Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

NICU Day 29 October 13, 2010

Filed under: Lila,Updates — Aimee @ 7:03 pm

We continue to count our blessings and thank our lucky stars for Lila and all that she’s overcome in such a short time. In hearing the doctors and nurses talk about her miraculous improvement, it’s apparent to us that we never really grasped just how sick our baby was when she arrived. We were just so thrilled that she was alive. Maybe we were in shock. Maybe it was by God’s grace that we didn’t fully comprehend the magnitude of her issues.

There’s so much to report since I last posted. Between twice-daily trips to the NICU, house-hunting and pumping, I’m finding it hard to carve a few minutes out of my day to update the blog. I will try to be better about that as I know there are so many of you anxiously awaiting the next Lila report.

Lila is 4 lbs. 15.9 oz. today. She’ll likely hit the 5-pound mark by tomorrow. She’ll outgrow preemie sizes soon. Doll clothes anyone? She changes so much every single day and I finally understand a parent’s yearning to be there for every little moment. Yes, I could stare at her all day long. I swear she gets cuter by the minute.

Lila made the big move from the isolette to a crib last week and it’s made all the difference in how we’re able to care for her. We can pick her up and hold her when we want to, we can reach down and kiss her head (which we do every five minutes, I swear), we can change her clothes and diapers without having to reach our hands through two tiny openings, we don’t have to look at her through plastic. In just a few short days Lila’s pimped out her crib with teddy bears from Auntie Meg and Bubbie, a quilt from London, and a mirror and mobile from Mommy.

She’s up to 40 ml of breastmilk every three hours. She took her first bottle last night and did really well, which is a huge milestone. Feeding is really the last hurdle that she needs to overcome before she gets to come home. We continue to work on breastfeeding. The trick is catching her when she’s awake, which is another reason I’m spending so much time with her.

Ok, now to the tough stuff. Remember a few weeks ago when I wrote about some difficult news we’d received? Without going into too much detail, I feel I’m ready to talk about it a bit. About a week after Lila was born she had a brain ultrasound, mainly to check for hemorrhaging. There was no hemorrhaging, but the doctor saw something else worrisome regarding the ventricles in her brain that required a follow-up ultrasound a few weeks ago. She had a third scan yesterday.

To make a long story short, Lila developed some cysts in her brain, likely caused by insufficient blood flow and oxygen supply to her brain. The cysts indicate there’s been some brain damage. This is the most common brain injury seen in preemie babies. How is this likely to affect Lila? There’s no way to tell for sure. Add this to the list of things that we don’t know how it happened or how it will play out. Without making any promises, Lila’s doctor doesn’t believe this will affect her cognitively. Of course, there’s always a chance, but she’s more likely to be affected physically. It could take her longer to reach major motor milestones. She may not sit up until she’s 10 months old. She may not walk until she’s two. She may need braces to walk at first. She will likely need physical therapy to overcome spasticity, or, stiffness in her legs, hips, etc. The damage in her brain could affect her more severely, but I’m not willing to accept that. All I can say is that she’s already shown us what a strong girl she is and I won’t put it past her to overcome a million more obstacles. She will lead a full life and will be given every opportunity she could ask for and more. Indeed, she has a purpose in this life.

Last day in the isolette

Cozy in her new crib!

First bottle

Pimped out crib!

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4 Responses to “NICU Day 29”

  1. Megan Says:

    Regardless of what the outcome might be, Lila has two very strong and loving parents by her side. And I can only imagine she’ll take after the two of you! Give her a kiss for me, hopefully I can make it up there for my weekly visit soon. I only wish I could make it up there more often!

  2. Ma T Says:

    Lila is a strong little girl. She has two wonderful, loving parents, and a world of family who love her so much, and tons of caring friends who already feel like they know her through your blogs. Whatever obstacles may present themselves, we will all be there together. Lila does indeed have a purpose in this life. She will grow strong. She has already proven that by how wonderfully she has done since birth. She gets cuter every time we see her, and I know that will continue. Remember, we send her, you and Tyler our love every hour of every day, and really wish we could be there more often. We love you.

  3. Sheri Says:

    First of all Congratulations on the birth of your daughter.

    Being the grandparent of a preemie I remember all of this too well. Please take it day by day and be patient. Things change so fast and in no time your beautiful little girl will be home with you!!!

    You are amazing parents and I will continue to pray for you. Everything will be fine. Your little girl is SO BEAUTIFUL.

    Healing {{{hugs}}} and prayers to all of you!
    † † † † † † † † † † † † † † † † † † † † † † † † † † † † † † † † † † † †

  4. Jessica Gessner Says:

    I didn’t know how to start this response b/c there are too many things I want to say. Look at all the progress Lila has made, she’s in a crib, getting a bottle and holy cow she is probably 5 lbs by now! GO LILA GO!! She is your little miracle and you & Tyler have been so strong for her. All three of you have overcome more obstacles than some people ever have to go through. You are all fighters and I have no doubt that Lila will overcome whatever is next for her & down the road. She will do it in her way and in her time. She has already shown those doctors & nurses that she is one stubborn little girl & quite the fighter =) There is no doubt that Lila is her for a reason and she is going to continue to make you fall more and more in love with her through the years!

    The strength that you three have shown these past months is incredible and I’m sure has only brought you closer as a family. Stay strong Aimee & but be gentle with yourself. Don’t forget to take care of yourself so you can keep being so strong for Miss Lila.

    Big hugs!
    Jessica


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