Some new pictures

Life has calmed down since the holly, jolly meltdown on Christmas.  The tantrum is over (at least this one), and I feel my perspective and sanity returning.  Well, at least my perspective.  I’m not sure mothers of four have much sanity left. We’ll find out soon enough.

Here are some photos we took of Campbell in front of the Christmas Tree.

Our friends, Matt and Christa, are visiting from IL this week.   Christa updated the blog while we were in the hospital when Campbell was born, for which we are very thankful.  It seems only fitting to share a picture of Miss Campbell with Aunt Christa.

This morning, Joel and I took Campbell to LA for a followup with the neurosurgeon who operated on her spine.  Her back is healing quite nicely and while a bath is out of the question for a couple more weeks, she is in good shape.  The doctor was encouraging and gave us guidance on what symptoms indicate pressure changes within Campbell’s brain.  For now, he did not recommend doing anything with the cyst on her lower spine.  The doctor reviewed her MRI results to confirm that Campbell does not have a Chiari Malformation, a condition where the brain pushes down on the spinal column.

While the three of us were in LA, Matt and Christa took on six little boys, ages seven and under.  Here’s a picture of them before we left this morning.

And here’s what greeted us on our return home.  I love all the little shoes.

One last photo:  Campbell was excited to wear a dress today.  Okay, she wasn’t, but Joel and I were happy to put her in one.  Here she is snoozing away.

I Just Want Normal

Yesterday was a very hard day as having a special needs baby in our family hit home as reality. I threw a pity party (as you will see below), cried for a good part of the day, spent some time with Joel, and went to bed. It’s amazing what some time with a loved one and a little sleep does to change perspectives. This is a difficult post to publish, but it is where we are and where we’ve been.

I just want “normal”.

I just want my daughter to be normal. It sounds awful to say. Even harder to write. But for this moment, it’s true. I want our lives to be normal, or as close to it as possible after having a baby. I want a routine and to have something predictable. I want life to resume as it was, just with an additional little person in it.

I’ve been yelling at the kids, barking orders at them all week. Inside, I feel like the Grinch who stole Christmas and every other day. And I’ve kept it bottle up inside, or tried to, but my frustration keeps spilling out in places I don’t want it to, like at my husband or my kids or visiting family members. I’ve been telling myself the anger is really about them, what they’ve done wrong, but it just isn’t true.

Not until the tears mingled with the water in the shower did I realize why I’ve been so angry, so frustrated. I am mad that my daughter is disabled. Even now, as a baby, she’s different than others and she will be her entire life. In no way that I can see, does this feel fair. She’s so tiny and so precious, and what I see is heartache, pain, and hardship in front of her, and it’s just not fair. I am deep in the throes of grief, and I don’t like it.

I feel guilty knowing how blessed we are and being caught up on this one desire of wanting a regular life for my daughter. Never did I dream I would want something conventional for her. Others have told me about how much we will learn and what a blessing this will be for our family, but right now, it doesn’t matter much. Like a child throwing a fit over one small gift while there are mounds of presents waiting for him to open at the Christmas tree…that is where I am. I want my daughter to be normal, and inside, I’m throwing a royal tantrum.

Like most tantrums, I hope this one will be short-lived. Soon, my heart vision will correct and I will be able to see beyond the moment. I will regain a sense of purpose (and composure, hopefully) and move from victim to advocate. I’m just not quite there yet.

Even in this place, I believe the good is coming though I can’t see it. I have to trust it is because when I hold my sweet girl, with her misshaped head and her little gloves of hands, there is no other place I want to be than right here, as her mother. Her sweet little nuzzle tickles my neck and I see the beginnings of her smile, even though it won’t appear fully for weeks. I look at these things and I know deep in my heart that I want her, just as she is, and that a normal daughter would never do.

Merry Christmas from the Johns

Merry Christmas!!!  While we’ve enjoyed seeing everyone else’s cards, no Christmas cards made it out of the Johns’ house this year.  We were lucky to get a family Christmas photo today.   From our house to yours, we wish you a very Merry Christmas and a Happy New Year!!

