Posted (jooosh) in All Posts on February-8-2008

I didn’t sleep that well last night. Ella slept solid through the night, and Tina could’ve cut down trees with her zzzz’s, but I found myself waking up multiple times just to catch a glance of Ella’s “numbers” across the room. I just want her to be better. I want her to have a break from not feeling so good. I want us to have a break from her not feeling so good.

Being outside the hospital definitely has its comforts, but what has been really difficult is the fact that we’re continuing to deal with uncharted territory these days. I mean, we thought that when we finally went home, the mystery of Ella would be solved in regards to her care at home. We thought we would return to the hospital if she became ill or had any major complications, but not just as a continuation of the mystery that was never solved in the NICU.

With all she’s been through at the hospital, the decisions were more in the hands of Dr. Kays and his team. Now, it’s reversed. Most of the control is in our hands and the doctors are there to consult, but the issues that Ella continues to experience are still mysterious.

Does it make sense that it was less difficult to surrender to the Lord when we had limited control in the hospital, but now it’s harder because we have more control? I know the truth, that the Lord is ultimately always in control, but until I can fully surrender, true peace and rest is not realized.

We were hoping that the reduced calories in her food would minimize Ella’s discomfort. Well, at her 3 ‘o clock feed she started getting real uncomfortable. She started retching and pushed all her food back up into the tube. She was crying so hard that she couldn’t catch her breath and started getting diaphoretic (sweaty). This is so hard to see because she gets real upset and turns purple. Kinda like when your kids have been in the pool to long and there lips are purple, that way, but all over.

We upped her oxygen and clamped off all the food she pushed out and removed it. After this we were able to start calming her down.

Oh…we know we’re not alone in these moments, our Heavenly Father is right there with us, but it’s still so hard to go through. We feel so helpless. Especially because Ella’s doctors don’t have any exact answers on what to do. We did text one of the nurse practitioners who’s been an amazing resource. She suggested adjusting the volume and frequency of the feeds. This does make sense because our feeling is that it may relate to the amount of food going into her belly at one time.

So we’ll be feeding her 10 times a day every 1.5 hours, and a continuous feed at night for 8 hours. We’ve done two feeds this way and she’s tolerated it. Time will tell if this works.

Tina has been so incredible with Ella. She rarely left the Bun’s side the entire 9 days she was in the hospital. Some NICU friends were sweet to stop by and give her a break so she could take a quick shower or grab some coffee. Now, she’s giving her all her focused attention at home, with minimal help from me because I’m consumed with a big project and will be working through the weekend to complete it.

Grandpa headed home today as well Aunt Shannon. It was so great having them both around. It really emphasizes how much we miss being close to family. Thank you Grandpa for doing so much laundry, scrubbing dishes, and cleaning around house. Thank you Shannon for the groceries, Ella’s welcome home cake, and for running errands for Tina.

We were also surprised by some welcome home flowers today by a friend of a friend. They’re beautiful and much appreciated.

Please continue to pray for discernment and wisdom on how to proceed with Ella’s feeding plan this weekend. We really want to find a way to feed her that does not cause discomfort. Also, that her fluid would continue to reduce so that when she visits Dr. Kays on Tuesday and has labs drawn, that her BUN is higher (less fluid on board).

Chambers Family on February 8th, 2008 at 8:39 pm #

What great smiles from little Ella! Sorry that it is all still a mystery and that can be incredibly frustrating. I do hope that someone is able to figure out the fluid issue. My goodness. So here are some thoughts from afar:
Does the lymph system have anything to do with the fluid issue? Or is it heart and lung? Did she tolerate breast milk better than anything else? Would be possible to go to a breast milk bank and try that out?

I know. I am a “fix it girl” Sorry. It drives my husband crazy!

Hope you find some rest and resolution over the weekend. Nothing better than your own bed!! Hugs / Love and Prayers.


Susan on February 8th, 2008 at 9:08 pm #

I know you won’t know me from Adam, but I’ve been following and praying for beautiful little Ella for quite some time. This may be a dumb question, but is the formula she receives milk based versus soy based, and does she possibly have an allergy? I have no NICU or medical experience to reference, just a mom of three. But my second son had a milk protein allergy (diagnosed by a lactation consultant) for the first year of his life and it made feedings miserable. I realize you are not nursing Ella but the same would apply with milk-based formulas I would guess. He would scream and scream because of belly pain and was failure-to-thrive for a month. I ended up still breastfeeding him, but abstained from any dairy products ad lots of other foods for a year which helped. I’m just blindly wondering if anyone has investigated an allergy issue with Ella. Again, I know nothing about the formulas you are using so you may already have addressed this issue. I just wanted to mention it because I know how devastating it was to try to watch my son eat while in pain and we weren’t dealing with any of the other challenges you are facing. Anyway, I thought it might be worth mentioning. Thankfully, our God is bigger and mightier than any doctor or medical team out there and is seeing the big picture in this trying time. May you find HIS peace to surpass your understanding.

eusey family on February 8th, 2008 at 11:29 pm #

I just landed in OC. I miss the little bun already. For those that haven’t had the blessing of seeing Ella in the flesh -She is amazing! This little angel from above is truly gift and she has a wonderful spirit.

Miss you all. So great to see you nd experience a glimpse of your world.


