Wednesday, May 26, 2010

The Bad Blogger Award, and Update

If there was an award for blog slacking, I would certainly get it. The last several days have been a whirlwind and I have admittedly neglected my blog because I just didn't feel like talking about anything.

After our long GI appointment on Friday, I left feeling discouraged and scared. Scared for my baby's health. Discouraged that I couldn't get her the nourishment she needs. Scared of all the possibilities. Discouraged with the "diagnosis" from the GI specialist. Scared of overlooking something serious that may be causing her lack of interest in food. The weekend was hard, mulling over the possibilities. I can't even begin to describe the stress of trying to get The Chubs to eat her daily quota each day, especially when I am the one feeding her almost all day long. 30-40 minute feeding sessions mean that there is very little time for her to play before she's tired and ready for another nap, and also mean that I spend 4.5 hours a day trying to shove a bottle nipple into her mouth.

Monday was her 6 month appointment. I went back and forth about postponing her immunizations because of everything that was going on, but resolved that we should just get them over with and have a blessed 6 months of no shots ahead of us. One saving grace is that she did absolutely wonderfully with them this time. Not much crying at all. Daddy was even able to make her smile immediately afterward. She also didn't have any fussy episodes afterward and hasn't shown any discomfort since. The appointment itself was bittersweet. The Chubs now weighs 10 lbs. 14 oz and is about 23 1/4" long. Still less than the 3rd percentile. She is showing delays in some areas developmentally. On the other hand she is extremely advanced in the social/communication area. I kind of knew that would be the case considering how much she loves people and interacting with them. It was hard to hear about the other delays but the GI doctor has mentioned that her poor eating could be causing some delays because obviously babies need food to grow and develop. Once she starts getting back on track with her eating, she should catch up. For now, we're having a physical therapist through the early intervention program come to our house to help The Chubs with her upper body strength and some other areas where she's lagging.

She had a upper GI X-Ray yesterday and everything looked structurally normal and fine. Her feeding evaluation was good. The Occupational Therapist said she was demonstrating all the classic signs of reflux. So now I'm not sure where we go from here. She's already on a higher dose of prevacid that should be taking care of that, but the OT said that sometimes babies need to be on two medications to treat it. If this is what is actually the issue, I can see why she isn't wanting to eat more. If she does have terrible reflux, she comes about it honestly. Both I and my husband have or have had reflux. I struggled with reflux for years. It is definitely not a pleasant condition and can completely wipe out your appetite.

So now, more waiting. Her weight needs to be monitored every other week so we have another pediatrician appointment on the 7th. The next series of tests will be at the Genetics and Metabolics department at Children's at the end of June.

What I haven't mentioned but you could probably just as well guess, is how stressful all the testing has been. I've literally fought back tears at nearly all of her appointments. At the Upper GI X-Ray they had her laying on her back and were forcing barium down her throat to the point where she was gagging on it. I was about to lay into the lady holding the bottle, as The Chubs screamed through gurgles and coughs. When they drew blood to test for allergies I almost passed out. Not because of the blood or the needle, but because I was so nervous about how The Chubs was going to do with it. When they attached a urine back to her, I felt so bad for her. It looked so uncomfortable squished in her diaper. The bottom line is I'm just not good at this. I hope I never have to attend another appointment alone again. If for any other reason than to have someone to restrain me from lashing out on the doctor(s).

The best thing that has come out of this situation so far is seeing the little muffin in a hospital gown. It was the tiniest little gown I'd ever seen in my life and I have to say, she looked quite cute in it.


  1. Oh my goodness, what an absolutely precious picture.

    I'm so sorry you're going through this. I can only imagine how difficult it is watching your adorable little girl get poked and prodded all of the time & still have no clear answers. Reflux would make a lot of sense. Of course she wouldn't want to eat much if her throat is burning. Maybe the medicine she is on was working for a while but kind of slowed down in its effectiveness. I hope it's something "simple" like that so it can be fixed quickly with some adjustment of medications.

    I'm not surprised she's advanced in the social area. She always looks so happy- even when she's sitting in a hospital gown.

    Hang in there, Ellie. You'll get some answers soon. In the meantime, you guys remain in my prayers.

    (PS- Your "doctors I'd like to smack" label made me smile)

  2. Oh Ellie, I missed your last post. I am so sorry that you have to go through this. Being a parent can be scary enough without having to experience everything you have since Lexi was born. Anna had the G xray and barium swallow too, and I made Jake go in with her while I waited with Sam, so you are a stronger mom than I am. We went to the pedi yesterday and it looks like the twins' reflux is what is causing them to eat less now, too. I'm glad that the shots went well- I hope the PT really makes a difference. I'll be thinking of you and the Chubs.

  3. O, Ellie. What a hard couple of days. I will continue to pray for your family, along with the doctors to find answers and strength for all of you. Olivia also has Early Intervention come out to our house once a week and its a HUGE help. I am so glad you will also be able to have thier help.
    P.S. Can she get any cuter?!!

  4. I know how you feel with all the tests and having that helpless, worried feeling. We have to go every few months for tests on my sons kidney and you are right....its not pleasant. I hope your sweet baby gets relief from reflux soon. She is precious.

  5. It all sound so emotionally exhausting. It cannot be easy to watch your little girl through all of that testing. I don't know at what point in it all that you took the picture of the Chubs, but she seems to have a look of trust in her mama in her eyes. She seems like a tough mini-cookie and I think she takes after her mom on that one. Hope the doctors find helpful information from all of the testing.

  6. Ellie, I am so sorry that you are having to go through all of this with the Chubs. I know this must be so hard on both you and her. I hope that you get some good news from all of the testing. The picture of her in the teeny tiny hospital gown is adorable.