Sunday, January 9, 2011

Day Twenty-five.

Life with a baby in the NICU is best described as a rollercoaster ride, full of ups and downs. Yesterday, things were going great. I left the hospital feeling incredibly happy. Today was the complete opposite. I left the hospital crying. It just wasn't a good day.
Things started off fine. We were able to give Elliot a sponge bath for the first time, which was fun. Who doesn't love a nakie baby?! But then feeding time came. You would think that after not being able to eat for three weeks, Elliot would gobble up every drop of milk we offered him. Nope. He's not interested in the bottle. In fact, he kind of hates it. He makes this horrible face when you try to get the nipple in his mouth, and arches his back and tries to escape. Then, if/when he finally starts sucking, he just lets all the milk drool right out of his mouth before falling asleep and refusing to be awoken to finish.
Our nurse sensed my frustration (and had a few frustrating feedings herself that morning), so she called the occupational therapist. She works with babies who are having feeding problems. The therapist watched me bottle feed him and pointed out a few problems:

- Elliot has a recessed chin which makes it hard for him to get a good strong latch
- He is starting to show signs of oral aversion
- He works very hard to breathe while feeding (his respiratory rate is in the 70's or 80's, which is equal to an adult running on a treadmill)
- He doesn't understand the suck/swallow/breathe sequence

So, Elliot's honeymoon phase without tubes is over. He now has an NG feeding tube in his nose. He will be given twenty minutes to try to take his bottle. Whatever he doesn't finish in that time will be gavaged (tube fed). This will enable us to wean him off the TPN (IV nutrition), which is horrible for his liver. We have plenty of time to work with him on nippling and feeding but... I just want to bring him home.
The occupational therapist reassured me that problems like these are common for gastroschisis babies, and that the feeding process can take months. MONTHS. It just wasn't what I wanted to hear at this point. It is the strangest feeling to leave the hospital every day WITHOUT my son. I just want him home with me, to be able to do all the things with him that mothers normally get to do. I feel like I'm missing out on this wonderful newborn stage. Quite frankly, I feel like an inadequate mother because I am not able to care for him 24/7. I miss him at night the most, every time I wake up to hook myself up to a machine when I should be nursing my son.
It's just hard.

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Elliot a few minutes before his sponge bath

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All fresh and clean! {does anyone else think he has reddish eyebrows?!}

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New feeding tube :(

18 comments:

  1. Hi Jess!
    Yesterday you mentioned her took the breast really well (better than the bottle, which was wonderful to hear! I'm wondering, why no breastfeeding today? Is there a (medical or other) reason why he needs to have a bottle (when you are there)?
    Has the NICU suggested or provided a preemie or slow flow nipple?
    Just a few thoughts, for what they are worth.
    Hang in there mama- tomorrow is another day!

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  2. Oh mama you are in my thoughts. Is there a reason he must have a bottle? Could they weigh him before and after you breast feed to determine how much he ate? Have they talked to you about finger feeding, cup feeding or a supplemental nursing system? I am praying that your little man can get nursing asap.

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  3. Kingston was fed through a tube for a bit because he was born early and they don't know how to suck. We also did finger feedings too. It was soo stressful so I completely understand where you are coming from! I am so sorry girl. He never breastfed though, so you are lucky there. Just give it another couple of days and maybe he will be able to learn how to suck better because they grow soo much each day! Don't feel stupid to cry! It's soo stressful when they don't eat.
    Are they giving you NICU nipples to practice on? They are smaller nipples and help a lot they are kind of orangish yellow color.
    Kingston sucked from those for about 2 months!!

    Hang in there. xoxo You got a cute little angel baby!!

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  4. I'm so sorry. I'm crying for you and as always praying. I couldn't really tell in the picture if his eyebrows were reddish or not.

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  5. I couldn't begin to imagine how hard it is for you to leave your son at the hospital every night...but you shoudl never feel inadequate as a mother! You are loving your little man and that's what it's all about

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  6. I'm so sorry that today was such a rough day. hopefully, tomorrow is much better.

    In case you're taking suggestions on bottles/nipples: The First Years Breastflow BPA Free Bottle. For some reason, even though they don't look like they mimic the breast best, a lot of babies have success taking this bottle, and going from breast to bottle and back with ease.

    You can find these bottles online and at Target and Babies R Us stores.

    wishing you, Elliot and Aaron all the best!

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  7. I think about you and sweet Elliot everyday. I cry every time I read your blog, it's just so emotional. Sending tons of love your way, especially today.

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  8. Can't pretend to understand how you must feel but in no way what so ever are you inadequate. It sucks that you have to go through this though.

    Will they still let you breast feed since he seems to take to that better?

    Exactly things are up and down now but that just means it can only get better right? I know being positive is easier said than done right now, especially because I really have no idea what I'm talking about.. Just know that there are people out there who care about you and your family. We're sending all our prayers and energy to all of you.

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  9. Have they tried different bottles/nipples? A friend of mine went through all the brands before her daughter would take a bottle just so she could go out for a night...keep up the breastfeeding when you see him to help with your supply.
    Good luck!

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  10. Oh sweetie, hang in there. Elliot will eventually get in to the feeding thing. Everything is just so new to him. I had problems feeding N too when she was born, we were told that she was a little bit tongue-tied. Just keep at it and he will eventually learn to do it, in his own time. And please try to brush off the thought of being inadequate, you are doing a WONDERFUL job.

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  11. Hang in there! I read your blog daily and have grown attached to you and sweet Elliot. Praying for y'all! Things will get better!!! :)

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  12. He is just the cutest thing :)
    Praying for you all, that he can come forward in leaps and bounds and go home with you soon xxx

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  13. He is such a doll! Keep your head up mama... he'll get the feeding thing!!

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  14. You are a wonderful and STRONG mother. Never think otherwise. Other mothers (like myself) would have curled up in a ball by now and given up. You keep fighting and hanging in there. You are the perfect mother for your son. He needs you, and no one else. Keep praying. You are an inspiration.

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  15. I know exactly how you feel. For me the feeding process was very frustrating, but you will see that Elliot will have a steady progress and will be taking his bottle in no time. I agree with others about trying different nipples. I also had a full breakdown when Tobias wasn't taking the volume he was supposed to be taking and I felt he was going to be in the NICU forever. But he was home that same week. When they get it, they go really fast.!.

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  16. You are doing an awesome job, Elliot is such a lucky baby to have you for a mama! Really- he's getting liquid gold every day because of all your hard work. And it will get easier to feed him, I know it's so hard in the meantime now.

    I'm wondering with everyone else- is a different feeding method acceptable? Maybe finger feeding or a syringe, or does he have to be taking a bottle before he can leave?

    I can imagine how horribly hard it is to have to leave without your baby everyday, but that is just imagining, and I'm sure it's a million times harder in reality than I could ever imagine. You all continue to be in our prayers.

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  17. chin up!!! There will be a brighter side to all of this!!! Prayin for you guys!!!

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  18. You are a wonderful mother. Try not to beat yourself up too much. I can only imagine the lows that go with an NICU baby. I've read of a few babies and they all seem to go through many similar stages. Elliot is very handsome and growing well. You've got a lot to be proud of in that little bundle of joy.

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