Happy Birthday!! -- November 30th, 2010

I want to first apologize for the SERIOUS delay in my posting, but I am ready to get this blog back up and running!! I posted some pictures in the slide show of our miraculous day and we hope you enjoy them. :)

We actually thought we may have been welcoming our sweet baby boy here on Monday, November 29th. However, after a quick exam, Dr. Moore decided to let us get one more good night's rest and report to the hospital early Tuesday morning. So, bags packed, babies cared for, and with anticipation at its peak, we headed off in the dark knowing that soon we would be holding proof of God's miracle in our life.

We somehow ended up with the revolving door of nurses, which would later prove to be NOT the best of situations. But, Dr. Moore was ready for business (as usual ;) and she immediately broke my water. The waiting game began. The Pitocin was working, and considering I had been experiencing contractions for the last 2 weeks, I was handling the contractions just fine. We had decided NOT to have the epidural since our past experiences didn't yield much pain relief. However, Dr. Moore suggested it may be best option considering my heart condition, so we agreed. The initial procedure went fine, but within an hour I had a fairly severe reaction including my blood pressure dropping dangerously low and little Eli's heart rate doing the same, ending up somewhere in the 20s and once dropping off the monitor completely. Unfortunately, due to the multitude of nurses that helped care for us that morning the medicine used to stabilize such a situation wasn't present in my room. So, for a short time, our faith was forced to show through again... and again God was good. Within a few hours we were back on track and labor was resumed.

Just as I thought Dr. Moore would never make it on time, she showed up, scrubs and all, from a C-Section she literally finished moments before. She said SHE wanted to deliver our Elijah and she did a fantastic job. With only a few pushes later... HE WAS HERE!!

Those first few moments were some of the most emotional I have ever had in my life. Dr. Moore handed Elijah to me and gave me a moment to take in the reality of our little miracle. She didn't rush me and allowed me the time that I needed... for those moments I am forever grateful, they will never be forgotten. I could feel all of the anxiety and stress and anticipation beginning to let down as I stared at my beautiful boy who at times in the last 7 weeks had seemed like merely a dream. I handed him off and watched fervently at their every move desperately looking for a response from the NICU team that he was "ok." I watched and looked at Matt's face for reassurance as the tears of fear and joy streamed down my face. He continually gave me that sweet but scared smile that told me as well as he knew Eli was fine, but I could sense our fears were the same. Once they were able to clear out all of the extra fluid from his little lungs, (it was an extremely fast delivery), we were able to visit with his fan club for a few moments and then it was time...they whisked him away for his cranial ultrasound... this wait seemed endless.

He was finally brought back to us after quite some time and we started settling in with our new little one. It is kind of a tradition that our dear friends "Uncle Ron" and "Aunt Kristy" hang out with our new bundles of joy on their first night here, so we expected none-the-less with Eli and couldn't have been happier to have them with us. Ron even made my night a little more perfect with a huge box of Krispy Kreme Donuts!!!! (He loves me ;)

We would not find out about the ultrasound report until just before we were to be discharged. As I have stated before, God has been abundant in Eli's life in ways we could not even have imagined. By "coincidence" ;) the exact neonatologist that had received Elijah's perinatal report and would have been scheduled at the delivery if immediate action was deemed necessary for his brain, was the VERY SAME doctor that was on call to evaluate the babies the day Eli was there!! He already knew of his background and was very aware of the purpose of the ultrasound... The Results... All measurements within "NORMAL" ranges!! Praise God!! The most notable comment was simply that there was a "Prominent Cisterna Magna" observed, which as a solitary finding is considered a completely "normal anomaly." (seems like an oxymoron I know)

We were eventually discharged and on our way home, which was a great feeling. We were home only a couple of days before we found out that Taylor had the Flu!! Eli would shortly after catch a little cold and at some point during everything I said to Matt "I'm ready for normalcy..." to which Matt replied "I think this IS normal!" :)

We couldn't be happier with our “normal” and each day is simply a blessing...

More to Come I PROMISE!!!! :)

The Time is ALMOST here!!

It has been a while since we have posted, but really nothing has changed in the down time. We had a lot to do to finish getting ready for Elijah and since time seemed to have stopped for almost 3 weeks, we had gotten a little behind. We finished sorting and washing ALL the clothes, getting his room organized, and my fantastic hubby even got the house ready any surprise guests that might need to stay here with the babies.
The last week has been tough. My body has decided to get some REALLY good practice in before the big day. For just over a week I have had contractions on and off, sometimes consistent for a while, but always fading away after a couple hours. This past Friday night they started around 10pm and within an hour were every 4-6 minutes and getting stronger. We went to the hospital and they had gotten to every 2 minutes. We walked, nearly in our sleep :), for an hour and everyone, including the nurse, expected my water to break and to for that baby to be there soon! No progress… Just 2 tired people AND the contractions intensity had started to decrease but they were still every 2 minutes. We went home with some medicine to sleep, don’t think I needed it considering how tired we were BUT I took it none the less and the contractions died down even more. The next couple of days went back to some pretty strong but totally random contractions and now, here I am so excited I can’t possibly sleep!! :)

We go to the doctor after lunch today and they are going to check and see if I have progressed. I will either go to the hospital tonight or Tuesday morning… Or maybe (fingers crossed) they will just send me after my appointment!!! None the less our sweet baby boy will be here SOOOO soon and I can hardly stand my excitement. I don’t think I have felt this anxious (in a good way) about anything since I was little bitty on Christmas Morning. :)

My mind is definitely busy and anxious as well. Just last week as I realized how close we were to Elijah being here, I started having some of the fears and uncertainties begin to creep back into my mind. We have been so busy that I have put much of my worries to the side in an attempt to get ready and ENJOY what was left of our time together as one. Thankfully, I have not forgotten my trust, and what those weeks of terror felt like. I can’t see it makes the fear go away, but it gives me strength beyond what I can understand and brings me peace amidst so much uncertainty.

