Posted (The West's) in All Posts on February-1-2008

Thank God, Ella slept pretty solid last night. Nobody was in the space next to us either, so we all got about 5 hours of sleep in. We’re still really wiped though because we’ve had minimal sleep overall during the last several days.

Our day started with the nurse practitioner giving us an update. This was great because we asked for more communication and we were getting it. Plus, the nurse practitioner is one that is part of the pediatric surgery team that works directly with Dr. Kays. All of this to say that she is a familiar face for us and is such a sweet person. We just love her. So, our day started with an update from her.

She knew our concerns and was doing her best to get them addressed. For example, we were a bit frustrated with the level of care in the Intermediate Pediatric floor. It was not appropriate for Ella since she has been having these “episodes” where she can down spiral quickly and become air starved, if she is not attended to quickly. So her first change was that she was moving Ella upstairs to the PICU (pediatric intensive care unit), where she can get more focused attention.

The move to the PICU was a good one. We feel like this is the right place for our girl. Plus, the room has a TV, which Ella has discovered. =)

Also, per the recommendation from the dietitian they’ve modified Ella’s formula. She’ll be receiving Pregestimil which will provide all her nutrition, but should be easier for her to digest than the Similac (they are concerned that the Similac might have caused some of Ella’s fluid retention issues, so they want to try a new one).

Dr. Kays also made some dosing modifications to her Sildenifil and Bumex. He’s increased her Sildenifil by 25% and spread it out over increased delivery times, including the continuous feed at night (this is the heart medicine). The Bumex was also bumped up as of last night to 1 mg twice a day. This dose is more than we’d like to see Ella receiving on a regular basis, but it may help reduce her fluid retention in the short term. And because her labs look good, Dr. Kays is not concerned with this dose at this time.

It also looks like Ella is teething for real this time. This may explain some of her increased agitation. Our other theory is some possible strain in her GI system caused by the Similac. Either way, she’s been placed on a prophylactic dose of Tylenol and that seems to be helping her.

This is the plan for the weekend, and we hope it does the trick. So far, it looks like Ella’s numbers are going in the right direction, we’ll just have to see if this gets her to a place where we all feel comfortable taking her home. Keep in mind that she is still on 1 liter of oxygen.

We have had several NICU staff coming up to visit our girl. We’ve been so blessed by seeing their friendly faces and their love for our girl. They’ve also offered support to help us if we need it as well.

Ella is excited to see her grandpa tomorrow. Can’t wait for him to meet her.

Although our hospital journey has been extended, we know that we are right where He wants us to be today and that is a good feeling. Thanks for continuing to lift up all three of us to our Lord for His strength, mercy, and patience.

Gloria & Red Jacobsen on February 2nd, 2008 at 12:36 am #

Gosh she is just sooo cute! I love that picture of her and her dad watching TV ! Don”t worry we”re prayong very hard for all three of you!

The Brittain Family on February 2nd, 2008 at 2:57 am #

Praise God. Looks like things are settling down for the West family after an altogether way too exciting week. Hope you’re able to recharge a bit now that she’s in a better environment and Grandpa’s visit can’t hurt the prognosis! : ) She looks great so overall, she seems to be doing well although it’s good to get those tweeks and special attention that she still needs. Hey, look at this week like the “test drive.” Now when Ella gets discharged hopefully everyone will be in better communication and have a plan for how to provide for her needs when she does have a crisis point. You remain close to our hearts.

Joel Snyder on February 2nd, 2008 at 4:41 am #

Ella, I am getting ready to go to the airport and will be in to see you tonight. I am praying that you keep those baby steps forward. I will see all of you later. Love, Grandpa!!!!!!!!!!

The Lizotte Family on February 2nd, 2008 at 6:44 am #

I’m relieved to see things turn around for you guys! You guys are wonderful parents, I pray for rest and recovery for all of you.

Char and Jim Jordan on February 2nd, 2008 at 9:21 am #

I am so grateful for the experience that has given everyone a “Test Drive”. Grandpa will be there to bond with Ella, you two he has already covered. He will provide some needed relief. He is a tender soul. I know you two know. I can’t wait to see him on the blog. Can’t wait to see Ella feel of his spirit. What a blessing. We love you all. We pray for Ella’s success. Bless this day. LOL Jim and Char

John & Estela Williams on February 2nd, 2008 at 10:39 am #

Praise the Lord… Grandpa’s are the best. God Bless his trip and their 1st visit together.

Williamsburg on February 2nd, 2008 at 11:31 am #

Safe travels to Grandpa, and continued love, prayer and blessings to all the West family. XOXOXO

Adrienne - Melissa's sister on February 2nd, 2008 at 12:59 pm #

OMIGOSH I’ve been offline for a few days and now I’m still in tears after reading the updates from the last few days… OMIGOSH HOW EMOTIONAL! I so agree with “WIlliamsburg” (I think it might be your Dad) in one of the last posts that mentioned that so many people have been petitioning the Lord for you all… it’s true. Over here across the world I run into Kaiden’s teacher (Julie Kirk) each day and we give the latest updates and then I see my friend Laura and we do the same… and then there are others at church who ask too… and I’m sure it’s the same in TX and TN and MN… and of course COLORADO! When *you* hurt we all hurt! That is the beauty of the body of Christ. We can’t be there with you physically, but we are there through His spirit – lifting you up when you are weak – praying for his strength to fill your bodies and minds.

Lord, we thank you for the details in all of this… we pray that you would sustain this precious family and that you would continue to give them wisdom and clear direction AND SLEEP!

Love across the oceans!


P.S. Tina – so proud of you for speaking up when it was necessary! And Josh – so glad you were THERE when it was MOST IMPORTANT! ; ) God is in the details.

Janell Reyenga on February 2nd, 2008 at 1:27 pm #

Love light and all the divine blessings our creator can bestow upon you…….. and your lovely angel Ella….. she is ABSOLUTLEY BEAUTIFUL….. love love love
Janell (a stranger in Texas)

Laura Marold on February 2nd, 2008 at 2:08 pm #

Hi there! Just reading and catching up. Hope you both can get some more rest sometime soon. Love, Laura M.

Grandpa Jack on February 2nd, 2008 at 5:42 pm #

I will continue to pray and ask for God’s continuing blessings for the Bun!!
I ask for peace for both you and Josh during this trying time.

Love Grandpa Jack

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