We managed to get one photo of all of us (relatively) looking in the direction of the camera.  After several attempts at a “traditional” pose, we pushed our luck with a funny photo.  Unfortunately, not all of our children were amused as we were.

Years from now, we will hear about how we traumatized Kyle by making him wear a mustache for this picture.  Never mind that he tried all of them on earlier in the day and loved every minute.  Oh, to be three again…

In this holiday season, we wish:

The light of the Christmas star to you

The warmth of home and hearth to you

The cheer and good will of friends to you

The hope of a childlike heart to you

The joy of a thousand angels to you

The love of the Son and God’s peace to you

     – Gaelic blessing

At Home

We’ve been home two days with no return to the hospital. Yeah! The boys are out of school and between grandparent visits and Joel getting some time off from work, we are adjusting to life at home with the six of us and are deep in the euphoric baby fog of life with a newborn.

Campbell is adapting quickly to a noisy household of boys while the boys are learning to be gentle and (a little) quieter around their new baby sister.  Well, two of them are.  Colton shrieks with delight when he sees Campbell and tries to touch her head. He is so proud of his sister, but we have to watch him closely because his attempts to “snuggle” her aren’t always reciprocated.  We are thrilled that he is excited about Campbell and hope that he continues to feel the same after he realizes she’s not leaving.

The spot on Campbell’s spine is healing nicely, and with the exception of an occasional dressing change, she seems not to be bothered by it.  From last Saturday’s MRI, the neurosurgeons discovered she has a sack of extra spinal fluid located near the bottom of her spine.  Because the risk of infection from the sore on her spine was so great, they did not address the extra fluid during this surgery but will treat it further down the road.

On a different note, Joel and I have broken our cardinal baby rule…Campbell has been sleeping in our room (and in a swing, none the less.)  When we had our first baby, Joel asked for only one thing – that we not have our children sleep in our room.  So, from day one, our boys have stayed in their own beds in their own room unless we were on vacation or they were sick. Until now.  Ten days old, and she already has Daddy wrapped around her fingers. But it’s paying off as Campbell is sleeping well for us with several longer stretches each night.

As we settle into the week before Christmas, we find ourselves exceptionally grateful for the community that God has given us. I can’t imagine what it would be like to go at this alone, and I am so thankful we don’t have to.  Thank you for being a part of this journey.

Campbell chilling on her special bear play mat

Colton watching over his baby sister

Post Surgery Update

Campbell rocked her surgery yesterday.  In addition to giving her the cutest, little baby butt-tuck, the surgeons also removed the extra cartilage, bone, and tissue on Campbell’s tailbone.  She is resting and is doing quite well.

We are currently planning on going home tomorrow, and we are excited.  We would have gone home today, but Campbell had some breathing issues last night that required intervention. Because of the need for assistance, she met with some specialist today and was under observation.  As long as the night is uneventful, we will be discharged from the PICU sometime tomorrow.

We have had wonderful doctors and nurses the past few days – the nurses especially.  They have been teaching us how to care for Campbell at home.

Today, we met the Thomas family.  Almost two years ago, Summer and JR welcomed their daughter, Riley, who has Apert Syndrome.  What a precious little girl she is.  Riley was having a follow up with one of her doctors who happens to be one of the doctors involved with Campbell’s surgery.  Joel and I look forward to spending some more time with the Thomas family.

Thank you all for your continued prayers.  The past several days have stretched our capacity to handle the unexpected, and it’s comforting to know that others are joining us in praying.

A Change in Plans

Thank you to everyone has prayed for and supported our family during the last few months. The words ” thank you” feel inadequate to convey the deep gratefulness we have for each of you. Your words matter. Your messages matter.  Your prayers especially  matter.

A special thanks to Christa Wright who updated the blog this week.

Late on Thursday, Joel dressed Campbell in her “going home” outfit. We were completely amazed that the doctors released her to go home early, but she was eating and breathing on her own and doing quite well.

