Posted (Tina) in All Posts on January-2-2011

Thankfully, we were able to get the heart cath lab rescheduled to Wed, Jan 5th. In addition, we also have the MRI scheduled the same day. This means that we are not going to the hospital and being admitted until Wed, Jan 5th. The diaphragm hernia repair is still set for Thursday, Jan 6th.

So far, we’ve only had a few minor scares. We’ve seen pass out spells increase as of recent and it does seem like it might be related to pain – gas or trying to stool. She will start crying, pass out, and then gas passes or she fills her diaper and it really stinks! Since part of her colon is in her chest, it is reasonable to assume that it might be painful.

Also, we’ve been trying the new diet the past couple of days (Compleat Pediatric, canned blenderized food). She is not retching – which is huge. However, she does seem to be having more trouble stooling. The minimal stooling we’ve seen has been more runny and filled with mucous. We even opted to skip a feed last night because her belly was so tight and distended and she has not been filling her diaper as much, even with the continuation of Miralax. We know that problems with her GI system might occur. Right now, we’re just watching closely and hoping that it is merely related to an adjustment in food.

Rewinding a bit, we celebrated with Grandpa on Christmas Eve complete with tri-tip, mashed potatoes, spinach, rolls, jello mold and pecan pie. We unwrapped gifts and had a blast watching the dogs play with the new toys Santa dropped off (guess they weren’t naughty this year)!

Then on Christmas Day, we accepted the invitation and headed to the mountains to hang out with some friends. Ella mostly watched her videos, but she was content the whole time!

I mentioned in the prior post that Ella was very blessed this Christmas. Grandma West coordinated family members to send Ella an unfinished table with chairs for her play area. The best part: Grandma West is going to put her artistic talent to work on her next visit. Getting a table for Ella is great, but a hand-painted table from her Grandmother makes it even more special. Have I mentioned that you can see her art at Neiman Marcus every Christmas? Ella has a very talented Grandma!

Also, some Ella fans got together and surprised us in a huge way: an iPad loaded with all kinds of educational games, videos, etc. Along with it, an extra charger, a case, etc. Can you believe it? That was way over the top and much appreciated. We’re excited to use it with her. I’m sure her therapists will be excited to use it too! That is such an amazing gift because it is such an investment in Ella and her future.

This last week, we got together with friends to go to the Trail of Lights put on by the Denver Botanic Gardens. Unfortunately, it was one of those nights when Ella was not feeling well and so that made it a bit stressful. But our friends were understanding as we rushed through to enjoy the lights in the chilly weather.

Although we only know each other virtually, another CDH mom and I have been in communication. If you can remember, please lift up Elijah in prayer. This week will be his 4th time going in for surgery to have his diaphragm repaired. Elijah and Ella will be having diaphragm repair surgery on the same day this week, just in different hospitals! The world feels small sometimes! And although we wish we didn’t, we can relate to how hard their journey must be too, so please lift up this family in prayer!

Thanks to everyone who’s local and offered to help with dogs, meals and visits while those near and far away will be lifting Ella in prayer. The outpouring from everyone is so appreciated and it helps to know that we are not alone on this journey.

For now, we’re just enjoying our family time before we head to the hospital on Wednesday.

2 Corinthians 4:16-18 (NIV)
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Tara Hayes on January 2nd, 2011 at 8:42 pm #

You will be in my prayers this week! Wish I was closer and could help with meals and pups.

JOYCE PINEAU on January 2nd, 2011 at 9:04 pm #

Can you please tell me what Hospital Ella will be in? I have been having trials of my own but if I am able I would love to come and visit. G-d willing I will be able to. I have been following Ella for so long.It would be such a blessing to be able to meet you. You are amazing parents. Love in his name Joyce

JOYCE PINEAU on January 2nd, 2011 at 9:10 pm #

I will b praying for Ella’s smooth recovery and for the strength that you and Josh need to get through this difficult journey. Many Blessings, Joyce

Kathy Boulter on January 2nd, 2011 at 9:24 pm #

Hi, please know that Ella and all of you are in my prayers. I pray for her every day, but I’ll say a few extra prayers over the next several days and weeks as she recovers. I know God will hear our prayers, and help her recovery be without problems, and keep those organs where they belong!

God bless you all!

Steve and Joan on January 3rd, 2011 at 8:25 am #

So glad everything is scheduled to work with Ella’s needs. Thoughts, prayers and love continue for the three of you…..Blessings and hugs, Steve and Joan

Eve Johnson on January 3rd, 2011 at 9:22 am #

I will be in prayer for Ella (and Elijah) on the 6th and in the days before.

Peter Gornell on January 3rd, 2011 at 10:07 pm #

Josh and Tina,

Our family will be praying. Please know we’ve been through some very trying times as well and can relate to many aspects of your experience. Let me know if I can help with anything.

– Peter

dotty on January 4th, 2011 at 1:18 am #

Oh my! I don’t know if its the beautiful sweater, or the adorable hairstyle, but Ella, looks so much older in these pictures! She is simply beautiful! Y’all are in our prayers, and we will keep the other family in our prayers also, Cdh is such a monster! I’m so excited for y’all with the ipad!!! I bet that will be incredible for Ella! I was actually looking at them because I was told they Were awesome for kids with Autism and those that are non-verbal. Hope its awesome!

julie kirk on January 4th, 2011 at 7:48 am #

just about the time I don’t think she can get any cuter….she is such a living doll…Blessings and Prayers for a well year for Ms Ella. love,Julie Kirk KSA

Pat Hadnagy on January 5th, 2011 at 3:36 pm #

All the best to Ella and her wonderful parents! Our prayers and thoughts are with you!!

– The Hadnagys

Kevin & Sara Allen on January 5th, 2011 at 9:44 pm #

Praying for Ella, the docs & team & Mom & Dad’s nerves tomorrow. Love you guys.

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