Posted (Tina) in All Posts on April-30-2009

Ella’s day started off well, but she did seem fussy on and off. I was especially surprised when it came time for physical therapy. Normally, she has such a great time. Yet, half of the session was her melting down. I guess she was just not in the mood to do any work. Fortunately, we were able to distract her enough to get some work accomplished, but it was a challenge!

Unfortunately, the main event of the day was not related specifically to Ella. As if the last few weeks were not already tough enough, there was more going on in our lives than we could publicly share on the blog.

We were having some problems with our live-in nanny that takes care of Ella. We’ve had ongoing problems and challenges through the past 7 months and it has been especially challenging since it is a live-in situation.

Things started to get strange and led us to be suspicious right around the same time that we got the news that the baby had a lethal birth defect. We were asking the Lord for guidance and direction. Obviously, we felt led to invite this person into our home last fall, giving her the huge job of taking care of our miracle baby girl. We thought that we shared a common unity in Christ. Keep in mind that this is someone who made a point on the first day of the job to let us know that she was a sweet, innocent Christ-follower that had never even kissed a boy. Apparently, we didn’t know our nanny at all and it took us this long to figure it out.

I think just describing the day’s events this past Tuesday will give you a sense of what had been going on. She was aware that we had to go to the hospital to deliver our son, yet she was out all night and returned at 4:15am to go to sleep. The prior evening, she offered to start early at 7am, but I ended up having to wake her since she was so sleep deprived. When we were at the hospital and she was being paid to care for Ella, she spent several hours on the internet, searching sites and having conversations with individuals that were highly inappropriate, explicit and immoral in nature. Upon arrival at home after a long day at the hospital, she expressed that her Dad was going into surgery the next morning. Considering all that was going on, we let her take the day off. During Wednesday, we also decided to look in her room to see if there was anything else that was concerning. That just led to more disappointment – we found things in her room that did not belong to her that she conveniently decided to place in her room to use, without our knowledge.

When confronted this morning with all the evidence, she did not deny any of it. She took it in and cried while we explained, in the most loving way possible, that we needed to end our relationship. Once she began to pack her belongings, she became indifferent and ended up just leaving and saying, “bye” and quickly walked away. She explained that she thought she could portray herself as someone she would like to be and if placed in a good home, she could change. In other words, she admitted that it has all been a lie.

It hurts so much to be deceived in this way, under the banner of Christianity. She portrayed herself as someone that she clearly was not. We cannot believe the things that were revealed over the last few weeks, but most especially, even from this past Tuesday while we were going through something so heavy.

Besides all of the drama, there must be a reason this young girl of 19 years of age was brought into our home for these past months. I’m not sure if we’ll ever understand the Lord’s plans, but there must be some purpose for her being here. We’re just hoping that she learns from this chapter of life and that she draws near to God, working on repairing her clearly damaged heart. Please offer up a prayer for her.

As far as our plans, we will continue to seek Him for guidance and direction on next steps. Until then, Mom is enjoying some good quality time with her little Bun. She is such a sweet child and we are so thankful to have her in our lives.

Posted (Tina) in All Posts on April-29-2009

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.


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

Posted (jooosh) in All Posts on April-28-2009

Above are some pictures of our sweet Ella, however, today’s focus was on Ella’s baby brother.

This morning, when we first walked into labor and delivery, I wasn’t expecting the flood of emotions. We were admitted around 8am and induction started around 10:30am. Tina began to have contractions and cramping around 1pm. Our son was born this afternoon at 2:14pm.

Thank you for all your prayers. We are home tonight and Tina’s recovering well.

During the labor process the Lord inspired me to write the words below.

My Son
Though I won’t get to look into your eyes in this lifetime, I know you’ve been blessed by looking into His.

You are my son, my son for eternity.
I cherish the thought of us meeting some day.

I do wonder, if God’s plans were different, whose eyes you would have, whose smile.

Would you have your mother’s lips and your dad’s nose?

As you grew, would you have a passion for the arts, or would it be sports?

How uniquely our Lord has made you, a blend of your mother and me.

Would we play catch, or go fishing? Go for a bike ride, or fly a kite?

What if….

But God knows. Our Heavenly Father ordained it. He knew that you would only be with us a very short time…at least in this lifetime.

There’s comfort in knowing where you are now. Surrounded by those who love you, and care for you.

Thank you Jesus for this life. The life you created, and blessed us with.

Our son’s footprints (actual size)

Posted (jooosh) in All Posts on April-27-2009

Ella slept solid through the night and had a great day today. So much so, that she even tolerated her OT time and had a good feeding.

The little monkey even did her best trying to chew through her O2 cord, “Who says I need oxygen!”

She’s been all smiles this evening too. So glad to have those beautiful blue eyes to stare into.

Personally, I had a lot better day. Thank you for all the prayers. Considering the extreme mood swing from yesterday to today, I’ll take it as the Lord preparing my heart though. Today really was better, even with the news I’m about to share.