Our next post will be an update on Eli and maybe some pics if I can figure this blog out from my phone :/ Check back soon!!

Love you guys!!!

God's Fingerprint...

My husband and I have been expecting a sweet baby boy since sometime in April.  We have 2 other children and this pregnancy had been the most UNeventful of the 3.  At 34 1/2 weeks pregnant, during a somewhat routine checkup to monitor his growth, we were told that he was growing wonderfully, BUT, there was something else... The specialist informed us that our son had a malformation of his brain. Either a piece was missing all together or it wasn't fully formed, as well as excess fluid, and cyst possibilities.  The prognosis spectrum was anywhere from mild to severe and only time would tell, but regardless there was an area of darkness in his brain that "shouldn't be there."  We had images that supported this and we began our journey of education and preparation.  Along the way we received news ranging from uncertainty to definitive diagnosis, that a piece of his brain was absent. Last week we went for an MRI of our son to clarify to the best of medicine’s ability the truth and most likely outcome for him. 

I should tell you that his name is Elijah Jefferson Mundok. Elijah, taken from a great prophet and Jefferson, one of the Godliest men we know.  Originally, his name represented the profound words of Elijah in choosing faith in God or Baal but NOT the convenient mediocrity in the middle.  It turns out, Elijah was a man surrounded by many miracles, and our baby Eli is no less.

From the time I knew about the part of his brain that was in jeopardy I began to pray that God would leave his mark on Eli.  I prayed that he would literally touch his brain, heal it, and create what only he knew should be there.  I specifically asked that his fingerprint would be evident and there would be no question that he had worked yet another miracle for Elijah.  After our neurosurgeon reviewed just under 600 pictures of Baby Eli’s brain, we were told ALL pieces of his brain were present and he did NOT have a malformation!  You can call it a “misdiagnosis”, an “overzealous doctor”, or a “glitch” in the medical equipment but I call it God’s fingerprint on Elijah Jefferson Mundok and I am blessed to have witnessed such a miracle.  He does have some excess fluid at the base of his brain, which we felt was likely and the best case scenario,  but NOTHING that would require surgery as of now and nothing that should keep us from having our baby boy at home with us in only a few short weeks to come…

Headed in the Right Direction... Now What?

Now What…?

                It is surprising how difficult it has been to “digest” or internalize our latest news.  I think we are still holding our breath, or maybe our shock is starting to set in, or maybe… I don’t know exactly.  I know what we do have in common is, that right now words are still short and nothing is better than an embrace that speaks all that our minds cannot.  I could simply hug Matt all day long I would feel as though I had spoken everything and know that he understood.

                We went Wednesday afternoon (11/03) to have the MRI of Eli. It was an interesting ride to the hospital.  I had done well that day spiritually so I was somewhat calm and Matt was doing well as well.  We had a conversation about the possibilities and the truth that one of them would bring.  The Lord had blanketed us with Peace that ride I AM SURE, because we simply held onto each other and walked through the hospital doors with our heads held high. We knew that we had not been defeated by this regardless of what was about to be known.

                I cannot say enough about the Children’s Hospital Staff.  They were so great to work with and even settled some last minute nerves with us.  They pretty much held our hands the whole way.  The MRI was not the most pleasant experience of my life. I am evidently a little more claustrophobic than I realized  :/ and that tunnel is SMALL!  But the stress passed and I worked on getting focused to pray and just be connected to the Lord.  Out of NO where she turns on some music for my “relaxing pleasure” I suppose, and it is a medley of Pink, Katy Perry, T.I., … LoL… Sheesh! I just chuckled, rolled my eyes, and told God “We may have to talk later.” Surprisingly though, I started to be able to tell when she was taking the pictures, which were in short intervals, and I was actually more than able to focus and pray especially while she was getting the images.

                After just under a half hour it was over and we were getting ready to head out.  The head of the MRI department had already agreed to give us a disk of the images and he hadn’t forgotten.  He handed it to Matt, walked us out, and wished us the most sincere “Good Luck,” it actually brought tears to my eyes just to hear it.  Having that disk was like having “the box” or something.  Part of us wished we didn’t have it and the other part of us wanted to look at it immediately.  We made it home after picking up our babies and finished baths and homework as if “the disk” weren’t stalking us… but they were.  Eventually, the babies were down and we decided to watch some TV to relax and then make a decision about looking at the images.  I hadn’t so much as sat on the couch before I was creeping to boot the computer up and work my way “casually” to the kitchen to by “chance” come across the disk.  I quietly brought it back and Matt quickly realized what I was doing. He asked was I ready… and I said, yes.

                I had done enough research to know what I was looking for but also to know that there is a reason neurosurgeons go to school FOREVER… that stuff is very confusing.  The disk loaded and it was time to click on “view images.”  I was literally shaking as I figured out how to scroll through the images.  Then the 1^st one… was that it? Did I see it?... then another one… I think that’s it!? Then Google Images… That’s gotta be it! I told Matt, I’m nearly positive that is it. I don’t know if it’s big enough or if it’s the formed completely, but that’s gotta be it… we both clicked through the images and we began to breath again.

                The next morning I took the images to our “God-Send” friend, that had taken every step of this journey with us, so that I could ramble to her about what I “thought” I was looking at and we could compare notes on something we didn’t really know a whole lot about. (We were really just keeping busy in a pseudo-efficient way until “the call” came from the neurosurgeon himself)  No more than 5 minutes after loading the pictures and beginning our chit chat, the phone rang… the display said NEUROSURGEON… I knew this was him.  He very mildly introduced himself and explained he had just reviewed the MRI and my baby did NOT show signs of a brain malformation!!! Specifically not the diagnosis we were given.  He did have some fluid and ventricles measuring larger than normal but nothing he was concerned with “at this time.”  I broke down in elation/frustration/exhaustion.  The day went on like usual and as the time passed I began to slowly digest/ over-analyze his words.  I started to wonder why he didn’t mention the particular part of his brain and say it was “normal,” why we needed to go back, how the fluid was getting there and what impact that would have on Eli. 

