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More surgery

PhotobucketToday Chad and I took Andrew to see his eye surgeon.  After examining his eyes again, we all decided that he needs to have another surgery.  When Andrew was only one year old, Chad noticed that his left eye moved very high and outward he began seeing a specialist.  “Doing the eye”, has become one of Andrew’s famous tricks.  Especially when he’s in trouble.  Try discipline with a straight face while your kid makes this face…impossible!  We end up laughing every time.

Back in June, while visiting family in Birmingham, we took Andrew to see an eye specialist at the Children’s Hospital.  Having a second opinion confirmed to us to go ahead and try to have Andrew’s eye fixed…again.  Its not an easy decision to have your children undergo more surgery.

We would like to have it done before preschool begins but the surgeon is booked all the way through October.  Andrew has been added to the top of the cancellation list to try and fit him in.  If he can’t get in before school then we’ll wait until the first of the year.

For whatever reason, God seems to continue to lead us down this road of surgery.  Thankfully, Andrew has no fear…ignorance is bliss!  After his first surgery in Feb 2009 he cried for Emily and a ham sandwich.  The next time he goes into the recovery room, I’ll have the sandwich ready…no Emi though!

Check back for more updates.  Your prayers mean so much to us.

07

08 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

“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

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

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

Today’s Milestone

I’ve had a smile on my face all day. When I arrived at the hospital this morning, Eliana’s nurse greeted me with GREAT NEWS…today we could try nursing!  Eliana had just finished her bottle & feeding tube, so I had to wait a couple hours until her next feeding…the anticipation almost drove me crazy.  I’ve been waiting 18 days for this moment.  I couldn’t wait to have her in my arms and try to feed her.  I didn’t want to get my hopes up…no more disappointments.  Teaching her to drink from a bottle has been slow going, so I assumed that breastfeeding would be the same.

Well, Eliana has pleasantly surprised me.  She immediately latched on and nursed for 6 minutes without stopping.  The lactation consultant stood by to assist, but Elaina is a natural!  We both watched her STATS on the monitors. Its a new experience to nurse while watching a computer screen to make sure her heart rate, breaths per minute, oxygen level, and blood pressure all stay normal.

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Sorry to have to keep this short, but Eli’s crying and for the first time in 18 days only mom will do!

06

11 2008

Another Day for Leah

Eliana is 14 days post-op for her heart and 4 days post-op for her diaphragm surgery. All this has happened in the past 16 days. For some reason watching her recover from her second surgery has been more stressful for me. I haven’t been able to hold her since Friday and she often cries when I’m with her. My instincts scream for me to pick her up and bounce, swing or dance with her. The only thing preventing me from doing that is the CPAP machine.

Every morning and late afternoon a tech comes to take an X-ray of Elaina’s right lung. I’m always so hopeful that the radiologist will call with good news. So far, no significant changes in her lung. I keep praying that her lung will inflate and we can start teaching her to drink from a bottle again. It’s getting a bit discouraging to sit here day after day watching and waiting. I want to be talking about the normal baby things that should be happening for a two week old like how many times she woke up last night or how she fits in all of the hand me downs from Emily. We should be singing this song at home (this was the first time that Emi and Drew were allowed to see Eli after her heart and diaphragm surgery)


Happy Family from Chad Clem on Vimeo.

I don’t mean to complain. I know things could be a lot worse. I see, “a lot worse” all around me here in the Pediatric Intensive Care Unit (PICU). God has carried us through so far so why am I getting frustrated about a collapsed lung?

I’ve been reading all of the comments that all of you (our friends & family) have left and one thing Sue C. said has been sticking in my mind. “Never doubt in the dark times, what God told you in the light.” Thank you Sue for reminding me today that God is still good and He is still healing my daughter.

04

11 2008

Two Worlds

As a mom, I’m living between two worlds and both are tearing at my heart.  I have a one week old baby who is tied to machines and a hospital bed and two preschoolers who just want to have me home.  I’ve known that this was going to happen for the past four months.  Was there any way to prepare my children or me? 

Emily and Andrew know that Eli needs to be in the hospital but they don’t understand why Mommy does too.  Leaving my baby alone in the hospital breaks my heart every day.  Hearing my daughter and son cry when I call home is just the same.  So here I am happy to be home but longing to sit at her bedside and watch her sleep. 

My real struggle though is dividing my love, energy, and time.  If I choose to stay at the hospital around the clock, how will that affect Emily & Andrew?   But when I picture Eli laying in that huge bed alone does she feel abandoned?  Does she know that her family is not there with her?  Our first night sleeping at home  I came to a breaking point.  While Emi & Drew cried because the next morning I would be leaving again, Eliana laid in her bed alone recovering.  I sat on the edge of my bed and began to cry.  None of the decisions I make feel right.  I’m lost in both worlds. 

The nurses and doctors have been great.  They’ve put me at ease each night when its time to say goodnight to Eliana and I can call Eli’s nurse anytime I want.  But it still does not fill the void in my heart. 

I’m anxious for the day when they say Eliana can come home.  When we – our family of five – can sit and play together…be home together.  I can imagine Emily yelling at Andrew for harrassing her, Andrew making Emily laugh histerically because he calls her “Honey”, and Eliana working her way into being a part of what God has already given us.  I can’t wait to make memories that will last a lifetime.  But until then…..I’ll live in two worlds with great hope and anticipation of the day our family is together.

Psalm 55:22 says, “Cast your burden on the LORD, and He shall sustain you; He shall never permit the righteous to be moved.”

Psalm 62:2 says, “He only is my rock and my salvation; He is my defense; I shall not be greatly moved.”

“I Will Not Be Moved” by Natalie Grant has really helped through all of this.

26

10 2008