Thursday, June 20, 2013

Life at home

It's been one week since Elsie came home from the hospital! Wow. We've made many adjustments in our lives since then. It's been very busy and sometimes frustrating dealing with a medically needy infant as well as a clingy 2 year old who is confused by all the changes in her life.

Poor Evje, I know she will adjust soon, but things have been very stressful for her lately. She won't leave my side and wants to be held a lot. She wants to stay in her pajamas most of the day, I think because she has associated getting dressed with leaving the house to go the babysitters. If anyone comes over to visit, she is very suspicious that they will either snatch her up and take her away, or that I'm going to sneak out and leave her with them. Most of the time, she loves her baby sister, but there have been occasions when she is frustrated and upset that she no longer has my undivided attention. It will get better with time, I know.

Elsie is doing well, and it's been such a joy to have her at home. We've set up a "baby station" of sorts in the living room, which is where Elsie spends the majority of the day. Since she needs to be attached to the oxygen machine, which is heavy and bulky, we park the machine in the corner and she rotates from her Mamaroo chair, to the Moses basket, to being held, all within 10 feet of the oxygen machine and pulse oximeter. We've all learned to be mindful of Elsie's tubes and look before we step. At night, Clayton and I team up and switch all of the equipment to the bedroom for the night. We've had a few rookie moments where her oxygen levels have dropped and we weren't sure why, until we discovered the canula out of her nose, or once when the tube had become disconnected from the oxygen machine. But for the most part, we have quickly become very familiar with Elsie's various machines and medical apparatus.

Elsie has her good days and her bad days with oral feeding. For the first few days at home, she had a lot of anxiety when eating, probably due to the change in environment, but is doing better since then. We're happy to have the G tube to make sure that she is getting enough calories and nutrition while she is becoming comfortable eating.

I found the following paragraph online, which explained very well and validated what we are going through:
"Fragile infants, recovering from very serious illnesses, can be very difficult to feed and difficult to "read". Some prematurely born infants, even after they become healthy, still do not give clear cues to express hunger. Children with lung disease, gastro-esophageal reflux, or other medical problems may tire before taking in enough nutrition in one feeding and may not seem interested in additional feedings. It can require considerable hard work to provide the frequent, small feedings necessary to maintain adequate nutrition for infants who can consume only small amounts at a time. While feeding time is the most pleasurable activity most young infants experience, it can be painful and stressful for infants experiencing feeding difficulties. It also tends to be intensely stressful for parents." (From

This morning, in order to spend some quality time with both of my children outside the limiting confines of the living room, I hooked Elsie up to her portable oxygen tank. We loaded up the pulse oximeter, an infant rocking chair, and some blankets, and headed out to the backyard. Evje and I sat in camp chairs on the patio with Elsie in her rocking chair between us, and we leisurely watched the birds eating at the bird feeder. Too bad the rest of the day wasn't as relaxed :)

Just enjoying an early morning snuggle with Mommy!

Awesome onesie from Uncle Eric & Aunt Shelene from Disneyland (Yoda). 

Yoda Onesie

Quick snapshot of little missie discovering her tongue

I told Evs to smile and this is the expression that she chose to make?

Cute sisters!

2 years old and already knows how to make a duck face?! I promise I did
not teach her this expression!!


  1. Just came across this site while "surfing". (Do people say that anymore?) Anyway, glad to see that Elsie is home and doing well. Congrats on the addition to your family.

  2. I'm glad you were able to spend time outside with the girls. That will probably help Evje adjust to the new,complex life that you're all going to be living for a while.
    I sure loved holding Elsie (even when she threw up)!

  3. I love early morning mommy snuggles! I am so glad you have your baby girl at home! I wish I could come see you but I think Annabeth might be sick, and so I don't want to risk bringing her down. Your girls are adorable as always though! Can't wait to see them again!

  4. It was so awesome spending time with you and the girls last week. Keep up the good you!

  5. So happy to see things are going better. Love the adorable pictures!! Isn't personality awesome?
    How many panic attacks have you had now??
    I bet the girls enjoyed spending time outside. That fresh air does a body good.
    Have to tell you, the tongue picture is my all time favorite so far.