Shane and I had decided long before Joshua was born that a G-tube was always a good option for us. We have seen 2 children in real life who have HLHS who also have had the g-tube in place and they are doing wonderfully. We have talked to their parents about their decision to have one placed, and how it has helped them. We went into this surgery/recovery time knowing that we would probably come home on a g-tube. I even wrote a post a week ago specifically stating that we were ok with the idea of coming home on a feeding tube of some sort. (We have also heard from so many of you who have had good and bad experiences, and we feel like the good outweighs the bad.)
I have been working closely with the nurses and lactation consultants here at the hospital with Joshua's feedings. I had some concerns that he was not sucking enough while nursing and using me as a pacifier. After many hours of observing Joshua, manipulating his tongue, lips, cheeks, and mouth, we decided that he really was not getting anything nutritionally from me while nursing. On top of that, I was not enjoying nursing because I was stressing out too much about whether or not he was receiving enough milk from me. Combine that stress with the weight loss, and Shane and I had decided that it was the best thing for Joshua to stop nutritive nursing.
Then came the bottle feeding issue. He was doing alright with bottle feeding but not exceptionally well. We waited a few days, observed how much he was drinking and how quickly he would tire out. We observed that he is slow with his feedings, and his suck is not exceptionally strong. We also realized that he tires after about 10 minutes. If he would happen to suck for the entire 30 minutes he's allowed on the bottle, he only takes 10ml's of his 55ml's total. Not enough to sustain him and give him the calories he needs. We end up bolus feeding the leftover 45ml's of milk to make sure he gets enough food to sustain him.
So after 4 days of working through these observations, Shane and I finally decided that it's time to become a bit more agressive with coming home. Our only option is to get the G-tube placed so that we can continue working on oral feeds at home. We will feed him the bottle first, and what he doesn't take within the 1/2 hour time limit, we will feed through the g-tube.
Once we are home, we will offer the bottle/breast first for every feeding. He is definitely interested in feeding orally, and we will continue to work with him to get him 100% PO feeding. However, what he doesn't take, we will give to him through his g-tube to make sure he is getting all of the nutrition he needs. It is extremely important for Joshua to continue feeding orally as much as possible, and we realize that. We do not want him on the tube forever, and we are hoping that this will be one hurdle that we will be able to jump quickly once we are home.
For now, we are being put on the surgery schedule for sometime next week. Should Joshua start taking the bottle without tiring or taking too long, we will cancel that in a heart beat. If not, then we are one step closer to home and being able to work with him ourselves.
I hope that gives you a better understanding of our decision. It's hard to blog every detail of what goes on here, and I know I left a big chunk out in regards to the feedings which made some of you question if this was a decision that we made just on a whim. I appreciate the way that you all look out for us and are so willing to offer advice and words of encouragment. Thank you so much for the continued support and prayers. Love to each and everyone of you.
15 comments:
Thank you so much for writing this. I didn't know there was a "controversy" just for lack of a better word over having it. You are also very gracious to the people that second guess you. We don't get the whole story. We're not you. We're not at the hospital. You're an awesome mom, doing the absolute best for your entire family. It's like with all the other parenting decisions, everyone's got an opinion.
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Here is my families blog.. My son was born with HLHS / Dorv single ventricle ( we are now post fontan...
Very well stated Jill. Everyone has an opinion like I mentioned in my message to you yesterday. There are some that are dead set against the g-tube and that's fine, it is their choice. However for those of us who did decide to go with the g-tube for our child it was the best decision for us and we don't regret doing it. It doesn't have to be a permanent thing. Logan only had his for eighteen months and it took a lot of work to get him to be tube free.
You are right in saying that the goal is to get him to be 100% PO and that you will still need to offer the bottle before every tube feeding. If you don't then he will develop an oral aversion which is a not so nice thing to fight with later on down the road.
You definitely didn't need to give an explanation for your decision on the g-tube. Unfortunately sometimes there are a few who feel the need to obtain one. However maybe some of the questions were well meaning and they were curious what events led to this decision. I can't answer that though since I have no idea from what place they were coming from when asking those questions.
Praying for you!!
Stefenie-
I know that the people who asked about our decsions only had the best intentions in mind. I knew their hearts and I knew their concerns and was not offended at all. I also know that every baby and family is different.
I don't mind giving an explanation. Maybe my explanation will someday help others to make their decisions.
Like I said, I truly appreciate everyone's point of views as long as its done kindly and without judgement. :o)
As a non-heart Mom, I had no idea the G-tube was an option. I thought it was just part of the heart surgery territory. But for the record, everything you've ever said in your writing only illustrates that you have nothing but your son's health as your number one priority, closely tied with the best interest of your family as a whole. If that means G-tube, then that's what it has to be. And I have ZERO doubt that if your doctor said to you, "Jill, I think the G-tube is a bad idea for Joshua for these reasons..." and gave you great reasons, you'd go with whatever needed to be done. Even if it meant a longer hospital stay. But from what I can see as a total outsider, I think I'd be making the same decision as you. If all you're working on at this point is feeding and that can be done in your own home, with your own family (and heck! Your own bathroom, hahaha!), why not go for that? Medical technology is amazing nowadays and I think this is an awesome available option!
I'm SO glad you've reached a decision you're comfortable with! I know a LOT of HLHS kiddos who've come home on G-tubes and really thrived. The only real downside I've heard (besides the logistics of it, but you'll quickly learn just about everything with these heart kids is a logistical nightmare LOL, so that kind of goes without saying) is that a lot of kids fed by g-tube end up with huge oral aversions. But clearly you know that and so you'll continue to feed him PO as much as he can take. It sounds like a GREAT plan and should get you home much sooner! WTG mama!!!
