Deja Vue.

“Challenges are what make life interesting; overcoming them is what makes life meaningful.” ~Lord Byron

As many of you have been reading my blog and staying updated through twitter, facebook and flickr then you’re likely aware that I have been readmitted into the hospital. Total bummer, but we suspected it might happen when the medication prescribed Tuesday didn’t seem to be working. Though I began to feel a little better Wednesday by Thursday it all hit me hard and I realized by Friday I would be calling the doctor. I think back to Thursday and it was a day I tried to rest even more. I let Jason visit Chance without me in the morning and preferred to stay home to rest. Thankfully he took a few photos and videos. Like this one…seems like baby boy was feeling my pain.

Chance - 9 days old

Chance made great progress overnight through Thursday since his shunt was put in place. He was still on a feeding tube and the doctor’s could tell he wanted to eat. I was told by the doctor and Jason that he nearly chewed through his pacifier, even though he’s been on a feeding tube – it’s just not the same and at just 9 days old he’s smart enough to know that. So they let him feed that morning for the first time – and I’ve continued to pump all this time so he got his fair share of “boob juice” (as Jason calls it).

I decided against going in the morning to the NICU because I preferred to go in the evening with the kids. I admit more than one trip leaves me feeling very fatigued and the pain was just too much for me to do more. I was so happy to go in the evening, though I spent only a few brief moments near Chance because it just hurt to much to stand or move around. But I did get to see Hope feed Chance for the first time. Aside from me & the nurses, she was the first to feed her baby brother – something she’s begged to do since the day we found out I was pregnant. It was evident that Chance recognized her presence. He was alert and began to stare at his big sister.

Big sister

Hope's 1st time feeding Chance

Hope's 1st time feeding Chance

We returned to the NICU Friday morning to not only visit Chance but to be apart of an interview with Lauren Rowe of Channel 6 news. They were doing a special that is suppose to air on March 15th covering both Arnold & Winnie Palmer hospitals. As we waited, I admired Chance.

resting

resting

resting

resting

resting

Yes, he slept right through his first media appearance. He was such a good boy though. Lauren Rowe & Dr. Alexander discussed the NICU as well as some of what Chance has been fighting since getting admitted into the NICU.

featured on channel 6

We got to chat with Lauren about our time in the NICU, a lot about Chance, and more about spina bifida and how it has affected him in his first 10 days of life.

channel 6 interview

Chance was assessed by the neurosurgeons after our interview. It was something they were able to capture video of after the interview. They were checking his back for leaking. In the morning it was still leaking a bit and was expected to continue to leak without intervention. They applied durabond in hopes it would help seal the leak. It was applied a time or two and by the night time it seemed to be working. If his back stops leaking we should get to hold him upright Friday and possibly go home Tuesday. If it doesn’t stop leaking it could lead him to another surgery to rework the stitching now that the fluid should be minimal now that he has a shunt in place. He was a cooperative little guy for the neurosurgeons.

Neurosurgeons checking on his back

As the neurosurgeons were working, I got to see the scar for the first time along with the remaining stitches. The blue stitch is where the leak seems to be continuing to happen. His wound looks so awesome now aside from the area where they’re still trying to stop the leaking.

Chance's scar

By the late morning I was in a lot more pain. So as Chance was ready to be fed Jason jumped at the opportunity to feed him for the first time. He’s such a good daddy and spends time talking to him a lot when he’s awake.

Jason's first time feeding Chance.

Jason's first time feeding Chance.

While Jason spent time with Chance I was sent to pump milk for baby boy. Jason stayed and helped the nurse give Chance a bath. He gets pretty fiesty and doesn’t seem to like baths. I’ve heard after wards he enjoys feeling fresh & clean though.

bath

Chance chillin' in the NICU.

DEJA VUE
Yes, as I sit in the hospital bed writing this latest update, I feel like I’m reliving parts of October 2009. Except so much more complex…I now have a baby boy who needs so much of our love and attention. He requires more of my energy and yes…food…I’m up often making sure I provide what he needs. I never imagined back then I’d feel so blessed, yet still so cursed. Yes, the pain never went away and actually got worse since being discharged. I feel miserable. Seems like¬† someone has stabbed me on one side of my stomach and the other side cramps. Sitting or standing is a painful ordeal for me. As is getting in and out of bed. I’m fatigued and have slept a lot more. I’ve had a lot more headaches the last couple of days. 11 days post partum I shouldn’t feel this awful. My doctor has been amazing and doesn’t take any risks of me getting worse. He was the same doctor that admitted me back in October 2009 and assured me he’d help me feel all better and I have the confidence that he’ll do the same this time. I’m on a triple dose of heavy antibiotics that we pray get rid of whatever might be going on. All lab work showed no signs of infection, but I was told some organs like the uterus don’t typically show signs of infection until things get really bad.

The only positive thing is that I am closer to Chance. I have to admit I don’t have much energy to get up to visit him though. These antibiotics make me feel more fatigued. They taste and smell awful. I wouldn’t wish them on my worst enemy…yet, I have confidence they’ll work. Last night I had an allergic reaction to one of the antibiotics – Unasyn. I suspect it has sulfa drugs in it but not sure. All I remember was getting hives and my throat feeling swollen. Pretty scary stuff that brings me to tears when it happens. I should be out of the hospital by Monday morning if these antibiotics work. If they don’t I’m scared to know what is next. The on call doctor today said they’d likely do a CT scan to get a better view of things internally.

