Different

Brrr, December! Although it’s cold, it’s finally starting to feel like winter, and this year we got to enjoy a white Christmas- perfect! Last year, Christmas was the “thing I had to get through” before Meghan was born. What a joy it was this year, to be able to celebrate with both of my sweet girls in my arms. Meghan has really enjoyed playing with all her new toys. We were also overwhelmingly blessed by people- some which we have never even met- with notes, and gifts and cards for Meghan, and Addie, some who have been praying for us and with us since the beginning. We are so thankful for the love you have shown our family!

Our December was interesting. The week after we got home from Philadelphia, we attempted a pituitary stimulation test at the request of the endocrinologist. I won’t go into great detail, but suffice it to say that I called off the test when it was clear that it was causing her undue pain and suffering. Unfortunately, there wasn’t a great plan for how they were going to accomplish the test. There has to be a better way to get it done, and when they figure out what that is, we will revisit the idea of completing it. As a medical professional, I can understand needing to gather necessary data to determine the best course of treatment, but as a MOM, I have to protect this little girl from as much as I can. There will be so much in her future that I will not be able to shield her from- physical pain from additional tests and surgeries, and quite possibly emotional pain from situations beyond my control- but that’s on the worry shelf for later. One day at a time. For now, I am doing what I think is right for Meghan. The test can wait. Rounding out the month we also had a follow up with the ophthalmologist. We are continuing to patch her for 30 minutes a day, and it seems to be helping, so we’re following up in a few weeks. I love uneventful appointmentsJ

With Meghan around, there were some new holiday traditions this year. One of which was a Christmas Eve visit to the Orthotist to pick up her SPIO vest (what says holiday like an appointment?!...Joe and I laughed at that one. It sort of defines our new realityJ) It’s pretty nifty, and it’s PINK! We have resumed PT and OT, and right now our big thing is working on sitting, with the help of the vest. She still requires support to hold her head, but with the vest I can almost totally have her balance her trunk on her own. Kids usually work on sitting by putting their arms out for support. Meg won’t bear any weight on her arms yet, so we help her practice until she’s tired. She has her own way of letting us know she’s had enoughJ We’re also in the process of getting her a seat positioner. Between sleeping, napping, and playing, she spends a lot of time on her back. She’s outgrown the bouncy seats, and it will help her to be in a better supported position to begin to relate to her world as upright as possible, while still being able to support her neck. The funny thing about getting this chair is that it bothered me a little. It struck me that this is not something you normally buy…this is specifically for special needs children.  I have known for quite some time that I have a special needs child, but when you get down to the stark reality of it, the idea that things are different….and confront the reality that there might be a part of you that is uncomfortable with being different….well that just makes you think! When I look at Meghan, I see my daughter. I see this sweet, snuggly, charming little girl. I don’t see special needs. I know that she is different, but the only thing that bothers me about that difference is that things will be more difficult for her than for a typical child. I don’t want others to look at her with the discomfort of difference, but rather I long for them to see her through my eyes, and for that matter, to see every special needs child through the eyes of a parent, the eyes of love, and the eyes of Christ, who created each and every one of these lives as precious, sacred, and beautiful. The same eyes that look at each and every one of us declaring that we too are “fearfully and wonderfully made”. I am grateful for Meghan’s abilities, AND her challenges. It’s what makes her, her. There might be some people who won’t understand that in the future, and I think that is what I am afraid of more than anything. When they recognize her difference, will I be able to defend her? Will she be able to defend herself? Will I do the right thing as her mother when faced with someone who might not understand? When I was pregnant, the poem “Welcome to Holland” helped me start to wrap my brain around being Meghan’s mom (see my very first post if you haven’t read it).  There has been some “talk” in the special needs community about whether or not Holland is the right way to describe where we live as special needs parents. My conclusion?  I have no idea where we live, or where we might end up in the future. All I know is that wherever Meghan is, is home.

I am different. I am different now, not because I am a special needs mom, but because I am forgiven. And that, is the only difference that matters.  

