Posted (Tina) in All Posts on March-21-2008

Yes, who knew that a meltdown from Ella could be a good thing?

Ella had a pretty good night, but started stirring at 4am. Since I went to bed at 12am, that was not quite what I was hoping for. From that point until 7am, I was literally out of the bed every 5 minutes. I told Josh today that I liken it to Vegas. You never know…she might just go back to sleep and I could catch some needed zzzzs too, so I keep trying. This time, 7am was the start of the day.

She did pretty well, including 25ccs in her first bottle session and 20ccs in her second session. Again, we are just trying to get her to practice and get better suction each day, so she can get better. Practice does make perfect.

In the late afternoon, we decided to go to the grocery store. Since it is literally across the street from our apartment and the weather was gorgeous, we decided to walk across the street together and make a trip out of it. Ella did great on the way to the store and through 95% of the store visit. Towards the end, she started to have a meltdown.

She became sweaty and was clearly upset although I was not sure what was causing it. Initially, it just seemed like she wanted me to hold her, which would not work worth our arrangement. So, I increased her oxygen to 1 liter and let her cry it out on the walk back to the apartment. I could tell by her color that she was doing “ok”, but she was not happy.

When we got her home, I think her episode lasted for 30+ minutes. She was sweaty, crying as hard as she knew how to do, and was clearly trying to tell me that something was not right. It seemed that she had gas pains or something. I tried venting through her g-tube to see if that would provide relief, but it didn’t seem to work. In any case, she was not consolable which is so tough….especially after 30 minutes of her crying hard.

The good news is that we had scheduled for Nurse Michelle and her husband to come over for dinner (thus the trip to the grocery store) at 7pm. Well, Ella finally gave up at 6:30pm,shortly after I pushed a feeding via her g-tube. She does not normally sleep at this time, but she wore herself out.

Once our friends came for dinner, Ella was sound asleep and she stayed asleep the entire time. That might mean a rough night ahead for me, but it was so nice to have a few hours to ourselves. It was nice to have a nurse that cared so much for our baby girl and for us, come to visit with us…outside the hospital.

There are a few NICU staff that have visited us while we are local and it means so much. I think tonight emphasized how much we miss being around friends.

On this Good Friday, we commemorate the passion, the suffering, and death on the cross of our Lord, Jesus Christ. We praise the Father and thank Him for His son, who sacrificed His life so that we might have life eternally. And we thank Him for our baby girl and pray that we can grow and become the parents He wants us to be.

Williamsburg on March 21st, 2008 at 9:18 pm #

So, Josh, my translation of that face is: “What, _me_ meltdown? You gotta be kidding!” LOL – she looks so adorable and innocent, but I know how tough those inexplicable, inconsolable crying sessions can be. Still, glad to know there was a silver lining in the cloud, and we continue to pray consistently for sweet, restful sleep for everybody in the valiant West family. So glad, too, that you had some time with friends. We were remembering that it was Holy Week last year that you got the news about Ella’s condition and the incredible difficulty of hearing it, and yet…the joy that this past year has brought through His grace and faithfulness. Thank you Jesus for your incredible sacrifice and love for all of your children. Bless Ella and her precious mom and dad as we remember You. Love you guys so much. XOXOXO

Kristen on March 21st, 2008 at 9:24 pm #

Ella, your butterfly outfit is perfecly adorable on you! Keep shining!

The Laz Fam on March 22nd, 2008 at 12:06 am #

Thank you that in your trials, you encourage us. Thank you that you continually seek His comfort, and point us to Him, as well. We love you and your sweet Bun so much! ~ KTJB

Joel Snyder on March 22nd, 2008 at 7:44 am #

Ella, I am happy to hear that you survived your meltdown and got some good needed sleep. Also that you gave Mom and Dad a break and some free time. Tina and Josh I hope that you have a good weekend and a Happy Easter. Taco is on her new medication and I am hoping that will be the answer for her. Manny is doing great and loving the weather and his backyard. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!

Chambers Family on March 22nd, 2008 at 12:09 pm #

Meltdowns… It must be hard to let her cry it out since her little lungs are so fragile and small but that might be the answer to your sleep. Truthfully – all babies have inconsolable moments sometimes daily and weekly. It would be cool to have some sort of Oxygen tent for her to sleep in so you didn’t have to worry about those canulas all night. Maybe it is a new CDH Mommy invention!

Happy Easter. She is amazing, willful and beautiful – qualities you want her to have. Oh and we have told our kids since they were born that they are “GREAT TEST TAKERS”. We will let you know if that subliminal thing works.

Grandma on March 22nd, 2008 at 12:17 pm #

OK1 Ella Grand ma cant stand it any longer I am going to hunt and peck my way through a message if it takes me all day. I have to say that on the poast UNSPOKEN WORDS Your little personalit is just a poppen and you look just like your Daddy when he was tiny it looks to me like you are going to be a nut just like him. Your mother is also pretty funny so I just cant emagine what sweet little kook-ku
you will be .Also your pictuers areso cute but they do not do you justice. you are even cuter in person. Thamk you for the wonderful visit I had a ball with you Thank for all the sugar I took home to everyone here in Calif. I hope to see you again soonKeep up the good work you are such a little fighter Lots of love Grandma West

Elizabeth Norman on March 22nd, 2008 at 5:09 pm #

May you have a joyous first Easter with your beautiful little bun. Reading about her and seeing the adorable photos brightens our days.
Elizabeth and Dave Norman (Grandma Mary’s friends)

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