November 30, 2012 by Jolene

Let the festivities begin

Even with my MIL here as back-up while husband was out of town, it took all week to get our Christmas decorations up. They are scaled back some this year, but they are up, and it makes me happy. It also makes my children happy, which is even better.

To be clear, the nativity set only stayed like this for a few minutes before the pieces were strewn about the house.

Photo credit goes to MIL, who got this sleepy early-morning moment on camera.

I can’t get enough of that soft Christmas light glow in the evenings (which begin very early this time of year here on the edge of the Central time zone). I notice stores are carrying more LED Christmas lights every year, but I can’t do it. The glow just doesn’t seem to have that same warm quality that to me is more than half the point of Christmas lights. I know it’s not very green of me. (My Christmas cards this year are made from recycled paper. Does that make up for it? No?)

This Wednesday, we took a fun outing to see the Christmas decorations at the Opryland Hotel here in Nashville, and then we took Corin across the street to the mall to ride the little train they have there. The Opryland is quite the local attraction, for those who haven’t been there, especially at Christmastime. I was not sorry to miss the crowds that throng as it gets closer to Christmas.

Katie (SIL), MIL (also known as Mimi), Lina and Corin on a little boat ride around one area of the hotel

Someone is learning quickly how to take full advantage of his Mimi’s willingness to fulfill his desires. See the car and the cookie. (And forgive the atrocious haircut. Mommy has decided henceforth to hang up her very dull shears in favor of the professional’s touch. Yikes.)

Today, we had our third visit with Lina’s early intervention teacher, Holly. We love Holly! She is pretty and kind and so encouraging and helpful. She brings a mother’s perspective, as she has FOUR of her own kiddos. She also has her own personal experience with special needs. We are continuing to work on improving feedings, and Holly has shown us some massage techniques and tricks and positions for encouraging muscle development. I think these visits really are going to become highlights of our weeks.

November 23, 2012 by Jolene

Grateful begins and ends here

It’s my favorite time of year. I wanted to get the Christmas tree up today, but this two kids thing means somehow I never get very far into my to-do list. Soon, twinkle lights and garland, soon we shall meet again.

We spent Thanksgiving here in town with my parents and my brother, sister-in-law, nephew and grandmother. My dad’s 60th birthday is also this weekend (sorry, dad, hope you weren’t wanting to keep that under wraps!), so we celebrated that, too.

I could make a long list of things I am thankful for. I could wax eloquent on all the reasons I am so very grateful. There are many. Instead, I’m just going to share pictures of the ultimate reason I am thankful: FAMILY. My grateful truly begins and ends here.

Corin and cousin Benjamin had a blast together.

Monster truck races on Grandma and Grandpa’s back deck

75% was the best we could do for everyone looking reasonable.

My babies

Why yes, that entire stick of butter DID go in the mashed potatoes.

Our first year with a kids’ table

Pretty good lungs for an old man

November 14, 2012 by Jolene

That sweet face – 2 months

Eline at two months

Awake more during the day, sometimes only dozing between feedings but generally napping at least an hour before the next bottle
Nighttime sleep varies quite a bit, anywhere from 4 – 7 hours
Continues to make more eye contact and notice more of her surroundings
Has given just a few precious, full-on smiles but mostly gives her bright-eyed almost-smiles
Generally a good-natured baby who only fusses when she needs something (diaper change, sleep, food)
Holds her head and sometimes chest up off the floor for 10-15 seconds and lifts her head and torso off mama’s shoulder for short amounts of time
Still loves to be held and cuddled, but also loves the swing, which has made mama’s life much easier (Thank you, Jessica, for the loan!)
Takes 4 1/2 to 5 oz. of breast milk or half breast milk/half formula six (occasionally seven) times a day, but sometimes goes very slowly (anywhere from 30 to 50 minutes per feeding) and continues to leak quite a bit at every feeding
Is terribly GASSY!
Has outgrown many of her newborn size clothes and is beginning to wear her 3 month sizes
At her pediatrician appointment today, weighed 9 lb. 4 oz. and was 20 1/2 in. long – small (10th percentile) but right on track for her growth curve

You are my sunshine

Already, I can’t imagine life without her.

November 12, 2012 by Jolene

Driven to the bottle(s)

After a series of stressful and frustrating experimentations, it appears we have finally found a bottle that works for Lina. To be clear, she still leaks milk out of her mouth as she drinks – a LOT of milk. It’s something we’ll be talking about with the early intervention teacher at our first therapy appointment this week. (It is thoroughly depressing to see her burp cloths soaked in my hard-won breast milk. Not to mention the laundry!) But we at least have her off the disposable nipples they sent home from the NICU, and she is able to latch appropriately onto the bottle and get enough to sustain steady weight gain. She is now just over 9 lb.

