Pages

Saturday, June 28, 2014

Why Me?


There have been multiple, multiple, and did I say MULTIPLE times along our journey with Malachi that I have gotten mad, angry and have asked [OK, yelled, screamed, cried out] 
WHY ME?
WHY US?
WHY OUR FAMILY?
WHY MUST MY BABY SUFFER?
We are good people. We attend and are involved in church, we pray, strive to live our lives righteously, give back. Why would you [God] allow this to happen to us? Many anguished nights I have fallen asleep wondering the why. I know that's a question that I will likely never know an earthly answer to, and I have to be okay with that. I have to be okay with that because me not being okay with it indicates a lack of trust. For if I really trusted Jesus with the life of my child, I would trust every step He has in place. EVERY step. Even if they are steps I don't understand. And so I do. I trust Him because in a time that can cause so much chaos and confusion, He is the constant source of strength and hope I can return to. 

These past 2 weeks have been the ultimate roller coaster. Malachi had the surgery to fully reconnect his gut, and for a few days afterward appeared to be doing good. Emotional highs of his surgery going well and him appearing to progress. Then he started to get sick. Sick as in retaining a lot, and I mean A LOT of fluid. He gained around 3 pounds of FLUID. Imagine as an adult gaining half your body weight in fluid in a matter of days. Every inch of him was swollen. Then his lungs filled with fluid. He was miserably uncomfortable and was placed on an constant IV drip of pain medication and a sedative to keep him as calm as possible. His ventilation requirements had to increase. His oxygen support was at times 80% PLUS. That is incredibly high, room air is only around 21%. The doctors told us there was nothing more they could do. Many times in the last two weeks we have been told he would not make it through this. We went from the emotional high of his gut was FINALLY whole to being told he is likely going to die. My baby. One night last week, I can't remember which as my days all kind of blend together and are a blur, I was praying for my Malachi. On my knees, in my room, crying out from a desperate mother's heart for God to perform another miracle for my baby boy. "God you have brought him this far, keep doing your thing, prove them all wrong!" I demanded God to work, to move. In this prayer session I came back to the "Why Me, him, us" questions. I prayed for an answer. In that moment I felt the voice of the Lord say to me.
 "Jamie.....why not you."
 "why not give this precious, amazing, miracle child to a couple who will glorify my name for every small step in the right direction?"
"why not give this child to a couple who will never stop loving him and believing in him, and Me, even in the face of every doctors worst prognosis."
"why not reveal the deepness of my love for you through Malachi's miraculous birth and life"
"why not choose a couple who will use Malachi's story to impact so many"
"Jamie....why not you?"
Emotion flooded me. I began to thank God for entrusting to LaRon and I one of His most beautiful treasures, I began to thank Him over and over for every single miracle that has been performed in Malachi's life. I began to thank Him for every life my baby boy has touched without even saying a word. I began to thank him for this trial that is deepening our faith in a way few know. I began to thank Him for the opportunity to be a light in that NICU and being able to connect and pray and believe with other parents. 
I BEGAN TO THANK HIM FOR ALL OF THIS. 
Once my perspective changed, my whole outlook on our situation changed. The Lord has heard every prayer for my Malachi. Every body system that has been prayed over, He knows. He has listened and His work has been continuing. I began to simply pray prayers of thanksgiving to Him. Thanking the Lord for Malachi's life, for every second we get with him, for EVERY person (including YOU) who has prayed for him, for every nurse who has fought for him, loved him and comforted him. You could call it coincidence, but when the prayers shifted to me having an attitude of thanksgiving, rather than being a victim. Malachi's life shifted....the fluid began to come off, a new doctor with a new tactic came on for him this week, I was able to hold him, he has steadily improved daily this week. And while I know we are not "out of the woods" yet, I know that God is directing every step, so in every step I will say Thank You.

If you are going through a situation, asking God "why me?" listen for His answer. It may not come in the same why mine came, but if you can shift from the victim mentality to thanking Him, your life will be altered. Your situation will be altered. No matter how horrendous it seems, God can use anything for good.
Anything.

So....
Why Not Me?

