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.

Wednesday, June 27, 2012

Where Are They Now? Part 2--Maddy (by Meghan)

Today's topic is our little miss Maddy but, first, here's one of all of the girls.

Height and weight at birth: 2 lbs. 8 oz. and 13.75 in.
Height and weight now: 19 lbs. 4 oz and 26.25 in.

She went from being less than 3% on the chart for height and weight to 50% for weight and 10% for height. She is making progress everyday just like her sisters. Health-wise she's been doing great since her battle with RSV.  Her main obstacle is her reflux. Yes, she still has it, and I'd say it's still pretty bad. She spits up regularly but the worst ones are when you pick her up from her nap and you're carrying her downstairs and she drops a huge spit up bomb on you when you're least suspecting it. Because, really, should she be spitting up right before her feeding? No! But she does! She could have eaten four hours ago, but she'll still have a huge spit up anyway. Sometimes it seems better, but we're still not out of the woods by any means. 

The rest of the time, when she's not refluxing, Maddy is our go-with-the-flow, easy-going, very happy baby. She seems content to sit forever and play with the same toy. She's an observer of the world. She's interested in everything around her, but focused on one thing at a time, distracted by nothing. When you're holding her and talking to her, she doesn't look anywhere but in your eyes. This is so different than Sophie who would be turned around 180 degrees to see what's happening behind her. She's very sensitive to sound and often gets startled by things like the ice maker and moments of Baby Einstein, anything sudden really. No fireworks for us this year!

She's so happy! The other day Melissa and I were getting the girls into the car, which takes quite a while so we have Baby Einstein on for those in the seats already. Once we were loaded up, the two of us finally opened the doors to get in and found Maddy giggling and giggling. I guess she was laughing at the DVD player, but it was only on the menu screen, which doesn't change much and keeps playing the same short tune over and over. Maybe it was the music? I think we'll have lots of times ahead with her laughing at nothing much. How fun is that!

Maddy's not crawling yet, but she's getting on all fours and rocking and even moving backwards. She can sit independently.  I'm sure she'll be crawling any day now and then we'll have 2 girls after Izzy's lovely tubes! She's very talkative but it's mostly just vowel sounds with her mouth wide open. Today we were able to see Maddy's first two teeth which are about to pop through at any moment. It's very exciting, but she's not happy about it. Hopefully, they'll break through quickly! 

I hope you enjoy all her fun pics. Next up, miss Izzy.

Here's a "where they came from pic" to start it off.

You'll probably notice a trend in most of her pics.  I'm not going to tell you what it is but, you should be able to figure it out :-P

Yes, that's Selsen Blue above her eyebrows.  Not only is it cute, but it also helps fight occasional bouts with cradle cap.

We think she looks a little like Izzy in this photo

Probably one of Jeremy's favorite pics

I can't wait until she wants to snuggle

All babies get a little cranky sometimes

A minor eruption from Mt. Madelyn

She's so content to just sit and play

She has such beautiful eyelashes

Love. Her. Smile!

Sunday, June 24, 2012

Where Are They Now? Part 1--Sophie (by Meghan)

So sorry our posts have been few and far between! Hopefully, this week we'll catch you up on our little ones and you'll know why we've been so busy that finding time to write seems impossible! We had originally written this post as one, but it was so long we decided to break it up into separate posts. So for today the focus is dear, sweet, beautiful, crazy-lady Sophie. We had our 9-month well check at the pediatrician about a week ago and all in all three girls are growing, growing, growing!

Initially weighing in at 2 lbs. 15 oz. and 15.5 in., she was less than 3% on the charts. Last week she weighed in at 20 lbs. 3 oz., 75% for her age. Her most recent height, 27.5 in., is 40% for her age. She's taking us into a new, unknown horizon of parenting. Not only is she growing, but she's cruising through her milestones as well. As of today, she's crawling. About a week ago she started crawling, but it wasn't fast or purposeful. Now, she is a woman with a mission, which usually involves getting close enough to Izzy to play with the IV pole or any of her tubes as well as the play station as many of you witnessed. She's trying to walk already too, frequently getting into a downward dog position and attempting to pull herself up on everything. She's not quite strong enough yet, but I can tell it's around the corner and I'm scared! :)We finally started some serious baby proofing this weekend. Our living room is now equipped with a square gated area we like to call "Baby Jail" and a gate between the living room and the kitchen. We've got a lot more to do. Any advice about this stage or baby proofing must haves from other parents out there is gladly welcomed!

As you may guess from this behavior, Sophie is our crazy lady. She is out of control all of the time and I love it! If we take to long to feed her she arches and screams and fusses until she gets her way and she's back on the floor playing. If we walk away, she cries and cries until she sees us come back into view. During the crazy evening hours, when the others are relaxing and watching Baby Einstein, Sophie would like to be doing anything but. She wants to be with us, doing what we're doing. Part of whatever is happening with mom and dad. So she helps do dishes in the baby Bjorn, sits by me in a highchair and eats fruit or puffs while I talk to her. She is a high maintenance momma, but I just love her curiosity and the aggressive way she goes about life.  I can only imagine what life will be like with her in the stage where they're mobile, but not listening to the word "no."  Please pray for our survival because if it comes down to us or Sophie, my money is on her :)

Her talking is sounding more and more like talking every day, but she doesn't have any words yet. She recently had her first two teeth pop through and a few others feel as though they'll be close behind. She also recently started mimicking me. I'll do something then say, "You do it." Then she does it too and laughs. Then if she catches my eye later she'll smile and do it again with a look that says, "Hey Mom! Look! I can do it!" I smile and clap and she laughs and laughs. It is amazing to start to feel like we're communicating. So soon they're going to start understanding bits and pieces of what we say. I know all kids do it, but I never imagined my babies who almost died and were so small at birth would get this far. Each day is becoming more and more fun as well as more and more exhausting!

We attached lots of pics so you can see how she's growing.  We hope you enjoy them as much as we do.  Check back in a couple of days for updates on Maddy and Izzy.

We decided we'd start with a "Where They Came From" photo of each girl.

Sophie, trying out the "quad" table we picked up on CL.

Getting ready for a day at the beach!

Strawberries are her new favorite fruit.  Can't you just feel the intensity in her eyes?

She finds ways to keep herself busy until the next strawberry is loaded.

"Why yes, you can tempt me away from sucking on this plastic bar for another strawberry."

She was practicing for her rehearsal as Spiderman.  She was really into the part.

Even superstars get cranky from time to time.

Oh, how they're so easily distracted at this age.

Notice anything "wrong" with this picture?

Believe it or not, she was actually extremely angry that we wouldn't let her play with her poop.

And to top it off, the cat took advantage of all the confusion and helped herself to some of my sandwich.