So, in case it’s helpful to anyone facing similar issues, here are the bottles we tried:

Disposable Similac regular flow nipples from the NICU (which we washed and reused for a good 5 or 6 weeks), paired with the Medela pump milk collection bottles – These latex-type nipples worked great for the first several weeks, but as she got bigger and stronger, the flow was much too slow. Feedings were taking an hour, and she was getting frustrated and tired trying to get the milk out of the one tiny hole. These nipples are not made in any other flow level. We tried poking larger holes in them with a heated needle but could not seem to get the size right and worried a bit about continuing to use what were supposed to be disposable nipples.
Dr. Brown’s glass bottles with newborn flow nipples – The shape is the same as the Similac nipples, but these are silicone rather than latex. She has refused these and any other silicone nipples. The texture seems to really throw her off.
Avent bottles (which Corin used) – Silicone nipples again, and a less familiar shape. Soundly rejected.
Playtex Nurser with Drop-Ins – This system can be used with either silicone or latex nipples. We tried both the slow and fast flow latex options. She did better with them than any of the silicone nipples, but these were extremely soft and a different shape than what she was used to, and she did not seem to latch onto them effectively. She had some okay feedings but was inconsistent and would have some really terrible ones, as well. We gave up on these after a few days.
Gerber First Essentials bottles and latex three-hole nipples – FINALLY, the solution. They are identical in shape to the disposable Similac nipples, so she latched great and took to them right away. The flow is some faster but not too fast, and feedings are down to an average of about 30 -35 minutes. Bonus: They are cheap! Three 5 oz. bottles were about $5 or $6 at Wal-Mart, and a pack of six latex nipples was maybe $3. Also, these are a standard size, so the nipples also fit on the Medela milk collection bottles and a couple of random glass Evenflo bottles we had on hand. Only downside: They do not seem to make the latex nipples in a fast flow, so I’m not sure what we’ll do if/when she outgrows the medium flow.

It was a difficult process, but thankfully we have something that seems to be working, and she is gaining weight steadily. We give her about 4 1/2 to 5 oz. six (occasionally seven) times a day. She is sleeping 5-7 hours at night. We have a pediatrician appointment on Wednesday, so hopefully he’ll be happy with her weight gain.

November 5, 2012 by Jolene

My hourglass sand

Today had its stressful moments. We are still struggling with Lina’s feedings. Finding the right bottle for her is an ongoing challenge, and it is so discouraging to watch my hard-won breast milk leaking out of her poorly-latched mouth. Meanwhile, Corin has begun resorting to ear-splitting screams to express his displeasure with time outs. We are working hard to establish consistent obedience, and it requires constant vigilance and endless patience.

But I didn’t sit down here to write about the inevitable frustrations of the day.

I just left Corin’s bedroom after laying my sleepy boy in his crib. As I sat in the rocking chair where we have spent so many hours, my nose buried in his still-damp curls, his body hugging mine, his lovey draped over my shoulder, I was overwhelmed – with love, with gratitude, and with a little bit of sadness. I realized: this time, this perfect moment, is so fleeting. Already, he barely fits in my lap. It won’t be long before he does not want me to rock him, when he is too grown up for lovey and nighttime back rubs. Soon, he won’t drop the “s”-es from the beginnings of his words, he won’t run with his legs pumping and arms swinging to the side, and he won’t thank Jesus for his toy lawnmower.

I thought about Lina’s tiny body, about the pleasure of watching her eyes light up as she explores my face, about her sweet newborn coos, the feeling of her face burrowing into my neck or her little hand resting against my chest as she sleeps.

I wanted to reach out and physically grasp this moment in time, to hold it and keep it from slipping away. I prayed a prayer of deep gratitude for the gift of these children, for these finite moments, for the acute joy of watching my little ones change and grow day by day.

Tomorrow, next month, next year will have their joys, too. I am usually a mother who looks forward to what lies ahead. But today, I cling to the sweet now. With all the exhaustion and frustration, I come to this evening full of gratitude, thankful that right now, my children need me, to rock, to soothe, to kiss, to feed. Tonight, I am just thankful to be their mom.

November 3, 2012 by Jolene

Learning to love Early Intervention

We met on Thursday with the coordinator for Tennessee’s Early Intervention program, which will provide Lina with regular evaluations, goals and any necessary therapies from now until her third birthday. Anna was lovely and so helpful in laying out realistic goals for Lina’s first year. We will meet with her once a month to review Lina’s progress and revise or add to her one-year plan (called an IFSP, which stands for something I have not yet learned) as needed. As an extra bonus, Anna turns out to be pregnant and seriously considering a home birth. We had plenty to talk about.

The first time we met with an Early Intervention contact to begin enrolling Lina, I came away feeling pretty down. I was being confronted again with the fact that our daughter is likely to struggle and fall behind, and it was hard. I felt edgy and sad the rest of the day.

This time, though, I found the appointment to be encouraging. Anna answered a lot of questions and helped us understand what would be realistic to expect for developmental milestones for a child with Down syndrome in the first year. It was exciting to think about Lina learning to sit, crawl, feed herself, maybe even say her first words. Anna was happy with Lina’s development so far, and I came away with a renewed confidence that my little girl is going to rock at a lot of things.

We’ll hear next from the teacher who will be our bi-weekly contact (probably going to weekly as Lina gets a little older) to provide the actual developmental support. I am looking forward to the appointments and feel grateful that we have access to these resources. And man, is it awesome that they come to the house. I like to think these are people Lina will really get to know as she grows, and that she, too, will look forward to these appointments.

7 weeks

A Dash of the Unexpected

a story unfolding

Monthly Archives: November 2012