Tuesday, June 24, 2014

Incomplete

When people ask how I am today. The first word that pops into my head is "I feel incomplete". I've never said that, but that's how I feel.
The first few months after Malachi was born I kept feeling like "I should still be pregnant" "I should be setting up his room, having a baby shower, preparing for him to come home." It was a definite mourning process to get through all of that. I grieved the loss of all the "typical" pregnancy things that I missed out on. I SERIOUSLY grieved. Then his due date came. And oh that day was hard. So hard. He was due on Father's Day this year. I tried so hard to not let the emotions of that overwhelm me and take away from celebrating the 3 amazing fathers in my life. My Husband, my daddy and my father-in-love(law). I had some moments but overall made it through the day ok.
Now that his due date has passed, I feel that the mourning and grieving for what I lost in that time has lessened. I still feel sadness over missing out on so much but it's definitely less that in was before. Now though, the feeling I am left with is being incomplete. I feel incomplete because now is the time I should be basking in the newborn glow, smelling his hair as we cuddle, being up with him all hours of the night, the pure exhaustion that follows, and figuring out our new life as a family of four. I don't have any of that, I haven't gotten to have any of that. Instead I have become all to familiar with the sounds, sights and smells of the NICU: The constant beeping of monitors, the constant specialists coming in to examine him, the multiple surgeries, being told over and over the outlook does not look good.
How I wish I were having sleepless nights due to the cries of a newborn, but my sleeplessness now is due to anxiety of how my little one is doing. I sleep light in anticipation of my phone ringing. The anxiety is sometimes overwhelming. I could physically sleep for 12 hours, but wake up feeling like I haven't slept a wink.
Life also feels incomplete because, while we are technically a family of 4, I still feel like we are a family of 3 and we are caught in this weird limbo. We haven't been able to fully welcome Malachi into our family, our home and our daily life. He is separated from us. I shy away from taking photos of my family right now because I look at them with sadness because I feel we are incomplete. It is a weird existence. Deuce has yet to meet his baby brother[because of his age he is not allowed into the NICU]. I am thankful for his age, as I feel his age and naivete has sheltered him from all of the stress this has brought on us, but it saddens me that he hasn't gotten to be a big brother yet to Malachi.
My broken heart yearns for the day I will feel complete with my Malachi home.

Sunday, June 22, 2014

Brave.

"You make me Brave, you call me out beyond the shore into the waves. You make me brave, no fear can hinder now the promises you've made."

This CD was given to me around Mother's Day by a dear friend. It has since become my anthem, my song I sing when I don't feel like I can be brave anymore. My hearts cry when everything around us is "bad news". If you are looking for inspired, uplifiting, encouraging, prophetic worship. GET THIS ALBUM. NOW.

We didn't ask for this journey. We were called into it. Unlike callings people feel they have on their life that they need to take action to pursue, we were not given choice. He called us into the waves, the storm, and He has made us brave. 

The dictionary defines brave as: 
Brave; (verb) Enduring or facing danger or pain, with no fear.

The no fear part is hard. The no fear part is hard when the future is uncertain. The no fear part is hard when you are consistently told by medical professionals that it doesn't look good, that your son will not survive. The no fear part is the most difficult part of 'being brave'.

Most days I don't feel brave. Most days I feel weary. I feel scared. I feel helpless watching my baby suffer. 

So what is brave to me? 
Brave to me is waking up daily and facing your child being so sick.
Brave is walking hospital corridors and sitting by his bedside for hours just so he knows I am there.
Brave is asking for help when we need it. (that is hard!)
Brave is having to trust God completely with your child's life. 
Brave is resuming normal life activities and facing the questions head on.

Another line of a song on this CD goes:
 "be still my soul and trust in Him, the waves and wind still know His name"

How amazing is that. The wind and waves still listen to Him. I know that He can heal my Malachi. I know that He is sovereign. I know that despite all we have been through, HE is good. 
And HE is the one who makes me Brave. He is the one who I cling to. He gives me the strength to face each new day. He gives me the endurance to fight for my baby. No matter what the outcome of our situation, I know my Malachi will be Ok. Because as God has made me brave, He makes Malachi brave. Brave to face more than any of us will ever face in our life. Brave to fight daily for his life. Brave to not give up, even when every odd is against him. 

Malachi is my hero. The bravery I see in him comes only from God and is my inspiration.



Monday, June 2, 2014

Sickness.

