Friday, September 3, 2010

Feeding explained

This post is for those of you who may not quite understand what the feeding issues are for HLHS babies. For any of you heart moms out there who read this, feel free to add your 2 cents (I am by no means an expert at this, and am still learning!). I want my non heart friends and family to understand what challenges Joshua (or any heart baby for that matter) face in regards to feeding.

I have been lucky to be able to nurse Joshua. When we found out about HLHS, I was devastated for multiple reasons, but one of them was because I really wanted to nurse one final time. I've been pushy with the nurses and doctors to let me try to nurse him, but at the same time making it very clear that if it's not going to work, that I'm OK with bottles or feeding tubes. I just need to be able to say that I tried.

The problem with nursing an HLHS baby is not the nursing and latching on itself . (sometimes it is, but thankfully, for Joshua it's not been a problem. some babies have oral aversions because of the breathing tube and some babies have some severe reflux issues) Joshua has done a great job latching on and figuring out sucking, breathing, and swallowing.

The problem with nursing an HLHS baby is that they tire out too quickly and burn too many calories. HLHS babies have to work much harder than normal babies non HLHS babies (my baby is perfectly normal thank you....) to live. Breathing, moving around, and just living burns more calories than non HLHS babies. Often times with nursing, HLHS babies are burning more calories than they are taking in just with the simple act of nursing.

Joshua continues to remain on a continuous feed throughout the day with his feeding tube. He is given my milk through the feeding tube, but my milk is also fortified with human milk fortifier. He has been given 22-24 extra calories per feeding which will help him to gain weight and give him the extra calories he needs to live. We will eventually work up to bolus feedings, which are large amounts of milk given at one time instead of small amounts given over a long period of time.

For now, the nurses and doctors and I have all decided that we are going to wait another few days or so and see if the nursing is going to be worth it. We will continue to monitor his weight gain, and if he is gaining consistently we will continue nursing, if he's not gaining, we will stop and try the bottle. Joshua is completely in charge and calling the shots in regards to his feeding. (The past few days he has lost weight, but last night he was up. He is now up to 8lbs 2oz- up 1oz from his birth weight.)

I am completely ok with the idea that Joshua may come home on either the NG Tube or a G-tube. If that is what Joshua needs to get him nice and fat before the next surgery then so be it. Shane and I want what is best for Joshua and if nursing is not part of that, we are ok with that.

Please feel free to add anything that I may have left out. I know there are quite a few expectant families who read here and may find this post helpful as they prepare for their baby's arrival.


Carrie Flynn said...

The analogy I found helped people understand best was comparing Tiernans heart to the heart of someone who is walking on a treadmill. All the time. He did breastfeed for short bursts and I would give the rest through his NG tube. After several weeks we were able to switch to the bottle but I still breast fed a little but. I never produced enough milk with him to sustain. It was purely for comfort and bonding. After his Glenn and DKS though, he developed severe reflux according to the docs. He was 4 1/2 months and still only bit over 10 lbs. Long story short, he got a GJ Tube. ( into the tummy but the tube goes further down into his intestine to avoid reflux). He gained like a champ and today at a year old he is in the 40th %. This is good, but I am convinced the feeds into his intestine caused (or at least exacerbated) the reflux. He has moderate oral aversion now that he did not have prior to the GJ. My advise to you is to avoid a G tube if at all possible. Use an NG if necessary. Keep up the oral stimulation. (paci-t never liked one). Keep breastfeeding if possible but don't feel bad if it doesn't work. You are doing great. Joshua is in an amazing family. (I know I don't really know you, but it is obvious from your blogs and posts. ) love to you all.

SteveC said...

Keep working with Joshua, he's doing his best! Seems like some of those fierce and feisty genes got passed down to him!

Amy said...

Thanks for the explanation! You have such a great attitude about it. I don't blame you for wanting to try nursing (and I'm so glad it's going well so far for you!!), but at the same time, I think you're being very reasonable to say, "Whatever Joshua needs, that's what needs to be done."

Anonymous said...

Jill-I hope that Joshua is able to eat well and will not need the NG tube for a long period of time. My son was put on extra calories as well, but his stomach could not take it-he would vomit his feed every time. I finally convinced our cardiologist to try plain breast milk-not fortification. Jamie continued to gain weight like a champ. The moral of the story is....every child is different-even heart kids. Some will need some help with feeding and others will need none at all. Just take it one day at a time-God will show you what Joshua needs. Remember, you are Joshua's mommy and you know him better than anyone else. I'm glad that you are letting the doctors and nurses know that you have a say so in Joshua's care.
proud mommy to Jamie (PA/IVS)

Anonymous said...

You're journey with this terrible defect has been so blessed! You are being so reasonable about the need for a g-tube. Most HLHS kids will get one at some point if not right away. It doesn't make you or your baby a failure by needing one but these kids have so much to overcome just to live. Why stress over oral eating? It'll come. I would embrace the g-tube so your man will only have positive experiences. No nasty tasting meds and stressing over every little ounce. You would also be able to continue to nurse and simply bolus extra calories. I read somewhere that some hospitals are placing g-tubes when the Norwood is done. Feeding is what keeps most heart babies in the hospital which is the most germy place on the planet. Not every heart kids walks this journey the same and some don't even get the chance to walk at all. Listen to your gut and your momma's heart and you'll be fine. Praying in IL, Crystal

Amy Bennett said...