“Therefore, if any man is in Christ, he is a new creature: old things have passed away; behold, all things have become new.” 2 Corinthians 5:17

Traveling

What a week! Miss Meghan has officially earned her flying wings, and she did fantastic. Our trip Philadelphia went about as well as we could have hoped, so THANK YOU to everyone who was praying for us while we were there.

We learned a lot about her anatomy: specifically that the two hemivertebrae that are in her cervical spine (neck) are on the same side.The surgeon described it as a stack of blocks, with two wedges inserted in between entire blocks, causing the stack to tilt. Here is a picture to help you understand:

(ourorthopaedics.blogspot.com)

The second vertebrae did not form correctly on one side, and the joint, and possibly the ligament, on that side that holds the first and the second together is not present. That is the part that puts her neck in the category of “unstable”, meaning that abnormal motion in the spine could occur and injure her spinal cord. We learned that she will definitely need surgery to 1) fuse the bones to stabilize her neck and 2) correct the tilt caused by the hemivertebrae. The surgeon said that it is important to correct the tilt as it causes problems in how the brain relates to the world when the eyes are always interpreting the information from a tilted position. Unfortunately, the fusion will significantly restrict the range of motion in her neck. He said it will be a fine balance between her function, and her fusion. This will take place at some point between the ages of 2-3, when her bones are more completely formed, and able to handle the hardware. In the meantime, she may need to wear a brace. We also discussed the hemivertebrae in her thoracic spine (chest). The good news is that the two bones are on opposite sides (like in the first image above). This means that the two wedges may just cancel each other out, and the scoliosis won’t become too severe (which would mean no surgery in her chest!). We will follow this with X rays every few months to monitor the curve. 

Today rounded out our crazy week with her regular pediatrician appointment, and another visit to radiology. She has gained a little weight on her new diet, so we are pretty happy about that! Next was the Upper GI series which was a special XRay with dye of her esophagus and stomach to check for abnormal connections. It wasn't too traumatic, and Praise God, it was NORMAL.  Ah, reliefJ

Our neurosurgeon called this evening to talk about Philadelphia and another expert opinion she was able to get (side note: seriously, this doctor is amazing- she is fighting for Meg as hard as we are), and we were able to come up with a plan. Meghan has another MRI scheduled in February to look at her brain, and entire spine/cord again. We will make a decision at that point as to whether or not she needs to wear a neck brace until she can have surgery, monitor her Chiari Malformation, and also to see if she needs surgery to correct the tethered spinal cord. It’s our “next step” in what we are told is going to be a long road ahead.  

I can see there is a road ahead, but right now the details are fuzzy and in order to travel it I have to focus on the car in front of us. One. Day. At . A. Time. Meghan has a pituitary stimulation test next week that is not going to be particularly pleasant for her, and another eye exam the week after to monitor her strabismus. In the meantime, we are cleared to resume a modified PT/OT routine which means we are getting back to therapy! I am really glad to get back so that we can help Meghan meet her goals, but it definitely adds the stress of more appointments again. With the holidays approaching, it all feels a bit overwhelming (ok, it’s a lot overwhelming….), but  I firmly believe that God created days in 24 hour increments on purpose, and that is all I am meant to handle at one time. (He also gave us Google Calender, and Starbucks for the days when we need a little extra help). SO, at the end of the day, I am rejoicing at all the positive news we got this week, and trusting Him with the plan for the future. After all, He is the one driving the car, keeping my path straight, and providing a priceless insurance policyJ  

Ready for takeoff!

When in Philly, get a cheesesteak....

Playing with Daddy:)

I tried to convince her that it was really "vacation". We went to the pool:)

CHOP has hospital gowns in her color!

The one as well

Hello, DecemberJ This month is unbelievably busy for us with Meghan’s appointments, but thankfully there is Christmas merriment tucked in places along the way to make the month a little sweeter. Our tree and lights are up, and the joy of watching Addie dance around the living room with excitement over decorating the tree was priceless. You only get one three year old Christmas, and I am soaking it up!

