| |
|
|
|
|
|
|
|
Ella had a great day.
However, it didn’t start off so good. Ella was due for her last round of synagis about a week ago, but the medicine didn’t show up. We had to go through insurance again, get approval letters, etc. In any case, the medicine came yesterday, so we wanted to get it administered as soon as possible. The nurse was willing to come this morning between 10 – 11am. Unfortunately, she was running late. By the time she arrived, it was 11:15am. Ella was very upset as the needle poked her twice, once in each leg. Unfortunately, her OT appointment was right afterwards at 11:30. The nurse and occupational therapist literally passed each other at the front door. Ella was still upset and so it made the OT session a total failure. Although I was doubtful, we still tried feeding. That didn’t work, so then we tried just playing (reading books, playing with her laptop, etc.). Ella was not even willing to do that activity. She was done.
All it took was some beauty sleep and Ella was smiling again. It was such a nice day here in Denver – sunny and 75 degrees. So, I decided to take her to the outdoor mall that is 5 minutes from our house. She got excited as I put her in the car…and to think…we were not going to a doctor’s office!
While we enjoyed the sun, we also took notice of the tulips that were in full bloom in various colors around the mall. I had to stop and smell the flowers for the day.
Wow, it was touching to me to read the inspired words that the Lord gave Josh to write to our son on yesterday’s post. I think it perfectly describes where we were at during the entire experience and describes the peace that He has given us through this time.
I’m so thankful for all of you out there. Some of you post comments and many do not, but we know that you are walking the journey with us and the support is invaluable. All of the thoughts and prayers are not going unnoticed.
Yesterday was a hard day emotionally and physically for me, but I’m amazed at how the Lord has truly provided peace. Once born, the doctor recommended that we do not look at our son, simply because of his condition. He was trying to be sensitive and thought it might engrain a bad memory. Yet in that moment, I really had the desire to look at our boy. So the amazing doctor that God provided to us, was patient and gentle as he showed me everything about our son. I took several minutes to soak him in. It confirmed everything we could see on ultrasound. I had the chance to look into his little face and take in his little fingers and toes. Those few minutes truly helped me say goodbye to him.
It brought the song “Praise you in this Storm” back to my memory. I will never forget hearing this song for the first time in Florida while Ella was in the NICU, only 10 days after she was born. At that time, we were not sure of the Lord’s plan for Ella. It was morning and there was a thunderstorm outside. My alarm clock went off with this song playing. It was a new song for my ears and one that will always hold special meaning for me. It just seems appropriate to share it again, as the words ring true for this season of life.
This song is by by Casting Crowns. You can listen to it below.
[mp3]music/praiseyou.mp3[/mp3]
I Will Praise You In This Storm
I was sure by now God,
That You would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say, “amen”
and it’s still raining.
As the thunder rolls
I barely hear You whisper
through the rain,
“I’m with you”
and as Your mercy falls
I raise my hands
And praise the God who gives and takes away.
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again.
My strength is almost gone.
How can I carry on
if I can’t find You?
And as the thunder rolls
I barely hear You whisper
through the rain
“I’m with you”.
And as Your mercy falls
I raise my hands
and praise the God who gives and takes away.
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
|
|
|
|
| |
|
|
|
|
|
|
|
It was a warm and beautiful day as we headed to the Children’s Hospital. Our first stop was radiology. When we checked-in for the chest xray, the order was expired in the system. So, we had to call cardiology and get them to place another order in the system. Once they took us back, Ella could tell that she was not going to like this activity. I taught the xray techs as much as I could about how to handle Ella. For example, increase oxygen, if she holds her breath to blow on her face, do the xray as quickly as you can, etc. (I could not be in the room since I’m pregnant). It was torture to just hear her melting down on the other side of the door, knowing that she was with 2 strangers that do not know how to handle her. Fortunately, they were pretty quick but by the time I got to her, she was sweaty, retching and having a tough time breathing. After about 10 minutes of consoling, she calmed down.
We went up to cardiology for our appointment at 11am. At 11:20am, they called us back and wanted to do some of the basic things – blood pressure, weight, height, saturation, etc. The good news is that her blood pressure was great – 111 over 67. This means that her body has adjusted fine without the Captopril. When the nurse went to get her height, Ella lost it again. Then, she wanted me to strip her for a weight. I convinced her to use the weight from our scale this morning. Due to Ella’s behavior, she conceded. Then, we went back to a room. We waited in there an additional 40 minutes! Ella was worn out from the drama, so she fell asleep on me.
The knock at the door was to take her across the hall to get an echocardiogram. I knew she was not going to tolerate this procedure either and now, I had to wake her up from beauty sleep! As soon as I laid her on the table, she lost it! The tech seemed new and somewhat green, which is not the best for a child like Ella since she is tough. The tech was not able to get the images of her SVC to see the flow. After 10 minutes (keep in mind that Ella is screaming, retching on & off, and sweating profusely), the tech stated that she was going to go let the doctor know that she could not get the images and see what he wanted to do.
Dr. Fagan came into the room. It was good to see him, although hard to have a great conversation with him because Ella was still screaming her loudest. The tech tried again to get the images while Dr. Fagan watched. After about 5 minutes, he finally told the tech to stop trying and admitted that these images are hard to get anyway.
