Sunday, March 9, 2014

Another broken heart... (4 months home update)

This month.... wow.

More than once I have found myself pausing and remembering what life looked like for our family of 4 before we entered this crazy life of therapies and appointments almost. every. day.

I am so very grateful that God gave Ryan and I the wisdom to not jump into this right away. I am thankful that we were able to take a couple months to purely cocoon and enjoy the Holidays.

2014 has already been such a crazy and busy year. 

I was sitting in church today and God seemed to ask my heart where it is at right now. After an amazing time of worship and letting my heart be opened to and reminded of the greatness and kindness of my Lord, I was able to answer Him honestly.

God, I feel like we are completely beat down... but not destroyed (2 Cor. 4:9) and yet even in the midst of this pain... You are here. Your peace that surpasses all our understanding... we feel it.... thank You

You see just when we thought we had heard the extent of Ivan's diagnosis'... just when we were finally coming to terms with his hips and how that is going to affect his future... just when we were feeling confident that we knew everything and could now begin the long journey forward with Ivan... we got another... surprise (for lack of a better word).

Ivan had dental surgery this past week. 

It sounds worse than it really was. They just filled all his cavities and did some other minor things that could of been accomplished in a dental office except for it would have been too traumatic for Ivan right now. After Ivan's very short dentist visit a couple months ago we agreed with the dentist when he told us that putting Ivan under anesthesia at the hospital was the best option for him. 

I have been dreading March 5th ever since. I figured Ivan would have a really hard time with being in a hospital for such a long amount of time, but our little man amazed both me and Ryan with how well he handled everything. We had to sit in the pre-op room for over an hour and the whole time Ivan was calm and happy.



With his little cat the hospital gave him
This was taken 15 min before going into the OR. They gave him a medicine that made him really drowsy so he wouldn't get upset when they put the mask on him.
The surgery itself did not take very long at all. Ryan went and got us some lunch and by the time we finished eating, the doctor came out and told us he was finished. We went into a room to talk about how everything went. The doctor told us that he did great and they accomplished everything they needed to, but they did notice something strange when they were monitoring his oxygen saturation's. He explained that when they put the pulse oximeter on his finger his sats were between 95 and 100 which is perfect, but when they put it on his toes they were only measuring in the low 80s. He told us not to be concerned because he obviously isn't showing any signs that he is struggling to breathe and his heart sounds good, but he thought it was something we should get checked out.

We then went to go see Ivan who was just begining to wake up. He was still pretty out of it, but the first thing he asked for was the pictures he was coloring before the meds kicked in. Ryan and I just laughed, seriously this kid is so stinkin smart!!

Soon the anesthesiologist came in and started yelling at the nurses to get another pulse oximeter on his finger and while they were scrambling to do so the anesthesiologist phone rang and he said "this is him, you have to take over." The nurses then finished what he was doing while he described Ivan to whoever he was talking with on the phone. Ryan and I glanced at each other with the, all too familiar, "what the heck is going on" look.

After the anesthesiologist finished his phone call he apologized to the nurses he yelled at and then sat down to talk with us. He told us again what the doctor had already explained regarding Ivan's dramatically different O2 sats, but then he went into a little more detail about what could be causing this issue.

It sounded to me like he was hinting at the possibility of a heart condition, but he wasn't being really clear so I asked him straight up, "Does it seem like it's being caused by a problem with his heart or his lungs?" He then sank back in his chair, sighed, and told us that he doesn't know how to explain it without making it sound somewhat frightening. We told him that we have another child who has a CHD so we just want to know what he thinks it could be. He seemed relieved that we were familier with the terminology and then went on to explain that he was just on the phone with the pediatric cardiologist, who told him that it sounds like Ivan may have Patent Ductus Arteriosis (PDA). He explained to us that there is a blood vessel that's present in a baby's heart when they are in their mothers womb, but after they are born they no longer need it and it closes. It is possible that this vessel is still open in Ivan and that is why blood isn't flowing normally throughout his whole body.

None of what he told us sounded foreign to us in fact all the terminology was all too familiar. After Landon was born he had to be placed on a medicine to keep his ductus arteriosis open until he could have his first surgery to open his pulmonary valve. We asked the anesthesiologist if he was on the phone with Dr. Fernandez. He said he was and seemed happy that we already know him. As God would have it, we were actually scheduled to see Fernandez the next day for Landon's 6 month heart echo. The anesthesiologist called it serendipitous, but we know better.

God's timing is absolutely perfect. The Lord watches over our coming and goings both now and forever more (Psalm 121:8).

