Let's Start at the Very Beginning...

On September 15th, Katy and Andy found out that Baby Jacob has a life-threatening condition called Congenital Diaphragmatic Hernia (CDH). CDH is a very serious condition in which a hole in the diaphragm allows abdominal organs to move into the chest restricting lung development. In Jacob's case, his liver is also squishing his heart and displacing other organs. CDH occurs in about 1 out of every 3,000 pregnancies and has a mortality rate of 50%. To make matters more complicated, Jacob has Right-Sided CDH which only occurs in about 10% of CDH cases and is typically more severe. They are so blessed to have found this out when they did, or Baby Jacob would have surely died at birth.

They will be delivering at UW Hospital in Seattle and later transferred to Seattle Children’s. Thank you to everyone who has already begun praying, and everyone who will now. Baby Jacob is blessed to have all of you thinking and praying for him.

To Tube or Not to Tube~That is tonight's question

Mar 9, 2012 -I'm about to lose my mind worrying about Jacob and his eating issues and gaining weight. He took his feeding tube out twice shortly after leaving the hospital. We never put it back and he was doing pretty good. That is until he got sick at the beginning of February. We then were feeding him what he could take orally then tube feeding whatever was leftover until eventually, he was taking his full feeds by mouth. We had to put his feeding tube back when he got sick with his cold. When he started getting better we reintroduced the bottle and kept the tube in to "top him off" when he wouldn't take the entire feeding by mouth. We feel like he should be eating everything by bottle again and we want that dang tube out!  We want it out for two reasons-we want him to eat normally (like he was) and his face is a raw mess from all the tapes we have to use to secure the tube. He is not taking enough by mouth and we will most likely have to put his tube back in tonight.  He just doesn't have a desire to eat. In fact, he fights the bottle when he wants to be done. He is not fussy and acting hungry. He takes a little over half of what he needs to eat (sometimes less), and then is just done. He would die if he continued like this. I don't understand why he has struggled so greatly to live in every way except he is considered "failure to thrive" when it comes to eating. I just want him to be happy, healthy, and NORMAL!  I am tired of him being a sick baby. I'm tired of him having to struggle. I want him to enjoy eating adn having a full tummy. I'm tired of him being tangled and his face being tugged on all the time. He is starting to move around more. It won't be long before he is rolling over. What happens then??? They don't even make baby toys with short strings for fear they might strangle themselves. Our baby is attached to strangulation devices 24/7! I know I'm being whiny and I know moms (and dads) have been in this same situation and gotten through it just fine with a healthy baby in the end, but right now I am feeling VERY impatient!  I am tired with worry and the full circle conversations Andy and I have about the best plan. Jacob has an appointment next week so we can talk about it more then, but I often feel the doctors solution to everything is to just keep him tubed and hooked up to machines and doped up on meds. I am ready to move forward and I am done dragging my feet! Jacob, are you ready??? That is what I'm constantly asking. Jacob, are you okay? Are you breathing right? Are you aspirating or just coughing? Are you ready for change and to move forward? Are you developing correctly? Am I asking too much of you? Is it selfish of me to push you? Am I doing what's best for you? Every day I pray that God grants me grace and wisdom to make the best decisions for Jacob.

So to all those moms and dads out there that have gone through this already and have good advice, please help me out. I know you guys must have some tricks up your sleeve! I would love to hear what other parents have done to get their children weaned off the feeding tube and onto the bottle.


  1. Hang in there. I remember how excited I was when the NG tubes came out and then the tears and disappointment and guilt when the doctor decided to put it back in one of our twins.hours felt like days. Days felt like months. I imagine his body is getting stronger and those tubes are a lifeline for nutrients. Does Jacob have an allergy to the tape? try to be thankful for the NG and not look at is as the enemy (I know I did). Try to keep your faith and know it won't always be like this. Don't forget how far you've come. Shed those layers of stress and celebrate small victories and keep discussing all the positive to date. And don't think I'm crazy, but talk to your own doctor. The stress of this journey affects Moms physically too. You can do this. And its ok to get frustrated. Love to your family.