Tomorrow we leave for Philadelphia to see 2 different doctors about Meghan’s spine. There are moments when I still cannot believe that we are traveling to a different state to see doctors, but with as complicated as her issues are, it is where the experts are, and so there we will go. We have been continuing to pray for wisdom and answers, and trying not to be fearful about what is to come. Her spinal anatomy is complicated, curved, and incompletely formed. It’s not just one issue, but many. There is tremendous fear that she will suffer significant disability, or become paralyzed because the ligaments and bones in her neck are considered unstable. I desperately want to know what we can do for her, and just for someone to at least have a plan of how we can take care of her going forward. Last night, I was praying, seeking, and asking the Lord to go before us on this trip that we hope brings these answers. Here is one of the first things I read:

Consider what God has done:

Who can straighten

    what he has made crooked?

When times are good, be happy;

    but when times are bad, consider this:

God has made the one

    as well as the other.

Therefore, no one can discover

    anything about their future.

Ecclesiastes 7:13-14

Ok.... So we may get answers, and we may not. I have learned that knowledge doesn't necessarily bring peace. The answer may very well be “wait and see”, and at least we know how to do that.  I could drive myself nuts worrying about the future- but we don't have that yet, and we can't possibly know what it is. Good or bad, He has made the one as well as the other, and He is sovereign. Whatever is in store, we can be certain that it was His will, and that brings me a lot of comfort. He set aside this time for us to go, and provided a way. All we have is today, and today I have the privilege of having Meghan. So Philly, here we come.

A "little" update

I have realized that it’s been quite a while since my last update, and honestly I was waiting until we had some “answers” to share. Unfortunately we still don’t have many answers.  Meghan has been in the midst of a few different workups to figure out why she hasn't gained any weight in 2 months- she is a peanut! At 12 lbs, 9 oz, she's fallen off the growth chart. The endocrinologist decided after the second round of blood work that she still needs to undergo a stimulation test, to check and see how well the pituitary gland is functioning. It’s a 4 hour test that involves giving her a medication and then testing her blood at different intervals. It’s on the books next month, in addition to an upper GI series (a special XRay with dye that shows her esophagus and stomach).  This was ordered after we were referred to a gastroenterologist, who ordered a fecal fat test to check for malabsorption (it was 72 hours of, ahem, “dedicated parenting”), and had us meet with a dietitian again. We are now adding oils to her baby food, corn syrup to her fruits, and giving her the high calorie formula, plus nursing. The upper GI series is to check and see whether or not she may have an undiagnosed tracheo-esophageal fistula (an abnormal connection between the food pipe, and the wind pipe), which can sometimes lead to poor weight gain. It is one possibility in kids with VACTERL association, and her GI tract is probably the only thing in her little body that hasn't been imaged at some point (I’m not kidding…) so he wanted to rule that out as well. As we were leaving the office of the gastro doc, with our stack of instructions and orders, I happened to glance down at the diagnoses listed as the reason for testing. They were all words I had seen before, until one: FAILURE TO THRIVE. I don’t know why that has hit me so hard, but it has. Mentally, that is a tough one to take as a parent. Even in doing everything to the best of your ability as a parent, that diagnosis can make you feel like you failed. That combined with the fact that her therapy is on hold until we get more answers about her neck makes it feel like we are falling behind. However, I am consciously choosing not to focus on the diagnosis, or the time line, but on the gummy smiles, the giggles, and the BABBLING (yes, she’s starting to talk!!!!) that is coming from this precious little person that remind me that she is in fact thriving in her own way. So far, we've learned that she speaks fluent hippo…

Pure, sweet joy, right?? 

The next month will hopefully bring more answers, as we travel to Philadelphia for some expert opinions about her spine. We are praying in the meantime, that her shunt continues to function well, since there has been some significant swelling again lately. If she’s on your prayer list, please pray for her, and for wisdom and direction for us and her physicians. We know that HE already knows what the answers will be, for better or for worse, and there is SO much peace in that….