So, at 5 pm in LA traffic (we are great at this thing called timing),  we began the journey back home to Orange County to introduce Campbell to her big brothers. They were so excited to meet their baby sister!  Kyle had a little confusion at first that baby Campbell and baby sister are the same person, but he’s figured it out. Christian is enjoying being the biggest brother, and Colton likes to “pet” his sister on the head.

A Change in Plans

Our time at home together was short lived when we noticed yesterday that Campbell had developed a sore on her lower spine. She was born with part of her tailbone detached from her lower back as an appendage. The doctors had recommended an MRI in a month to determine the course of care. Because the spot changed so quickly, Joel called the NICU neurosurgeon in LA. He recommended we go to the Anaheim ER to get it checked out, and after seeing a neurosurgeon there, Campbell was admitted and transferred back to Kaiser Sunset to the PICU unit.

Campbell is currently having an MRI done now and will be intubated and sedated until surgery tomorrow.  The intubation is so that the doctors only have to go in once and will help preserve the tissue in her airway.  The surgery will remove the cartilage, bone, and extra tissue from her spine.  If her spinal cord is tethered to the cartilage and bone, the neurosurgeons will untether it first before removing the bony tissue. There is a chance that the surgery might get pushed as late as Monday afternoon, but most likely, it will be tomorrow morning.

Since she is already sedated, the neurosurgeon also ordered the MRI for her brain so we can get a clear understanding of the effects of Apert on her cranium and brain. The neurosurgeon just popped in with those results that Campbell does not have any hydrocephalus, and she does have all four ventricles. We are still waiting for the spinal results.

Please pray for:

1) Campbell’s health to remain stable throughout the procedures, intubation, and surgery

2) The doctors and nurses treating her and deciding on her course of care that God would give them wisdom and discernment and bless them

3) the results of the MRI, and

4) that Campbell (and Joel and I) would have peace through this process and rest in God’s caring hand

A side note: I felt blessed on Monday when I got the opportunity to meet the doctors and nurses who cared for Campbell and me during the delivery.  It was wonderful to see the faces of those who we have been praying for since this summer.

Homecoming

Campbell, Tiffany Ann and Joel were able to head home today TOGETHER!  I’m shaking my head right now in wonder.  What a miracle.  She has a long road ahead with many surgeries and many difficult challenges but right now, she is home.

So the next phase will be about the Johns family having time together, bonding, and adjusting to a new normal.  Their plan is to rest up for the next round.  The MRI on Campbell’s spine will be next and then a plan to address it will follow.  But for now, we are celebrating and giving thanks for all the works of healing we’ve seen so far.  Thank you, God!

Please keep praying for this family and especially for rest and wisdom.  Pray for Christian, Kyle, and Colton to fall in love with their baby sister and to adjust to their new life.

Lindsay Morton will be coordinating all visits to the family and can direct you to the meal coordinator should you wish to support the family through a meal.  You can contact Lindsay with questions and concerns through cell phone or email.

LIndsay Morton 714-600-0740 or lindzcat@sbcglobal.net

Good night.

Day 3

Hi All,

It was another good day overall.  Today Tiffany Ann and Joel had some great time to bond with and get to know sweet Campbell.  There was a steady stream of doctors, occupational therapists, social workers and others in the room helping, observing, and working with Campbell and Tiffany Ann and Joel.  The occupational therapist switched Campbell’s bottle and she is eating even better now.  She passed her hearing screening with flying colors!  Now we know she can hear Daddy singing to her:)  Sleep apnea problems are borderline so they will continue to monitor that.  Pray that she continues to improve in that area.  

The family will get to go home together at the end of the week. The main thing coming up will be an MRI within the month of her spine and planning a course of action accordingly.  So please pray for the right doctors and teams to bring light to what Campbell needs for her spinal correction.  Pray for wisdom for Joel and TA as they advocate for their daughter’s care and seek to do what is best for her.  

Thank you again for all your prayers and for loving this family so well.  They are feeling it.  

Until tomorrow…

Christa

Daddy and Campbell

Mommy and Campbell