  2. I went through exactly this. We just squeaked by without a tube for Dakota. One of the main things is that our particular pediatrician and our surgeon, Dr. Kays were both easy going with us on it. Their theory was that if she is gaining weight (however little), breathing well, doing well and healthy, then let her keep eeking by. She NEVER, I mean NEVER, took the recommended amount. When we came home from the hospital I would say she took about 3/4 of what the hospital recommended and she was negative on the growth curve until her 2nd birthday. She is now 5%, still tiny. Yet, she was off oxygen completely by 4 months, was off reflux medication by 7 months, and while she was behind developmentally by about 2 months, she was reaching her milestones. It is a very individual situation based on how your baby is doing. However, if Jacob is doing well and is healthy and breathing well and gaining weight, even if it is only a little bit at a time, our pediatrician would tell us not to worry and just keep trying. Dr. Kays told us that he would always rather see a baby gain 1/4 of a lb while eating by mouth than see a baby gain a lb while being fed through a tube. That comforte me many times. We did not come home with an NG tube so I had no safety net and there were nights when Dakota did not take much and I cried all night wondering if I would have to bring her to the hospital, but then she would take a full feed the next feed and I would breath a sigh of relief.
    I do have one solution that got us through the tough times - sleep feeding. A nurse at the NICU showed us this. When Jacob is mostly asleep or in a light sleep, lay him on his side in your lap and put his head in your left hand and the bottle in your right hand and gently put the bottle in his mouth. Often, because the babies are relaxed they will naturally eat. For a period of about 3 months, this was the only way I could get Dakota to eat. Once we started solids and she like them she actually started to like the bottle more as well. She did not take any joy in the bottle until about 7 or 8 months. The first time she actually opened her mouth for food I cried.
    Hugs, Many Prayers, and Good luck,
    Mom to Dakota 12-25-2008
    RCDH survivor

    1. Your situation sounds a lot like ours. Both of my other children are quite small and have always been at the 25th percentile at most for weight, usually below the 10th. Jacob was following suit but was gaining steadily. Another worry is Jacob's thyroid. He has hypothyroidism and is on meds for it. But if those levels change it could possibly be a cause of his lack of weight gain or lack of appetite. We've adjusted the medication once already. We do the sleep eating because it does help him eat with ease (less gagging and eating more.) Jacob's doctors/nutritionist are on the same page somewhat about him gaining steadily even if it's on a low percentile. Since he was tube fed while being sick he went from the 7th percentile to the 25th in just two weeks! (We fed him a more generous amount than he would ever take frequently.) Now he will probably lose weight to get back to his body's normal self. I'm worried the doctors will frown upon this. I guess we will just see how things go. Thanks for your advice!

  3. My name is Michele and my kids go to Naches Trail. I am a respiratory Therapist at Mary Bridge and I was just wondering if you guys are going to Speach Therapy so they can help with the oral part to help him want to take the bottle. I know they can do some amazing things. My Son has spent a lot of time at Childrens Therapy Unit at Good Sam and also do you have him in the Birth to 3 program yet. We also did that and they came to our house each week and we used a place called a step ahead and they were wonderful. I know that the easy answer in the medical world is just keep doing what your doing. Remember to stay strong and you guys are the parents and the one's who know him best.

    1. Jacob does not seem to have an oral aversion and his gag reflex has even gotten less sensitive. Although he has had more difficulty eating since his tongue tie was clipped, but this is also the same time he started getting sick and not wanting to eat at all. This is another worry...did his frenotomy mess up his progress in taking the bottle? I know Jacob can and will take his entire feeding by bottle. Yesterday morning he did, but then he didn't have a real appetite for the rest of the day. I think my friend works at Step Ahead. I don't have him in the Birth to 3 program, but I should. It would be such a relief to have someone come to my house so I don't have to make the 50 mile drive to Seattle. Thank you for your thoughts and advice!

    2. Katy, call the district you live in and ask for the Birth to 3 program. They come out and evaluate Jacob and then let you pick between different programs. I know how expensive it was with my son and I know your out of pocket costs are probably huge. When you go through this program it's no cost to you or deductibles. I had no idea about this until my son was was about 13 months old. It's seems to be something no one tells us about. Even if Jacob doesn't have an oral aversion it's amazing the games they come up with an different ideas of things you can do that the Dr.'s don't know about. Children's Therapy Unit at good Sam is an amazing place and not so far away.

