Saturday, November 29, 2014

Reflux Sux

12 Weeks

We had a really bad spit up episode this morning that shook me. Hannah was upright after her bottle for 30 minutes and I laid her down to kick around and wiggle. After a bit, I picked her up for being a little fussy and she started gagging/heaving and spitting up yellow bile, arching her back and crying inconsolably. It. Was. Awful. 

This is the worst I have seen it, with a spit up maybe once a day in the past week or two. 

The signs today were a red flag for reflux. SO many kids with Down syndrome have reflux due to their floppy esophagus. Eventually they grow out of it once their esophagus’ grow. 

I really don’t want to put her on prescription meds, but seeing her in that pain was unbearable. I’m researching some homeopathic options and may talk to the medical professionals if it’s safe to go that route instead of prescription meds : (

Blargh!


Tuesday, November 25, 2014

How Am I Doing?

12 Weeks

An acquaintance with another bitty baby asked me how I was doing since I mostly talk about the girls here - oh yeah - ME! 

I’m… good. Better than okay but not awesome. It’s a day-to-day thing. Mondays seem to be hard because Tim goes back to work. I tend to have a lot of anxiety nowadays due to Hannah not eating her bottles anymore and never seeing the end in sight with the G-tube. I’ve also become more edgy now that Hannah has started to have gagging spit up this week. We increased the amount of milk she gets and I guess her stomach hasn’t stretched to accommodate so she has to be upright for like 30 minutes after eating. I tried doing tummy time with her this AM after 20 minutes and she gagged and spit up. It was awful. 

I’m also anxious for my sitter - I hope I’m not putting too much on her with Hannah and these tube feedings. She’s calm and patient but she’s also looking after at least 3 other toddlers; her own two kids and Nora. I have total faith in her but don’t want to add pressure to her. 

Oh, and keep Hannah healthy for heart surgery in January. At a sitter’s. During cold & flu season. 

So I think come February after we’ve made it through this next hurdle, I’ll need some kind of celebration. It will definitely involve a bottle of champagne. 


Mini Milestones

12 Weeks

Literally at the 12 week mark, Hannah has slept through the night two nights in a row now. Good for Hannah, great for Tim, but I’m still the milk producer : P However, since I’d read that your supply is established at 12 weeks, I decided to drop a pump last night and only wake once. I can happily say it worked out. 

Pumped at 9:30pm, 1:30am and 5:45am. The amount of milk was the same as if I’d pumped twice in the night. So happy to get that extra bit of extended sleep, now if I could just not toss and turn between 4-6am! 

I also checked my work email yesterday and have meetings be scheduled for next week already. I go back next week. Holy time warp.

This is going to be me at work - “Yes, let’s leverage those assets.”
:: eyeroll ::

Friday, November 21, 2014

Exclusive Pumping

11 Weeks

Nursing is hard work. Exclusive pumping might be harder… or the two paths are like apples and oranges. 

I’ve been pumping every 3 hours since September 1st. I wake two times every night to keep up my supply. It’s. Rough. I’ve read that by week 12 your supply is established, but I’m just staying ahead of Hannah. My freezer stash is not much. I’m fairly certain we’ll be supplementing with formula shortly after I go back to work since Hannah’s volume intake is now allowed to go up again. I’m okay with that. 

With all the hurdles we’ve had, a toddler to keep on a short leash and going back to work full time, I’m already proud I’ve been pumping for almost 3 months. My original goal was 9 months. I think at this point, 6 months will be a great goal. That should put us to a bit after Hannah’s heart surgery.  *Oh yeah, I emailed our cardiologist and he confirmed my suspicion that surgery will be mid to late January*

I’d wanted to give nursing a try…we try once a day and Hannah seems to get it; she has a good grasp of suck/swallow/breathe. Again, she’ll never get the amount of calories she needs from me to bulk up for heart surgery. She’s having a hard enough time with bottles, I don’t want to make her master nursing at the same time. I’m okay with that. It’s been a rough road and I’m giving myself a break with a 6 month goal. 

It’s been interesting “joining” the exclusive pumpers club. A lot of women have preemies or had a hard time with nursing. I joined a Facebook page for EPers. Everyone talks about ounces pumped, how many times they pump per day, their freezer stocks, etc. It’s a whole new world. There was one woman today who posted that she’s been pumping for 46 MONTHS. Oh my Gawd. Did you know women drink Ovaltine to up their supply due to the malt in the drink? So many interesting facts you guys! 

I’m almost halfway to my goal - pushing on to February! 




Another Busy Hannah Week:

11 Weeks

We had 3 appointments this week - 

Cardiology: Hannah now weighs 8 lbs 12 oz - go girl! The cardiologist was super happy with her weight gain. They want babies to gain 18-20 grams per day going into heart surgery and Hannah has been gaining 30 grams per day. She’s also met the “safe zone” in weight for open heart surgery, so that’s good too. 

So despite our regression in oral feedings, weight gain is more important right now. 

Mid December we go in for our pre-op sedated [yuck] echo, thyroid bloodwork and a chest X-ray. I should have asked, but if we’re getting a pre-op echo, it leads me to believe surgery would be in January - ? Don’t quote me on that. 