For whatever reason I could NOT let myself simply trust or believe this was all over.  After relaying this information to my OB they told me that since we now had to conflicting diagnoses, I needed to visit a different perinatal specialist to figure out what to do now…

The following week was sort of like slow motion. We were headed in the right direction, but we just couldn’t seem to get there fast enough… So they waiting continued and our “celebration” stayed subtle as we held our breaths a little while longer.

Really Quickly... A Miracle Has Happened!!

        I have SO much to say and so little time and focus right this second, but I HAD to get something on here so you all will know the power of your prayers... God heard you and our son was HEALED!

      We received a call first thing this morning from our amazing Neurosurgeon who told us, after review 600 pictures from yesterdays MRI, that Eli did NOT have Dandy Walker Malformation. In other words ALL pieces of his brain are present!!!! GOD IS GOOD!

      His findings were that Eli has a pocket of fluid at the base of his brain near his spinal cord, what is diagnosed specifically as a "large cisterna magna."  HOWEVER, the pocket is small enough that he will NOT need any further treatment throughout the pregnancy and we will not return to the Neurosurgeon's office until Eli is 2 months old!!

He is safe, he is whole, he is God's work... our baby Eli...

Can't wait to talk to many of you and i have much to say and even show you that I will try and post in the next 24 hours.

God Bless EACH one of you and I hope that you feel your connection to The Lord through our Beautiful Boy...

Not To Be Forgotten... A note to myself

           I wanted to write this before we move any further in our Journey because I will need a reminder of this day and this understanding.  I am fearful that I will either forget or I will not want to accept this truth… be it this week, this year,  or simply at some time in this life.  I do not want to be humbled to this point again, ever.  I want to remember, to hold strong, and to maintain this truth. 

Faith is not a bargain or a deal.  I have struggled with this because in the deepest recesses of my heart I want to say, “Lord if you will just... make this go away, heal Eli, make this miracle known… Then I will... tell the world, never doubt you, trust you, love you, be faithful to you” but where does that leave room for His Plan and His Will and our relationship if my way is not His?  The conditions MUST be removed if I am to call this Faith. It cannot be “If YOU will… then I will” because what if not? It must be “Regardless of Your Will… I will” conditions removed create unconditional. That is what we as humans long for from our own, so how much greater must our Maker yearn for that from us.

If Gabe came to me and said, “Mom, I know you’ve done so many things for me. You’ve loved me, you’ve provided for me, you’ve sacrificed for me, you’ve cried tears I will never understand… for me (and I have)…and I want to love you because you’ve been great… But I need you to do this for me. I’m not sure if it’s what’s best for me, but if you don’t do it… I’m not sure I can trust you anymore, or love you anymore, or have faith that you will be there for me… Nothing I have for you will be unconditional…”  I would be devastated.  I would love him No less ,but I would ache for his unconditional trust and love.  And if I knew that his request was not what was best for him I would deny it and pray for his quick understanding and return to my arms, all the while broken hearted as I watched.

Of the few things I have given to my son, I have given nothing in comparison to His gift of His Son… To know the hurt I would feel and the patience I would have with my own is incomparable to what He will feel and have for me… is gut-wrenching.  To think that I hardly know how not to bargain my faith because I want what I think is best, what is the easiest, and to be in control… has broken me to a point not to be forgotten.  It is as though there is a second part of salvation that no one made me aware of.  You reach out and you accept His invitation and put away your past and you think that you have laid it all down, but that is only because at that moment things seem to be going right. You feel loved, and accepted, and part of something bigger than before… and you ARE… but that is only the beginning.  You walk through some trials and you have pity for yourself. Sometimes you cry out to God but for the most part you are in control of the outcomes and if you put enough “work” into the problem the result is usually a “fix.”  Sometimes you offer God some of the Glory and say your “faith” got you through, but you know truly that is was YOU who did the work and YOU who overcame and your “faith” was really in you… because look around , all is becoming well, who couldn’t see the “faith” in that.

And then that day comes… That day that you realize you never thought about the other side of your deal.  That part about, if this doesn’t go the way it should, if an alternative is not there, if we don’t come out of this on the high ground…  If HIS Will is NOT what is “best” for you.  Then where is your faith, then where is His Glory?  It wasn’t all fake before, but it wasn’t all laid out either. You still had a few cards hidden away you weren’t willing to play, because THAT is something different. THAT is FAITH.

As I write this from a place of strength at this specific moment I can still see about a half card that I am hiding in my sleeve… I have laid nearly ALL of them out, more than ever before in my life, but this one seems to be stuck, no matter how hard I insist I want it out.  What’s keeping it there? Don’t you already know?  It’s F E A R… fear that this won’t go the way I WANT it to. Fear, because there is no doubt that I have NO CONTROL in this.  Fear, because I am committing this situation, my son, to the Lord and I do NOT know what the outcome will be. I DO know however, that He is my Father in heaven, and just as a child I trusted my own dad and would have jumped into darkness at the beckon of his call knowing his hands would be there with endless comfort… How much more than do I know that my Heavenly Father will be there and how much more than do I know that He will comfort me and how much more than should I trust Him.

I imagine me, as a child, standing on the steps of house and my dad, clapping his hands twice, saying “Jump Britt!” With a smile on my face and without seeing him with my eyes, I gladly leap in the direction of his voice.  He catches me as he always has and as he cradles me.  As I look over my shoulder I see the steps of the house I was standing on collapse and nothing can be made out except a rage of fire.  There wasn’t time to explain, and I wouldn’t have understood anyway… He knew, he called, and I came.  I can’t imagine where I am standing right now; my perspective doesn’t allow me that view.  But He knows, He is calling, and at this moment I am ready to go.

