Beautiful Eyes

Two beautiful blue eyes stare back at me.  Two.  Not two for a few seconds until one drifts away.  But the whole time.  And any time!  I look at her 21 month old face and amazed when I see two bright eyes looking straight at me.  Every time.

I still remember the first time I saw one eye looking out to the side.  MaryAnne was only 2 months old and I panicked.   Outwardly maybe no one noticed my reaction, but I panicked.  My heart started racing, my breathing came in quick spurts. My brain started working as fast as it could – what did I know about a lazy eye? Would it became better or worse over time? Can it be fixed? Would she have to wear a patch on her eye? And why had I not noticed this before? What kind of mother am I that I only just noticed this!?

Before strabismus surgery - you can see the eyes are not pointed the same direction

Before strabismus surgery – you can see the eyes are not pointed the same direction

After MaryAnne’s initial surgery (a year ago!) to correct her craniosynostosis, her eye had improved a lot.  But it still drifted.  This most recent surgery to correct the strabismus (drifting eye) was a completely different experience than the last several surgeries.  Surgery took less than a half an hour compared to the 2-3 hour surgeries previously.  She hadn’t cried when they pulled her away in her little wagon to enter the OR, and when she was wheeled into the recovery room after surgery she was sitting up in bed, drinking out of a sippy cup as if nothing was wrong.  As if she hadn’t just had surgery on her eyes.

Now I wonder.  What does the world look like to her? Can you imagine not having stereo-vision?  Imagine looking at landscape whether it be a city or a hillside or rolling fields.  Now replace that with a picture of that scene, as if now you were looking at a poster of the scene instead. You lose all concept of depth and distance.  Or try walking around with one eye covered.  That is how MaryAnne lived her life.  But she didn’t know anything different.  When looking at things close, her eyes would work together and she had no problem putting toys in small holes and the like.  But when her eyes were drawn to things farther away, there was disconnect.  Only one eye focused.  Now both eyes are working together. Has the world become bigger? Grander?

I am so thankful for the prayer warriors in MaryAnne’s life.  Do you know what the Ophthalmologist said at MaryAnne’s pre-op appointment? He said, “Wow, she is healing really well.”  She has no scar tissue from the surgery.  None!  The doctor can see her eyes start to drift and then pull back in.  Her brain is taking control of that drifting eye!  What a wonderful sign of God’s grace and power to heal MaryAnne in such a way.

 

MaryAnne one week after her cranial vault reconstruction surgery.

MaryAnne one week after her cranial vault reconstruction surgery.

One year after cranial vault reconstruction surgery!

One year after cranial vault reconstruction surgery!