Over Ella’s crying, we discussed her progress and how she has been doing clinically. He admitted that he was skeptical about the type of impact this would have for Ella, but now he clearly sees that it has made a big difference. I thanked him over and over. He does want her to stay on a regiment of aspirin daily until further notice. Since the echocardiogram really did not give him the info he wanted, he just told us to keep watching her clinically. If we notice any changes, come back and see him. Otherwise, the body is known to clot the stents so we will want to try and check them in a year from now (you can have very subtle changes over a long period of time that may be hard for us to notice). He emphasized that because of the common occurrence of clotting in stents combined with Ella’s history, it is likely that we will need to have her go back to the heart cath lab sometime in the future.
Considering all the drama from Ella, it is a bummer that we did not get more conclusive information. For now, we are just going to keep a close eye on her clinically. Since we got a satisfactory report from Dr. Fagan, this means that in the upcoming weeks, we may be able to try and wean her diuretic. That decision will come from Dr. Abman, her pulmonologist. Reducing medicines for Ella is a good thing and something we definitely want to keep pursuing as the weeks and months pass.
Right now, we do not have another doctor appointment scheduled until the end of May or first week of June. Excited for the break!
After the hospital, Ella had a good PT session. Kelly also tried feeding her, but she only took a few bites and then melted down. Aside from her nap on my lap at the hospital this morning, she has not had any other beauty sleep. Maybe this means that she will go to sleep before 11pm tonight. We can only hope!
I think about the baby all the time. I guess it’s hard not to when you are carrying it with you every moment of every day. But this verse provided comfort to me today and just brought the clear reminder that He can sustain us through whatever we experience in this lifetime.
Isaiah 43:2 (NLT)
When you go through deep waters,
I will be with you.
When you go through rivers of difficulty,
you will not drown.
When you walk through the fire of oppression,
you will not be burned up;
the flames will not consume you.
|
|
|
|
| |
|
|
|
|
|
|
|
Ella was in an especially great mood today. It’s so much fun to be with her on these types of days. She slept really well last night, even though she did not retire until 11pm…that little night owl!
You can still hear her struggling with her snotty nose the slightest bit, but it does seem like it is slowly fading. When she is in this great of a mood, it sure seems like she must be feeling better physically.
It was a beautiful, sunny 75 degrees today. Such a nice change of pace from the recent blizzards! I went and met the director for String of Pearls for lunch. It was so nice to get out and have companionship time with someone who really understands what is going on right now. It is just nice to know that whatever happens in the coming weeks, we have support and do not have to go through it alone. She learned of 4 other families this week in a similar circumstance (2 in Colorado and 2 in another state). It just makes you realize that this scenario is likely a lot more common than we all think. One thing is for sure, she has a gift of sympathy and a talent to run a non-profit organization that is doing a tremendous job at helping families navigate through the tough news.
We’re looking forward to the warm weather tomorrow as we venture out to the Children’s Hospital and have Ella’s follow-up tests. Praying for good news…
Matthew 6:33 (NLT)
Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
|
|
|
|
| |
|
|
|
|
|
|
|
Ella slept well last night, but has been waking up early and needs consoling to fall back asleep. Today, it was from 6:30am – 7:30am. Her snotty nose does seem to be subsiding. I hope it is really on its way out. I was tricked last week into thinking the same thing and it came back stronger than ever!
She weighed in at 10.82 kilos this morning (23.8 lbs). Once again, still seeing the gradual increase of weight gain. That makes us happy!
Today was a day full of therapy appointments. First, we tried feeding. That did not last long. She was tolerant of sitting in her chair (sometimes just doing that sets her off), but once the feeding part of therapy started, she melted down. So, it was a fast session as you may be able to tell that she was losing her color!
Then, she had physical therapy this afternoon. Still working on the upper body strength in the torso and shoulders. Also, we’re trying to get her to bear weight on her arms when she is sitting up and laying on her tummy/side.
I’m looking forward to meeting with the director of String of Pearls tomorrow. It will be the first time for me to meet someone in person that has experienced a similar scenario concerning our unborn child. I’m interested to hear about their program and hope that we can become a source of support for other families in the future.
Also, looking forward to Ella’s SVC follow-up procedures on Thursday. I’m just so curious to see how her body is handling everything. From what we can tell, all her clinical signs look great. It seems like her body has been very happy since that procedure. Before it happened, we knew if the procedure was successful, it would be a good thing for her. But, I don’t think any of us, including her doctors, could have ever predicted how much of a great thing that this would be for her little, growing body.
We’re just enamored with her every day and blown away at how far she has come. Below is a photo of the Bun on this day one year ago.
A Baby is a Miracle
This little tiny baby
Was sent from God above
To fill our hearts with happiness
And touch our lives with love
He must have known
We’d give our all
And always do our best
To give our precious baby love
And be grateful and so blessed
~Anonymous
|
|
|
|
| |
|
|
|
|
|
|
|
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
Everyone’s life is touched by trials and tribulations
That sometime leads to a life of quite desperation
A kind of doom and gloom permeates the soul
So much so that you put our life on hold
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.
The bible speaks of great calamities, some due to natural causes and some caused by men. We often feel bewildered during such trials, but scripture tells us where to turn: God’s followers should be still and remember that He’s the sovereign Lord of the universe. In our world of cell phones and deadlines, it’s hard to stop for even a moment. But the key to dealing with difficulty lies in trusting the One in control of all things.
Instead of trying to manage the situation ourselves or pointing a finger in blame, we should actively wait, watching for God to move and trusting that He will act on our behalf (Isa. 64:4). This involves taking time to be alone with our Father—crying out to Him, meditating on His truth, and listening.
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.
|
|
|
|
|
|