I don’t know that even tomorrow I won’t be scrambling to recant this or to get that card back in my sleeve. I do know I will not always be this sure and this filled. So, as Not To Be Forgotten, I am hoping that when my fear is too great or when I am too busy in my own “faith” of the best of times, I can re-read this and remember  the discipline to Stop, to hear HIM, and to Jump…

Publishing this post will be the hardest one yet. Eli's MRI is this afternoon and a lot of questions will be cleared up, though many will remain. I will re-read this many times I'm sure, and I pray for our strength to last.  Please continue to pray that God will send down Fire and heal Eli... However, pray also, regardless of the "results" that all of our cards will be laid out and fear will be overrun by FAITH...

Proverbs 3

⁵ Trust in the LORD with all your heart, and do not rely on your own understanding; ⁶ think about Him in all your ways, and He will guide you on the right paths. ⁷ Don't consider yourself to be wise; fear the LORD and turn away from evil. ⁸ This will be healing for your body and strengthening for your bones.

PRAISE THE LORD!!!!

         So after waiting to no end and finding a bit of courage this morning, I decided to call the specialist's office and ask if the Amnio results were back yet... Turns out they had been back for a few days, no one bothered to inform me of the results, which were by the way NORMAL!!!!!!!!!!!!!  Praise God, Praise God!!!

       After hearing and then re-asking the question "So, no Chromosomal abnormalities appeared??" and getting a second "normal" answer, I hung up the phone and collapsed... in joy, fear, anxiety, stress, exhaustion... the release of a great deal of what Matt and I had been silently holding our breath for.

        I know it is not over yet, but we are half way there at this point.  The specific malformation that we were given the original day of diagnosis is highly found in conjunction with other, sometimes life-threatening, chromosomal abnormalities.  You can understand then, the hope that we were given with such a simple word... "Normal."  Which, by the way, I have been doing some serious inquiry into what "normal" is anyway... In a time to come I will explain my questions.

         For now, we are headed full speed with our neurosurgeon who offered a few other possibilities as to the dilated ventricle and excess fluid. We trust him and his judgement and are looking forward to knowing, as much as possible, what is going on in little Eli's brain, and what, if anything, he will need when he gets here.

       I cannot form words more profound then Thank You... and yet they seem so over used or insufficient in this context... But it is all I have to offer, our Thanks to You... Each of you, for your interest, your thoughts, your love, your kindness, and especially for your prayers. Our hearts have been touched, but Eli's life has been changed...

Some scrap wood we are going to use for a small project has been laying in our yard for a small time now... Just recently we stopped to pay close attention to it... He is here, He is working, we are changing...

Finding Some Words and Praying Specifically

           My words have been hard to come by lately simply because I can’t keep straight WHAT I am feeling or WHAT is actually going on.  On top of the fact that life must go on and there have been a million other “regular” things to get done for Halloween, and school, and just around the house.  But, we do have some specific prayer requests as we wait for the MRI so I wanted to share those with you guys and thank you in advance for your time and thoughts…          

This past Thursday I ran into yet another unequivocally low point in this journey that I have since struggled to recover from.  During my “routine” two week check up with my OB we were unexpectedly part of a conversation between her and the director at the specialist's office who diagnosed Eli (the place we had already decided we would not be returning to).  During the course of that chance conversation I was told that Eli did in fact have a “Classic” malformation due to the missing portion of his brain… Again, time stopped, my ears burned, and my heart rate was out of control.  I questioned my OB as to the fact that this didn’t match even what SHE was told the day of the diagnosis… remember those words “mild and subtle”???? That doesn’t equal a portion of his brain missing!!  She instructed me to speak with the director from then on … I was devastated again but now my frustration was slowly turning to pure anger towards the people at this practice.  All I could think the entire night was that they had many more pictures and live video that they did NOT send with me to the neurosurgeon and they could see, and have known, what is going on with my baby and had NOT told me!!

                Matt decided Friday that I should call and politely demand ALL of the images for Eli regardless of their relevance to the neurosurgeon.  So I did. The front office knew who I was and was expecting my phone call.  She got some information and informed me that the ONLY images/documentation that they had of Eli’s brain were the THREE pictures that we had already received!!! They had NO other pictures or videos and we knew that the neurosurgeon, although he would not rule it out, would also NOT diagnose him with that evidence.  Finally, I breathed a small sigh of relief…But at this point I am learning  to let out less and less relief with my sighs, in hopes that when the next unexpected twist arises I won’t be so incredibly out of breath… I know, not the best strategy, but I’m working on it.

                So where are we right now? … If after reading this entire blog you are confused and wondering what is going on? What is there and what is not there? What do the doctor’s think is to come? And feel like I have been writing in some kind of code to keep you out of the loop… then I have PERFECTLY conveyed how we feel and what we know…  My gut has it’s beliefs but they really aren’t worth sharing just yet because they are just a result of a plethora of confusions at this point…

                What do we need right now?... PRAYER… We are praying specifically that ALL parts of Eli’s Brain are PRESENT… If there is a piece that wasn’t able to be seen 2 weeks ago, we are praying for God to leave his fingerprint on that piece as he helps his brain continue to grow.  We are also praying for “NORMAL” results from the amniocentesis (we still haven’t heard yet).   Even with those two requests that I know are in God’s hands I must also say that our prayer continues for our strength during this journey REGARDLESS of images, test results, and diagnoses…  That we will learn to lean on the Lord for His understanding instead of our own…

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Our Goals...

 

1 Peter 5  (NIV)

⁶Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. ⁷Cast all your anxiety on him because he cares for you.

 ⁸Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. ⁹Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings.

 ¹⁰And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. ¹¹To him be the power for ever and ever. Amen

Jeremiah 29:11 (New International Version)

¹¹ For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future

This was supposed to be Proverbs 3:5, but after reading the entire passage the rest is even better!

