Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 44 Part II October 28, 2010

Filed under: Lila,Photo/video updates — Aimee @ 5:15 pm

“When does Lila get to come home?” That’s the question everyone wants an answer to, and believe me, we do too. But apparently, crystal balls don’t exist in the medical field, so we don’t yet have the answer. We do know that she won’t be home this week or next week. We hope she’s home by her original due date of Nov. 15, but it’s possible she won’t be ready that soon, either. Crossing fingers and toes.

Lila’s doctor this week said she thinks Lila is likely to go home on oxygen. This isn’t ideal, but if it means having her home with us, I’m all for it. We’ll make it work. There isn’t anything new to report. She weighs 5 lbs. 15 oz.  We are still working hard on bottle and breastfeeding. At times, it can be frustrating, because every nurse has a different idea of what’s best when it comes to feeding. I’ve finally realized that I need to do what I feel is best. They keep telling me, “You know your baby best,” but up until this week, I didn’t believe it. How could I know my baby best when they are the professionals? But as I spend more time at the hospital (most of the day), I take pride and comfort in knowing that I really do know my baby better than any nurse or doctor ever could. It makes me feel good when the doctor asks, “How do you think she’s doing today, mom?”

So what do I know about my baby? I know that she is a fighter — we all knew that from the beginning, right? She also has a very sweet disposition; she’s curious of her surroundings; she likes the little aquarium mobile in her crib and fights to stay awake if it’s on; she’s an ambitious eater, but doesn’t quite have the stamina to finish a full feeding by mouth; she sleeps best on mommy and daddy’s chest; she enjoys her baths as long as she doesn’t get cold; she’s calm when she’s awake, but lets us know when she’s hungry; she requires less oxygen support when mom and dad are around; and she loves loves loves her pacifier.

We have been crazy busy lately, hence the lack of posts. We’re getting ready to move, but not before getting the current house ready for Lila to come home to first. Her bed is all set up in our bedroom. We’re ready. We just need a baby. I finally had a baby shower last week, which was wonderful. Although most of my friends who have babies brought them with and it made me sad that I couldn’t have my baby there. There are constant reminders that my baby is where we don’t want her to be. At my six-week postnatal appointment yesterday, the nurse checking me in said, “No baby with?” This kind of thing happens all the time. Then I have to explain. Everyone’s always really nice about it, though, and usually asks to see pictures. And of course, I show them LOTS of pictures. Here are a few.

Quality snuggle time with Nana in her new room in the ICC.


One of Lila’s favorite NICU nurses made her this graduation cap to celebrate her move to the ICC.


A little playtime with Daddy.


Dinner time!


Wide awake for her 9 p.m. feeding.


Little Lila has her days and nights a little backward. Sleeping beauty during the day.

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4 Responses to “Day 44 Part II”

  1. kate Says:

    That’s wild that it’s already been six weeks, Aimee, that little honey will be home before you know it!! I read the post below as well, how amazing and awesome to have made a friend like that, and, as you stated, restorative of faith in mankind’s capacity for compassion. Thinking of you guys daily love from our family to yours.

  2. mksmith Says:

    Blessings and peace to all three of you. Thank you for sharing your journey.

  3. Sheri Says:

    Aimee, your little girl has come such a long way!!! She looks great! Thanks for sharing all of the photos. She is just beautiful and will be home very soon!

  4. Fleur Says:

    Hey Aimee–
    Look how big Lila is! She is so adorable, I am so looking forward to meeting her and (gently) pinching those chubby cheeks! I really enjoyed your baby shower and was, again, amazed at your strength. All these new mama’s with their babes and yours tucked away in the ICC, I would have been in tears — it’s clear now where Lila gets her strength from.
    YOU look AMAZING! Here’s to Lila coming home soon, with or without oxygen, clearly she will thrive when with her mama and papa full time.
    -f-


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