Praise be to God.

~~~
Mindy

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Unexpected surgeries

It was supposed to be an ordinary clinic visit to confirm that MaryAnne had an infection and needed to be on antibiotics.  Oral antibiotics.  Not admitted to the hospital and put on IV antibiotics. Not headed to the operating room.   But that is where we were.  Looking at another stay at the hospital, another surgery.

Let me back up a few days.  MaryAnne had an operation to remove her distractor and was discharged in less than 24 hours.  A week later everything seemed to be healing well.  Then one day soon after MaryAnne pulled her head away when I tried washing her hair.  And Monday morning, only 11 days after the removal surgery I woke up to find a white, swollen abscess under the incision.  The first reaction of the clinic, upon receiving an emailed picture of the abscess was that it was surgical fluid that had collected there.  But soon after the office called me back, as a consultation with another plastic surgeon led them to make an appointment for us the next morning.

Now me, MaryAnne and Abigail (7 years old) are sitting in the clinic waiting room waiting.  Waiting for a hospital room to become available so that MaryAnne could be immediately put on IV antibiotics.  Dr. Jamie did not want to let us go home since it was over a 30 minute drive and getting MaryAnne on antibiotics was critical.  After two hours of waiting, the doctor relented and let us go, allowing me to pack for the several-day hospital stay, and to return Abigail home. We were not even home yet when Jamie called to let me know that a room was ready for us.  I quickly packed and returned with MaryAnne to the hospital.

After the first operation to clean out the abscess it seemed everything was to go through the difficult route, rather than the easier one.  Instead of an IV in MaryAnne’s hand, it was in her foot.  The anesthesiologist tried several times to get one started in her hand, but did not succeed. This meant that she was not allowed to walk.  Instead of being able to keep MaryAnne entertained by carrying her around the hospital floors, we were confined to our room because of the unknown bacteria that caused the infection.  And instead of a reduction in pain from infection removed, the pain seemed more because the area was packed with gauze (to promote healing from the outside in) and the incision left open. This caused pain for MaryAnne, especially as the head wrap started to slip and the incision area was bumped, rubbed, or even touched.

All smiles for the camera!

All smiles for the camera!

And here is where I felt God’s mercy. I had to watch MaryAnne nearly every second to make sure that IV stayed where it was supposed to.  And I also tried to entertain my active 15 month old child in that small hospital room while thwarting her attempts to walk. There was no rest for me. No letting MaryAnne play by herself.  Yet God continually gave me strength to get through every circumstance.

I read a devotional on God’s mercy that really encouraged me.  It was based on the story of the widow who fed Elijah and her son during the three year famine. (1 Kings 17:8-16)  This woman had been prepared to make herself and son their last meal when Elijah appeared asking for food. But Elijah told her she would not run out of flour and oil and she believed.  I imagine that every morning she would measure out the flour needed and see how little was left.  Yet she was not discouraged, nor fearful.  Her flour and oil never ran out. Everyday God supplied her with what she needed.

I felt like my jar of flour was being emptied in those few days.  I would look at the clock and wonder how it could only be 8am?  How would I last the day? I felt that I was near the end of my endurance. Yet God did not allow me to run empty.  He continually gave me what I needed to get through the next minutes and hours.

“You will see the sinner’s hope perish, for he trusts in himself; you will see the proud Pharisee’s confidence crumble, for he builds his hope upon the sand; you will even see your own plans blown apart, but you will discover that your daily needs are amply supplied…You might spend the wealth of the nations, but you can never exhaust the infinite mercies of God.” (Quote from God’s Infinite Mercies. Read the rest here.)

I watched MaryAnne go through so much in the next three days.  The first IV was dislodged, the result was her foot was swollen and sore, along with half her leg as a consequence of the antibiotics going into the tissue instead of the vein.  Next, I held her down while she screamed as another IV was unsuccessfully attempted several times.  In God’s mercy the helicopter team of nurses were available to come and successfully get an IV started. The next day I handed MaryAnne over to an OR nurse yet again and heard her screams as she was carried away from me.  I held her and soothed her when she woke up from yet another surgery.  I consoled her in her frustration and anger at being confined to a small area when all she wanted to do was run around.  And God’s mercies flowed over me.  I know I could never have done it on my own strength.  It was exhausting both physically and emotionally.  And God supplied my needs. Every time. Praise be to God.

~~~~~
Mindy

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Two weeks after being discharged.

 

Surgery and Beyond

It was probably the hardest thing I’ve ever had to do. I had to place my precious 9 month old daughter in the arms of the nurse and watch her walk into the operating room. I just wanted to run after the nurse, knowing MaryAnne would probably be scared.  No, she would definitely be scared – she doesn’t even like to go to her grandparents that she sees once a week.  I needed to be there to comfort her, to let her know it was going to be okay.  But I couldn’t. And my heart nearly broke imagining her fear.

All I could do was pray and wait.

MaryAnne was taken into the OR at 7:45am that morning. We spent the two previous hours getting paperwork done, meeting with various medical personnel, and entertaining MaryAnne. The great thing about the surgery being performed at a Children’s hospital, is they accommodate well to little ones. MaryAnne had great fun being pulled around in the little hippo-wagon.

So happy!

So happy!