Proverbs 3

 ¹ My son, don't forget my teaching, but let your heart keep my commands;   ² for they will bring you
    many days, a full life, and well-being. ³ Never let loyalty and faithfulness leave you. Tie them around your neck; write them on the tablet of your heart.  ⁴ Then you will find favor and high regard
    in the sight of God and man. ⁵ Trust in the LORD with all your heart, and do not rely on your own understanding; ⁶ think about Him in all your ways, and He will guide you on the right paths. ⁷ Don't consider yourself to be wise; fear the LORD and turn away from evil. ⁸ This will be healing for your body
  and strengthening for your bones. ⁹ Honor the LORD with your possessions and with the first produce of your entire harvest; ¹⁰ then your barns will be completely filled, and your vats will overflow with new wine. ¹¹ Do not despise the LORD's instruction, my son, and do not loathe His discipline; ¹² for the LORD disciplines the one He loves, just as a father, the son he delights in.

A Process of Finding Peace... Still Waiting On Answers...

The morning started out tough... Somewhere between exhaustion from not sleeping and constant, consuming anticipation of the next few hours lead to a very nauseated wait.  I tried to decide how to pray and what to pray for and ended up relying on the scripture that so many of you have shared…

We arrived incredibly early with folder and paperwork in hand.  Turns out we wouldn’t be the only parents with this same setup.  Surprisingly, a pediatric neurosurgeon has the LEAST amount of paperwork to fill out compared to any other doctor I have ever been to, which I’ve got to say was actually a nice relief.  The waiting room was our first challenge… It was frightening, and humbling, and encouraging ALL at the same time.  As a mom and her son, who strikingly reminded us of Gabe, sat across from us I whispered to Matt, “I wish I could read minds in here.”  Not more than a couple minutes later she made reference to our folder and “notes” and joked about her collection of the same thing.  Within seconds she had boldly asked me what was going on with our little one.  I was actually relieved, because I wanted to know the exact same thing about her.  I told her what little we know about Eli and she shared a story that surpasses all odds and brought me to praising the Lord right there before we had even heard a snippet about Eli.  I was a little more settled and a little more confident after talking with her and almost felt ready to meet our doctor.

They called us back and we waited only briefly before meeting a very confident but kind Dr. B.  He climbed up on the examining table and chatted about our history and told us about his daughter who was also studying to be a teacher.  He put us at ease immediately by treating us as people, just like him, who simply chose to do a job that was their “passion.” Not really much of a connection between a teacher and a neurosurgeon BUT he simply explained himself as someone who loves coming to work every day. We continued to become more settled… We discussed the confusing/conflicting reports sent from the referring doctor and then it was time to insert the CD with “the” images on them.  After a moment of figuring out how to scroll through the somewhat confusing program they were packed in, he went to click the next button and looked at me as if to ask what he was doing wrong.  I told him there were no more images, only 3.  He responded confused with “That’s it?”  I apologized and told him that I wished that I had more for him to look at, to which he apologized and said he just didn’t want to leave us unanswered again.  Unfortunately, from the pictures there was very little he could determine and he was NOT in the business of guessing based on poor quality pictures.  A malformation was neither ruled out OR in.  What he did speak only briefly of, was some extra cerebral spinal fluid and some dilation of the one ventricle that he could actually see. These were as he state “indicators” of a cyst, but much more confirmation is necessary.  He needs MANY more good quality images to discuss anything further with us and has set in motion plans for us to have a Fetal MRI very soon.  We should hopefully hear something by the end of this week as to the MRI date and time.  From there we will move forward with our understanding of the, right now, unknown.

I feel one of my prayers has already been answered… For the first time I feel as though Eli is in good hands and under the watchful eye of a wise and resourceful doctor.  We will be cancelling our follow-up ultrasound, so our prayers are now directed towards the MRI and the still lingering Amniocentesis results.  Also, we will continue to diligently pray that over the next 5 weeks, anything that needs healing will do so as Eli stays safe in his protection with me.  Please continue to pray for continued wisdom for Dr. B as well. 

We are tired and exhausted from the mere stress of the day and past week… We appreciate and are indebted to each of you who have stopped to pray for Elijah.  Words will never encompass what that actually means to us, but know that each of you are one of the things in this time that we are grateful for…

Neurosurgeon Appointment is Scheduled!!

      Our schedules are filled with a fair amount of “hecticness” and anxiety over the next few weeks.  Our first appointment however, has been scheduled!! Although our anxiety is heavy and will be with each of the next appointments we have and results we receive, we are looking forward to some amount of consistency with the news that we receive and stepping off, if only momentarily, of our roller coaster of ambiguity and conflicting news.

    

        We will meet with Eli's neurosurgeon tomorrow afternoon.  Strangely, the consultation appointments with this awesome group of doctor's is NOT in network for out insurance...??? I know, it's crazy... But we have started the appeal process and found out that thankfully all procedures (which are done in the hospital) ARE considered IN network.  Sheesh, who would have thought stuff could be so confusing!! We have gotten a lot of support and interest from the people we have spoken with at this office and we can hardly wait for appointment tomorrow afternoon...

Please pray for the wisdom and understanding of these doctors as well as our constant cry for Eli's brain to be touched by The True Physician and Healer that is bound to no medical limits or test results.

We are indebted to each of you for including Eli in your prayers and we will keep you posted...

A Hint of Peace and Where all This Began

Day 5 - 10/24/10 8:49pm

      My mornings are my times of uneasiness and writing is how I am trying to handle it which is why some of these posts are hard for even me to follow with the recapping and what not... But, Matt and I are trying to use this page with a dual purpose of keeping those that are supporting us informed while doubling as my outlet.  We think it's easier just to get it out here instead of trying to explain what we really don't know on numerous occasions.