Tina had her follow-up ultrasound today. We were able to see a lot more of the baby. Arms, hands, legs, feet, head….but…

…there was no longer a heartbeat. We were not totally surprised, but it was quite a surreal moment. Our baby was gone.

Before wrapping up the ultrasound, we asked the technician if she could tell the gender of the baby. I think she knew already, but wasn’t sure if we wanted to know. She was able to point out on the ultrasound that it was a boy. Ella has a little brother in heaven.

After talking over the options with the doctor we decided to minimize the risk to Tina and have labor induced tomorrow morning. This is what the doctor recommended as well. Hopefully the process will go smoothly, and with minimal physical pain.

We praise our Heavenly Father for this precious life and are thankful for his merciful touch. I know right now that my earthly father, who is with our Lord, is enjoying some time with his grandson right now.

Please pray that the delivery will go smoothly tomorrow without incident. Specifically pray for Tina’s health and comfort as well as the state of our emotions throughout the day.

Thank you all so much for your support during this difficult time. Your words of encouragement and support are so upllifting. We also take to heart those that choose to share very few words, as they mean so much as well.

Continuing to hold tightly to God’s promises…and savoring the life of Ella Renae which is a salve to our wounded hearts.

Revelation 21:4 (NLT)
“He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

Posted (jooosh) in All Posts on April-26-2009

The Bun fought going to sleep last night, and finally settled down around 11:30. Even thought she slept through the night (thank God), it still made for a very rough morning. I attempted to wake her at 9am so we could start her routine. Well, she was not going to have it. I tried softly singing to her and rubbing her back, but she didn’t want to get up.

I changed her diaper so I could hold her. After that, she got herself pretty worked up, so much so that I was having a hard time consoling her. Her saturations kept dropping and not coming up. 70…60…50..! What the??!!! It was at that point I realized that her oxygen tube had disconnected from the water trap in the line.

I cranked up the O2 so the Smurf colored Bun would recover a bit quicker. She was still really fussy though…and so snarfy. This cold, or whatever she’s been dealing with over the last couple weeks, is really reeking havoc with her getting O2 through her nose.

As soon as I would try and lay her down to feed her, she would react if there were needles in the bed. She would just cry until I picked her up.

Well, I wasn’t going to be able to feed her this way, so I wrote off the morning routine and brought her down to her bed downstairs. She calmed down enough there for me to feed her, but continued to be fussy afterward.

Shortly before 10am Ella had a major retching episode. She absolutely refuses to drink anything, so all her secretions build up and they tend to be pretty thick. We try to manage them as best we can with some saline in the nose, but she still struggles to swallow.

The scary moment occured when she coughed, gagged, and wretched a bunch of snot and scretions into her mouth, filling it up! It happened so quick I couldn’t get her on her side or turned over so they would come out. She started to breathe them in and gag and cough rapidily. She finally managed to swallow most of it down and catch her breath. I’m pretty sure it was as scary for her as it was for me.

After this event I had bit of a breakdown. I think it was the emotions of everything catching up with me.

The challenges of our special needs child on top of life’s other realities over the last few weeks has me worn down. I do find incredible strength and peace in my relationship with Christ, but my emotional man is pretty raw. Emotional coping for me includes eating, escaping into TV, eating, not focusing on the details, oh…and eating. These mechanisms for escape tend to harbor issues of their own which can also make the situation worse in the long term.

With that said, I’m not denying the truth of the situation. I know how real it is, and it really hits home when I project Ella as the child in Tina’s womb. The bottom line…that’s our kid in there. It’s hard to imagine that it is our child going through this, but it’s a life that God created. He knows all the circumstances surrounding these events, and also how they will play out for eternity.

Our trust in him does not guarantee an easy path for life, but we can hold fast to His promises. The scripture at the top of the blog (Jeremiah 29:11) rings more true now than it ever has.

Enjoy the pictures of Ella. The one below was snapped in between her weekly cannula change. She had a good time this evening playing in her exersaucer. Praising God for all the progress she’s made.

Posted (Tina) in All Posts on April-25-2009

Ella had a good day. She is still fighting the snotty nose. Between yesterday and today, her stools were a bit loose too. Many doctors will tell you that teething is not connected to these symptoms, but they do coincide with a brand new tooth that just broke through on the bottom left hand side. Ella waited a long time before deciding to get any teeth, but now it seems like they are all coming in at once.

And yes, she had a great time showing those teeth while she hung out with Daddy this afternoon. I think the photos speak for themselves!

Psalm 34:17-19
The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.
The LORD is close to the brokenhearted
and saves those who are crushed in spirit.
A righteous man may have many troubles,
but the LORD delivers him from them all.

Posted (Tina) in All Posts on April-24-2009

Celebrating with pictures that Ella is 21 months old today!

Psalm 9 (NLT)
I will praise you, Lord, with all my heart;
I will tell of all the marvelous things you have done.

Posted (Tina) in All Posts on April-23-2009

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.

Posted (Tina) in All Posts on April-22-2009

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.

Posted (Tina) in All Posts on April-21-2009

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