Posted (Tina) in All Posts on April-15-2009

Ella did not retire until 11pm last night, but then she slept well. That was great since she is still battling the sniffles.

We missed our PT session yesterday. Unfortunately, Ella’s PT messed up her foot badly and had to cancel the session. But, she came today so that Ella could get in her physical exercise. Even though Ella is still recovering from her cold, she found the energy to enjoy the physical exercises with her PT. She missed her yesterday – they are buddies!

However, she did not have the tolerance today for feeding. Kelly and the OT were able to get a few bites in, but she decided pretty quickly that she was not up for feeding exercises. So they tried focusing on other things and using finger puppets for distraction. I was upstairs on the phone and once she decided that she had enough, I could hear her melting down several times in a row. Her lung capacity has definitely grown. She cries hard and very loud. It is so tough to hear your baby crying so hard…you know this is good for her and we have to continue feeding exercises for her overall good, but it feels like you are torturing her sometimes.

The OT is even trying to help us come up with tactics for bath time. I haven’t really mentioned it, but Ella used to like baths, and ever since her last hospitalization, she does not. We’ve tried singing, toys, trying to make it fun. But, nothing has worked. So, I try to limit it to 5 minutes and go very fast. She just melts down, cries, gets worked up with lots of secretions, starts retching and requires more oxygen. She cries from the time you remove her clothes and carry her to the bath until she is dry and dressed again. It is so hard to endure. Again, it just makes me feel like I am selectively torturing my princess. Sigh…I’m sure this will get better someday, but it is a tough thing to endure in the evenings.

Onto our other child, I was very touched when a mom commented on our blog the other day. For some reason, I recognized the name, yet I couldn’t remember how. Then, I remembered. I had just found her blog the other day via the String of Pearls site. Her family just went through a similar situation and delivered a baby boy in January 2008 with a fatal prognosis. How did this mom know about our family? Via an email exchange, I found out it was through a devoted Ella-follower who has been with us from the beginning. The world is so small and I am amazed to see how God is already orchestrating the details.

It has still been just shy of a week and I find that I am still numb and in shock. I have barely digested the news from last week. My best friend has assured me that she has cried and grieved enough this past week for both of us. I’m thankful for that, as I have not reached the grieving phase yet. I’m still processing the reality of what is actually happening.

Most families don’t learn about this type of prognosis so early. The most common is during the standard 20 week mark when people are trying to learn of the gender. I am not sure how long this baby will live inside me and how long this will continue. Will the heartbeat stop in the coming days? or will I carry this baby for several weeks, maybe even close to term? There is no way to plan or to know what will happen. As someone who likes to plan in advance, I find it tough to deal with so many unknowns. And just as it was with Ella, I find myself in another circumstance where I have no control and must completely surrender to Him.

It has been amazing to see the outpouring of support. I had a chance to talk to the director of String of Pearls today. That was a blessing. She has such a gift to help other families. It is amazing that she has the strength to do this ministry. And it’s not like she doesn’t have anything going on – she is a wife and mother of 4 children. Wow. We are meeting for lunch next week where she will give me all the information on how her program works.

I think the most reassuring is that there are people close-by that have experienced something similar and will help us navigate the journey that lies before us. We were alone with Ella’s diagnosis and had to be resourceful on our own, but the Lord has provided people this time to surround us locally. It is just nice to have that type of support.

For some reason, music is healing to my heart these days. In listening to the radio, songs that I’ve heard for a long time are taking on new meaning with this circumstance. This one resonated with me today.

I Still Believe
by Jeremy Camp


Scattered words and empty thoughts
Seem to pour from my heart
I’ve never felt so torn before
Seems I don’t know where to start
But its now that I feel your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don’t see, I still believe

Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It’s my heart I see you prepare
But its now, that I feel, your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don’t see, I still believe

Well the only place I can go is into your arms
Where I throw to you my feeble prayers well in brokenness
I can see that this was your will for me
Help me to know that you are near

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don’t see, I still believe

I still believe (repeat 8 X’s)

Ohhh, I still believe, I still believe

loren l. on April 15th, 2009 at 9:53 pm #

Hi Tina, I’ll be praying for you. I also recived a fatal diagnoses early on. And i recall clinging to every day as another moment for a happy ending. It was my coping mechanism. But good god woman since you made the announcement i have done nothing but pray for a miracle. Everybody deserves one.

Laura Marold on April 15th, 2009 at 10:12 pm #

Dear Tina, Just thinking of you and saying a little prayer. I just can’t express in words the upset I feel at your news. Sending you love, Laura M.