      With that said, today was a day that we needed more than we could ever have known.  It was my first glimpse of peace within our storm and our first experience at sharing what we are working on accepting.  We are blessed beyond measure with a church family who have accepted our request for their prayers and lovingly respected our uncertainty.  Everything from the worship music, to the Sunday School Lesson, to our phenomenal Pastor's message helped in pushing us towards our first hint of peace. And though I am certain that this journey will oscillate in the most extreme range of emotions we will take any amount of peace, by any means, for any amount of time that we can...

       I have been holding off talking about the day this all began in part because... I don't want to think about it (although that is really one of my most consuming thoughts) and thinking it would be "easier" later on.  I know now that is not true, so I will give it my best shot and feel sustained by moving on...

       I had been scheduled for an ultrasound with a specialist after Eli's belly had measured a tad small at my last OB ultrasound.  Frankly, I felt as though I was a pro at this specialist idea because with my other two pregnancies I frequented them from 20 weeks on, just to keep an eye on things.  I had no reason to presume this would be ANY different.  The day before, I had gotten a text about having a great friend of mine go with me if I wanted her to, and originally I didn't want to bother anyone and said "thanks, but it's no big deal..." I later decided it was such a nice offer; I should just take her up on it... I had no idea how important that decision would be.  We arrived in plenty of time and I filled out the mounds of paperwork as lighthearted as ever.  They called me back and I laughed and joked with the tech and we even chatted about how great Eli was looking.  She took all the typical measurements that I had recalled with Gabe and Taylor and told me Eli was growing right on track... After she had finished, she told me that the Doctor may want to look again, which is very typical, so not to get cleaned up yet.  I knew from earlier visits that the Doctor ALWAYS looked again so I sensed nothing out of the ordinary.  The tech re-entered and said she needed a couple more shots.  These were different than I remembered, but still, I thought nothing of it.  She scanned his heart, his aorta, his humorous, his index finger and a couple other things... I just simply enjoyed the time of looking at my precious baby...

Shortly after, Dr. H. entered and sat down... She said his growth looked right on track and I nearly got up to get my stuff, but was stopped by the question, "Is it ok if I share information in front of your friend?"  This was the first thing I didn't recognize.  She went on to say something that included words such as "brain"... "fluid"... "shunt"... "shouldn't be there"... and some others that I have literally blocked out or refuse to use at this point...

       

I can't/won't/don't have to explain the scene that followed on that table. I, somehow during that time, realized that I wasn't supposed to have even been there since his tummy was a fluke and looked fine... I realized that no one was supposed to have come with me that day but by a strange turn of events a God-send had accompanied me.  I realized that God was in this but I had no kind words for Him at that point.  I didn't want to be the special parents or the chosen one for this situation... I just wanted the situation to go away (and still do constantly).  Matt met me and I had no words for him just brokenness as I sat with a medical book trying to understand this situation which continued to be almost out of body.  We were informed by the doctor that with an amniocentesis that resulted as "normal" we would have better care for out little Eli. In a more rational state, we can't believe this was presented to us as such, but at the time that is all we had to hear to agree, and so the day got even worse.

       

They performed the amnio within an hour of us receiving the news... that was one of the scariest things I have ever done in my entire life... and if given the opportunity to choose again, we would have declined... Because now we are thinking with our hearts and with some sense of God's peace and we know that NOTHING will change our fight and our love for beautiful baby Eli.  No information they can tell us will keep this Mama and Daddy from making SURE Eli is in the best hands and it certainly won't change our joy to know he is only 5 weeks away...

        

It was the worst day of my life, and regardless of the outcome of this journey and these tests and doctor's visits... I will never be the same because of it...

Thank you for reading about our Eli and for the time and thought you have already invested... Above all my cry is for everyone who comes across this to pray for him...That his brain is complete, that the fluid will reside, and that a miracle is as certain today as in the days of the prophet himself.

        We will keep you posted as we work through this journey and visit his neurosurgeon, neonatologist, receive the amnio results, and see him again in no more than 3 weeks for an updated ultrasound....

All Of Me... by Matt Hammitt

Although everything is uncertain about what is to come, I came across this song that opened my eyes and brought truth back to my heart... Baby Eli is God's baby as well as ours. We were chosen to be his protectors and providers by none other than the Lord himself. For a short time my heart felt as if it had stoped and could not continue... But fear, and uncertainty, and plans that don't resemble those I had been dreaming of over the last 8 months DO NOT CHANGE TRUTH... And though I shall continue to pray for a miracle as close to without ceasing as humanly possible, nothing will change that he-Eli and He-God will have all of us... He is already complete in our hearts and we simply cannot wait to meet him...

Our Beautiful Baby Eli...

The Events of Friday- Frustration

Still Day 4 Mid Morning-
           This was the morning of exhaustion when I had fallen asleep… I woke up not feeling as peaceful as I had the night before, but in a state of logic, ready to put the steps together almost as if to make the next move of this chess-match from Hell. Who to call first, what information I needed, how to schedule these things, and who needed to know what was going on.  On my list to call was Neurosurgeons, Neonatologists, Pastor, Friends, and of course my Mom.  She starts me out with some consistency that I desperately need when my awesome husband leaves for his job and I am alone.

My first call early that morning was to Dr. H’s nurse, the diagnosing doctor, who didn’t answer- I left a message.  My next call was to the Neurosurgeon’s office – side note… listening to the welcome prompt “Thank you for choosing ??? Pediatric Neurology for your child” I almost had to hang up because I got sick just listening to it – but again no answer – I left a message.  I couldn’t remember the neonatologist’s name so I had to call Dr. Ps office (my OB) to get that info.  The woman that I would end up speaking with the rest of the day from that office would turn out to be another of God’s blessings. She had been in a car accident that left one her children with a brain injury and she knew the frustration, the fear, the anxiety, and all that I was feeling, she truly understood.  And she fought for me and helped me that entire day.  She made phone calls and got people to do things that I could not.  The neurologist’s office returned my phone call fairly quickly and said that they had tried to call and schedule the appointment the previous day, but the phone number that the referring doctor had given wasn’t working… they sent out our old number instead of giving our updated information… they asked if we had plans this afternoon to which I quickly replied "no!" and she said that if I could get my hands on the images taken of Eli she would work on getting me in that afternoon.  I was elated! And scared… So I set things in motion to head to Atlanta. Mom and Dad headed this way, Matt was made aware, and our beloved friend was asked if she could be ready.  Everything was in place and as I waited to hear I began working on getting Eli’s images-not the easiest thing since Dr. H’s nurse STILL hadn’t returned my phone call from early that morning, but I did get great help at the office who had the images and they agreed to get the images ready right after lunch… That was GREAT!

