Thanks Aunt Codie

 Codie watched Maryn for us every Monday (and one Wednesday) in April. We are so thankful for her generosity and patience (hanging out with a refluxy baby from 7 until 5:30 all of those days wasn't easy) which allowed Mike to get back in the office an extra day a week. Previously he had been home with Maryn two days a week. 

Maryn plans to wear her purple (Codie's favorite color) Baby Legs on Monday as a special tribute. Thank you, Codie.  : )

All Done - with a Smile

Maryn has had a string of good eating days. Here she is shortly after finishing 6 oz this morning! Most feedings have gone well and the reflux pain has been somewhat limited. For those of you unfamiliar with silent reflux it's essentially bad heartburn without the spitting up or vomiting typically seen in traditional infant reflux. They say silent reflux can be more damaging to the esophagus because the acid burns the lining for longer ... on the way up and again as it comes back down. Poor baby.

Of course past experience has taught us that just when we think things have taken a turn for the better ... we are proven wrong. As always, we remain cautiously optimistic.

Pricey Baby Toy

Maryn enjoys my camera. A big smile sweeps over her face when it makes an appearance. Fascinated by the flash and reflective lens, I just know she wants to get her hands on it

"hmmm ... how do I  get that shiny toy to my mouth? It needs a touch of baby drool!"

4 Month B-Day Photo Reel

Physical Therapy

Low muscle tone has been another of Maryn's challenges. She has been seeing a physical therapist since she was born. I'm sure many of you are wondering what a physical therapist does with an infant. I can assure you ... they do a lot! Kristen, Maryn's PT, typically works with her for an hour at a time, assessing her physical development from week to week and teaching us how to help her isolate and use her weaker muscles. She is such an amazing person and Maryn really responds to her calming, positive manner. 

Some PT appointments go better than others. Some days she is fussy or just not interested in engaging for the full hour. We try our best to schedule her day so she's well rested and fed for her 4:00 appt, but this is not always possible. 

Yesterday Maryn had an outstanding PT appointment! In addition, she played by herself for about 40 minutes during the day! Here she is reaching for her black & white mobile. It's a bit blurry because it was dark in the room and I didn't want to disturb her by using the flash or go to the trouble of setting up the tri-pod.

Back to PT--Kristen was excited by the huge gains Maryn has made with head control. Maryn still has a tendency to hyper extend her neck because of her reflux.  Kristen was delighted to see that Maryn was able to hold her head up and maintain control and balance when moving from side to side. Kristen said that she was now choosing to drop her head back where before she simply couldn't control it and would throw it back when she arched her spine. The exercises we have been doing are working! Obviously the nutrition is key here too. Her muscles can't continue to strengthen if she doesn't start gaining more weight. 

We also need to work with Maryn on using her core muscles and legs to help her turn in preparation to roll over. Right now she hyper extends her head and arches her back which gives her a larger surface area from which to push off. She needs to learn to use her abdominals and legs to do this properly or it will negatively impact her ability to bring herself to a sitting position later. She described exercises we can do to work on this.

One of the most reassuring things Kristen saw during the appointment was Maryn grabbing toys and bringing them to her mouth. She has just started doing this in the last week and Kristen said this was on target but also very encouraging. Babies with bad reflux have a tendency to make negative associations with their mouths due to the pain they feel when eating. She often sees infants with reflux who don't want to bring anything near their mouths which causes further developmental delays and issues. So it's good to see that she is open to and interested in exploring with her mouth. We need to do our best to encourage this.   

Swallow Study Results

Today was the second swallow study. Mike and I both accompanied Maryn to Hope Children's Hospital for the study, and I'm so glad we did! Mike had initially planned to take her alone, but Maryn was having an AWFUL day and we were worried she might not eat at the study at all. We decided it would be less stressful if we were both there. If one of us couldn't get her to eat, perhaps the other could. It's also so much easier to remember to ask all of your questions when you have your partner with you. 

Thanks to Connie Uhlken and everyone at the SON for being flexible and helping out with re-arranging my student appointments at work today. 

The two SLPs who ran the study were both a wealth of information. I fed Maryn while Mike watched the monitor with the SLPs and the radiologist. First we fed her the thickened food. Maryn uses a little more of her jaw muscle than is necessary for an effective suck. They asked me to provide chin support .. and then - perfection! They talked us through the difference and pointed it out to Mike on the screen. He saw how the chin support forced her to move her tongue through a wider range of motion instead of relying on the jaw. They assured us she would do this on her own soon. Probably soon after she had complete head control. 