Kim Chavez on April 15th, 2009 at 10:20 pm #

Tina and Josh, your faith never ceases to amaze me. You are an inspiration for all who know you and have followed your story. I was devastated to learn the news of your second child and will say many prayers for you all. I’m just so sorry that this has happened. You are incredible parents to Ella and I love seeing the pictures of her smiling…she’s a beautiful little girl. We love you.

Eve Sheridan on April 16th, 2009 at 5:40 am #

Every time I look back at previous posts and then re-read the current one, I am blown away at how far Ella has come in her health, beautiful personality that shines through the photos, and the unbelievable amount of strength that you have as her parents. Also, I just visited the String of Pearls web site and tears are now running down my cheeks. I am so glad you have connected with them. Please let us know if there is anything we can do for you, no matter how large or small. Sending love from the Sheridan family.

megan on April 16th, 2009 at 8:24 am #

Hi Everyone.. I am not sure if you want to try this or not but when you give Ella a bath maybe put her in a bathing suit and let her sit inside with that. The comfort of clothing may help feel like it is safe and she is not going to have anything done to her. May sound silly or not even work but I am wondering if that will help.HUGs.

Adrienne (Melissa's sister) on April 16th, 2009 at 9:48 am #

I hate to offer advise.. but you just never know what might work… have you tried getting in WITH her? I always just got in and held them. In fact – we never used a baby bath! HA! The things you think you need… (Also – so HAPPY to hear you connected with the Pearl girl! She is amazing and has been such a blessing to my friend Corie. You are in GOOD HANDS! *His* hands! And amazing because they are RIGHT THERE in Denver!)

Lisa Tufano on April 16th, 2009 at 1:49 pm #

You guys have Herculean strength. Ella looks great, and I am glad that you have so many wonderful people locally and virtually to support and help guide you through these challenging times. I don’t have any sage advice to offer, but just know that you are in my thoughts.

Darcy on April 16th, 2009 at 2:31 pm #

You and your family have been on my heart for days since reading about your baby. I faithfully check up on you and Ella and how she is doing. My son was also born with CDH in March of 2007, but has had no issues really since coming home from the hospital, but that is how I found you.
I just wanted you to know that you are in my prayers, your faith has been an amazing witness to me and I will continue to lift you up during this time.

Merrilee Batchelor on April 16th, 2009 at 3:50 pm #

OH, I could just eat her up, she is
darling,the big yawn is so cute,
Do not bathe her, but do put her
in a duckey pool, with another smaller
ducky to sit in and another to play with, have a hose from your tub hooked’up so you can blow up the
ducky, she can sit in the ducky,
and maybe blow bubbles from those
little bottles of bubbles to her, or
on the duck, and laugh, and sing
Quack, one little ducky, ruled the
others with a Quack, Quack Qucck!!!
How ever the song goes? It may work
or even blow a ducky up and put her
in the tub with it on?
do not give up, bath time gets them
all tired out, Music heals, too, as
you have said today in your bolog, so
play fun music for her.
Prayers for your family, and
darling little Ella,
Love and kisses from Temecula.

Merrilee Batchelor

Julie on April 16th, 2009 at 4:09 pm #

Must be something going around. My daughter has also decided that bathtime is also torture-time. It’s so much fun!

Joel Snyder on April 17th, 2009 at 10:07 am #

Ella, I am happy to hear that you got to do your PT. I think you really like it and look forward to your sessions. Sorry to hear bath time is such a drag but I think with time that will change. Tina I am glad to hear that you are continuing to make connections and seeing and talking to those who have traveled this road before you. I want you to know I am praying for both of you. Have a good day and get ready for the snow. Love,Grandpa!!!!!!!!!!!!!!!

Debbie Thomley on April 19th, 2009 at 7:37 pm #

Dear Tina and Josh, You do not know me but, I know you from Ella. You see my grandson was in nicu with Ella. Matt and Abby Searles are my children or at least Abby is my daughter. I feel as if I know you and all your trials. I have to admit I was stunned when Abby called me. I know you and Josh both are very devoted parents and Christians. There is so much comforting scripture I could quote but I know you probably know it all. In 1995 my 19 year old son was injured and is a quadraplegic. There is something about watching your child go through so much that you learn to lean every second of every day on the comfort of the Lords arms. As you well know life sometimes makes no sense but the Holy Spirit is always present to hold us and comfort and console. Have you read the book The Shack? My son told me it helped him to put the trinity into prespective for him. Prayers for a miracle for the baby will be lifted up daily from the Thomley house. Being sure to keep Ella, you and Josh lifted up also. GODS PEACE TO YOU ALL. Debbie Thomley

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