Sickness. A few weeks ago the doctors began to tell us that our Malachi was very very sick. He was showing signs of infection, started on antibiotics and multiple tests began to be run. As the days went by he began to get worse. The doctors kept saying "We need you to understand how sick your son is". All the tests came back negative, no infection. Relief for a moment, but then the question; why was he sick? We began to ask the doctors this, "you are saying he is sick, but why?" "all the tests have been negative, why is he sick?" After days of asking this and not getting any solid responses, the chief neonatologist finally sat down with LaRon and I and explained what he meant by sick. He meant that our Malachi is sick in the sense that he was born at 25 weeks, he was sick because not only was he born at 25 weeks but he was born with a blocked bowel, he was sick because not only was he born at 25 weeks with a blocked bowel but that bowel perforated when he was 5 days old. He is sick because he has been on TPN (Total Parenteral Nutrition) since birth. TPN, while life sustaining, is also very damaging to the liver. Now because of the nutrition he needs from the TPN, his liver is sick and failing. Because his liver is sick and failing, because of the TPN, he has developed the bad type (not the normal newborn type) of Jaundice as a result of HIGH direct bilirubin levels, he is orange=yellow [Literally] and the whites of his eye are yellowed. Because he has been on the TPN his bones have not yet mineralized which has lead to a diagnosis of osteopenia. Because of the osteopenia he has endured numerous painful fractures in his legs and arms. Because of all of this his body is working extra hard to try and heal, so he has not yet learned to breathe on his own and is still on a ventilator. My baby is sick. I realized when we were asking the doctors why he was sick, we were looking for them to tell us that he had something specific they could cure with a medicine or treatment. This is not the case for my Malachi, this was what we had to come to terms with. His "sickness" was not something that anything specific could heal. He began to reject his feedings, which are still being done through a tube, so they backed off. He's now at 4mls of breastmilk every hour. A baby his size should be at at least 10. The TPN has not been able to be lowered. We were at a place of complete desperation and reliance on God for a miracle. He had a very rough couple of weeks. He began to have apnea(stopping breathing) and bradycardia(heart rate slowing) episodes. "A's and B's" as they're referred to in the NICU. His were bad. One was really bad, I mean REALLY bad. We got "that" phone call. But he pulled through, he is a fighter. The doctors said he was likely getting tired, tired of the fight and the pain. Then a few settings on his ventilator were adjusted, his doctor decided to try a medication for his liver that they didn't think would work but thought "hey let's give it a shot", and the surgeons started a technique of feeding that is fairly uncommon to try and get him optimal nutrition. He stabilized a bit over the past few days. He has had no "A&B" episodes [PRAISE THE LORD], he has tolerated his feedings well [AND HE POOPED THANKS TO THE TECHNIQUE BEING USED WITH HIM], we also got results of his weekly labs today that some of the liver enzymes have gone down along with the lab that indicates if his bones are healing, tomorrow we will see where his direct bilirubin level is and we are praying that is down as well. He has been scheduled for his [hopefully] final gut surgery on Friday. This surgery will reconnect his intestines so his digestive system will be completely intact. We are prayerful and hopeful this will lead to good nutrition for him...which should lead to his liver healing...and his bones strengthening. I know he is in the best hands, because Jesus holds him so tight.

When we finally accepted our Malachi's 'sickness' for what is was an not something that would be fixed overnight. It began to resonate with me. I think so many people are looking for the quick fix and the quick solution in life to make things better. Instead of going on the long road and fixing all the underlying issues, a lot of people want a one-stop solution. Malachi's journey has taught me to look for the causes of the way I am feeling and to deal with those. Only when we can look deeper into ourselves and begin to heal the cause/roots of our 'sickness' can we be on the road to complete and total healing.


Sunday, June 1, 2014

Heartbreak and Thanksgiving..

How are you? - probably the most used question in each of our lives. Its a question that can either be a superficial gesture of greeting or it can be a genuine deeper question of someone deeply wanting know how you are doing. The answers can range the same from superficial to completely loaded.

When you are going through a trial this question ALWAYS feels loaded. You wonder how to answer, you wonder if you need to censor yourself, you wonder if someone is being genuine or being nosy.
Nowadays I answer this mostly with "I'm ok", it's a rare day I answer with an "I'm good". Things are always day to day....

Today, I am sad. Today is June 1st, today marks the beginning of the month Malachi was expected to arrive. Today marks 2 weeks until his due date [June 15]. This past weekend has been full of events, though joyous, that have reminded me that I was supposed to be enormously pregnant right now. I am really feeling the mourning of the loss of the latter half of my pregnancy with Malachi. I am feeling the weight and enormity of our situation. I am feeling heartbreak. So if I were to be completely honest when someone asked how I was, my answer today would be "I am heartbroken."

I am heartbroken because I want to be putting finishing touches on a nursery, not hoping to one day be putting one together.
I am heartbroken because I want to be folding the tiniest of laundry to fill dresser drawers, not washing blankets to take to the NICU so my tiny prince has a piece of home with him.
I am heartbroken because I want to be having contingency plans in place for who will watch Deuce when I go into labor, not planning out the whens and how longs of daily hospital visits.
I am heartbroken that instead of having the VBAC (Vaginal Birth After Cesarean) I wanted so badly, that I had to have an emergency c-section to save mine and my Malachi's life.
I am heartbroken that Deuce won't have the coming to the hospital after the birth to meet his baby brother experience, and that I have had hospital staff tell me he can "meet" Malachi through a window.
I am heartbroken that Friday (May 30) should've been my last day of work, instead I am faced with returning to work while my baby is still in the hospital.
My heart is broken. Broken for everything we lost when Malachi came so early. Broken for the plans we had being crushed. Broken for the future we planned for our family now being so uncertain. Broken for our world completely turned upside down.

In my brokenness though, I am thankful.
I am thankful I am alive!
I am thankful for modern medicine that has kept my Malachi alive!
I am thankful for even the tiniest of miracles in his life!
I am thankful for a husband, who's unwavering faith and strength have kept me going!
I am thankful for the ARMY of people who have surrounded us with support!
I am thankful for my "mat carriers" that have been available to me 24/7!
I am thankful for a God who takes every piece of a broken heart and stitches it back together. It will never be as it was before.
I am thankful for a God who has caught every tear I have cried and who will catch every tear I will cry.

In the midst of my pain and heartbreak, I can still find something to be thankful for.
And a thankful heart is what God asks us to come to him with. So I will start each day thanking him for every blessing in this life and I will continue to thank Him, no matter what heartbreak comes my way!


 photo copyright.jpg
blogger template by envye