Posted (Tina) in All Posts on December-22-2007

Sorry for the suspense – – it was a rough 24 hours or so – – for parents and Ella!

I came back from my business trip late last night. There was a snow storm in Denver and my flight was delayed 2 hours. By the time we made it back to Gainesville and in to the NICU, it was 1:30am.

I could tell that Ella was not feeling well. Overall, she seemed fussy and not consolable. Her stats weren’t great either. As you know from previous posts, this typically means that something is wrong with her lungs.

The last time I saw Ella was Tuesday night. That was the first night that I had not seen her look good. At that time, she was getting a blood transfusion. Once the transfusion ended, her stats went up a bit. But that was the first time since her nissen surgery that she did not look strong. I mentioned something to the nurse since this can typically be the start of a downward trend for Ella.

The next few days brought lots of activity for Ella: an MRI, a series of vaccinations, fever, switching her diuretics to oral versus IV, etc. Slowly over the past few days, it seems that her saturations were continuing to trend downward. Since there were so many changes, it made it tough to distinguish what might be going on.

First, they thought it was the lasix. They switched it to oral, but did not increase the amount. When you switch from giving lasix from IV to oral, you need to increase it in order to have the same impact (the gastric acids in the stomach lessen the effect). It took them one day to figure that out and adjust that component.

Then, they gave her several vaccinations. They gave her Tylenol to help with her fever, but we think that the vaccinations made her feel crummy (pretty typical).

During these times, Ella was having episodes frequently. When she would fuss, she was not consolable. She would get sweaty and decompensate to the point where she was not getting oxygen. It did not help that Ella was assigned to nurses that had never taken care of her.

The nurse practitioners are concerned about Ella, so they started to run a bunch of tests to figure out the problem. They took a blood gas, it was fine. They did 2 CBC’s within the past 24 hours; those have checked out fine too. The chest x-ray yesterday seemed okay, but the one this morning showed something in the left lung. They think either infection such as pneumonia or atelectsis. To be safe, they started antibiotics in case there is infection.

Based on Ella’s history, we think that it is her lung collapsing (atelectsis). Everything points to that versus an infection. Today, they tried adding 2 more diuretics; they are thinking that this might help. Also, instead of putting her back on CPAP, they tried increasing the flow of oxygen (first to 800 ml, then to 1 liter).

Tonight, her oxygen is set at 1 liter and she looks better than she has in days. The oxygen was increased around 7pm and we think it has made a big difference. She is asleep – – her heart rate is 150 and her saturations are 100.

She is scheduled for another blood gas in the morning and another chest xray. If her saturations dip below 98, there is an order to increase her oxygen flow up to 2 liters. This is what they will try to prevent going back on CPAP. If she has to go back on CPAP, they will put her back in NICU 3.

We are hoping that the increase in diuretics and flow of oxygen might be the ticket to getting her over this latest challenge. Please continue to pray for our baby girl. We are still holding out hope that we can take the Bun home soon.

Please pray for our health and peace too. We are switching apartments this weekend and are trying to get everything set up and ready for Ella. We are trying to accomplish so much within a few days, and we definitely do not want to get sick.

Thank you all for joining us on our journey and for your continued prayers. We praise and thank the Lord for our beautiful baby girl.

Gloria & Red Jacobsen on December 22nd, 2007 at 10:08 pm #

Ella is quite the little fighter to date she has moved mountains of obstacles in her path to recovery!! She is one amazing baby!Your faith and love of Jesus,no doubt will continue to carry you through this time.I am so thankful you have a faith-filled prayer team praying for Ella all around the world! So glad to be a part of Ells’s team!!

Joel Snyder on December 22nd, 2007 at 10:25 pm #

Ella, I am glad to hear that maybe your team of caretakers and the return of your Mom have the answers for this little bump in the road to going home. Keep taking those little baby steps and soon you will be home. Josh and Tina please take care of yourselves so you can take Ella home when ready. I Love you guys. Grandpa!!!!!!!!!!!!!!!!!!!!!!!

Laura Arneson (Adrienne' friend) on December 22nd, 2007 at 11:09 pm #

Josh,Tina and Ella hang in there, we will pray you through the night, take special care of each other. GBYSO Laura

Tracy on December 22nd, 2007 at 11:37 pm #

We are still praying for you. Slow and steady wins the race. God is good! None of this is out of His plan. Praying for peace and health for you all!
Night bun!

Kristen on December 22nd, 2007 at 11:51 pm #

What a sweet Bun indeed! Oh, I love seeing her sound asleep, knowing she is feeling better now. Yes, blessings as you move!

deanna on December 23rd, 2007 at 7:11 am #

what a sweet girl indeed i hope she gets better

Williamsburg on December 23rd, 2007 at 8:36 am #

Last night Pastor Shawn was talking about how, even when things are really difficult, we often aren’t aware of how much worse they’d be without Jesus – his incredible impact in the world over the last 2000 years and what a difference His presence makes in our own personal lives. It’s so hard to hear about difficult days for Ella and Mom and Dad, but we just hang on to the truth of how much worse it would be without the Lord’s love, presence, guidance and trustworthiness in your lives. I’ll be honest – it is SO hard not to be around the corner and able to come help move or cook or just give you hugs but but it would be 100x worse if we weren’t able to trust in God to be there with you. Glad you’re home safe, Tina, and that Ella has stabilized. Best of luck with the move and all you have to do; we are grateful for the gift of your friendship in our lives and for Ella-bun’s amazing impact in the world. Love you much. XOXOXO

Heidi Anderson on December 23rd, 2007 at 3:05 pm #

Ella’s pictures are so precious… I just want to give you all a hug. We have been continuing to pray for you three… wish you could be home for Christmas, but all in Ella’s time. Merry Christmas from our family to yours. Ella is always on our hearts, in our minds and with us while we are on our knees before our God!

The Lizotte Family on December 23rd, 2007 at 7:54 pm #

Lord Please help the bun get better and give her strength to come home when she is ready. Your plan is ours to follow we are behind you all the way.

Jim and Char Jordan on December 24th, 2007 at 6:34 pm #

Our computer had a bump and the phone line too. Glad to hear that you are moving forward despite the complications that seem to be part of Ella’s life right now. We will continue to pray for health for you and Josh and baby steps for Ella. We love you and wish you a wonderful Christmas Holiday. LOL Jim and Char

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