The neurologist called back and said that they still didn’t have everything they needed from the diagnosing doctor, no images and no updated report… I was dumbfounded… I told them I would bring the images and she said it would just be easier to wait until Monday to try and schedule an appointment and hopefully they would have everything together.  I could NOT believe that the people who told me something was wrong with my baby’s brain STILL had NOT done their part in helping me speak with a neurologist and understand what was going on.  I was furious, and upset…again, and so confused.  I picked up the images, called everyone to cancel the plans, and headed home with my babies. 

As if the rest of the day hadn’t been stressful enough I now had in my possession the pictures that had shaken and turned my world inside out.  I had the ability to sit and look at exactly what was going on with my sweet baby Eli’s brain, and everyone knows the internet can be your best friend or your worst nightmare in situations like these.  Nonetheless, I chose to look at them… it was very stressful and I didn’t completely know what to make of it, but I saw THE image that is forever engraved in my mind from Wednesday… the one that was followed with the comment, “That should not be there,” And that was hard, but it brought me back to reality, to a point of working on acceptance, and to the place of humility and brokenness I was at sometime between the 1^st night and the 2^nd day. 

The stress of the last 3 days had began to take a toll on my body, and the on and off contractions I had been having at each unmarked turn of events had actually started to become pretty regular as well as the involuntary chills that my nerves were producing and I began praying that it would all stop and that the day would just go by quickly… and it did and they all stopped, for the time being.

I prayed for FIRE again, for the fluid to reside, for all formations to appear normal, for baby Eli to remain safe inside of me for as long as possible, and for God to have His hand of miracles and peace in our lives…

We are indebted to all who are praying… We know that Elijah was a man of miracles in the days of old and we expect nothing less with our baby Eli, every prayer assuredly counts…

The Events of Thursday- Knocked Down Again

Early Friday Morning -10/22/10  7:38am

                It’s finally Friday… It feels as though between Wednesday and Today HAD to have been more like 2 years instead of 2 days.  Day 2 was… Wow... I could never have imagined how that day would have unfolded.  Taylor and I visited a pumpkin patch with her school, but before we could even get on the road I was SO sick.  Breakfast was a waste for both of us but we trucked on and packed our stuff and headed to the Patch. I think Taylor had a great time and I stayed fairly distracted which was helpful. But, as most people well know, when you see someone you know who is 8 months pregnant one of the easiest conversation starters is “How much longer?” “Are you excited?” “How is everything going?” I dreaded every single conversation with every single person. But we pushed through that as well and thankfully it wasn’t long before we were ready to go home…               

My first attempt at this post was short lived... I was so very exhausted that I ended up simply falling back to sleep in front of my computer. Taylor laid with me and rubbed my head, it was one of the most comforting feelings I have had.  But I want to finish the recap of the rest of our 2^nd day in this foggy nightmare. During the pumpkin patch visit, I arranged an appointment with Dr. P, my OB, to simply get an opinion, an expression, a response… something from another medical professional.  I had brought myself to a place of working to accept Wednesday’s news that my baby has something not right with his brain, BUT it was “mild” “subtle” there was no “cyst” “he may or may not need a shunt.”  These were all words that I was told and though they still make me a little sick to write and recap they are my only source of hope, because there is an antonym of each word that COULD have been used to describe the condition of my sweet Eli that would have changed everything even more.

                As Dr. P entered the waiting area to get myself and my beloved friend, I began to since that she reeked of awkward and uncomfortable-ness but my nerves were maxed out, so I didn’t begin analyzing as I normally would.  Matt arrived as we were gathering and I began the discussion pretty much with a recap of the previous day’s information.  Dr. P offered little to no expounding of the subject and in fact seemed to me, to be preparing us for a worst case scenario, which had started to wear on me mentally.  Eventually as the meeting went in circles and was ready to be ended I asked if I could have a copy of the report on Eli, just to keep for my records. She quickly said “sure” and then the awkward aroma became pungent.  She placed her hand on the paper as if to slide it to me and she physically wilted and began to say… “I was hesitant to tell you exactly what was in this report but before I give it to you I’m going to. The report is not consistent with what you are telling me and actually doesn’t match what my sister (my lead OB) was told yesterday on the phone by Dr. H.  It states... MODERATE to SEVERE and LARGE CYST noted...” …………………...............................................................................................................

Each of those periods represents a breath I could not take, a tear I could not cry, a picture of my precious son I cannot erase, a fury of anger and confusion that I could not vocalize.

I began to involuntarily become cold and shiver. I stared out the window and caught a glimpse of my dear husband’s shock and a flat affect overcame me…. I just stared… Someone mentioned the possibility that the doctor may have “re-examined” the pictures to make a better report and I sunk deeper into my state of non-existence… I believe that I somehow mumbled quietly “This doesn’t make any sense” and just as I was doing so I realized that my beloved friend, and Matt and I’s saving grace, that we had brought with us, had taken the report and read it quickly.  She asked me to look at her and said very boldly, “This doesn’t make sense and I do not believe that this is a description of Eli…”  That was enough to bring me to consciousness and I looked directly at Dr. P and said I DO NOT UNDERSTAND.  She felt the urgency and the seriousness of our situation and began trying to call Dr. H who had diagnosed Eli. Of course she was gone for the day, so she got her cell phone number, and of course she didn’t answer.  We left the office on that note and with that heaviness. Upon leaving, Dr. P asked if we minded if she called anytime that night because she would be retrying Dr. H until she got an answer… that was my only glimmer of hope as we packed up and headed out. Everyone was quiet again, everyone looked defeated, bewildered, and confused and climbing into that quiet truck with my husband was again like blindly walking with him through a desolate fog of unfamiliar and unforgiving terrain. There’s no words for that situation… we had been beaten the day before to an extent we never thought survivable, we had gotten up “brushed ourselves off” only to be blindsided for a SECOND time and with news more grave than the first.  And then the phone rang……………………………………………………………………………………………………….........