The next day I took Landon to his echo and before we were finished I told Fernandez about Ivan and as soon as I said dental surgery he knew exactly who I was talking about. He told me again that from how it sounds Ivan most likely has a PDA, but there is no way of knowing until we can get a good look at his heart on an echo cardiogram.

So before leaving the hospital I stopped and scheduled not only Landon's next echo in 6 months, but also an echo for Ivan next week.

I left the hospital in shock....

In a way this one feels familier.

When it comes to cerebral palsy we're still pretty clueless...

scoliosis.... we're just beginning to learn...

Hip Dysplaysia... we have no idea....

But CHD's .... this we know.

But even though we have an amazing team already in place and even though we know the lingo, and even though we don't have to google or search for groups of parents on facebook going through the same thing... it is still scary.

I keep trying to process this in my heart.

I keep wrestling with God....

Really Lord?? Really? Did we not have enough going on? Just last week we find out about his hips and now this week.... this. Lord, would you really give us another baby with a broken heart?

When I told Ivan's pt about all this she told me that she can't imagine how hard all of this is on Ryan and I emotionally and financially.  I told her that this is our life now and yeah, it's hard, but we just focus on one day at a time.

It's overwhelming yes, but we have a foundation now. We have seen God heal and provide in the past we know He will not forsake us this time.

Today I held Ivan in one arm and lifted the other as high as I could as I sang with all my voice and heart

We believe in the kingdom come
We believe in the risen Son.

You bring our hearts to life

Lord we come with our hands up high
We believe You will satisfy.

You bring our hearts to life
You bring our hearts to life

We are alive

In the past couple weeks I have really struggled with anger. 

I feel like I have the right to be angry for everything my child is going to go through, everything he has already been through, everything he is going to miss out on, everything that has been robbed from him. But the other day God poured a truth into my soul and it's something that I want to cling to everyday as a mother. 

God spoke to my heart and told me that Ivan is going to handle all of the pain of this world the way he sees Ryan and I handling it. If you choose to take hold of bitterness then that is what Ivan is going to know, but if you choose joy, peace, and love in Me then that is what Ivan is going to grow up knowing.

I was reminded of that today as I opened my tear filled eyes in worship to see my son, the child who never sucked his thumb in my womb or fell asleep to the rhythm of my heartbeat, modeling me and lifting both of his little arms up as high as they could go to Jesus.

Seeing that makes all the pain and the fear of any diagnosis imaginable seem so small.

Our God is alive!! and no matter how scary and painful this life may be, as long as we have breathe in our lungs, we have the privilege of praising our creator. 

That is the legacy I want to leave for my children.... not a legacy of fear, bitterness, or anger, but a legacy of love.






 Now for some pictures from this past month!!

How we spend most of our days

Helping mama make bars

Playing with the alphabet cookie cutters grandma Ray sent them for Valentines day.

Eating the cookies with their names on them that great grandma sent.


opening the valentines gift from grandma Max. They were SO excited about the balloons!!
Ivan crawled around with his balloon for days later.



Finally a nice enough day to let them play outside. They were SO thrilled!!
The day he got his first glasses
They make his eyelashes look even longer, something I didn't think was possible :)

Crawling through the tunnel

I love this goofy kid so much!!

First walk to the park in 2014
4 month home photo shoot

He lost a tooth last month!!

He may be little but this kid is STRONG. With the help of his pt he's learning to pull himself into his chair.

Putting on his favorite shirt that he got from grandma for Valentines day.


He's so proud of himself
Blowing a kiss for the camera

Those eyelashes... seriously :)

Singing with the radio

Our Ivan Abraham home 4 months!!


We wouldn't trade this child for anything!!

Please pray for Ivan's heart echo on the 20th of this month. If he does have a PDA it sounds like it is a pretty minor fix, he would most likely just need a heart cath, but because it hasn't been corrected for such a long time there is a chance that it has affected the heart and maybe even caused fluid to build up in his lungs. 

We wont know anything until after the echo. Obviously we're praying that everything will look fine during his echo. We know that God can heal and we're praying for and expecting miracles for our baby.

Thank you for following his journey and praying God's will for our amazing son. No trial we face in this life can outweigh the joy he has brought into our family. 

Just seeing that smile everyday reminds me that I am blessed beyond earthly measure to have the privilege of serving and loving this beautiful creation of God. 

Mama loves you sweet boy!!


2 comments:

  1. Praying. Love the pictures!! They make me cry happy tears.

    ReplyDelete