Archive for the ‘Eliana’ Category

Burdened

During this whole process with Eli, we’ve been exposed to other families going through similar situations.  Most of which unfortunately are not doing as well as Eli’s doing.  One family in particular has really been close to our heart.  While we went through the three weeks in the PICU, blogging about our experience, we began reading another family’s blog.  Our heart is breaking for this family as their son has been fighting for his life – along with mom and dad, sibblings, family, doctors and nurses.  He’s only 6 months old and may not make it another month.

About 2 months ago, we visited the PICU to wish the doctors, nurses and families who were still there a Merry Christmas.  While there, we just decided to see if Will and his mom or dad were there.  What a strong mom and dad.  We were able to meet and talk with Tammy and hear first hand what a strong parent looks like.  These guys are the real deal.  They love their children and are making tough decisions to do anything to save Will’s life.  Again, I can’t tell you how burdened we’ve been for this family.  Leah especially has been affected…she prays for them everyday. Today’s post on their blog made us especially emotional today.  The thought of losing any of my children breaks my heart…we’re broken for them.  We’ve not been down that road, but one like it.

So, pray for them.  They need hope, joy, peace, strength, encouragement and love.  Let them know you’re praying for them.  A blessing’s not a blessing unless it’s spoken.

You can read their story here:  BraveWill.com

03

02 2009

Eli’s Take

What Eliana had to say about her heart:

Untitled from Chad Clem on Vimeo.

I promise we’re not torturing her…those sounds you hear in the background are her crib…it vibrates and plays songs.  Although…if I had to listen to that lady sing, it probably would be torture.

31

01 2009

Good news, Bad news

In my post from this morning I said that there were three outcomes to the echo at the cardiologist.  The good news is that none of them fit.  The bad news is I guess there’s a fourth outcome…her aortic valve hasn’t grown, but it hasn’t put Eliana in a position that requires attention right now.  The good news is that we go back in 6 weeks for the same test.  The bad news is the doctor said that before she’s one – taking her history into consideration – he’ll need to intervene with an angioplasty to widen the aortic valve.  The good news is that it’s an outpatient procedure and it usually works fine.  The bad news is with the condition that her aortic valve is in, there’s a risk that won’t work and may cause more damage than good…which means valve replacement…which mean multiple surgeries over the course of her life.

We’re confident in Dr. Spooner’s diagnosis that she’s fine right now…even though the numbers are high, we have six more weeks to truly define the next steps.  He even gave us permission to stop being so paranoid about Eliana.  The bad news is we still need special care for her, but the good news is – in the doctor’s words – we don’t have a post operative baby…we have a 3 month old thriving baby.

Continue to pray with us for complete healing for Eliana.  The bad news is this isn’t over, but the good news is that our God can do anything.

Mark 10:27 says, “Jesus looked at them intently and said, “Humanly speaking, it is impossible. But not with God. Everything is possible with God.”

30

01 2009

Pray

Please pray with us today as we visit the pediatric cardiologist.  Today’s test results will determine whether she may need more procedures or not…ultimately surgery.  So, to be specific, the issue is that her aortic valve has not been growing with the rest of her heart.  Our prayer is that God has woke it up and it’s growing now.  There’s really only three outcomes:  1) it’s grown and the numbers are decreasing (hint: that’s the one we want) or 2) the numbers haven’t changed…nothing better or worse, or 3) the pressure gradient has increased and we’re planning a trip to the cath lab.

Also, we think Eli may be getting a cold.  Emi and Drew had a slight cold last week and we’ve really done our best to keep them seperated from Eli, but she’s shown signs of being sick last night and this morning.  The problem with a cold is that although that’s nothing to worry about normally, with a cardiac baby we may be on our way back to the PICU. So please pray with us for that healing as well.

Thank you for your prayers.  We’ll keep you posted.

30

01 2009

Eli’s Favorite Song

The last 3 months has been pretty tough for us as a family. Eli was a pretty fussy baby in the beginning – guess she had to catch up from the month she was in the hospital – but now that she’s gained some weight (a whopping 8 1/2 pounds) she’s starting to have more awake time and is really engaging with us. The past month has been much better. Eli’s really starting to grow up and develop a personality. Here’s mom and Eli singing her favorite song:


Eli singing from Chad Clem on Vimeo.

We’re so blessed.  We find out next Friday if her aortic valve is growing properly. Pray with us that Eli won’t have to go through any further treatments…especially surgery.

24

01 2009

Eliana Update

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I can’t believe Eliana will be three months old on Jan 19th.  We take our trips to the pediatrician on a bi-weekly basis and she now weighs a whopping 8lbs 14oz with casts on both legs. She’s pretty picky and only wants new casts on her legs, so we get new ones every two weeks too.  She’s a popular little girl in a lot of doctors offices! In a weird way it’s actually kind of nice befriending all of the doctors, our appointments are easy to make around our schedule (most of the time) and we can call them whenever we need to.

