Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 65 November 18, 2010

Filed under: Lila,Milestones,Sunny days — Aimee @ 11:22 pm

I wrote the last post, but somehow forgot to publish it! Sorry to have kept you all thinking I was miserable for so long! Things have gotten better and I’m sooooo elated to report that we get to bring our baby home on Sunday. Somebody, pinch me, because this just doesn’t seem real.

The news came as somewhat of a shock to me this morning after having spent the last 24 hours struggling with a very difficult decision. Yesterday, we were given the option of having a feeding tube (G-tube) surgically placed in Lila’s belly and bringing her home. Or, give her a few more weeks to see if feedings improved. She’d hit a plateau with her feedings — only taking 40 to 50 percent of her volume — so this was an option to get us home. The surgery would require Lila going back on a breathing tube, pain medication, and, well … it’s surgery. With the feeding tube, we’d continue to bottle her every three hours at home, then whatever she didn’t take via bottle, we’d give her through the tube, just like we’ve been doing in the hospital. After some major soul-searching, input from family and friends, including my amazing support group of other pPROM mamas, we knew what our decision would be. I came to the hospital prepared to tell the doctor that we were opposed to the G-tube at this time. We felt it would be selfish not to give her a few more weeks just because we want her home with us. I also wanted to ask why she couldn’t come home with the NG tube, the tube she has in her nose now. It’s less invasive than surgery, it’s what she’s had all along and we’re used to it. Before I could even bring up the idea, the doctor offered it as a third option for us. My eyes lit up, I started bawling and said, “YES YES YES! I LOVE THAT OPTION!”

Going home with the NG tube, I’ve learned, is a bit controversial here in the halls of the ICC. The nurses don’t like the idea and the doctors don’t typically send babies home with it. Babies often pull the tube out, which is no big deal, but then the tube has to be replaced by a nurse, not by me (although, I’m sure I could handle it … 🙂 … ). The tube can also become misplaced, so I’d have to be trained on how to check for correct placement, etc. Hell yes, bring it on! I am capable of this. n Even one of our primary nurses said she wasn’t a fan of the idea at first, but when she thought about how committed we’ve been and just how much time we’ve spent with Lila and learning all that the nurses do to take care of her, she concluded it’s a great option for us. Everyone will have their opinions about this, but we feel this is a great option for us. Lila can come home and we can continue to work on bottling and breastfeeding. If she doesn’t show any improvement over the next six weeks or so, then we’ll have to consider the G-tube afterall. But I believe that once Lila gets home and has the same people caring for her around the clock, that she’ll take off on her feedings and all this talk about a G-tube will be a distant memory.

Since learning that Lila will come home this weekend, I’ve had an incredible dose of adrenaline pumping through my body. I brought her car seat in tonight and was so damn proud carrying that thing through the hospital. I’ve looked on with envy at the many parents I’ve seen coming or going with car seats knowing that someday we, too, would get to drive away with our daughter and GO HOME.

The next few days will be busy ones as we prepare the house for Lila and wrap up loose ends here at the hospital. We take our CPR course in the morning, then Lila goes in for her car seat test. She’ll get her feeding, then they sit her in the car seat for 45 minutes or so to see if her heart rate of o2 saturations drop. I’m confident Lila will pass, this, her very first test. Then, for the first time, we introduce our girl to the outside world and bring her home. Just in time for Thanksgiving.


4 Responses to “Day 65”

  1. Mom Tjader Says:

    Words just don’t seem enough to convey how happy we were when you told us Lila is coming home! We are confident that she will thrive at home with you and Tyler, and the bottling will become the norm for her feedings very quickly. We can’t say enough about your love, commitment and determination to all be together as a family. We are so proud of you and Tyler. We only wish we were closer and could be there whenever you needed or wanted us to be. We will see you all soon! Love you so very much. Mom and Dad T

  2. Sheri Says:

    ALL I CAN SAY IS “YAY”….I am so happy for all of you! You can do whatever it takes to keep her at home and Lila will flourish being home in her surroundings with her parents there 24/7! This is the BEST Thanksgiving and you will remember it forever. Thanks for the wonderful news!

  3. Jaci Says:

    Yeah Tjader Family!
    I’m so incredibly happy for all of you. It has been a journey thats for sure and will continue to be, but at long last your baby girl gets to truly be born into the world and start living her life in the comfort of her loved ones in her home. I once again am so happy for you guys I can’t imagine how thrilling this must be.
    Lots of Love

  4. MrsE Says:

    Oh Aimee I am so happy for you and your family.
    I am sure when Lila gets home she will just go from strength to strength as you are able to fully show your love and she can feel secure in that love.
    All the best. xx
    Rachel BBC

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