Archive for the ‘Eliana’ Category

A Typical Night at the Clem’s

A quick update – Eliana’s doctor’s appointment with her cardiologist went great.  We don’t have to go back for 4 months.  The results were truly an answer to prayer.  As most of you know, the pressures in her heart were too high and about a month ago, she underwent a valvuloplasty.  The procedure went well and the outcome is that the pressures were decreased about 50%.  Our God has answered.  Thanks so much for all of your prayers.  We truly appreciate them!

On a side note…three kids makes for very interesting experiences.  Eliana loves to dance.  Andrew’s working on dexterity exercises and Emily is full of questions.  Oh…the innocence of children.

Eliana Dancing from Chad Clem on Vimeo.

Andrew’s Exercise from Chad Clem on Vimeo.

Emily’s Question #1 from Chad Clem on Vimeo.

Emily’s Question #2 from Chad Clem on Vimeo.

Emily’s Question #3 from Chad Clem on Vimeo.

23

03 2010

One Word

As you probably already read in the last post, I was able to go back with Eliana and make sure that she was knew daddy was with her right before the procedure started.  The doctors and nurses told us that it would take about 2 to 3 hours.

When the second hour passed and hour three was quickly approaching, we all started getting concerned.  Why hadn’t someone come out and told us that they were going to take longer? Is this normal?

Eli’s doc finally strolled around the corner and Leah and I were front and center waiting for his results.  The first words out of his mouth were, “the aortic valve did not act like I would have expected.”  Immediately, Leah and I made eye conctact, thinking the worst.  He then went on to say, “normally I look for the aortic valve to respond a specific way, but it didn’t.”

Doubts, questions and worry ran through our mind, “Was Eli ok?  Where’s my daughter?  Was the doctor able to fix her valve?”  He told us before that this procedure could have many different outcomes, one of them being leakage.  Eli’s valve is already at a disadvantage, so to take away its ability to seal properly would lead us to a valve replacement much quicker than we wanted.  What did he mean?  Were our fears becoming a reality?

I started asking questions as to why the valve didn’t react normally and what the ramifications were.  We were very relieved to hear him say that the pressures in the valve were decreased by half with no leakage.  Are you serious?  You just told us that it didn’t go the way you thought it would.

As we listened, waiting for the doctors conclusion, he said a word that I can still hear as clear as day.  In his Netherlands accent, he said, “it’s actually quite miraculous…it’s really too good to be true.”  Miraculous?  Did he just say miraculous.  We couldn’t believe our ears.  Leah and I looked at each other…we knew it!  God answered our prayer.  I quickly looked the doctor right in the eye and said, “this is what we’ve been praying for…Eliana’s name means, ‘My God has answered.’”  He just said, “keep praying then” and walked away.  We were so excited! We couldn’t wait to see her.

We walked in to her recovery room and she was just laying there, so peaceful, slowly waking up.  What a beautiful gift that God has given us.  We just prayed, saying thank you. Then came the long wait…6 hours of no events or alarms and we could go home.

Eli did great.  She never cried out.  She never got cranky.  She never got upset.  All of which we thought would be the case.  But she didn’t, she just sat in mom’s and dad’s arms the entire 6 hours.

We finally got her in the van around 8:20pm – almost 12 hours later – and she was asleep before we even left the parking garage.

We go back in a month to see the results of the procedure.  We’re continuing to pray that the results after the procedure stay that way…to be specific for those of you who are praying with us…no leakage and a mean pressure gradient of 24.

Thank you for praying and for continuing to pray…I still can’t get over it…it’s miraculous!  Our God has answered!

27

02 2010

Eliana Update

Blogging has of course taken back seat to three kids, work and life in general, but here we find ourselves again…the seventh floor of Albany Med has seen the Clem family way too much.

Eliana’s was so good this morning as we waited for her turn with the pediatric cardiologist.  No food, no drink, just mom and dad and great family to help keep her busy.  Trust me…she’s been busy.

As the nurses came in to start the first steps of getting her ready, she kept a close eye  on all of them.  Too many experiences with nurses…she knows what’s going on…a veteran.