9:30am rolled around and our neurosurgeon came to find us, since I hadn’t noticed our vibrating beeper had gone off. He told us that the surgery couldn’t be going better, MaryAnne was stable, currently getting a blood transfusion, and his part of the surgery was over. The plastic surgeon was now doing her part. At 10:30 the plastic surgeon let us know that MaryAnne was now in the recovery room. Now we wait some more. We were told that if they didn’t call us back into the recovery room, it meant MaryAnne hadn’t woken up yet.

At this point, I felt such relief. It was over. MaryAnne had done great and we could move forward. And now I sensed my exhaustion creeping in. I felt such peace.  Even knowing that the next days could be anything but peaceful.  Two hours later, at 12:30pm I was finally allowed to see MaryAnne and a half an hour later she was ready to be transferred to a regular room!

Sweet little girl

Sweet little girl

The next several days were a blur. I was so busy trying to keep MaryAnne from tugging on all her cords – she had a drain coming out of the right side of her head, three leads on her chest, catheter, oxygen monitor on her big toe and an IV in each foot. The day after surgery MaryAnne was trying to crawl and stand already and it was a full time job trying to keep cords from tangling and keeping her occupied in the small area that her cords allowed.

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Gradually the various cords were removed and MaryAnne loved being able to get out of her room and take a stroll around the hospital floor. Her eyes did swell shut, but she was amazingly cheerful. Four days after surgery MaryAnne was ready to go home.

The transition to post-surgery has been difficult. Before the surgery things that would have not been an issue, now are a concern. MaryAnne’s head is extremely sensitive and the smallest pressure to her head causes tears.  So tables, chairs, doorways, all those normal things that she could bump into while crawling around become dangers to her head. MaryAnne also wants my constant attention and I end up carrying her around for a large portion the day. And sleeping has been rough. Really rough. We’re talking about waking up every hour and hard to console. But healing is taking place and our post-op appointments with both physicians has been very encouraging.

2 Corinthians 12:9-10 was one passage that came to mind during these difficult days:

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

When I am tired, exhausted, beaten down, who do I run to but the one, true and holy God.  He who can carry all my burdens and be my strength when I have none.  So I continue to thank and praise God even in my hardship.

One week after surgery!

One week after surgery!

And I sing:

“Be thou my vision, O Lord of my heart;
naught be all else to me, save that thou art –
thou my best thought, by day or by night;
waking or sleeping, thy presence my light.”

Surgery is just days away!

6 days before original surgery date:

Click. The phone went silent. I just stood there. Deflated. Like a balloon that had a leak. The air slowly streamed out. And suddenly my brain was racing, trying to think of all the people I had to call, all the appointments I would have to change, schedules that needed rearrangement. Because of one word: rescheduled. I admit, my brain had become a bit fuzzy after the man on the phone told me the surgery was rescheduled. But I managed to take away from the conversation that MaryAnne’s neurosurgeon had an unexpected, mandatory . . . thing, come up. And he’d be gone. For three weeks. So we must wait a few weeks longer.

God designed this for our good. “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28.  Long before MaryAnne was even born God knew that this surgery would be rescheduled. He planned it. The unexpected mandatory thing that came up, was not unexpected to Him. It was His will. And as I look at the positives and negatives of this change I can see the good God worked.

The original date was not good timing for my husband. We sell Christian homeschool material, and the end of August is the beginning of the school year. It is our busiest time of the entire year. And most stressful. The end of September is much slower, less stressful, and overall better.

It is not a negative to have MaryAnne wait another month for the surgery. The neurosurgeon initially told us he likes to do the surgery between the age of 6 months and a year. MaryAnne will be just days shy of 10 months on the new surgery date. So she is still within that time frame. And MaryAnne does not seem to be in any pain or discomfort. She is a very cheerful and active girl!

Fun at the beach!

Fun at the beach!

As a friend so wisely told me, this just means we have four more weeks to pray for MaryAnne and the surgery. Four more weeks to bring her to the throne of God and ask that He show his power and amaze the doctors with a perfect surgery and rapid recovery. I am reminded of Matthew 7:11 “If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!” So I pray and ask.

