Ella slept good last night and even retired around 10pm, which is earlier for her these days.

She had both occupational therapy and physical therapy today. Ella wasn’t up for much food, so they switched to some other exercises. And physical therapy was entertaining – the cat decided that she wanted some attention from the physical therapist too!

Kelly mentioned that Ella had a few big meltdowns today. When we use that terminology, it typically means that she is not easily consolable, requires extra oxygen, loses her color and it takes a long time for her to recover. Most of the time this happens when she is not feeling well. We know that she is on the tail end of her cold, but did seem a bit strange that she had multiple meltdowns.

There is a lot still on our hearts and minds, but find ourselves too tired to share much. We’re still praying for wisdom and guidance from Him. Also, praying for Ella to continue getting stronger and feeling better. We love her so much and although this past week has been hard, it sure helps ease any hurts when we look into those blue eyes. She is such a miracle.

1 Peter 5:7 (NIV)
Cast all your anxiety on him because he cares for you.

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

[mp3]/music/i_still_believe.mp3[/mp3]

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

Wow, time has flown by. The Bun’s parents have been together for nearly 19 years and married for 14 years. It’s hard to believe sometimes. There are no festivities planned today, as Josh is battling a sinus infection. But we’ve opted for a rain check to celebrate at a later date.

Ella did have a rough morning with lots of meltdowns at things that were not a big deal – changing clothes, wiping her face or dripping nose, etc. So when the OT session arrived at 11:45am, we were not expecting success. We put Ella in her chair and turned on her favorite video for distraction. She surprised us – she did really good and tolerated more than we were expecting. Again, not a lot of food intake (our goal for these sessions is 1 ounce) and many times we get only a few bites worth into her mouth over an hour session. But today, her recovery time was better and retching was less often. It also seems that once she gets anxious and worked up, the retching is so much worse. A couple of times, she started to get upset, still swallowed the food and avoided retching. It is not very common, but was good to see. Again, very small steps with the Bun!

Overall, it seems that the Bun was feeling a bit better today. Although her nose was still giving her grief, it seemed to be a bit lighter than the past few days. And the nights over the weekend were restless whereas last night, she only woke a few times. Have I mentioned how excited that we are that we are no longer using Captopril? Yes, I feel like I’ve only mentioned it about a thousand times, but it has made such a HUGE difference. And without her SVC procedure, we would still be using it. Thank you Lord!

She did not have physical therapy today, but enjoyed her latest activity of sitting in her Bumbo seat with her laptop computer. Most of the time she is hitting the buttons on accident by leaning onto the computer, but she stops and watches and listens, so you can tell that she is processing. It was getting her excited. Maybe she is a techy, computer geek like her parents? Only time will tell…

Many of the blogs I’ve been reading over the past few days as well as Ella followers have suggested some great books to us since our news last week. So I went online today and placed a large order of books. I feel like I am going to become a book worm, but truth and understanding about this journey is just what is needed for the soul right now.

Aside from that, just resting in truths that I come across like this one:

Deuteronomy 31:8 (NIV)
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

Ella had a mellow day. We did not push her too much since she is working through this cold. You can tell that she doesn’t feel good and yet, she will still manage to smile with just the right stimuli (i.e. Mom making silly faces at her!).

I’m hoping that her symptoms will subside soon. We did not have physical or occupational therapies today which was probably a good thing. I’m not sure that she would have tolerated any pushing for “working out” today. It seems that the cold is the most minor kind you could have and yet, it has such a dramatic impact on Ella including the increased need for oxygen since she is not able to breathe through her nose. We’re hoping that it can remain in the minor stage and that it will pass. When you have a medically fragile child, it is always unnerving to think that something minor can turn into something major that requires hospitalization…it is not that uncommon. For now, we are hopeful that it will pass soon.

Her last shot of synagis to prevent RSV (Respiratory Syncytial Virus) is this upcoming Friday. Then, we won’t need more of these shots monthly until October. And on the vaccination front, she is not due for any until her 2nd birthday. So Ella will actually get a break from needles for a short stint. That is a nice change of pace for the Bun!

I tried to focus today on many things, but just keep finding myself thinking about the baby. It is hard to escape the reality of what is going on and to not think about it. I was scouring the Internet yesterday, just searching and searching. One of the first resources that I came across was String of Pearls. It is a local perinatal hospice. They help families after they receive a fatal diagnosis of their unborn baby and make the decision to carry their baby to term. I was touched by the story of Pearl and her short life. Sure enough, God used an Ella-follower to contact us via the blog and tell us about this site today. Although I had already seen the site yesterday, it was almost His way of prompting me. It just confirmed that I did not find the website on accident and I really should get support during this time. I wanted to contact String of Pearls, but I’m actually kind of shy and was not sure when I would get the courage! Well, this Ella-follower works with the director of String of Pearls, since that hospice program is run at the hospital where she works. So, she mentioned our story to the director today and just encouraged me to contact her.

