Lake Louise: 8 Months Old

I thought today would be a great day to post an update on our precious Lake Louise.

Ironically enough she is 8 months old today!

Over the past several days she has made tremendous progress.

It’s strange how one week she can be a “stuck” doing the same ole’ routine and then out of nowhere she is surpassing our expectations and reaching milestones that we thought were weeks away.

The last time I wrote about sweet Lake, she was ONE WEEK OLD.

Goodness gracious, what is wrong with me?

Now, I have kept up with her story through Facebook on her page!

I have been meaning to blog for a long time, but wanting to and actually doing so isn’t in my reality.

The past eight months have been wild!

Full of ups and downs.

You see Lake was in the NICU for a total of 10 weeks, exactly.

A full 70 days of worry, fear, joy, hope, numbness, weakened and strengthened spirits, so many prayers and most of all “survival mode.”

I believe we (especially me) have been in survival mode since the day we found out about Lake.

Our world was turned upside down in a matter of hours.

Luckily it wasn’t anything we couldn’t handle.

I am also very grateful for the way things have turned out.

Yes, Lake was born with a heart defect.

Yes, she had open heart surgery at two days old.

Yes, she had complications from drainage and had to be put back on the ventilator.

Yes, she had a stroke at some point in the first two months of life.

Yes, she stayed in the hospital for weeks.

Yes, she is behind in milestones.

Yes, she had a second surgery that put her back in the hospital for another week.

BUT….

SHE is being healed… through every storm she has had bright days to follow.

She has now had more beautiful days, than dreary ones.

She has overcome many of the storms.

She is doing AMAZING and blessing our hearts with gratitude and joy.

Our sweet Lake has endured more than we have… who am I to complain about things being rough?

Why should I feel bad that I have to go to Cooks “again?”

I get caught up in the “me me me” game.

I have photos to edit, I have kids to pick up, I have to wake so and so up from a nap – ugh!, I haven’t showered or put on make up, I don’t have time to cook dinner or clean or pop by my parents house or have a moment of down time.

Let’s be real for a minute:

This story is NOT about me… this journey is not mine.

This journey is HERS and I am walking down this path hand in hand with her.

Every time I go to Cooks, sweet Lakey Lou is pricked, poked, examined, held down for x-rays, and on a cold examining table.

Yet, this baby still smiles at mommy.

She is finding the good – the joy – the simple moments.

Lake can overlook the bad, thank God!

She can forget the darkness and focus on the light.

I must do the same and pull us both up by our bootstraps and embrace the GOOD each day brings.

She brightens my day, that is for sure.

With her big ole’ blue eyes, which are the first thing everyone notices about her!

Recently we found out that Lake has a blood mutation that makes her more susceptible to blood clots.

The medical term is:  Prothrombin 20210 Mutation (Factor II mutation)

We have started her on lovenox shots twice a day.

She has gotten used to them, which I figured she would and rarely cries with each shot.

I am so grateful for these medicines and doctors.

Lake recently started Physical (PT), Speech (ST) and Occupational (OT) therapies.

OT was a breeze and we will not have to see them too much, at this point.

Lake is really doing well in that department.

As far as PT, there are some things we notice about her body that will need to be “fixed.”

We go to PT once a week at an outpatient facility.

At 7 months Lake was not rolling over, didn’t enjoy tummy time, and wasn’t standing.

She has slight torticollis from being in the NICU bed for so long.

Her left neck tendons are very tight and cause her to favor certain angles and sides with her head movement.

Most likely because of her stroke (on the left side of her brain) her right side development could be effected.

When we started therapy a few weeks ago she was not standing, at all. I could not get her to put weight on her legs.

Typically small infants have the natural instinct to put weight on their legs, but not sweet Lake.

Edie and Parker’s school were gracious enough to lend us a bouncy toy so she can learn to put weight on her legs and play!

I think this has helped her learn that she CAN touch her feet to the ground.

We also do joint compressions to stimulate the brain and then I place her feet on the ground to feel what it’s like.

In therapy we wondered if she may have sensory issues, perhaps she doesn’t like the way the floor feels on her feet.

Believe it or not a week ago, while we were on vacation in Branson – she started standing!

It was such a wonderful moment for us, the missing links are starting to disappear.

We do need to focus on her right foot. It will roll up and perhaps she is having sensory issues or isn’t quite sure how to flatten it.

*Remember stroke happened on the left side, so this isn’t a surprise.

The other day she had both feet up while she was standing and was basically on her heels, so it wouldn’t surprise me if it’s all about the way the carpet felt on her feet. 🙂

I also noticed she was gagging on most foods I began feeding her.

I wonder if this is another “sensory” issue.

My other children did not gag like Lake does.

Speech Therapy comes to our house 2-3 days a week.

We are primarily working on getting Lake to take a bottle.

I was really worried she would aspirate. She was tested and confirmed as having a “swallow disfunction” in the NICU before she left.

I have been a bit fearful of forcing the bottle on her and felt like she needed professional help.

She has made SUPER progress in the last week or so!

Lake took down 2 ounces in a matter of minutes on Friday and Saturday.

She is also wanting food like crazy.

Just last week we were having problems with Lake eating off the spoon, she wouldn’t really open her mouth for it.

Today she is eating like a “normal” baby. Ready for more after each bite.

She will also cry when I take the bottle away, where a week and a half ago she was crying if we gave it to her!

Seeing Lake progress this quickly is so exciting and encouraging.

Not only is she eating better, but she is trying to sit up in her baby swing and practically trying to roll out of it (scary!).

We are now in the “don’t leave Lake in the middle of the bed” time period.

Woohoooooo!!!

We will see the cardiologist next week and see how she is progressing and how her heart is fuctioning.

I am hopeful that her two surgeries will prepare her for her third surgery and set her up for success long term.

As Christmas is around the corner, I cannot help but think of how magnificent this crazy year has been.

As a mother – I have been frazzled.

As a business owner – I have made mistakes and not been as focused as I would like.

As a wife – I have been cranky and often times needed to be rescued.

As a friend – I have been even more out of touch than I was before baby #4!

However – as Lake’s “BM(ommy)F” – I have done a darn good  job at loving her and standing by her side every second of the day.

I am (right now) the most important person in her life.

I don’t want to make this post about “me.”

BUT I am her constant companion.

Paul works every day and I don’t drag him to appointments with us – he has a duty at his job.

This has allowed such a special bond between Lake and me.

This is the best gift I could have.

The gift of loving on, encouraging, and having the most meaningful moments with my sweet heart baby.

She trusts me so much and I can soothe her in an instant.

Could I ask for anything more?

(Well, aside from her being healed of course!)

I thought you guys would want to see her latest milestone – Lake in the high chair playing with toys and drinking a bottle!

Merry Christmas friends, God has opened our eyes – this is what Christmas is all about.

We love you guys, thanks for reading!!!

From the Jenkins and our “real baby” Lake Louise!