Posted (jooosh) in All Posts on November-10-2007

One Hundred and Ten Days. Even seems long spelled out.

The last couple days have been a bit more difficult for me. It so hard to see my baby girl when she’s not comfortable. Her nose is so raw from the CPAP cannulas that she fights to keep it on sometimes.

Ella’s nose will tend to get real snotty too, which reduces the effectiveness of the CPAP. Suctioning resolves the issue temporarily, but it also make the problem worse too. The more she’s suctioned, the more secretions occur…a vicious cycle.

I didn’t go see my girl on Friday night. I let Kerri and Tina spend time with her and I escaped into a movie. I missed seeing my girl, but I needed a break.

We all went to see Ella today though and she looked ok. Tina and I both took turns reading her a story, and the Bun was enjoying it until the CPAP started bugging her. Her pulse and breaths per minute have been elevated while her saturations have been in the mid-90s, an indication of her discomfort overall.

We ran into Dr. Kays today. He tries to give himself a break on the weekends unless he’s on call, but there are some other critical CDH babies that he’s committed to taking care of which is why he was in the NICU.

We talked to him about Ella’s current state and asked his opinion about where we stand. He indicated that he would have a better feel of our direction if her stats were solid, but because she’s not doing as good as we would like at the moment, he’s not sure.

Dr. Kays thinks that Ella’s current not-so-great state might be caused by her increase in fluids (not chest fluid, but too many fluids in her blood). So, he wrote an order to increase her lasix (a diuretic). The fact that that our girl is not throwing up so much is a good thing, but she could also be refluxing without throwing up.

To confirm this, he’s ordered that an upper GI be performed next Tuesday. Hopefully we’ll get a good picture that indicates the severity of Ella’s reflux.

Something that Dr. Kays recommended is that we consider pro-actively performing a surgical procedure to minimize Ella’s reflux. There is only a small chance that Ella is not going to have any reflux issues, almost all CDH babies do. Considering the severity of Ella’s CDH, the fact that she’s been there 110 days, and that her reflux may be directly impacting her lungs from getting better, are reasons he is recommending this procedure.

Another major concern is Ella possibly aspirating her stomach acid during a bout of reflux. This could have devastating affects on our girls lungs, and this operation would greatly minimize that risk.

We’ve not committed to anything yet, and we’ll look to the results of the upper GI to see where we stand. Ultimately, we just want to do what is best for Ella. We just need to pray and ask for wisdom before we make any decisions.

I started my day by reading the book of James. The Lord really spoke to my heart with the following verses:

James 1:2-4
2 Dear brothers and sisters,[a] when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Praise the Lord for his living Word. Thank you for your continued support in prayer.

God Bless.

The Laz Fam on November 10th, 2007 at 11:19 pm #

Those beautiful words from James are a promise for Ella, too. She, too, will be perfect and complete, needing nothing… Blessings to you all… stay strong ~ Love KTJB

Laura Blackwell on November 10th, 2007 at 11:22 pm #

I am so sorry your girl isn’t “comfortable.” It is an overwhelming parent desire to want to ease their discomfort and sad feelings. It must be so difficult to see that thing in her nose bugging her. While another surgery is discouraging (at the very least), as I read your update I am so glad that you have Dr. Kays. I do not know this man, but his judgment has been incredible. God has really given him wisdom. Praying for your rest and peace!

Julie Kirk -Saudi Arabia on November 11th, 2007 at 2:12 am #

One day at a time. Ella’s color looks good, her little body is just adjusting to so many things @ once in her young little life so of course each day brings a newness of some kind. God Bless Your family. I just wanted to tell you that the scriptures you send with your updates as very refreshing to me. God has used you to encourage me today and I praise Him for that and thank you for being faithful servants.

Julie Kirk -Saudi Arabia on November 11th, 2007 at 2:15 am #

special prayers will be said today for Ella’s comfort.
We love Ella

Kelli Billman on November 11th, 2007 at 7:52 am #

Dearest West Family – This is Joan and I’m writing from CO – today Jack is being baptized and we wanted to share his celebration in receiving Christ – Bless sweet Ella’s heart – she is quite the trooper – Our prayers will be for renewal of strength and peace as the three of you move forward. Josh, it is fine to ‘get away’ – even our Dear Lord left from time to time to be refreshed in spirit and body. Our love, thoughts and prayers are with you – hugs and Lord Bless – Steve and Joan

Laura Marold on November 11th, 2007 at 9:04 am #

Wow, This is a great picture. I LOVE LOVE LOVE the chin dimple.
Josh, take some time to rest in whatever way you can . This experience is a marathon not a sprint. Taking naps or weekends away in places with natural beauty like the mountains is my way of decompressing. In places of natural beauty I feel closer to God. I get re-energized. I can think more clearly about long-term plans.
I don’t know what it’s like to go through the experience that you and Tina are having so I have no advise for you there. It does seem like a good idea when so much time is passing to try and have some normal downtime when you can squeeze it in. God loves you, too.
P.S. Did I mention I LOVE the chin dimple?

Kara Snyder on November 11th, 2007 at 12:00 pm #

Poor daddy, it’s hard being a parent. I’m glad you are willing to take breaks. It makes it better for everyone.
I agree with Laura, the chin dimple is fabulous! Kailee has the same chin dimple. I wonder if that is a Snyder trait or just a coincidence.

Char Snyder Jordan on November 11th, 2007 at 3:39 pm #

I want to let Kara know that dimples are not a trait in the Snyder family line, but really, who knows? I think my brother Barry may have had one. Josh, we have been blessed beyond measure with Ella’s success. Please fresh courage take, your God and Savior will not forsake. It is the endure to the end that is difficult. It is reasonable and necessary to take a break at times. Understandable for sure. We know there is lots left to hurdle. You can do it. You are THE DADDY. You will lead, and give sustenance and courage to all. We love you and pray for your strength each day. Give your wife a love for us. LOL Jim and Char

Julie on November 11th, 2007 at 5:25 pm #

Every mommy and daddy gets tired and needs some time away, and I’m sure it’s even more true for you two. Don’t feel bad about it. And it doesn’t mean you’re not Superdad or that you don’t love your girl enough. It just means you’re human.

Mollie Rosng on November 11th, 2007 at 6:43 pm #

Josh and Tina, sorry it’s been a while since I’ve posted…I can’t believe it’s been 110 days since Ella Bun was born. You are on quite the journey and I can only imagine your weariness. Keep on fighting the good fight. You two are amazing parents and Ella is beyond blessed to have you as her mom and dad. We will be praying for wisdom and clarity regarding surgery. All our love,
Jim, Mollie and Family

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