Before I had a chance to finish this post, the director at String of Pearls emailed me directly. Once again, God making it very clear that I need to go enlist the support that is being spoon-fed to me. She has offered to meet me in person and offer any help that she can during this time. If you go to the String of Pearls site, you can see that she has walked this journey before too. How amazing that a family would take their experience and not only share their story, but create a perinatal hospice program to help other families. It simply made this verse come to mind:

2 Corinthians 1:3-4 (NIV)
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

I’m thankful that there are resources close to home. We were called to Florida for Ella’s care and could not have been in a better place under the care of Dr. Kays and the NICU nurses to save Ella’s life. But I have to admit, I’m glad that there is a local resource for the journey related to our second child.

Psalm 61 (NIV)
Hear my cry, O God;
listen to my prayer.
From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
I long to dwell in your tent forever
and take refuge in the shelter of your wings.

On this Easter Sunday, we are thankful for all that we have in our lives. I’m thankful for my husband, we’re thankful for his job, for Ella Renae and her life, for our nanny who helps to take care of Ella, our home, and all the support and love from our family and friends. Yes, we are even thankful for the cats…who were playing egg hockey in our house this morning!

On a more serious note, we are sad concerning the recent news of our unborn child. At this time, we are just waiting. With a heartbeat of 176 beats per minute, we have not felt prompted to take the life of this child. We are resting in Him and His timing. We know that He is in control of our lives; He ordains every detail. Although our unborn child has a rare and lethal birth defect, we know that He created this baby and has a purpose for this season in our lives.

Psalm 139:13-16 (Today’s NIV)
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Our next appointment is Monday, April 27th where we will get to see our baby on another ultrasound. We know that there is a strong possibility that we could go to any of our future appointments and not get a heartbeat. Either way, we want to put this situation entirely in His hands. Another mom who went through something similar put it so eloquently, “We trust that the God of Creation, the Prince of Peace, the Giver of Life knows us intimately and that He will prepare us, sustain us, and fulfill His promises to us throughout the rest of this journey and beyond.”

He sustained us from the moment we received the diagnosis for Ella, and into all the days that followed in the NICU, and He has carried us each day that we’ve been blessed with her. And the verse at the top of this blog still resonates loud and clear in our spirits:

Jeremiah 29:11 (Today’s NIV)
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

We also know that our experience with Ella changed our spiritual lives forever. Although it has been the absolute toughest experience of life, it has also brought us closer to Him than we knew possible. It almost felt like boot camp for receiving the news last Thursday. We are in a completely different place spiritually than we were 2 years ago when receiving Ella’s diagnosis. It’s almost like He used that experience to prepare us for this one. And this experience and this diagnosis is definitely different: there is no hope that our baby will survive, even to full term, much less outside the womb. Unless it is His will to miraculously heal this baby, we are going to experience the loss of a child.

And although we are sad, we know that we can trust Him, especially seeing how He has worked in our lives over the past two years. Without a shadow of a doubt, we know that He has a plan and can work wonders in what appears to be a tragedy. We continue to feel prompted to think about the eternal consequences versus our desires in the here-and-now.

In the coming days, we thank you for your prayers and ask specifically for wisdom in decisions that lie ahead, peace for today and the coming days, and wisdom to walk this journey faithfully so we may glorify His name.

On a final note, I’ve heard the song below many times, but it had a different meaning for me as I heard it play again. The lyrics and link to the song are below.

I guess because we’ve had lots of rainy days over the past two years and for some reason, He has chosen to let those days continue. And yet we find ourselves drawing near to Him and asking for the only shelter we know to provide true peace.

Bring the Rain
by MercyMe

[mp3]/music/bring_the_rain.mp3[/mp3]

I can count a million times, people asking me how I
Can praise You with all that I’ve gone through

The question just amazes me, can circumstances possibly
Change who I forever am in You?

Maybe since my life was changed, long before these rainy days
It’s never really ever crossed my mind~

To turn my back on you, oh Lord, my only shelter from the storm
But instead I draw closer through these times

So I pray…

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there’ll be days when this life brings me pain
But if that’s what it takes to praise You
Jesus, bring the rain

I am yours regardless of the clouds that may loom above
because you are much greater than my pain

You who made a way for me suffering your destiny
So tell me, whats a little rain

So I pray…

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there’ll be days when this life brings me pain
But if that’s what it takes to praise You
Jesus, bring the rain

Holy, holy, holy
Holy, holy, holy
Is the lord God Almighty
Is the lord God Almighty

Everybody singing Holy holy holy
You are holy
You are holy

Ella had a rough time the past couple of nights. We think she might be battling with a little cold. Her snotty nose, in combination with her extra drool from teething, is causing quite the challenges for her. We’ve had to increase her oxygen and she is retching frequently because there is so much for her to try and manage. A couple of times we’ve had scares where the secretions are so thick that it is blocking her airway. We have to get her to try and drink juice, pat her back, give her more oxygen while she is worked up and turning blue! It is freaky, so we’re hoping that this will clear up real soon.