Back before Christmas we brought Eli to see her cardiologist…Dr. Spooner. It’s been so busy – Christmas, stomach bugs, snow and ice storms, you get the idea – this is the first time we’ve had a chance to share with everyone. The repairs (from surgery) on her heart look great and everything is doing what it’s supposed to do….praise God!  However, Spooner told us that her aortic valve (bicuspid valve) was not growing along with the rest of her heart.  The pressure gradient had doubled in one month….not good. 

Needless to say, we’ll be going back for a check-up at the end of January.  Please pray with us that her valve will grow so that she will not need to have any procedures done.  Unfortunately, there are no easy fixes for a valve. 

Eliana is a delight to our family.  She loves to watch her big sis and bro play, is a huge fan of patty cake, and loves to watch Micheal Bolton concerts in high definition…seriously, it’s a mystery, but if it means she stops crying we do it. She doing pretty good in the sleeping department too…mommy’s getting to sleep close to six hours a night!  And a huge step up…we were finally able to give her a bath in the big tub.  With the casts on, we can only sponge bath her, but the night before we go the orthopedic doc, we can take the fiberglass casts off and give her a real tubby.

Please pray for her heart valve.  We trust God to continue to take care of even the smallest details of her life!

10

01 2009

Gratitude

It’s been awhile since I’ve posted a blog…newborns are a lot of work. However, it would be amiss if I didn’t post about this. Tomorrow, Leah and I have the opportunity to honor the people who’ve made such a huge difference in our lives…the NICU & PICU nurses and doctors. We go tomorrow for a cardiologist appointment and then on to Albany Medical Center to share the most prevalent feeling we have these days…gratitude. No words can describe how we feel toward the men and women that have taken care of our daughter Eliana.

We’ve spent the last couple of days going through all of the pictures we’d taken during our stay at the AMC PICU. The memories flood in…one minute we’re laughing the next we’re crying. “Did that actually happen? Were we really there?”, we keep asking ourselves. We just can’t believe – looking at Eliana today – that the life we were leading a month ago was completely different.

Yet, to the nurses and doctors, it doesn’t change. They don’t get to have off days. I honestly don’t know how they do it…day in, day out…12 hours or more shifts…so many patients to care for…so many parents to train…the balance between life and death. I truly believe that it’s not just a job, but a calling. Our experience with them was so much more than expected. We connected with them, but most importantly, they connected with us.

So today, Leah and I honor the men and women of the AMC NICU and PICU (some of which we were able to catch on camera). It was an honor to meet you, share with you, laugh and cry with you, and trust you with our daughter Eliana. God has blessed us with your selfless care and protection. When you’re having a bad day…thank you. When you feel discouraged…thank you. When you feel like throwing in the towel…thank you. When you feel like no one sees or notices how well you do your job…thank you. When you feel like it’s just a job…not your purpose…thank you. When no one thanks you for your endless hours of care…thank you. When mom and dad go home and rest because you made us…thank you. When you have to say goodbye to a patient who’s fought and lost or in our case won…thank you.

Eliana’s name means, “My God has Answered.” Our God has answered and used you to bless our family by caring for our precious little girl. Thank you for being part of the miracle. Thank you from the bottom of our hearts. You truly are an inspiration and a blessing to our family.

18

12 2008

Hard to Believe

It’s hard to believe that this was the beginning.
A little over ten months ago:
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It was hard to believe the technician when she told us we needed to get our baby’s heart checked. Leah was only 20 weeks pregnant. It was hard to believe the pediatric cardiologist when he told us that our daughter would have to have open heart surgery at 2 days old. It was hard to believe the surgeon when he told us that although the first surgery was extremely successful, he’d have to do surgery again keeping us in the PICU for a total of 20 days. It’s hard to believe that I’m standing on this side of the last 10 months. It’s hard to believe how tough it’s been. It’s hard to believe that I had the opportunity to share how we’ve survived this and how good God’s been this past weekend…Thanksgiving weekend at Northway.

It’s hard to believe how much God has done. It’s hard to believe how God has changed us so much. It’s hard to believe how God is so good, so real, so sufficient, so in control…it’s hard to believe God loves us so much. It’s so hard to believe how well Eliana’s doing. You’d never even know she had to go through all of this.

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I still don’t have all of the answers to the questions that keep coming. God’s been rocking my world with how awesome He is and on what He wants me to learn from all of this. But why is it so hard to believe that God would be so good, so real, so sufficient? After all that He’s done, why is believing so hard to believe? It’s hard to believe that the creator of the universe would be so intricately involved with our lives. But He is. And He wants to be. Why is that so hard to believe?

Psalm 8:3-4 says, “When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, the son of man that you care for him?”

