (which makes a day's supply). And she hasn't vomited in a week! Well, that's not completely true - she vomits if she gags during feeding therapy or if her trach really needs to be suctioned, but those times don't count, if you ask me. So, I'm hopeful that this blenderized diet has some great benefits.

PLUS, we stumbled along another great accomplishment this week... On Monday her feed pump broke. So, called the people about it and they said it would take a while to get someone out. Bummer because that meant we had to feed her manually. So, I broke down her rate into 3 "bolus" feeds over 30 minutes. Her feed rate was 200 mls at a rate of 400 mls per hour. So, it took 30 minutes for her to be fed. Well, the 3 bolus feeds went great. So, after a while, we tried to do it in 2 bolus feeds. That worked great, too! And she wasn't in the least bit bothered by the change. No vomiting, no uncomfortableness! Now, today -she was fed in 1 bolus feed for all her feeds - and she did GREAT! YAY! No more food pump! No more depending on a piece of machinery to feed my child. I just need the right tubing and a syringe and we're good to go! It feels like a little bit more freedom. So, that's all quite exciting.

Last Thursday Harlie got her monthly RSV shot. That's never fun. And while there, Cooper got his well check and some shots, too. At 3.5 months old he weighed 14 pounds, 12 ounces. That puts him in the 50-75th percentile. None of my kids have ever been that high on the chart. I can't help but go and look at how that compares to Harlie. She was 11 months old before she weighed that much. And at his age she weighed just 8 pounds, 1 ounce - not even his birth weight! Crazy.

Well, that's all I have time for tonight.

Take care,
Christy

My Overwhelming Day...read at your own risk.

So, another busy week has flown by. I knew I would be busy with 3 kids, but geez.

Monday was a pretty miserable day for Harlie. Which made it pretty miserable for me, too. I HATE seeing her miserable. It hurts me. What was the problem you ask?

WARNING: The following may contain graphic language and subject matter. I apologize now if I offend you. But, such is life with toddlers…

The day before Thanksgiving we started giving Harlie some baby food mixed in with her formula to begin making the transition to a blenderized diet (a blended concoction of baby foods and other ingredients to make her diet more typical for her age and development). The recipe was 2 small jars of baby food bananas plus 4 cans of her formula. Mix all together and divide into her 5 feedings per day. Great, right?

Well, it wasn’t great. After a few days, she went a day without pooping. VERY unusual for her. Clearly, her body was adjusting to the bananas. Fine, I thought. I’ll give it another day or so. I mean, how much damage could a couple jars of bananas do anyway?

Um, A LOT! By Monday morning, she was MISERABLE. Couldn’t play or do anything. My friend, Jennifer (Harlie’s PICU nurse from MCV) was working with us that morning. She agreed that Harlie was definitely in some pain. Jennifer went in with lubed gloves to check out the situation (thank God for nurses!) and she found that Harlie’s bowel was impacted with poop.

You might remember that Harlie was born with an anoperineal fistula. Basically, her anus wasn’t located where it was supposed to be. The muscles were in the right place, but the opening was not in the middle of those muscles. So, just a few days after she turned one, she had a surgery to help repair that. I say “help” because we aren’t sure if that one surgery did the trick or not. The surgeon said he might need to do another one later, but we’ll have to see how she does. He also said that it will take longer than normal to potty train her (maybe by age 4) because it will take a while for her brain and the muscles around the opening to coordinate and work together. One thing he said for sure is that she should NOT become constipated. She lacks the ability to push it out and it could prove to be dangerous for her. He said at some point – depending on her diet – she will need to take supplements to help her stay regular.

Sure, I heard that. But I just didn’t realize how truly important it was.

Until now.

So, back to Monday…

Jennifer had to leave around noon. And I have to pick Murphy up from school at 12:30. Harlie had physical therapy at 11:30, speech therapy at 12:30 AND we had our annual meeting with the Services Coordinator of the Early Intervention Program (through Henrico County) at noon. So, I had to go and get Murphy early, since I wouldn’t be able to leave at 12:30. Which meant he would be home during all this chaos, when I needed to be focused on the meeting. The meeting was to see what goals she has met and what new goals we need to set for her for the coming year. The goals have to be VERY specific so it can be determined if they were met or not. For example, brushing her teeth. Do we want her to be able to brush her teeth for a minute, or just be better at it or both? My point here is that I really needed to be able to focus on this. Not an easy task with 3 kids – especially when all 3 need you at the exact same time. Which was the case, of course.

Murphy wanted to make his own peanut butter and jelly sandwich (has disaster written all over it) and I was trying to help Harlie poop, and Cooper was crying. Nice. I thought that if I sat Harlie on the potty it might help her push it out. Keep in mind that I’ve never seen her push – with a liquid diet, pushing isn’t required. So, in order to be a part of the meeting at my kitchen table, I brought the potty out there and sat Harlie on it. What a nice scenario, huh? Oh, and at one point I heard Murphy ask, “Mommy, is this sugar”? No, it wasn’t – it was Thick-It, Harlie’s food thickener powder, which is white and does look like sugar. Thank goodness he asked me before he put a scoop in his mouth. It was truly chaotic and splitting myself into 4 different directions just doesn’t work.

After the meeting and her therapies were over I took a deep breath and tried to regain some order in my house. I think it was 3pm before I realized that the only thing I had eaten all day was a banana – at 6am.

Back to Harlie. After no success all day, I started making some phone calls. Again, tried some other things, no success. We had a very serious situation here and I was getting really worried. Nothing could be given through her g-tube that would help – it was too far down and right near the opening, that nothing given “orally” would do any good. Somehow we had to get it out of there. So, I put on some gloves, lubed up and tried to see what I could do. Murphy asked me what I was doing and I told him that I was trying to help Harlie get the poop out. (Lovely toddler-speak.) He thought for a second and then said, “Well, Mommy, you should tie a string around it and pull it out”. If only…

At one point during the day Harlie was crying those big silent tears and signed “hurt” to me. I just taught her that sign about a week ago and this was the first time she used it completely on her own. Oh, just rip my heart out, will ya?

So, Jennifer suggested we try a milk of molasses enema. It’s something they do in the PICU. She described it to me and I cringed. So, of course, I begged her to come and do it for me. Which, thankfully, she did. She is such a good person and I am lucky to have met her.

At this point, Harlie was running from all diaper changes and the wipes. Poor thing. So we set up for the procedure and we got down to business. It was awful. Holding her down was truly traumatizing. But, thankfully, Jennifer was successful. After it was all over, Harlie was spent. I gave her the quickest bath ever and got her to bed. She was asleep in seconds. And now, she is fine. She’s now on Miralax daily, and we stopped the bananas and replaced it with applesauce. Things are definitely better. But I can’t believe I let that happen. NEVER again! Luckily, I have since learned that we aren’t alone and that this isn’t that unusual. Although it certainly felt like it at the time. So, thanks Donna for making me feel better!

And I suppose we’ll have to take this blenderized diet a little slower. But, can you get slower than 4 ounces of baby food per day? Hopefully it was the bananas. Maybe if we avoid bananas, we can make some progress. Hopefully she’ll be eating a blenderized diet by the time she’s 5.

Take care,
Christy