She did reach the 23 pound mark (10.59 kilos)! It is so good to see her steadily gaining weight.

For our date night, we went to Easter service to celebrate our Lord’s resurrection. We’re continuing to seek Him and His will in the most recent circumstance.

We praise Him for our baby girl. She blesses us so much each day. We’re just so thankful for her…and thankful for all the support and love from all of you.

The Resurrection

We hold so close to our hearts
The cross where Jesus died
But so much more than the blood-stained cross
Is that Jesus came back to life

The stone’s been rolled away
The tomb lay open and bare
They looked for Him, and then the angel said
That He is no longer here

Oh what joy they must have felt
To see Him just once more
To eat with Him, to drink with Him
To receive Him back as Lord

So much did He accomplish
Through His death upon the cross
And in His rising from the dead
He reconciled us back to God

Nothing else could bridge the gap
That sin had wrenched apart
Now we can freely go to God
And receive Christ in our hearts

© By M.S.Lowndes

Ella slept okay last night. Several times, the pulse oximeter alarm went off, so I had to run into her room. At times, it was not apparent what was wrong because her numbers looked fine. When I woke up after getting up several times, I realized that it had to be her cannulas out of her nose. That is the only way that the alarm would intermittently continue to alarm. This happened more than once which made for a less than restful night.

She tolerated her feeding therapy and physical therapy today quite well, which was good to see.

Today was a rough day. We’ve been holding off on our news: I’m pregnant. I’ve been exhausted and sick for weeks now. We had our big debut planned with a cute shirt for Ella to wear bearing the phrase, “Big Sister”. Our hearts were anxious, but we know that we can trust the Lord and that there are never accidents; He always has a plan.

Well, we went for our first trimester screening this morning (I’m 12 weeks, 6 days) and received devastating news. It does not look like the baby is going to live. It has severe abnormalities and defects that make its life not viable including but not limited to: a chest cavity that is not fused placing all organs external to the body (liver, heart, bowel, etc.), fluid on the brain with large portions of the brain not formed, a skull that is open with brain matter floating in the amniotic sac too.

As you might imagine, this came as quite a shock to both of us. I had been holding out hope that our baby would be healthy, but had reservations due to our experience with Ella.

At this point, we just need prayer. The heartbeat is still there and beating quite nicely outside the chest cavity. We are told that there is 0% chance of survival; this is a lethal birth defect. As was the case with Ella, we are told that this birth defect is extremely rare (1:15,000 live births) and that they do not know what causes it and it is not genetic-based. As the perinatologist shared, “I feel like lightening has struck you twice.”

Hearts are heavy at the West home, so support and prayers are the best that we can ask from all of you at this time. We need wisdom and guidance from Him. And at the same time, we are so thankful for our beautiful baby girl that we get to enjoy each day.

We don’t always understand His ways, but hope that this experience too can be used to help other families and be an instrument for eternity. God even used this experience already this morning, when we were able to minister to my OB/GYN. He had to share devastating news with us, but we also accepted it and shared our faith with him. He let us know that our faith has touched his heart. And he became emotional and shared that this reminds him of Job’s experiences recorded in the bible and yet even in the midst of the worst trials, Job had these words to share:

Job 19:25 (NIV)
I know that my Redeemer lives…

Ella slept good again last night! Yippee!

Also, she was in a great mood this morning. We thought her mood might stop with her feeding therapy session just before lunch time, but she kept up her tolerance. Kelly moved her to a different room to change up the scenery and although she did not enjoy the feeding, she did much better.

Many of you ask, so I thought I would try and explain. I know that it seems strange that a baby would not want to touch and finger foods themselves (explore on their own terms), but the feeding challenges go beyond not using utensils or trying “normal” techniques that kids respond to. You have to keep in mind that Ella has had such a different experience than most babies. She has experienced so many invasive procedures in her mouth from all her surgeries and months of intubation, she developed an oral aversion early on. Her body moved the gag reflex from the normal position on the back of the tongue to the front of her mouth. She developed an oral aversion because her mouth does not feel safe. Even light touch on her cheeks or anywhere near her mouth can result in her screaming, head violently shaking from side-to-side, turning blue from holding her breath, and retching.

Along with her mouth, Ella barely likes to touch anything with her hands which is why we have tactile stimulation exercises. Using her hands to explore and changing her oral defensiveness requires lots of exercises and training over a long period of time. It is not something she naturally likes to do or can naturally overcome, like many children. For example, when doing the feeding therapy sessions, some children may not even respond to any exercises near their mouth. Instead, you have to work your way from the outer perimeter of the face in toward the mouth, then the outside of the mouth, and gradually work your way into the mouth. This is why you might see the z-vibe (vibrating stick with different ends) that we place on Ella’s cheeks, face and mouth and even in her hands.