02

12 2008

“Cast” Your Cares

The delivery team told us that Eli had clubbed feet the minute she was born. We didn’t care at all…we just wanted to know how her heart was. But, the one thing that’s been on our minds in preparation for today’s appointment with the orthopedic doctor was, “Does Eli need surgery to correct her clubbed feet?” This one kind of crept up on us. We were so focused on her heart and diaphragm surgery that we never even thought about her feet. It just got put on the back burner. I can’t tell you how much stress it’s caused us while waiting for this appointment…we just never thought of it during our stay in the hospital. If she needed surgery – like Leah had for her clubbed feet – we’d have to go through the whole anesthesia process again and rearrange everything to be at Albany Med…possibly back in the PICU if the doctor would have said that she needed surgery. We went to the doc today full of anticipation.

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Believe it or not, this picture makes us so happy. Yep, those are plaster casts. I guess if Eliana only had clubbed feet this would kind of freak us out, but quite frankly this is nothing compared to what she just went through. The reason this picture makes us so happy is not because she’s got to go through yet another challenge – of course we don’t want her to go through this – but not only does she not even know that she’s got them on her feet, but having casts means no surgery. Just a couple of rounds (months) of casts and maybe braces as she grows.

1 Peter 5:7 – “Cast all your anxiety on him because he cares for you.”

Romans 8:26-28 – “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.”

Those verses mean so much to me now. I’ve read them before…skipped over them. These past weeks, I’ve prayed…tried to pray…and been at a loss for prayer. But God’s taken care of everything. Even when I didn’t have a clue what the next step was. God’s taken care of every detail through this. All credit and glory goes to Him! Thank you Lord! You continue to answer our prayers…even if we don’t know what to pray for! Our God has answered!

17

11 2008

Thank you

Now that the anxiety of Eli going through surgery and recovery is over, there are new emotions that I am feeling. To cope with my feelings I’ve stayed busy with taking care of my family, but deep down I know I need to express how I feel, but that can be hard work. Getting it out means having to think about things again, relive things. Chad and I talked some things out the other day and he encouraged me to write about all that is going on inside my heart…to get it out. Revisiting those memories have caused me to feel so blessed and full of gratitude for all of the help that we’ve received over the past month. One of those pillars of support has been family.

Bay and Darlene (Chad’s dad and step-mom) came and stayed for two weeks and took care of our children and our home. Darlene had hot meals waiting on the stove each night when we came home from the hospital. The wonderful aroma of pine-sol greeted us everyday and my laundry and ironing pile completely finished! Bay is such a caring man and southern gentleman. He’s taken care of dead batteries in cars, driven everybody everywhere, and even drove his car here to NY and left it so that we would have enough vehicles to get us back and forth to the hospital. Their generosity has been such a blessing to us…Thank you.

Dave and Diane (Chad’s step-dad and mom) decided to rent an apartment near our home so that Diane could come and stay for two months. Dave stayed in Alabama to work and care for their home so that Diane can be here. Dave’s unselfishness to share Diane with us (time and treasure) especially for such a long time has meant so much to us. Since Eliana was born, Diane hasn’t been able to spend much time with her newest grand-baby because she’s been taking care of my sick children…Emi and Drew. Diane has helped around the house, kept the kids here, there and everywhere and filled in wherever we needed help. I think we’ve worn Diane out, but I haven’t heard her complain one time. I so appreciate how much she loves and cares for our family…Thank you.

My parents (Duke and JoEllen) have taken time off of work to be at the hospital with us and bring us delicious meals. Our family picnics – thanks to my mom – have taken place in the Choices Cafe of the hospital. They’ve been there for us whenever and wherever they could. It’s been so nice spending time with my family. My mom and I have grown so close through this. We’ve cried more tears and prayed more prayers together. She told me that she hurt because of the pain Eliana had to go through but that she hurt even more to watch her baby (me) go through so much heartbreak. Before this, we never really made (or had) time to talk, but I feel like we’ve both allowed ourselves to be so vulnerable and genuine with each other…Thank you.

Thank goodness for family members who can make you laugh even in tense times. Aunt Denise flew in on the day I was supposed to be induced and she stayed until Eliana was out of surgery. Denise, thank you for keeping things lighthearted even in the darkest times. Thanks for helping Diane with Emi and Drew too. Next time make sure you have popsicles with sticks – Emily had a break down because they didn’t have sticks in them. Aunt Denise made us all laugh with that story…Thank you.

My sister and brother-in-law (Rachel and Scott) helped out so much by taking the kids overnight. Rachel, thank you for caring for your niece and nephew, for running my countless errands, and being with me the night Eli came out of surgery. Scott, thanks for buying desert the night of Eli’s surgery and for laughing at Chad as he cried over chocolate ice cream – he lied about getting it for me, it was really for him…Thank you.

Writing this post has me all choked up. I simply want to say, “thank you” to our families. There are no words to really capture how I’m feeling. There’s no real way to repay all you have done. Thank you.

15

11 2008