The SLP and a couple of the nurses at Good Samaritan Hospital had showed Mike and I how to provide chin support prior to Maryn's first swallow study. But no one discussed why it was important. I assumed it was to help her focus and prevent milk from spilling out of her mouth. When mentioning this to Mike today he said he had thought it was to help her initiate sucking. Then after the first swallow study there was no more talk of chin support. We thought it wasn't needed anymore. It just goes to show, you can't assume -- you have to ask! 

Then we tried the non-thickened formula. And although it didn't look picture perfect like the previous bottle, she initially did well. And then ... not so much. Micro aspiration. She didn't cough or anything ... but I could see it in her face. She wasn't pacing herself and got into trouble. They asked me to pace her- 4 swallows then rest. She did fine with this and was able to swallow safely. 

Once the study was over we talked a bit. They recommended that we keep thickening her feedings to protect her until the muscle tone and head control were there. In all honesty, even if they hadn't suggested this, we probably would have kept thickening feedings because her reflux could get worse if we stopped. They recommended a follow-up study in 6 to 9 months but indicated she should be seeing an SLP regularly for therapy. I mentioned our continual struggle with weight gain. Silent Reflux was certainly the biggest obstacle, but the thickener took up volume without contributing calories. They suggested using rice cereal instead of the simply thick. We explained all the problems we had with this method earlier. Her nurses in the NICU, trying to be helpful, would cut holes in 2 or 3 different nipples before she was able to get any food. Too small of a hole and the nipple got "gummed up." Too big and it defeated the purpose of thickening the food. It had to be just right, but by the time it was .. Maryn was tired out. And because they had to use a different nipple each time she ate, we would go through this at every feeding! 

"Did they crush the cereal?" Auh, no. They explained a variety of ways to turn that cereal into dust so it was an effective thickener, but not too flaky to cause clogging. They also recommended a nutritionist (Trish also suggested this earlier). Someone who could show us how to get the consistency right, and provide suggestions/direction related to her feeding plan. 

We discussed her silent reflux. We talked about her good days and her bad days...the stress it causes her and the entire family...how she often just refuses to eat..how she associates eating with pain. Sometimes she'll suck strong right away because she's hungry only to stop after an ounce screaming in pain, refusing the rest of the bottle.  We talked about the possibility of upping her meds and/or their thoughts on a G-tube. 

We have a lot to think about this week. Next Tuesday Maryn is scheduled to meet with the GI doc again.

Startled - Before & After

Maryn is used to Maddie barking but occasionally the pup will catch her off guard. I happened to have my camera aimed on such an occasion. Her eyes get really big and her expression is so sweet. "It's okay baby, that was just Maddie ... again."

Maryn & Moma

Head Control

Slowly but surely ...

Happy Easter!

Baby Michael & Baby Brigit

Two collages ... the first one is of Mike and the bottom one is Brigit. Do you think Maryn looks more like her mom or her dad? You can click on the photo for a closer look. Vote anonymously in the upper right corner of the blog.

Sweet Dreams

CatNap

Sleep has been interesting. Maryn does not enjoy sleeping on her back. The NICU had her bed elevated and she slept on her stomach most of the time with an occasional side lying position thrown in for good measure. In fact the doctors recommended the side lying position for home, but it's hard to get her to stay put. She inevitably ends up rolling onto her back (even when we use the wedge) and waking up shortly there after. This is part of the reason the Baby Ergo played such a big role in her first few months. She simply wouldn't sleep more than 15 minutes or so on her back. In the Ergo...she'd take a proper nap. 

Now that she's getting older, though, we recognize the need to get her comfortable napping on her own. She'll be in daycare starting in June (4 days a week - that's going to be hard), so we're doing our best to turn this around before then. 

The last couple of days we've tried having her nap on her stomach. The monitor is on and because of her laryngomalcia we can hear her breathing. So although I had a lot of anxiety about it in the beginning (still do a bit)--it's working. She will sleep for 1& 1/2 to 2 hours! The longer naps make for more of a structured day, although feeding issues still get in the way of creating a real schedule. 

At night, she's still sleeping in her car seat for the most part because she needs to be elevated for 30 minutes after she eats and she likes the contained feeling. But this can't go on forever. One thing at a time I guess.

Baby Legs

These little leg warmers (Baby Legs) are so cool! They keep her legs warm and will help protect her knees from our hard wood floors when she starts to crawl. Yes, I realize crawling is many months away, but they are meant to grow with her. One size fits most babies and toddlers! It's also a breeze to change her because they don't go over her diaper.

Frosted Lucky Charms...

...are magically delicious! Does this photo remind you of a certain cereal from childhood? 

It cracks me up. Her fair skin (granted it's not that fair -- my flash was washing her out a bit) and red hair ... what a tiny baby and a cute little smirk.

She's quite ticklish under her chin ...our little leprechaun.