Trust me, this is not something that can be fixed overnight or is a simple change in approach. This is a true problem for many children that takes months and years to fix. This is also the main reason why Ella has a g-tube. Her oral aversion and reflux from her NICU stay was so severe that she was doomed to have feeding challenges. The nissen procedure prevents reflux and the g-tube gives us access directly into her tummy to feed her the nutrients she needs to gain weight and grow while we work on the feeding issues. Realistically, this can take years. Her current therapist thinks that maybe in 3 years she might be able to tolerate a majority of food by mouth versus her g-tube.

On the physical therapy front, she is still making strides but again it is slow. Her therapist tried some new techniques today with Ella that require her to bear her weight on her arms and shoulders. It was something new and Ella does not usually respond well to new things. But it is the next step in strengthening her, so that when she sits up and loses her balance, she can weight-bear on her hands, arms and shoulders. Currently, she doesn’t have the strength and simply falls over.

We’re simply thankful for the SVC procedure and all the strides that she has made on the medical front since that time. We’ve lowered oxygen, increased fluid and gained weight, discontinued Captopril and are getting more sleep. That’s plenty to celebrate.

Psalm 145:6-8 (NIV)
They will tell of the power of your awesome works,
and I will proclaim your great deeds.

They will celebrate your abundant goodness
and joyfully sing of your righteousness.

The LORD is gracious and compassionate,
slow to anger and rich in love.

I’m in disbelief, but Ella actually went to bed at 11:15pm last night and did not wake up again until 7am. Wow. Two nights in a row of lengthy sleep. I won’t believe that this is her new trick, but man, sleep is good.

Well, the scale finally tipped this morning ever so slightly. Now, we are 10.39 kilos (22.86 pounds). I guess it just took her body a few days to decide that it wanted to get more chunk!

We don’t have any pictures of feeding therapy today. It did not go over well. She was not in a place to tolerate it. It just stinks that feeding is such a challenge…something that is so basic and really should not take this much effort. Most children, with some coaxing and time, will come around to putting things in their mouth. It’s just so hard when a child has to “learn” how to eat. She sees the spoon or food and loses it. She can turn from a beautiful, smiling baby into a monster. When you can hold her arm down and get a taste of food on her lips or mouth in between her moving her head violently from side-to-side, most times she just coughs and retches violently and then the tears come. I can’t blame her too much – – if I violently retched every time, I ‘m not sure that I would like eating either. We have to try and trick her by distracting with videos that she loves, so she doesn’t realize what we are actually doing. Without the extra stimulus, she loses it right away. I guess it just makes me realize how long we are going to have her g-tube for feeding…a very long time.

The feeding session wore her out, so she zonked for a bit and then woke to enjoy physical therapy. She has such a great time with her therapist. So cute to look at the pictures of the two of them interacting.

With feeding therapy and physical therapy each four times per week, we are in the process of trying to see if speech therapy can fit in too. Although she has some hearing loss, they still think we should proceed with speech therapy. Ella barely makes any sound each day and we want to see if there is anything that we can do to help that along. Another mom with a CDH baby shared with me that she was told eating skills had to come before talking would transpire. If that is the case, Ella will not talk for a LONG time…but I am sure whenever she does, we are going to get a mouthful from this princess.

In the meantime, we enjoy the facial and body language to let us know how she is doing each day. And that sweet smile, it melts my heart every day.

1 Corinthians 13:13 (NLT)
Three things will last forever—faith, hope, and love—and the greatest of these is love.

Ella did amazing last night. She is officially a night owl and did not go to bed until 11pm, but then she slept the entire night straight through! Her sleep patterns are SO much more normal without Captopril. We are averaging 0-4 times per night…so much better.

She was not up for much of her exercises today, including feeding and sitting up. However, she still had a good time playing with Kelly. And as long as Kelly didn’t ask her to do too much that she didn’t like, Ella was full of smiles!

We received a call pushing her appointment with Dr. Fagan further out till April 23rd. This is her follow-up to her SVC procedure (chest xray, echocardiogram, etc.). So we will need to wait a bit longer to make sure that everything looks good. Clinically, her numbers look great which is reassuring.

She has stabilized on her weight gain and is pretty much staying at 10-10.1 kilos (22 pounds). Dr. Abman wants us to stay at this current food regiment until she has her appointment with Dr. Fagan to make sure we are not pushing too much fluid into her before she gets everything checked out.

The pictures from today make my heart smile. I just love my baby girl so much. The past two years have been such a challenge and yet, I cannot imagine my life without her. She brings so much joy.