PRAYER…
The last few months, but more so the last few weeks, I admit I’ve found myself wondering …”how much do I have to pray?” I feel like I’ve been praying non-stop. I’ve kept the “faith”. I’ve tried to remain “optimistic”. I’ve continued to “believe” things will get better. But now I wonder when. I’ve tried not to “doubt” the plans that are in store for us. I admit the plans still don’t make any sense. I’ve heard people tell me “God won’t give you more than you can handle.”¬† Really, how much more am I expected to endure – I’ve had to go through more in such a short time than most ever go through in their life. Yes, prayer. All the talks of prayer now make me feel more helpless and bring me to tears…I feel like that’s all I’ve done and here I am feeling more weak and helpless…again. Me and my family are completely worn down. I just want to be home…with my baby. With my kids who miss some normalcy. With my love who is feeling just as drained. You guys can do the praying now…and maybe it’ll work. As for me, I shall rest.:(

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March 5, 2011 - 11:33 am

Cecilia - Sending you all the love and strength the world has to offer. Most of us can not even imagine what you are going through, but I know you are a fighter, even though you feel very weak right now, I know you will come out of this stronger than ever. So rest my friend, and soon that fighter will be right back up on her feet. Much love to you and your family.

March 5, 2011 - 11:36 am

Rachel Mayer - I will continue to pray and I am thinking of you and your family all day long every day, Evan prays for Chance every night before dinner out loud, it’s beautiful, God is listening.

March 5, 2011 - 12:27 pm

Joleen - Oh I should not have read this at work I’m in tears wishing I could be there at this moment to help in someway. I know the feeling of helplessness from when justice was in the NICU and Although our experience doesn’t even touch the surface as how hard your experience is. I have prayed for you guys everyday several times aday that all will be ok. You are blessed beyond measure to have the family you do, and yes I believe God won’t give you more than you will handle but sometimes it feels as if your plate is overflowing with trials and saddness. He sees how strong you are just as we all do you and Jason are nothing short of awe inspiring to me. I love you guys more than any words I have or will be able to express. I admire how you guys have held eachother through it all I admire how strong all three of kids are and it’s because of you two they are that strong! So it’s ok I will keep praying u just rest. Love you

March 6, 2011 - 12:19 am

Melissa L. - Amanda,

The beautiful thing about God is that He is our Father. Curl up into His arms and rest. He knows your heart, He hears your cries, and He hears the prayers of those who are holding up you and your families’ arms when you are at the point of utter exhaustion. Rest. And know that you are loved.

Blessings,

Melissa

March 6, 2011 - 9:29 am

Aunt Becky - Rest is good…”He that dwelleth in the secret place of the most High shall abide in the shadow of the Almighty…He shall cover thee with His feathers, and under His wings shalt thou trust.” Psalm 91:1,4.

I can’t say that I know what you’re going through, Amanda, because I don’t. I know it must be excruciatingly difficult, and I imagine you are bone weary from striving to hold onto your faith. Just know this-God knows your heart. He heard your cry the first time it was uttered, and it’s OK to just rest now. I can just see Him, like the beautiful picture from Psalm 91, taking you under this pure white wing, and drawing you close to His heart of love, and saying, “It’s OK, sweetheart, I’ve got everything covered…”

We may never know, here on earth, all the reasons why God allows such painful things to come upon us. God knows, I have asked Him thousands of times why He allowed Mama and Daddy to die so young. I have an answer or two, but even knowing a small portion of God’s plan isn’t enough to take away all the pain and doubts.

Rest, dear Amanda. Cease the striving and just rest… Your spirit will be refreshed. Perhaps to fight another battle, perhaps to celebrate a new victory-who knows? Only God. But I see you when I read Habbakuk 3:17-19:

Although the fig tree shall not blossom,
Neither shall fruit be on the vine;
The labor of the olive shall fail,
And the fields shall yield no meat;
The flock shall be cut off from the fold,
And there shall be no herd in the stalls:
Yet I will rejoice in the Lord,
I will joy in the God of my salvation.
The Lord God is my strength,
And He will make my feet like hinds’ feet,
And He will make me to walk upon mine high places.

And about the praying…you have the most powerful Intercessor of all, never ceasing to make intercession on your behalf! So rest, rest and know that God is.

He is:
Jehovah El Shaddai-God almighty, God all sufficient
Jehovah Jireh-God our provider
Jehovah Rapha-God who heals
Jehovah Shalom-God our peace
Jehovah Shammah-God is there
Jehovah Abir-God is strong
Jehovah El Roi-God who sees
Jehovah Palet-God our deliverer
Jehovah Yeshua-God our savior
Jehovah Eyaluth-God our strength
Jehovah El Berith-God of the covenant
Jehovah T’Sur-God is our rock of defense and shelter

Just to name a few!
Father God, I ask You to take sweet Amanda under Your wing and give her sweet rest. I ask that you bring her comfort in her spirit, and healing to her body. I ask, Lord, that you give her peace in the middle of this storm, and faith to take that next step. I pray, Lord, that You will do as Your word says and encamp around this family who loves you. I ask that you send holy, ministering angels to each person in this family to bring to them the healing and strength that they need to continue. I pray most of all, Lord, for Your peace to settle upon their hearts-the peace that passes all understanding. I thank you, Lord, for the light that shines from Amanda as she shares her life and her heart with all of us. May her testimony of Your love and grace touch hearts that are filled with fear, and give them hope. In Jesus’ name, Amen.

I love you, Amanda. I may stay in the background, quiet, and unobserved, but I follow your story and pray for you often. Maybe someday we’ll have the opportunity to connect and get to know one another. Until then, please know that I am praying, praying, praying….

Aunt Becky

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