Unfortunately, mom & dad have become veterans too.  We don’t like it, but oddly enough, going through this 6 times in the last year and a half have helped calm our nerves a bit.  Emily with her hernia surgery, then Eli with her first two, then Andrew’s two eye surgeries, then Leah with hers…now Eli’s turn again.  We also just found out that Drew has to have another procedure for his eyes.  Will we ever be done with the hospitals?

I just took Eliana back to the nurses and doctors to perform her valvuloplasty and they let me go back with her and help put the gas mask on to have her sedated.  I don’t care how many times I’ve done this, it is never easy seeing your child crying in fear, wondering who all those people are, and wondering why daddy isn’t helping her.

I did my best to keep eye contact with her and talking to her so that she could hear my voice.  She was crying hard (the best for deep breaths of the gas), looking at the docs…I fought to get her eyes on me.  I know she saw her daddy hovering over her, praying and saying her name as she fell asleep.  If there’s a comfort to any of this, it’s that.  She knew I was there.

So here we sit, yet again.  Fresh Starbucks coffee, great family, and a lot of prayer…waiting.

23

02 2010

Eliana Update

So yesterday we went to the long awaited cardiac appointment for Eli.  We’ve been anticipating this visit for months now.  Why?  Because although the repairs to her heart during surgery have held like glue, her aortic valve is just too small.  Although the docs have explained this in tons of medical terms, the way I understand it is that the valve hasn’t grown with the rest of the heart and it’s like a fire hydrant through a straw.  Ok, not that much pressure but you get the picture.

They use a measurement termed, “pressure gradient.”  Apparently the normal  number for you and me is around 4.  As Eli’s grown, the first couple of months of her life, the numbers doubled each visit until we reached about 57.  The cardiologist said that Eli can live a normal life with those numbers, especially since the other side of her heart has strengthened in size to accommodate the pressure. However, when the numbers reach 70 or so, intervention would happen.  And the cardiologist has been saying since day 1 that something will have to happen before her first birthday.  We’ve been praying specifically for just the opposite.  That God would not let the numbers go up.  About 6 months ago, the number went to 58.  And yesterday the valve showed a pressure gradient of 60…Praise God!

We know that God knows what’s best for her and we’re praying like crazy that no intervention will ever be needed for Eli.  On the other hand, although we don’t want to admit it, intervention may be needed as she gets older.  She’s only going to keep growing – although she’s not showing us that right now…14 pounds at 1 year old – and the valve won’t just start growing.

So, we’ll keep everyone posted as things develop, but for today and until our next visit – 6 months – we’re going to celebrate what God has done.  He’s healing her.  He’s given us the most energetic joy magnet ever.  Eli’s such a blessing to us and we are still in awe of her.  Eliana – My God has Answered.

24

10 2009

Eliana’s Birthday

Can’t believe it, but Eli’s one tomorrow.  It’s hard to believe that just one year ago, we were going thru so much with her.  We’re truly blessed to have her with us so full of energy and joy.

We showed this video at her birthday celebration this past Saturday.

Untitled from Chad Clem on Vimeo.

18

10 2009

Our God has Answered…Again!

PhotobucketIts been a year since I found out that the baby that was growing inside of me had life threatening heart complications and most likely had them because of DiGeorge Syndrome.  I’ve had so many doctor appointments that I’ve lost count.  It’s hard to believe, but Eliana was born almost 9 months ago and she had to face my worst fears on day two of her life.  She’s still had obstacles to face, but nothing compares to then.  Through all that pain, I’ve witnessed a miracle.

Many of you remember Eliana getting an initial test for DiGeorge while in the hospital and learning then that the tests came back negative.  Great news! In June, however, we met with a geneticist to discuss the possibility that she may actually have a variant form of DiGeorge.  He told me that nearly all children born with her type of heart defects have DiGeorge Syndrome.  So after a long 6 weeks of waiting and reliving fears, I can’t describe the anticipation and anxiousness that flooded over me when I saw Albany Medical Center on the caller ID yesterday.  The results are in…Eli’s DiGeorge Free!

I can’t describe how happy I am.  Eliana continues to defy statistics.  You would think that I’d gotten over the healing that God has done in her precious body.  But the truth is I haven’t.  Not one day has gone by that I don’t think about some aspect of the journey we are on.  I can’t seem to express my gratefulness to my God, to my family, to my friends, to the medical staff that have changed our lives.  My eyes often fill with tears, my throat tightens and I’m all choked up.  So much so that Emily and Andrew just think it’s normal for mommy to cry on a daily basis.