  4. Dear Katy,
    First, I just want to say what a good mom you are. I can hear it in the way that you reflect on what you're doing and care.so.much about connecting to what Jacob needs. Mama, this is hard. When I read the way that you are questioning yourself, I cried. I know all those questions and all those feelings. It's just hard.

    This last go-round for Samuel in ICU, when things looked so very bad and I was so very scared, crawling into the hole of my own fear, one of the nurses came in and looked me in the eyes and said, "Step back. Stay the course. You can do this." Then she left. Those words are so practical - and I am a naturally emotional person - so it was just what I needed.

    So I just typed a whack of thoughts and it won't all go through so I will email the specific ideas to you. Let us know how you are doing.

    Big hugs.

    1. Thanks, Friend! Your words are always so encouraging, and I know you have been through the worst with Samuel. I'm so glad he is doing so well. I wanted to add what your other words of advice for any moms out there that might come across this. Your ideas are very helpful!

      Corrine's Advice:

      So here are a few thoughts, receive and discard as they fit, okay?

      - When I hated that tube - and I did - I would remember that the NG is what allowed Samuel to come home to us and I would say thank you. Even if I had to grit my teeth to do so, I would say thank you.

      - Roll the tube up and tape it to the shoulder of his shirt/sleeper so that it is not dragging or hanging down. You need to be able to tuck it away for his mobility AND your sanity.

      - YES to the dream feed approach that Jennifer mentioned she used with Dakota!

      - Here is a strategy from a dietician that I really liked. Take the total amount that you want for the day, say 600 cc. Divide the day up into 6 hour sections (I used 12-6 and 6-12 because it was easiest for me to remember) and know that he should have about 150 cc in each of those sections. If you're nearing the end of the section and he's a bit low, top up 30 cc or whatever. You don't have to stick to this exactly and you could do 3 - 8 hour sections or whatever works. But I really appreciated the freedom in just feeding my baby, writing it down and forgetting about it, then only thinking about topping him up 3 or 4 times a day.

    2. Corrine's Advice Cont.

      - When he pulls the tube, as he will, consider it time for a *break* but don't do the whole "does he need it doesn't he" thing. Keep tracking his feeds. I found that Samuel could go a full day without it, then a day and a half, then two days. I would pop it back in and do some more top-ups, then he would pull it again and we'd have another break. It's a transition - and it won't take that long! Use the break to really baby his face with a special balm, something coconut oil and rich.

      - I KNOW you already did this and him getting sick set you back. But remember... you can do hard things. It's okay to be mad about it. But you can do it.

      - Every time you go to feed him, start by calming yourself. Pray, breathe, stretch, whatever works. If you are tense, Jacob will feel that. I hesitate to even say this because I don't want ANY mama-blaming going on!!! But you might just both feel better if you give yourself a minute to settle and wrap your head around cuddling and taking whatever feeding he's open to instead of bracing yourself.

      - Is there a different position he likes? Or a different setting? All my babes became very distracted around Jacob's age - you may have found that also. Samuel would eat more if in a dim quiet room (I know - seems impossible!) and we would lay face-to-face on our sides with the bottle tucked between us. It was calming for me too as I couldn't get too worked up looking into his sweet eyes.

      - Don't do this alone! Yes to what Michele said about the speech therapist or home care program. Do you have an occupational therapist who specializes in feeding?! They are BRILLIANT. I have known them to see things that no other doctor or nurse, no matter how specialized and smart and experienced, could figure out. They've had great suggestions for us, including different positions to try, different bottles. One got a 6 month old onto a straw sippy cup because she hated the bottle so much. Go love up a feeding OT today!

      - He will get this, Katy. You can probably get the go ahead to start some solids soon, just really gently. That might help.

      - Ask your doctor about:
      ... concentrating his milk so that he gets more calories with less volume.
      ... considering reflux and/or allergies as a culprit for his distress
      ... what is the "goal" for him and is that reasonable considering everything else - thinking again about what Jennifer said that a "normal" benchmark on the growth charts is a recipe for frustration in wee Jacob

      Okay, that's all I can think of right now. Let us know how you are doing. Now please re-read the first part of what I said about how your feelings of being mad and wanting your normal baby/family/life back (oh so familiar) are so normal. And that you can do this.

      Big hugs.