Speech Therapy: Hannah hasn’t finished a whole bottle by mouth since early October. It’s frustrating, but common for heart babies. Once we introduced more formula into my milk, she started having less poos and having a harder time finishing her bottles. Our Speech Therapist said this is very common for babies going into heart surgery to regress with oral feedings. We have found however, that Hannah eats more by mouth when she’s half asleep; not thinking about it! Interesting. 

Help Me Grow: Just came out to see how Hannah is doing today… I basically fill them in on how she’s doing… they still aren’t super involved yet because motor skills won’t come into play until closer to 6 months.  

Keep our Warrior Hannah in your thoughts as we keep on the upward path!

Thursday, November 13, 2014

The Miracle Cure

10 Weeks

So Hannah had a clogged tearduct for the first weeks of her life. I’d taken a warm washcloth to it which is what the medical professionals had suggested. However, my friend Emma [who is all-things natural] said to try breast milk. Ta-daahhhh! No more goopy eye. 

I’d also used it on Nora’s baby acne and cradle cap which both worked well too. 

So if you know anyone whose baby needs a beauty treatment - suggest it!

Photo taken by Nora!

Monday, November 10, 2014

Hannah’s 2014 Group

10 Weeks

As we have slowly introduced ourselves into the Ds community in Cincinnati, we were added to the 2014 group - babies who were all born this year. It’s a nice small group of parents who get together now and then to form camaraderie around our children. While we love our family and friends, it’s even better to talk to other parents who are starting along the same path as us. 

We had a group social yesterday afternoon. Unfortunately, Nora has had a nasty cough so Tim stayed home with her while I took Hannah. The new Ds headquarters for Cincy are in Norwood now. There were maybe 15 people there - not everyone could make it, but such a small number makes it easier to walk in not knowing anyone, only their faces over Facebook. 

It was fun meeting the other parents - all super cool and was nice to talk to people who understand. We all talked about our diagnosis, what therapies our kids are having, any of their medical hurdles. Everyone “gets” it. 

I even met an adorable 15-mo old who is now crawling which was good to see what a “delay” is really like. She’ll walk eventually : )

It was a nice meet-up and cool to see who Hannah will grow up with in our community!




Friday, November 7, 2014

Hannah - 2 Months!


9 Weeks

Hannah is 2 months old! We had her 2-month well baby check up on Tuesday. I was pleasantly shocked that she’s 8 lbs and 21" long! That’s two inches longer than her 1 month - go girl!

Babies and children with Down syndrome have their own growth charts, so among her peers, Hannah is about 25% on weight, 50% on height and 35% on her little peanut head.

She got her 4 immunizations and one oral. It’s brutal - I remember with Nora, she went silent from screaming and I cried too. This time, Hannah cried for a short time and I knew what I was facing, so no tears here!

We’ve been doing tummy time a bit modified - on a travel neck pillow - to elevate her G-tube away from the floor and keep pressure off it. Pretty cute faces!

Then today was a small milestone - we moved from the G-tube to the Mic Key button. It’s a lower profile and less of a nuisance in general. The surgeon doesn’t want children under 2 months having them [can’t remember his reason]. 

Our surgeon actually did the swap IN the exam room - it was a little crazy - he pulled out the G-tube and it gushed a bit with stomach contents - *yak* Hannah wasn’t a happy camper and when all was said and done she zonked out. 

Also today, she weighed 8 lbs 4 oz!

Then this afternoon, Help Me Grow stopped by along with a physical therapist. She taught me some different tummy time positions and some side-lying positions. Essentially, Hannah’s limbs want to frog out and we want them midline. We also of course want her neck strength to increase. 

They were already impressed with Hannah’s head strength, movements and her eye contact. Go Hannah! 

It’s been a busy week for our baby girl - she’s making strides : ) 

This is not Hannah, but this is what her button looks like















Thursday, November 6, 2014

Halloween 2014

The Kron girls enjoyed their Halloween - well, Nora did. Nora had picked out her costume a while back from our favorite childrens’ second-hand store in West Chester, Little Sprouts. She wanted to be Minnie Mouse and the dress was $10. Nana provided the ears! 

Nora was geezed to go trick-or-treating. We tried to bundle up as best we could in the low 50-degrees. We hit the street right at 6pm. Nora talked the entire time, just bubbling with excitement. She said “Trick or Treat!” to everyone and thanked everyone for the candy. My big girl asked to go home after 5 houses - perfect! 

We may have a bit of a candy monster for a few days; but to give her that excitement and enjoy that evening with my little girl who is a super challenge now days - worth it. 




Tuesday, November 4, 2014

Family Filled Weekend

2 Years, 11 Months
9 Weeks

This past weekend Aunt Molly and Uncle Jonathan were in town for a quick weekend - we were happy to spend most of our time with them. We even celebrated an early Thanksgiving since they were home - yum!

Nora and Hannah’s older Kieffer cousins are so good with the girls - Bobby even asks to hold Hannah - awww!