Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 51 November 4, 2010

Filed under: Lila — Aimee @ 11:41 pm

Warning!!! VENT/BITCH/GRIPE alert!!!

We left the hospital at 10 p.m. tonight, our stomachs growling. Neither of us had eaten dinner. So here we are at 11 p.m. eating sandwiches at home and looking at pictures of Lila wishing we were looking at her in person. We are so over this routine.

It’s hard to believe we’ve been essentially living at the hospital for the past 150 days. Well I’m finally starting to lose patience in this whole “process.” I just want my daughter home and I want her home NOW!!! They say that God doesn’t give you more than you can handle. God, if you’re listening, I don’t know how many more days of this I can handle!!!

Parenting under the watchful eye of the nurses has its benefits when it comes to being a first-time mom, especially to a preemie. But when you’re as independent as I am, most of the time you just want them to leave you the hell alone so you can take care of your baby. I keep telling myself how blessed we are for getting the opportunity to enjoy Lila while she’s in the hospital, but parenting under the hospital protocol and the nurses’ schedules is for the birds. No matter how many amenities they add to the room, or how many days in a row I wear my sweatpants, nothing about this situation feels like home.

The biggest heartache is being told when I can and cannot feed my baby. Lila is on a three-hour feeding schedule, whether she’s awake or not. Even if she shows feeding cues an hour-and-a-half before her scheduled feeding time, I can’t feed her. It’s the most hideous feeling in the world to not be able to feed your baby when she’s hungry. Mess with a mother’s natural instincts and see how long she plays nice. I finally got permission to nurse her between feedings, which she really has no interest in anyway. Breastfeeding frustrations? That’s an entirely new post for a different day.

Once feeding time finally rolls around, I cross my fingers and hope that Lila will take a bottle. She’s taking about half of her feedings by mouth — not good enough to go on an “ad lib” schedule. In other words, eat when she wants to eat. Because of Lila’s lung disease and prematurity, bottling is hard work. Once we get started, there’s no doubt about it, she wants that bottle. She gets a little too excited and might cough or gag at first. But then she usually gets everything coordinated and does pretty well. That is, if I’m allowed to continue bottling her. Some nurses — again, most are great — will stand watch over my shoulder and the first moment that Lila has a desat (her heart rate or oxygen level drops) they take the bottle from me and the bottling session’s done. She gets the rest of her feeding through her NG tube. I don’t like being watched like that. I’ve fed her enough times to know when to stop, what to do, etc. I know my daughter well enough to know that it takes her a bit to get into the feeding and when the nurses take away her bottle at the first little cough, they’re taking away her chance to prove she can bottle, thus prove she’s ready to come home. Besides, the nurses sit 10 feet away and I’ll holler if I need them. Some of them make me feel like I’m incompetent and that’s not a good feeling to have. There’s enough of that emotion floating around as a new mother anyway. I know there’s reasons for everything they do in the hospital. I really do know that. And Lila’s care has been exceptional. I’m just saying it’s a crummy way to have to take care of your baby.

Life is overwhelming right now. The time I spend at the hospital is more than a full-time job. I run home in between visits to take the dogs outside, do a load of laundry or a sink full of dishes. Don’t ask me the last time my floor was mopped. Boxes are stacked upon boxes in my dining room as we chip away at packing up all of our stuff. The pictures and decorations have been taken off the wall. Not exactly the homecoming environment I envisioned for my baby.

On one of Tyler’s days off last week I dragged him along with me to Babies ‘R Us for a major shopping trip. Half-way through the trip we both questioned, why exactly did he come? Combing the aisles for the perfect diaper bag and bottle nipples, lets just say it wasn’t really his thing. But then I realized I needed him for shopping cart reinforcement! I think we finally have most everything we need. And here’s the photographic proof that moving to a bigger house is an absolute necessity!

Finally, I’ll leave you all on a happier note with a sneak peak from our impromptu photo session tonight with Auntie Meg. Look at those eyes! I think she looks like her Daddy!!!


3 Responses to “Day 51”

  1. Sheri Says:

    First of all, she is SO BEAUTIFUL……and has very beautiful dark eyes.

    Aimee….that was well said! You have every right to feel the way you do and voice your frustrations. I remember all too well just by watching. The same things that you are going through I saw with Conner. I can’t imagine being the “mom” it was hard enough being the Grandma. I understand now “why” some of the things were done the way they were in the NICU. Lila needs to become a “champ” at eating so they want her to be really hungry when she feeds. It is normal for her to have d-sats when she drinks too fast. Other babies would too if they were on monitors.

    She will learn it soon….you are getting closer everyday.

    As soon as they talk about the “car seat” study and CPR classes (if you take her home on an apnea monitor), you are almost ready to walk out the door to take your daughter home. It is COMING….be patient!!!

    Remember to have your “voice” in all of it on how you feel and want her to be fed (on demand) I think they call it…..just around the corner as soon as she gets better at the whole feeding process. You are doing a GREAT JOB and be patient!!!! {{{Hugs}}} to you……..

  2. Mom Tjader Says:

    Lila is beautiful! Absolutely beautiful! And she is SO alert. Next time we see her she will be able to see us now that she is awake more. I can’t wait! She does look a lot like Tyler in this picture. I really appreciated reading this post and am glad that you are telling it like it is. Soon Lila will be taking her feedings, and get to come home with you and Tyler. She is a fighter, and she won’t stop until she gets to go home! She knows how great it will be to have you and Tyler all to herself. Love to you all.

  3. Aunt Donna Says:

    Aimee, don’t hesitate to tell the nurses how you feel. You are Lila’s mother and you know her better than anyone else (even the nurses, who think they always know what’s best). The above post is absolutely correct. Most babies would show desaturation while feeding if monitored. I believe that you should be able to feed on demand. If she gets too hungry she will desat. easier because she is using to much energy in an attemp to fill her little belly. Insist that you be allowed to fed her on cue (her cue not thier’s). So what if she only takes an ounce or even less. If you breast feed or bottle when you believe she is hungry, she will not have to work as hard and therefore wont desat as quickly. Listen to your motherly instincts, and tell the nurses to back off. Tell them that you will do what you know is best for your daughter and if you need them you will ask, yell or scream for thier help. Aimee, you may be a new mother, but you know your child better than anyone else in this world. Flollow your instincts and your heart and baby Lila will follow your lead. She is a beautiful baby girl and she is a fighter, and like most babies, she will prove the “baby experts” wrong. Feeding schedules are for the birds. Tell the nurses that if you feel she wants to feed, you are going to feed. If she actually eats that is up to her, she may just need some snuggle time. Also, practice makes perfect, so let her practice before she is too hungry, so that she dosen’t have to work so hard at her scheduled feeding. I am not by any means telling you to not listen to the nurses, but remember they are the nurse for the day, you are her mother forever. I have never met a happy baby governed entirely by “Dr Spock”. OK, I know that Dr. Spock isn’t the most well known baby expert anymore. I also don’t know the names of the more modern ones. One thing that I do know for sure is…MOTHER KNOWS BEST!!! Praying for You, Ty and Lila. Love to you all, Aunt Donna. GOD HEAR OUR PRAYERS!

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