You explained it well! Our cardiologist told us that the average heart of an HLHS baby works about 4 times harder than a healthy heart! 4 times - can you imagine? That's why it's so unbelievably hard for a lot of them to gain weight. It gets better after the Glenn - then, the heart is only working maybe 1 time harder than a healthy heart, so kids should be able to gain weight more easily.

Even though Bodie has vocal cord parasis on one side, we've been extremely lucky that he is able to tolerate thickened and fortified breastmilk bottle feeds. The kid eats like a CHAMP (I mean, seriously, he's up to 5oz bottles all day long), but it's still a struggle to get him to gain weight simply because his body is working so hard.

I am so impressed you've been able to breastfeed so far - keep it up if you can! It's SO MUCH easier than exclusively pumping! And if you can't and he needs an ng or g-tube, so be it. Just make sure you work with PT to continue some bottle/breast feeds so he doesn't end up with oral aversions. That's about the biggest drawback I've heard to the g-tube. But there are lots of advantages!

Good luck mama!!!

Anonymous said...

Jill we came home on with a g-tube. I have to say I fought it - and hard - at first but that tube quickly became my best friend. I could give meds via the tube (and if you are like me and alot of other heart moms we have tasted the meds and some of them are down right nasty!!!) so that was a blessing. I could also feed her on long trips up to St. Pete. We had ours for exactly 5 months. Once she passed her "swallow study" test we were able to have it removed. I was suprised that I felt sad to see it go away. My daughter is now 2 1/2 and only weighs 22lbs. We just had a heart cath and she lost 1 lb, 2 oz while in the hospital (and yes, those darn ounces still count!!!) She was still wearing 3 month old clothes at 12 months. I have had to work thru some issues with the whole weight thing - failure to thrive label her drs have given her. Nothing else makes me feel like such a failure as her mother as those darn % charts at the doctors. We are not even on the chart.

I have to admit that one of the main reasons I fought the g-tube so hard was that I associated it with "end of life issues" and that could not be farther from the truth. That tube allowed her to live. And for that I am grateful.

Shannon Egan

Joye said...

Jill -- I would go as far to say that it's a small miracle that you've been able to nurse Joshua. In our 2 1/2 month hospital stay I never came across a mom or baby (and believe me, we met a lot!) who were able to nurse. It may be a difference of hospital staff/viewpoints, but whatever it is, go with it! Every little bit of practice he can get is crucial right now.

I totally agree with a few of the other commenters about embracing the feeding tube if it comes down to it. I really like what the mom above me said about the tube letting her baby live; there is so much truth in that statement!

You are doing the absolute best thing for Joshua right now; pumping for him, nursing when possible, and making your presence known around him. All of those things will go a long way to him becoming one strong and healthy little boy!

Sending lots of love and prayers from NC...

Cindy Gibson said...

Just checking in to see how Joshua and you all are doing. I'm praying that he will continue to be able to nurse, and gain weight and get stronger. You are doing an amazing job! With Prayers, Cindy Gibson

kirsten michelle said...

Wow, there are just so many things to consider for these little dudes after their heart surgeries. As you know, Ewan is my first and I was so looking forward to nursing & having that bonding experience. Hopefully we will get the chance but I'm with you -- doing whatever needs to be done, whatever is best for the baby.

Blessings to you all, and thanks for sharing this kind of stuff!!

Dawn B said...

You are doing wonderful Joshua! and so is your mama *heart hugs*
You are at least trying the breastfeeding and that's all that matters.
I know it's not easy at all, but your strength and will (and Joshua's) amaze me.

Anonymous said...

A few days after Ivan began feeding they thought he may have developed necrotizing endocolitis (NEC). From what I remember, this is a very serious condition that they take very seriously. The intestines begin to necrotize Idie). Food was once again removed and he was on antibiotics for 2 weeks. Not all the doctors believed he had this, but they were just nottaking any chances. They also felt like he was allergic to a milk portein, so he was put on a special formula. Ivan had pretty bad reflux for the first year and was on prevacid and another med. (I can't remember the name). Isn't it funny how you forget in such a short time. I'll beth his mom still knows. Ivan has not been the typical HLHS baby. He gained weight very easily and now at almost two has thinned down, but grown taller, just as two year olds do. Jill, I know it is very difficult being pulled in all directions and wanting to go home, but let Joshua's little boday take it's time to get used to this big world. You are doing a great job.
Gale Bagwell, Grandma to Ivan Taylor, HLHS

Hannah said...

Our daughter dappled with nursing from birth to 4.5 months, then came home after her Glenn as an exclusive breastfeeder. We, too, had many issues during the inter-stage that I later attributed to the milk fortifiers; once we switched to straight breastmilk, all of the GERD and allergic colitis went away. I would simply echo an earlier comment by saying that each child is different; while it is important to embrace the fact that the journey with a child with CHD will be different from a journey with a healthy-heart child, advocate for yourself as best as you can in order that your child not simply be labeled as HLHS and therefore not challenged to do what might be thought otherwise not possible.

Stefenie said...

It's not just HLHS babies it is most heart babies who have not been repaired yet. Especially if they have a cyanotic defect. Logan was the same way and he required tube feedings round the clock with high calorie formula.

It is tough thinking that they are dependent on a tube but it comes to a point where you realize that whatever they need to survive you are willing to do.

Hang in there Jill.

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