Jill,
First of all you are doing a great job. None of our decisions are ever easy. I was concerned that maybe the hospital was pushing for the g-tube. We had one doctor try to make Colin get a G-tube when we went in for reflux even though his Occupational therapist and his cardologist disagreed. We had to push back on that doctor.
From your post this is the best decision for Joshua. Things will get easier in time. Hospital life IS the most stressful!It DOES get easier, just hang in there!
I love in your comment section that you hope that your explantion will help other families in the same situation. Hopefully this will help someone facing the same situation.
Can I ask a question? This is for not just Jill but other readers who have gone with the G-tube. My (HLHS) daughter had an NG tube when she was sent home from the hospital and was on bolus feeds. Why would you try a G-tube before giving the NG tube a go? Or did you and it didn't work out? I know the NG can become dislodged more easily, but we were taught how to check to make sure it was in the right spot and how to put a new one in if necessary and it really wasn't that hard. It just seems to me that the doctors would want to try a non-surgical approach before placing a G-tube. But never having had to deal with one myself, I realize that I am not aware of their pros and cons so I was just wondering.
Having been a part of the CHD community for nearly 5 years now, I have seen many stories of treatment courses for many different conditions at many different centers, and I am always interested to learn about why certain things are or are not used by some centers that were or were not mentioned to us as options, so that is why I ask. Thanks in advance to everyone who answers :) And of course, many prayers for you Jill and Joshua! I hope the Gtube can be placed as soon as possible so you can get home!
Jill - I have said it before and will continue to say that (for us) the G-tube was one of the BEST decisions we made. I did fight it - and hard, at first - but that tube and all it represented became not only a LIFEline for my daughter but for us as well. That tube allowed my daughter to live. If I had to do it all over again - I would and only change one thing - the time in which I came to that decision to get the tube. Out of all the heart babies/kids I know of and follow on carepages or blogs there is only THREE that did NOT come home on a tube. One of the things we as heart parents have to focus on is just not the "ok, the surgery is done whew that was it" there are other issues that go hand in hand with OHS. Feeding being right up there. Lung problems can develop as well. Heck, we even had to deal with seizures when they pulled her chest tubes. It is not JUST open heart surgery.
You owe no one any explanation as to what decisions you and your husband make for your children. Know that there are many people on both sides of the debate - but you have to make up your own mind what is best for Joshua. From what I can see, you are doing an awesome job as a "newbie" heart mom. This road is not easy. You basically have to become a medical expert in a few months time (thankfully you had advance warning as to the problem)
Shannon Egan
this is addressed to Kathie - the option we were given was this: G-tube placement with NO guarantee of how long we would need it (we had ours exactly 5 months to the day)or we could stay in the hospital until she stopped aspirating. We made the choice to go with the g-tube. The hospital we used (All Children's Hospital in St.Pete/Tampa Florida) does not allow babies to be discharged on a NG tube. Trust me - it was a VERY difficult decision to make considering it required another surgery. And I had to deal with the whole association of "end of life" issues I had concerning the g-tube. But for US (and us alone because I will not speak for another heart mom) it represented life. That tube kept my daughter alive.
Shannon Egan
PS - we did have to work hard at making sure she did not have oral aversion issues. She eats like a champ these days.
Kathie- Our issue with the NG tube is that Joshua seems to continue to tug at it. It's not intentionally, but he somehow always gets his little fingers wrapped around it and pulls it out or half way out.
Our doctors are fine with discharging us with either one, but Shane and I just felt like if we were going to come home on one, we preferred the G-tube.
Thanks ladies, I was just wondering! So many hospitals have so many different policies with regards to feeding tubes, pain management, etc. I like to get as much information as I can so I can share it with other parents so they are aware of all the options. I was wondering if there is less reflux with the G tube too. DD had reflux the whole time she had that NG, but they insisted it wasn't related. However, it went away shortly after we got rid of the tube, so I wonder.
My DD never pulled her NG tube out, we were lucky, but my nephew had one for a while and he would go for it every chance he got! Funny how some kids are just like that. I will say, once we got home she started taking bottles a lot better and when she was 3 months old we pulled the tube and never looked back. I hope you have a similar experience!
Our nurse actually told us that an NG tube can cause a little bit of reflux because the opening to the stomach (?) doesn't fully close with the tube down in it. That makes total sense to me.
We are also finding out now, that Joshua is now even using the bottle for non nutritive sucking. The amount that he takes by mouth is less and less with each feeding. Speech therapy is going to come on Monday to hopefully get us on the path to learning to eat for nutrition instead of just sucking. I'm thankful we have this decision made. Otherwise I would be losing my mind right now! :o)
My little boy was given a g-tube at 6 weeks old. I fought it LIKE CRAZY - more so because of the nissen than the g-tube. Nathan had a cleft palate, just had jaw surgery, and Tetralogy. That g-tube has given me the cute little man I have running around my house these days. The oral aversion has been difficult to overcome, but we work hard at it. It gave us a chance to be a family. There are certainly pros and cons to it and each child's situation is different... but it helped us SO MUCH!
Good luck!
Thinking of all of you today! Raining off and on here today. Will be a good inside day to watch Notre Dame play Michigan. I hope you all have a good weekend together as a family. Jill, you and Shane are awesome parents and people. We love you guys! Give my little Popeye a kiss from me.
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