Ella had a pretty good day. Her snotty nose is still present, but she seemed to be in a decent mood. We did not have any therapy appointments today, so Kelly and Ella just hung out together and played lots. Over the past week or so, her new favorite activity is sitting in her Bumbo chair and playing on her laptop computer. Apparently, the charm was still there for her today.

Also, she seems to be exploring with her tongue more. She’s been known to play with it inside her mouth, but now she is exploring with it outside her lips. When she was concentrating on her toy, it would roam out and twist around. That may seem minor, but any exploration that involves her mouth is a big deal. Later when she was eating, she forgot that there was food all over her face. So, she let out her tongue and it got covered with sweet potatoes. Oops – that wasn’t positive reinforcement for her tongue exploration! Speaking of sweet potatoes, her first feeding session was pretty quick (she wasn’t tolerating much without a meltdown), but the afternoon session seemed to go much better.

Bath time went much better tonight. It still was not something she wanted to do and she fussed off and on, but not like the normal screaming throughout the entire bath time. I didn’t do anything different; I guess she just had more tolerance and was in a better place. It’s just a one-off experience, but it would make it so much more fun if she decided that it was not a torture treatment!

Kelly had to drive to Colorado Springs this evening and Daddy worked late. So, it was just me and the Bun hanging out together. We had a nice time playing. Her smile just melts my heart. I’m so thankful for her.

When I look at her and consider that her brother or sister is not going to survive outside the womb, I get sad. I remember the endless days and nights in the NICU that lasted for 6 months, not knowing if Ella would live. The only serenity is knowing that He has a plan and trusting that He knows best, even when we may not be able to see the big picture and how this experience fits into our lives.

Too Many Burdens
by Ellen Bailey

You may sometimes feel your burdens are too much
That they cause you worries, heartaches, and such
You go to bed each night with problems on your mind
Hoping by the break-of-day some relief you’ll find

But God never gives us more than we can bare
Don’t be afraid to call on Him in your darkness hour
Place your trust in Him and your troubles He will hear
He will help lift your spirits and calm your fears.

Yeah for the sunshine! The high reached 60 degrees today with clear blue skies and slowly started melting all the snow. Knowing Colorado, we will still be in for more snow before the warm weather decides to make a permanent home here for the summer months.

Ella slept well last night, but started getting cranky at 6am, which is early for her. I took care of her from that time till about 8am, then switched places with Josh. Through my slumber between 8am – 10am, I could hear Ella all the way down the hall screaming (through shut doors). It just sounded like she was giving her Daddy a hard time. Man, her temper is fiery!

Although we are keeping Ella’s volume of food the same, we have started to increase the daily feeds and decrease the amount given at night via the food pump. We want to take slow steps to see if we can get to a place where we are just feeding her during the day and not using the overnight food pump. We’ve taken small steps up till now, but so far, so good.

The Bun and I had a good time playing today. I did not have the camera handy to show off her sitting up and smiling routine, but she did a good workout for an hour! Her endurance is definitely getting better. Once I let her rest for a bit, she made sure to let me know that her nose is still bothering her too (pictures above). I can only hope that will go away this week and that we do not catch other cooties on our visit to Children’s Hospital on Thursday.

Psalm 143:8 (NIV)
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.

We’ve been stuck inside all day due to the snow. It didn’t stop snowing till about 7pm…non-stop since yesterday! And tomorrow, the high should be 60 degrees and then close to 80 degrees by Thursday. Wow…the weather here is so strange!

Ella is still battling the sniffles. I feel bad for her that this cold has held on for so long. I’m hoping that it will subside this week.

We do have her SVC follow-up doctor visit this coming Thursday. She will be getting a chest x-ray and an echocardiogram. I will be so curious to see how the flow is working in her SVC. I hope that it is the same, if not better.

Once again, we just can’t get enough of those Ella smiles. It seems to turn the darkest days into the brightest ones! For now, just looking forward to another day of rest on this snowy weekend.

Job 8:5-6 (NIV)
But if you will look to God
and plead with the Almighty,
if you are pure and upright,
even now he will rouse himself on your behalf
and restore you to your rightful place.

For some reason, Ella’s cold got worse last night into this morning. She was requiring about 1.25 liters of oxygen overnight and during today to maintain her color and saturation. This is nearly double the amount for her. And it is simply because her nose is so stuffed that she can’t get her needed oxygen therapy through her nose. I feel so bad for her and yet despite the fact that she feels crummy, she still manages to smile.

Yesterday, we experienced a lot of rain that was a mix between snow and rain as the temperature fluctuated. Then starting about the middle of today, it stayed cold enough for the snow to stick. It is not supposed to stop snowing until mid-Saturday. So, we are stuck inside and get to look out the windows and enjoy the snow!

Even though the snow was heavy, the nurse still came to see Ella this morning. And although she could hear her congestion, she confirmed that her lungs still sounded clear. That was a relief. Also, Ella weighed in at 10.73 kilos which is 23.6 pounds. It is almost unbelievable to see how she has gained weight since her SVC procedure. From October – the end of February, we went from 7.8 kilos to 8 kilos. Very little weight gain over 5 months. Since her SVC procedure on February 25th, she has gone from 8 kilos to 10.73 kilos, in just under 2 months. Man, it is so much easier to get her to gain weight, now that we do not have to worry as much about fluid issues! Praise God!

And even though the snow got heavier in the afternoon, the PT made it through the snow in her 4-wheel drive vehicle. Ella always enjoys her time of physical therapy. At least today, the cat was asleep and did not try to intrude on the session!

As we prepare for the weekend, we are taking to heart the words of Dr. Charles Stanley as read in a devotional excerpt:

During this life, hard times are inevitable. Some watch a loved one suffer and die; others are wrongly accused or mistreated. Then there are people who endure crippling ailments. The range of human pain is broad, but there’s only one place of true comfort.

Human instinct urges us to take matters into our own hands; in contrast, the Lord requires that we patiently and expectantly wait upon Him. He also tells us to surrender what we think is right and instead submit to His plan. Unless our focus remains steady on Jesus, circumstances can overwhelm us.

Isaiah 64:4 (NIV)
Since ancient times no one has heard,
no ear has perceived,
no eye has seen any God besides you,
who acts on behalf of those who wait for him.

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

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

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

© By M.S.Lowndes