Friday, June 29, 2012

Where Are They Now? Part 3--Izzy (by Meghan)

Height and weight at birth: 1 lb. 7 oz.
Height and weight now: 17 lbs. 13 oz. and 25 in.

Izzy, Izzy, Izzy! What a fighter our little Izzy is! Not only did she survive Twin to Twin Transfusion Syndrome, being born at 29 weeks, low birth weight, four bowel perforations, and 5 surgeries, but she's still a happy baby in spite of it all.

For a long time I felt Izzy didn't really care if I held her and I wasn't sure if she even knew I was her mom after a 4.5 month stay in the NICU. Well those days are gone! There's no question anymore about who her mom and dad are. She smiles at me when she sees me, looks for me when she can't, and no one can make her laugh like I can. Sometimes I'm so surprised by the fact that she can laugh at all, but she does and it makes me feel good to know she's happy. At the end of the day that's one of the true blessings we've been granted. Even though she laughs with me, I can't exactly say she's a mamma's girl. She could not get enough of Jeremy tonight. Looking around for him, smiling at him, listening to him read to her. She's giving us lots of love to pay us back for all the extra love we've needed to give her the last 10 months.

Alright enough of the sappy stuff, here's what's going on with her. May was not a good month for us. Izzy was going down hill and I just kept thinking if she had still been in the NICU they never would have let this baby come home. I felt like she needed more medical care than I could give her, like something was wrong and instead of getting better, it seemed to be getting worse every day. I felt like we were in a downward spiral and I didn't know how to stop it. Finally, at our second overnight visit to the hospital in early June, the docs finally started to figure it out. Izzy's need for oxygen kept increasing slowly over the month and by the time we got to the hospital this last time, she was struggling to breathe on a full liter, which is the highest we can give her at home.

It turned out that, due to the weight she had gained, her diuretic (medicine to help her remove excess fluid from her lungs) was below a therapeutic dosing because we hadn't increased it since she was 8 lbs. She was given stronger doses of this medication at the hospital to get back to baseline. The docs also doubled the medication at home and added an additional diuretic. Her breathing has been getting better and better by the day since then and we're hoping to have at least some time off of oxygen this summer before RSV season returns.

We also had an appointment with the neonatologist and GI doc. This appointment was one of our best yet. The GI doc has made it his mission to figure out the answers to all of our recent issues: diahhrea, horrible wretching/dry heaving, and feeding.

Poor Izzy has had diarrhea for 3 months now, since the surgery. Enough is enough so he decided to test a sample to see if she still has C.diff. She first tested positive for C.diff about 3 weeks after surgery. Since then, she's had 2 rounds of antibiotics, but she still has diahhrea and tested positive. The plan now is to add probiotics and try another antibiotic. We're really hoping this one works because she is so uncomfortable and unhappy a lot of the time right now because her tummy hurts from the gas.

She's also been having horrible coughing, gagging episodes during which she turns purple. His plan for this is to put her on lower calorie formula to see if it makes any difference. I really think it's more related to the C.diff than the caloric value of her formula, but at this point we'll try anything to make her feel better!

The final problem we needed the GI doc to help out with is Izzy's oral aversion. Since about a week post-surgery she's been refusing to eat and getting more and more averted by the day. We were wondering if the Nissen Fundoplication was too tight because she didn't seem able to swallow anything without gagging. The doc ordered a modified swallow study, which showed the Nissen is normal and definitely not the reason she's not eating. I'm thinking the C.diff and the respirtory distress were definitely large factors in her starting to refusing to eat. The lung issue is much better already, so the next step is to resolve the C.diff and then get her back to eating again.

Thankfully he answered all of our questions and we have a plan to resolve all the issues she's currently having. It was well worth the trip downtown!

Physically, Izzy has made so much progress since the surgery. She's sitting up now and starting to push herself up when she's on her tummy. At her most recent evaluation for Early Intervention, she qualified for occupational and developmental therapy in addition to the physical and speech therapy she was already getting. We've also been meeting with a dietician to make sure she stays on track with her weight gain. She helps us make adjustments to ensure Izzy's gaining the right amount of weight over time. Hopefully with all of this great support she'll continue to thrive.

Recently, we found out that another little baby, one that had very similar issues to Izzy, died and never made it home. My heart breaks for that baby's family and it reminds me how lucky we are to be dealing with the issues that face us today. You can definitely tell from the pictures this little girl has come so far thanks to so many great nurses, doctors, and all of her fans on the internet who prayed for her. Thank you to all of you! I hope you enjoy her pics as much as we do!

Here are a few "where they came from" pics to start it off.

Now, she's a big girl!

She gets visits from numerous therapy friends each week.  This is Katherine, her PT.

Here, she's working on her lounging skills.

Sometimes, she gets a little bored of sitting around.

She did actually smile right after this, just didn't get it on camera.

Now, she can sit up on her own.  She likes to sit in a circle with her sisters and participate in the toy swiping ritual.

She has super long hair on the top of her head.  It makes putting in bows extremely easy!

Sophie and Izzy thoroughly enjoying dad's reading of the Very Hungry Caterpillar


How cool is she?

She couldn't move fast enough to escape Maddy's puke bomb.


  1. You guys are such amazing parents! Izzy is so lucky to have you guys in her corner! She has grown so much, it's almost unbelievable! Those eyes...oh my goodness. Melt your heart eyes!! Thanks for sharing Izzy with us! Hoping for continued forward progress for her! (And the picture with the little doll is pretty incredible!)

  2. I am so glad to hear that little Izzy is sitting up...that is an incredibly big step. You will appreciate this story....I had a friend whose little guy was born with omphalocele...he, at age 2, was still tube fed and dealing with oral aversion....until, one day, she put Heluva good French onion dip on his nose, chin, and lips....certainly not what I would suggest at this age, but at age 2 it did the trick! He finally started eating. He is grown and healthy now.

  3. one of our blogger friends has a son with really bad oral aversion and now has found out to have some major allergies/intolerance to dairy, soy, corn, etc... have you thought about allergies being an issue with the retching and diarrhea? also, to help with the oral aversion she does what's called "swiping" where she doesn't force him to eat the food but just swipes it across his mouth so he stick his tongue out and get used to tasting it.