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When Eliana’s genetic counselor explained that there is no genetically known reason for her heart

defects…my eyes filled with tears.  I praise God for how He designed my baby girl.  I sat down to explain my tears to Emily & Drew.  I told them how God has helped us through each step in this process.  The three of us talked about how God brought Emily through hernia surgery, Drew through eye surgery, and Eliana through heart surgery.  Emily’s responded, “Mom, God is our Healer!”

Our God has Answered….Again!

22

07 2009

Eli Videos

05

07 2009

Great News!

Just a quick update:

Eli’s tests came back great. For the third straight visit, her numbers didn’t change….AWESOME! The doc said that her aortic repair and VSD repair are holding up great. Her aortic valve is still broke, but with the numbers not going up, we won’t have to go back until October or November.

Thank you for all of your prayers. Leah and I truly appreciate them.dscn1398

19

06 2009

“A Pleasant Surprise”

“A pleasant surprise”, Dr. Spooner said as we sat in the room listening to the results of Eliana’s latest echo cardiogram.  Since Eliana’s release from the hospital, the pressure gradient of her aortic valve has been doubling each visit to the doctors.  Not good.  Normal levels would be around 4, but Eliana’s number trend went all the way up to 57 six weeks ago.  The doc not only expected it to continue to increase, but pretty much said that these trends never change…maybe taper off, but following Eli’s trend, she’ll reach 70 and then internention would be needed.  We fully expected him to say that that was the case…but a “pleasant surprise” was not what we expected.

For the past 6 weeks we have prayed over her and spoke God’s power into her heart.  And low and behold, the pressure that usually doubles only increased by one point.  Bringing the gradient to 58…“a pleasant surprise.” While she is not healed of the problem, she won’t have to be checked again for 3 months.  This gives her time to gain more weight.  Which will help her when she does need the “intervention”…if she’ll need it.  Once again, the doc said that the trend should continue and we’ll be in the cath lab within her first year.

So the doc called this a, “pleasant surprise”, but I call it God’s hand working a masterpiece in my baby girl, building my faith day by day.  Its hard for me to express how I feel.  God is making his presence known in my life through my children.  I’m all choked up as I write this, because only a few days ago, I doubted.  “Did I pray enough?”  “Did I spend enough time with her?”  “Have I given enough attention to my little girl?”  “Could I/Should I have done more?”  I would have never chosen this path for my family.  But one day at a time, I know God has his hand on us.

Through all of this, I’ve met the most amazing medical staff.  Every visit brings back so many memories…so much gratitude.  I think I’ve left part of my heart at Albany Medical Center.  Every time we visit the cardiologist, we take the time to visit the NICU and  PICU. We love those nurses and doctors.  They’ve made such an investment in our family that we can never repay.

For the next 3 months I’ll enjoy each day with Eliana, Andrew & Emily.  We’ll finish up preschool, pick up their rooms countless times, change dirty diapers, ride bikes and hopefully take a trip to Alabama to visit Chad’s family.  I know that another echo cardiogram is just 3 months away, but for now I can relax because God has given us time.  My prayer is complete healing for Eliana.  And if not, I’m confident that God will walk us through whatever, “pleasant surprise” is next.

13

03 2009

Drew and Eli Update

Well the good news is Andrew’s eye is doing well and he did well on the hearing test at the ENT doc yesterday.  He does have scar tissue in one of his ears that will eventually cause hearing loss and of course will have to be surgically removed…that’s how we roll.  And he doesn’t go to the cardiologist for a couple of weeks…so nothing to worry about yet.

Tomorrow at 2:30pm is the appointment we’ve been dreading for awhile.  We go to the cardiologist for Eliana’s tests on her heart.  According to the doc, if nothing has changed and the trend of the pressure gradient for her aortic valve is the same…intervention is needed. First it would be balloon valvoplasty, then monitor it.  If that doesn’t work right then it’s on to valve replacement, which means open heart surgery every 1-2 years until she’s fully grown.

Please pray with us that God has changed her valve and made it grow…made it whole and complete. Looking at Eli, you’d never believe that she has heart issues.  We just don’t want her to go through this.  And selfishly, we don’t want the pain of it either.

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10

03 2009