Ella’s favorite Auntie,


Gloria & Red Jacobsen on February 9th, 2008 at 12:33 am #

Hi tina & Josh, I think Dans’s post about a milk bank is a very good one. I went on the “La Leche League” website and they had information on contactingmilkbanks, also Of course the hospitals in your area may have info on where a local milkbank is located. Great info on La leche League web site! We just love the darling pictures of your beautiful Ella,she looks like a happy baby despite her difficulties. Must be all the loving she gets from her devoted parents! WE’re keeping you all close in prayer. Blessing ,Gloria & Red

Kara on February 9th, 2008 at 3:34 am #

You guys amaze me! She’s a lucky little girl. God choose well.

Johnny & Mary Lou Brantley on February 9th, 2008 at 6:12 am #

Our prayers and thoughts are with you daily. Ella looks so beautiful and healthy. Those smiles are precious. We hope the feeding problems will be resolved very soon. Keep up the good work – you both are incredible!
Love and prayers, Johnny and Mary Lou

Joel Snyder on February 9th, 2008 at 7:33 am #

Ella, I am home and getting ready to go pick up Taco and Manny this morning. Thank you for the visit and all the smiles last week. Josh and Tina thank you all the fun during the visit. I am still in amazement over my granddaughter she is so beautiful and full of spirit. I will be checking in with you later today. I hope to gather my thoughts and share on this site some of my feelings with everyone soon. Love,Grandpa!!!!!!!!!!

The Lizotte Family on February 9th, 2008 at 12:00 pm #

Kara on February 9th, 2008 at 3:34 am #
You guys amaze me! She’s a lucky little girl. God choose well.

We agree!!! prayers for you!

Adrienne - Melissa's sister on February 9th, 2008 at 12:23 pm #

Was reading the milk posts and thought I’d give you a number to call for the NATIONAL MILK BANK (1-866-522- MILK). then there is HEALTHY BEGINNINGS & NURTURING MOMS MILK BANK in Gainesville,FL – don’t know how far you are from there though: 1617 NW 16th Ave Gainesville, FL 32605 (866) 574-4204 / 352-262-5619 —- one more national milkbanking.net (626) 599-9265

I can’t really help much other than praying which I know is so important but I could do some online research so hope that if you wanted to check out the possibility of using breastmilk the numbers are at your finger tips.

You know though…. even though it’s been awhile… I bet you would be able to get your own milk back if you thought it might work for her. I’m sure stranger things have happened – it hasn’t been that long. Sorry to get too involved – maybe I’ve overstepped bounds…

I have some contacts with more info if you are interested.

Love you guys and lifting you up before the Father…


gillian brown on February 9th, 2008 at 4:39 pm #

Hi,My baby son Kaden seems to have the same problems with his feeding as Ella,crying and wretching and it coming back up the tube.Our Dietitian suggested smaller amounts of feeds and so far this is working and feeding by pump overnight 12 hours.You know your daughter better than anyone go with what you think she can tolerate.It’s trail and error.Good Luck! Gil

Jordan M.L. Rieth on February 9th, 2008 at 6:03 pm #

What an amazing set of God feared parents this beautiful baby Ella has! God is good all the time- and all the time god is good. Yes, God has had a plan every step of the way for Ella’s life, but He also knew her condition all along and gave her to two beautifully strong parents to raise her. Not only has God allowed her to be part of a Christian household and environment, but one day Ella will be able to look back and share her story. Everyone has a story and Ella’s is already starting to be shared. I continue to pray for the West family and all of there adventures they will face. God NEVER gives anyone more than they can handle and he stretches the strong so that He may be glorified! I thank you for allowing me to come and meet baby girl Ella before she was discharged- God has awesome timing! May He bless you and all of your endeavors!!! We are all in God’s hands <3

Consider yourself hugged, Jordan (aka the volunteer)

Char and Jim Jordan on February 9th, 2008 at 6:15 pm #

I only know from the tears in my eyes and the reading of everyone’s posts how very lucky? blessed we are to have you and Josh and baby Ella. Know in your heart that Ella has many wonderful people loving her and trying to help you solve the mystery. It seems that you will have to solve this on your own. I am sure that Dr. Kays has racked his brain and is stumped too. I surely hope the volume or the timing or the kind of milk can be changed to satisfy this little one. She is a cutie petutie for sure. I know you and Josh feel blessed to have her. We who stand on the outside are pulling for you and baby too. We love you. We will support you in your decisions. You must be loved alot by the Lord. He only tries those he loves the most. Perhaps this is the “JOB” family. Kind of a modern day version. Please take heart. Let us know if there is anything that can be done for you. We would love to help. All our love, Jim and Char

Racheal Morris on February 10th, 2008 at 8:15 am #

Hello Tina and Josh. I don’t know if you remember me but I am Daniel’s mom. He was in the NICU in Gainesville from 20 Sep-16 Nov 07. He has been at home taking milk by mouth and g-tube. He has self limited his amount to about 2.5-3.0 oz at every oral feed and refuses more if offered. He has never taken more at one time as he should be by now and likes to eat about every 2-3 hours instead of the normal 6-7oz every 4-5 hours for his age. He is on breastmilk fortified with Similac Neosure. I have wonder if the Nissen has anything to do with him not taking in more at one time. Maybe their stomachs can only take so much as a result of the surgery? Definitely asking this question at our follow up in March. I am not sure if this is true but I found it interesting that Ella seems to do the same thing Daniel did and if she is only getting bolus feeds or pump feeds you can’t gauge if she would limit herself as well. I think your new plan of action is going to work. Right now I just go with the flow and feed Daniel when he gets hungry every 2-3 hours and use the pump at night for a little break. I take a peek often at the website but don’t usually have time to write a comment. With Brian still on deployment I am one tired momma. I pray for you guys and think of you all often.
Racheal (Daniel and Thomas’ mom)

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