That is NOT an exaggeration of the anxiety I felt while waiting for Dr. P to tell me what she had heard.  “Dr. H said that she was VERY sorry and that the report was WRONG… Everything from the previous day still holds true and she did not change her findings after re-examining the images.  She will fix it as soon as she gets home to a computer.”

THE REPORT WAS WRONG!!!!!!!!!!! I was overcome and completely broken down as I hung up the phone and shouted, "THE REPORT WAS WRONG!!!!!" I cried again like I did on the table as I heard the words the first time, that gut wrenching horrid cry that only a mother or a father can cry for a child, that one that no one should ever have to cry… I finally stopped and looked at Matt and patted his back as if to celebrate and kept repeating "THE REPORT WAS WRONG!!!" And then it was his turn to break down… and I knew what he was feeling so I let him get it out.  I called our friend and said "THE REPORT WAS WRONG, THE REPORT WAS WRONG!!"  Her response, “Praise God!!!” and indeed we did…

I need not bore you with all the range of emotions of the rest of that day you can imagine all the possibilities that began to pour through our heads and you can also be sure that some amount of anger and frustration with a group of medical professionals that I TRUSTED was beginning to mount. I slept that night, but not great… I think mostly out of sheer exhaustion.

Thursday Morning - The Beginning of The Day After

10/21/10 6:20 am

                It’s just a Thursday, like every other Thursday for so many people… you know, the day you look forward to because it’s right before Friday… but, it doesn’t really matter what day it is, they’re all kinda the same right now.  Oh, yeah, except for the fact that I have to get up and make this day as great as I can for  my precious babies who have no idea why mommy’s smile has faded a little bit, or at best is forced.  I wake them up with the same sweet kisses as always, it’s just that every single one is coupled with a silent thought now, “why?”  I try to find clothes that should have been washed and realize that somehow I lost an entire day and my little man still has no clean underwear… no guilt because for some reason I still can’t engage in “life.”

                The amount of sleep that I did NOT get last night certainly isn’t helping with the lack of efficiency that I reek of at this point.  I don’t want to get out of bed, I don’t want to go on my baby girl's field trip, I REALLY don’t want my husband to go to work, I don’t want to be alone… and responsible… and act like all this is not happening… I just want to scream, and hit stuff, and cry, and take this out on somebody, make somebody responsible… but where can I possibly look he’s growing inside of me…

                There is that one Thing, that overwhelming uncontrollable Thing that I DON’T want to have, but haven’t figured out how not to… God… That’s really it in a nutshell.  How to handle It, how to not feel angry at Him and then immediately after expect Him to listen to my constant begging of His work in our life…  Pray without ceasing… you’ve heard it, you’ve thought about it, considered what that must look like.  Maybe praying in between meals, at meals, when you go to bed, and few extra in the car… I mean, that’s praying a LOT right?? That’s gotta be what is meant by not ceasing…I can assure you, it is not.  Throughout the night, and somehow even while I was sleeping in short intervals, I stayed in constant connection with the Lord.  Every waking moment for the last 8 hours I have prayed without ceasing. Needless to say, I am exhausted and honestly I am at no more peace… yet.

                What to pray for??? I mean, I don’t even understand what is going on so how do I pray? Of course I prayed for it to just go away, to be a mistake, and over and over why, why, why, why...? But I needed more, I needed to feel connected to this situation, to see some glimpse of Sovereignty. This is honestly, because I need to feel like there is a plan right now that I just cannot see… that this is headed somewhere good, I mean what I really need right now is HOPE.  So where did I end up? At Elijah…

                Elijah Jefferson Mundok, that is a beautiful name for a beautiful boy, but we could have had no idea how much we would need his name to ring true to the man of God we had taken his name from.  Elijah was a prophet surrounded in his day with miracles, both by him and for him, yet I think he would hardly call them such as they were merely acts he never doubted would happen.  One instance of this is on Mt Carmel where words similar to these came out of place of certainty and boldness, “Oh Lord God of Abraham, Isaac, and Israel! Let it be known today that you are God in Israel and that I am your servant, and that I have done all these things at your bidding. ANSWER ME, OH LORD, ANSWER ME, that this people may know that you, oh Lord, are God, and that Thou has turned their heart back again.” And the Lord sent down fire that consumed the offering, the wood, the stones, and the earth; and it licked up the water in the trench. When they saw this, all the people attending fell on their faces and cried out “The Lord alone is God!”

                My prayer... “Send down fire Lord, in a fury and vengeance that mine own understanding fails to comprehend.  Consume all that is not right. Literally, as you did with the water in the trench lick up the fluid that should not be here. And just as you brought the clouds of rain to a starving nation of those that had turned away from you leaving only the perfect mark of Your work and faithfulness, God bring our clouds of rain and wash away ALL that is imperfect leaving Your perfect mark on your Baby Eli… Send down fire Lord, Send down Fire!!!!!! I have fallen already before you Lord and I cry out!!!!!”

                No song sounds quite the same right now, no TV show is quite as entertaining, no smile brings quite as much joy, and no laugh can be mustered up…. I don’t know how long this will last but my feeling is that it will be a coping process. And amidst the breakdowns of anger and fury and helplessness, everything must go on, and it will.  But without ceasing… Bring Down Fire LORD…

                                                                          :'(