Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 55 November 8, 2010

Filed under: Lila — Aimee @ 10:35 pm

The past 24 hours have been awful … starting with arriving at the hospital last night to find a volunteer holding Lila to calm her down, right up to the nearly inedible Minute Rice and boxed Pav Bhaji that I had tonight for dinner. I’m starting to feel like the stress and heartache of the last five months will never be behind me.

Off and on for the past few days, Lila has been working much harder to breathe, and appears quite uncomfortable at times. Try taking quick, shallow breaths. I imagine this is how she feels. How awful would it be to not be able to take a nice, deep breath? When I walked in and saw the volunteer holding my baby, my heart sank. I should’ve been there to hold her. I’m so grateful there are volunteers to do this, but I should’ve been there to console my baby. Three days ago, they stopped her diuretic (which she’d been taking to deal with excess fluid), so I figured fluid was accumulating around her lungs. During the day, the doctor had ordered a chest x-ray for the next morning, but didn’t want to give her a dose of the diuretic just yet. Last night when I saw how hard she was working, I asked for the nurse practitioner from the NICU to come see her and hopefully give her a dose of the diuretic. She wouldn’t do it either, because her oxygen requirements were good and her chest sounds were clear. I finally got her calmed down and sleeping soundly. I considered staying with her for the night, but I was so tired and I knew I wouldn’t get any sleep in the hospital. I called Lila’s nurse before I went to sleep and learned she was doing much better. I slept well.

This morning, I checked the marker board in Lila’s room where they post her nurse’s name, her weight, etc. My heart sank again. She’d gained 84 grams in one day. The day before she gained 75 grams and the day before that, 45 grams. She’s only supposed to gain 20 to 30 grams a day. I knew just by looking at her that she was retaining a lot of fluid. Her face, neck and eyes were so puffy. A new doctor was rounding this week and she’d already been in to see Lila and also didn’t think she needed the diuretic. I was upset and asked to speak with the doctor. I needed a good reason for why they wouldn’t give her the diuretic. The doctor came in and I told her I thought Lila looked awful. The doctor explained that her chest x-ray was improved from last week, her blood gases were improved, her oxygen requirements were great, etc. There was no fluid around her lungs and the doctor wasn’t convinced that stopping her diuretic was what was causing her to work harder. In the meantime, Lila hadn’t been given a bottle in 24 hours (she was instead fed via NG tube) because all of the nurses felt she was breathing too fast to bottle. If the ticket out of this place is successful bottle feeding, how are we ever supposed to get there if she’s not even well enough to bottle feed? The doctor said she wanted to give Lila a chance to prove that she didn’t need the diuretic. If they started it again, she’d likely go home on it. So lets stay the course, keep a close eye on her and reevaluate tomorrow. The doctor also suggested that Lila’s change in breathing could have something to do with moving her from 1.5 liters of flow to 1 liter. She said if Lila is stable tomorrow she thought it would be a good idea to move her to .5 liters at 100 percent oxygen. She said a lot of times kids do better with this equation. I gave in. What else can I do? At some point, I need to put my faith in her medical team. Medically speaking, they do know best. I realize that a lot of what I write on here probably doesn’t make much sense to most of you, but it probably sounds familiar to any mom who has a baby in the hospital. This is why I do it.

Lila’s occupational therapist wanted to see her at noon for a bottle feeding and I thought, “Good luck, there’s no way she’s going to take a bottle while working that hard.” Once again, my daughter proved me wrong. She took more than half of her feeding and she did it without a single cough/gag/choking spell. The bottle relaxed her and she actually really enjoyed it. Her breathing calmed down and she seemed like a happy and content baby. I gave her a bath and she fell even more into a euphoric state. She really loves those baths. I rocked her to sleep and tucked her in. At 6 p.m., she took another bottle for me and did a great job with it. I’m crossing my fingers that things continue to improve. I hope she turns a corner soon.

I really don’t want to continue answering the question, “When does she get to come home?” I don’t know. Nobody knows. Surprisingly, Lila’s doctor on Sunday said he thought she’d be ready to come home in three to four weeks. Doctors don’t usually make these predictions. If it’s any longer than that, I don’t know what I’ll do. I’m already so upset that she’s not home yet. I keep focusing on the fact that by the time she comes home, I’ll have to go back to work. It’s not fair.

To end on a happier note, I just want to say that Tyler and I had a really good time on Friday for my birthday and our benefit. Everyone was so supportive and generous. Thanks to everyone who came out and to everyone who have sent gifts, called e-mailed, etc. I’m running way behind on my thank-you’s, but please know that we appreciate every bit of it.

Aaaaaannnnddddd … WE GOT THE HOUSE! The house we’ve had our hearts set on renting is officially ours and we move in Dec. 3. We cannot wait to get a fresh start in our new home.

Time for some Ben and Jerry’s. Goodnight!


4 Responses to “Day 55”

  1. Mom Says:

    I don’t have any medical advice or great wisdom for you, Honey. I’m heavy-hearted for you right now and wish you could be taking your little one home with you. The past 5 months have certainly been wrought with challenges and disappointment but we both know how truly amazing it is that you are where you are in all of this.

    If the way I feel is any indication, I’m sure that right now feels like the biggest hurdle and the hardest things have been to date. All I can suggest is for you to find strength in yourself and the support and love of your husband and family to keep putting faith in the doctors and nurses at Children’s and get up tomorrow and do it again.

    If I could make this better for you I would in a heartbeat. We need this precious little baby girl to be well enough to go home and I will keep praying hard for that. Stay strong.

    I love you!!!

  2. Sheri Says:

    Aimee……one step forward 2 steps backward in the NICU!

    Everything will work out, please be patient, I know that it is very hard. It doesn’t seem like the Dr’s. know, but really they do know what is best and are trying to build up Lila’s stamina on everything from breathing to feedings.

    Hang in there, soon you will be taking Lila home, SOON! You want to make sure that she is ready and that when she comes home she is there to stay!

    I LOVE your Mom’s advice!

    Stay strong and keep your chin up for your daughter! Thinking of you and healing {{{hugs}}} and prayers your way!

  3. Jessica Gessner Says:

    Just wanted to send a note to let you know that I’m thinking about you & Lila tonight. In your post on Wed, you sound so tired.. I am sure the hospital routine is getting old. Instead of setting goals that come up quickly, like having her home in a few weeks. Maybe try setting a goal that is just a bit further away but more doable. Think about Christmas… Lila will be home for Christmas. It’s not too far away, heck, most stores have their Xmas stuff out now.
    You are going to want to spend so much time with her once she’s home, it’s maybe a small blessing in disguise if she is in the hospital while you are moving into the new house that you said you guys are renting. That will be an exhausting time moving AND then unpacking. So, if Lila is still in the hospital, you can concentrate on getting her room ready and the house all set for her very special homecoming!!

    I hope these small thoughts can give you some ease to the frustration you must be feeling… she will get home, she will.

    Big hugs,
    Jessica G

  4. laurie Says:

    this all sounds so wearying, and so hard, and so frustrating. i hope things have improved since you wrote this. hang in there…

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