As for the negatives. Emotionally I was ready.  I was ready for it to be over. And the only other negative was that my mom had to reschedule her travel plans out here – plane tickets, time off of work, and all that goes along with it.

So now it is quite apparent that God knows better than me. Which shouldn’t surprise me.

Now we are six days away from the new surgery date. And God’s will is being done. I still find tears streaming down my cheeks when I think of what she will endure, but I know the pain she will endure will be far less than living the rest of her life with uncorrected craniosynostosis. The procedure itself fills me with dread, but I know her future will be superior after it is done. A future that will be a normal, healthy life.

I find myself singing one of my kids Sunday School songs:

My God is so great, so strong and so mighty,
There’s nothing my God cannot do!

Who better to trust than the One who can do all things? I feel joy bubbling up knowing that He is watching over my sweet MaryAnne.  Thy will be done.

Some of MaryAnne's support team.

Some of MaryAnne’s support team.

Craniosynostosis

My husband and I waited in the pristine exam room with our sweet 6 month old daughter. The neurosurgeon came in and introduced himself, glancing briefly at MaryAnne just waking in my arms. (He knew what was wrong just by looking at her.) He sat down and asked us if we knew what was going on. I repeated what my pediatrician had told me: that she may have a suture in her skull that had fused early. He had a grimace-type smile on his face “Yeah,” he drew out the word, “that’s what it is.”

Breathe, I told myself. Don’t burst into tears. It isn’t cancer. It isn’t life-threatening. Breathe. Breathe.

Coronal craniosynostosis. The suture from the middle of her skull, down to her left ear had fused, possibly even before she was born. So let’s go back. Three symptoms appeared in the six short months of my daughter’s life.

Symptom #1: Following the first few days of MaryAnne’s birth I noticed her left eye socket was bigger than the other. I thought this was genetic.

Symptom #2: Around 2 months, I noticed MaryAnne’s left eye tended to drift outward. I thought it was just a lazy eye. Now I know it is because the eye was being pulled out as the skull was not growing properly.

Symptom #3: MaryAnne’s left forehead was flat – her eyebrow was not even noticeable. As she grew older, the forehead became indented. It changed so slowly I again thought this was genetic.

So how did we end up seeing a neurosurgeon? I had changed pediatricians because I was dissatisfied with the previous one at MaryAnne’s 2 month check-up. After rescheduling her 4 month check-up because of sickness, she was seen just before she was six months. I mentioned the drifting eye, and the doctor spent a lot of time comparing the eyes and studying them. I then mentioned the indented forehead, and he immediately said she should be seen by a neurosurgeon, that it could be because of a fusion of a skull suture.

And it was.

MaryAnne will have to endure a 3-4 hour surgery, with a 3-5 day hospital stay afterwards. But then she will be able to lead a normal, healthy life, as our neurosurgeon likes to say. Without the surgery, the left side of MaryAnne’s head would not grow appropriately, the right side over-growing to compensate. Developmental delays could occur and her left eye would be stretched outward to look more and more like a slit. I continue to thank God for advanced medical procedures that allow what seems like such a dangerous procedure to seem non-hazardous.

Precious MaryAnne

Precious MaryAnne

Those first few weeks after the diagnosis, I couldn’t even think about it without crying. I would rock MaryAnne to sleep with tears streaming down my cheeks, knowing what she would have to undergo at such a young age. This was a testing time for me. Who was I going to trust? Myself? Would my anxiety and worry help MaryAnne at all?

Luke 12:25, “And which of you by being anxious can add a single hour to his span of life?”

God is in control. He knew this would happen with MaryAnne. He knows how it will end. His will, not mine, shall be done. And He did not leave me. He is right beside me, upholding me, comforting me, being my everything.

Philippians 4:6-7 “do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

So I rest in Him, petitioning Him every step of the way. And He has granted me his perfect peace.  The chorus of my favorite song right now accurately describes my feelings:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.