Posted (jooosh) in All Posts on December-20-2007

Ella had an OK day today. Her oxygen saturation hasn’t looked as good the last couple days, and she does seem to be a bit more fussy.

I found out from the nurse practitioner that her Lasix had actually been weaned since they had been administering it through her G-Tube. This was a little disconcerting because I would have thought they would want to see how she handled it going through her stomach first before they started weaning it.

I may be wrong, but I’m thinking this might be the reason for Ella’s lower saturation numbers the last couple days. I think the practitioner had thought the same thing which is why she brought the dose back up to the level she was getting intravenously. She also gave her a little extra dose to help her along.

It’s my hope now that they were able to catch it in time before our girl decides to go down that known slippery slope. The next few days will be telling.

She also received her vaccinations today. This could also be contributing to her discomfort. This is expected though and they will be giving her Tylenol over the next 24 hour period to help her feel better, and to keep any kind of fever at bay.

The nurse practitioner also discussed some preliminary results of Ella’s MRI. The good news is that there is no evidence of recent bleeding in her brain or other eminent problems. The news that comes as not much of a surprise, considering the seizures she experienced a few months ago, is they do see some cell damage in the left hemisphere of her brain. We did not go into details of the exact location or how extensive, but they would like to talk to us in the coming days about the specifics.

We hope as we find out more, it can help us better tailor Ella’s physical and occupational therapies to help overcome any deficiencies that this may have caused. This is also very different than an adult experiencing this kind of damage. Her brain has not yet developed its paths so there is a lot of opportunities for it to rewire itself to work around any damage that occurred. We just want to be sure to give our girl the best opportunity to do so.

Ella had nurse Marla taking care of her again during the day, and I was comforted to see nurse Janet with the Bun tonight.

Our girl seemed to be having trouble getting comfortable. We tried a few different positions, changed a wet diaper, and still no luck. Janet then offered to hold her (I was wearing a mask because I’m not feeling 100%) and so we tried that. She settled a little but then starting fussing again.

It was time for her Tylenol so I just held her while Janet prepped her meds. She really started fussing…then….there was this significant noise emitted from my daughter followed by a not so rosie smell. We then proceeded to put her in bed so we could investigate. Needless to say I quickly offered to handle the binky side of the baby while Janet went in for a look.

Well no wonder why she was fussing so much. I would have fussed too if I had all that wanting to come out of me. After we got her cleaned up she seemed a lot more comfortable.

It took some doing but she finally went to sleep (yay).

Tina comes home tomorrow night and we’ll be spending the weekend getting the new apartment set up.

We pray that Ella’s discomfort is only temporary and not a sign of her taking steps back. As much as we’ve appreciated the NICU, we are really looking forward to taking our girl home.

It’s on days like today that I’m reminded:

“Look at the baby, don’t look at the numbers…look at your baby.”

That’s what were told to do…over and over. I get it, but it’s hard when you see the numbers not looking like you hope they would. Add to that a baby girl who seems a bit more fussy, and your experience with past events, and you start feeling a bit anxious.

“Look at your baby”

Oh…yes…she is so pickin’ cute. She is so wonderful and has such an incredibly sweet spirit. She was knitted together by our Creator. Everything about Ella is exactly how God intended her to be. He has a purpose and a plan for her life. He knows exactly all the events that need to take place, and is in complete control of every circumstance surrounding her.

These are not things that I’m trying to convince myself of, these are things that the Word of God promises us. Peace when we trust in Him, comfort when we surrender to Him, grace and forgiveness when we confess to Him.

If any of you, who have read this blog, are still wondering where our peace comes from, let me say it plainly: Jesus Christ

Oh, my flesh will get in the way, and I personally struggle with anxiety, but when my eyes are fixed on my Lord and Savior, there is a peace that washes all of it away.

Whew…I think a little bit of my Father was coming out in me there. Those of you who had the pleasure of knowing him, understand what I’m talking about.

It’s 11:30pm, and as I look around the apartment, and listen to the silence, it really blows my mind that we’re still here in Gainesville Florida. Our baby girl has been in the NICU for one hundred and fifty days! We originally thought we’d be here, at the most, 12 weeks….but we’ve been here just a little longer than that. I know without a doubt that there’s a purpose for us being here so long, and even longer now, considering we’re not planning on going back to Denver until summer.

We have been so blessed by all the people we have met…the other NICU parents, their babies, the amazing nurses that have taken care of all of us, other CDH parents, family of friends, friends of friends, and others who know us through our blog.

We’re here because of this sweet girl God has entrusted to us, and we continue to stay here for the same reason.

Lord, we praise you for this day. We thank you for this journey you have set us on, and trust in your path you have laid before us. Let you will and direction be made clear to us daily as we look to you for wisdom and guidance. Your name is above all other names, there is none greater than the great I AM. We trust you Father. Amen

Gloria & Red Jacobsen on December 20th, 2007 at 11:37 pm #

The little Bun has really come a long way.Her pictures over time of course show a huge difference! Lots of prayer to keep you & Tina lifted up. Pretty soon the Bun will be home to see all the lights on the tree! How babies love the shiny lights of Christmas. Glad I checked in tonight to see how she was doing, she looks like she’s dreaming and not worried about a thing with her father, by her side. Rest easy all is well. God bless all three of you! prayers,of course! Sincerely, Gloria & Red

Lizotte Family on December 21st, 2007 at 6:43 am #

One hundred and fifty days is a long time. I know that you will soon take the bun home and and dote on her every need. Baby’s are amazing creatures and you have a really good survivor there. We keep you in our prayers and in our hearts everyday.

Joan and Steve Odell on December 21st, 2007 at 8:54 am #

Dear sweet precious Ella – You and your parents have been a very special blessing to each of us. We feel like you three belong to us now – my goodness, what a family you have, girl. Merry Christmas to all of you and a blessed and joyous New Year! “Commit to the Lord whatever you do and your plans will succeed” Proverbs 16:3. Hugs and Lord Bless, Steve and Joan

Joel Snyder on December 21st, 2007 at 9:06 am #

Ella, It sounds like you have had really busy day with your shots and some adjustments. I will pray that you will keep taking those baby steps forward. Your Mom will be home tommorrow and that should help both you and your Dad. I will check on you later. Love, Grnadpa!!!!!!!!!

Stacey Haygood on December 21st, 2007 at 10:48 am #

Thinking about all of you everyday…

Morgan Mayes on December 21st, 2007 at 11:26 am #

Amen… Even though I’ve only known of her for an hour, God has already used Ella to remind me of how steady and consistent and faithful He is. Thank you for letting God use you to show His love to others. Continue strong, keep looking to Him as you are. He is faithful. I’m so glad you are able to go back to the truth. I praise God that you know Him and can lean on Him right now.

kara on December 21st, 2007 at 12:57 pm #

Enjoy having the nurses change those diapers while you can. Pretty soon you are going to have to be on the other end. Yeah, even the disgusting things are wonderful when it’s your baby in your house. Ah, and the day she poops all over you… what a sweet thing to look forward to. he he he

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