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

Running Inspired

Whew! What a busy couple of weeks it’s been. We’ve learned a lot about Miss Meghan here lately, so here goes…

Meghan had a follow up with her ophthalmologist, who said she has a 6^th nerve palsy which is causing her strabismus. As this can sometimes be a sign of increased pressure in her brain we are watching her closely and following up with her neurosurgeon and the ophthalmologist again here in a couple weeks. We also met with her neurologist. Since we have been concerned for some time that Meghan has not been gaining weight appropriately- even despite a high calorie formula, solids, and breastmilk- he took a closer look at her MRI. Her pituitary gland looked abnormal to him, and coupled with some other structural abnormalities in her brain he is concerned that she may have septo-optic dysplasia- a disorder that has a spectrum of effects, but in Meghan’s case we may not know the full spectrum until she is older. This new information prompted a referral to a pediatric endocrinologist. We met with him last week, and had some blood drawn. Yesterday we found out that her growth hormone level was indeed low, and today we headed back to the hospital for more blood to be drawn. This next test will tell us whether or not we will start her on growth hormone replacement. We have also been able to discuss her CT results with a few different doctors, and we are told that Meghan has something called Klippel-Feil Syndrome. It describes some of what developed abnormally in her cervical spine. You can read more about that here:  http://www.ninds.nih.gov/disorders/klippel_feil/klippel_feil.htm . We were able to schedule our appointment with the neurosurgeon at Shriners in early December, and I am very hopeful that he will be able to better understand her specific anatomy, and come up with a plan for monitoring her condition.

This past weekend, I ran the Columbus Half Marathon in Meghan’s honor, with a team of ladies that love, support, and pray for our sweet girl regularly. This year, the marathon partnered with Nationwide Childrens Hospital. Each mile featured a “patient champion”, and it just so happened that mile 7 was a little guy with hydrocephalus like Meghan. You can read more about the patient champions here:  http://www.nationwidechildrens.org/marathon-miracle-mile-patients . Their presence along the course made it one of the most inspiring things I have ever done. I have no idea what Meghan’s future holds. I do not know what her mobility will be like as she grows. We know now that since she has Klippel-Feil Syndrome it is very likely she will have to have a fusion of her cervical spine (neck) in order to protect her spinal cord, which will limit her ability to turn her head. I ran this year for her- for everything she has endured in her 7 months, for the joy she brings me daily, and for whatever her future will hold. I paced myself differently this race- maneuvering to high five as many people as possible, talk to other participants, and at mile 7 you can bet I stopped running altogether to give Toby and his family a hug. It was certainly not my best time- but I am totally ok with that.  Meghan has taught me to pace life differently these days. I run with endurance and strength on loan from God which sustains me through the physical and mental demands of having a child with special needs, but also with JOY, and lightness and a peace that cannot be explained. I am running inspired, because I race for Meghan Grace.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us. Hebrews 12:1

D-Day

There are certain days and moments in your life that you will never forget- those days that are so firmly written in your heart and mind that you remember in intricate detail where you were, what you were wearing, the weather….October 7^th 2011 was the day we had our anatomy ultrasound for Meghan one of those days. It was one of those brilliant clear and warm fall days, so warm that Joe and I had taken Addie to the park to play since we had some time before our appointment. For a short time, we lived in the moment, relishing the anticipation of the day. Soon we found ourselves in the exam room, the ultrasound technician taking so many images that Addie began to get fidgety and I started to get that sinking feeling in my stomach that accompanies days such as these. It wasn’t long before anticipation turned to anguish as our perinatologist gave us the official diagnosis of severe ventriculomegaly. The conversation that followed included words like “poor prognosis”, and a statement that I never wanted to have to consider-“there is the option for termination…”.  Even if I didn’t quite understand all that severe ventriculomegaly entailed, I certainly began to understand the severity when that was presented as an option. While it might have been an option for some, it wasn’t for us, so we left the office with a plan for follow up with the fetal care coordinator. That afternoon Joe and I researched, prayed, and tried to come to terms with what it all meant. It was that afternoon that Joe and I chose Psalm 139 as Meghan’s verse:

“For you created my inmost being, you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made, your works are wonderful I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. “ Psalm 139: 13-16.

Joe and I clung to that verse in the following weeks as we came to terms with having a child with special needs. We have held tightly to the belief that the Lord knew exactly what he was doing when he gave us Meghan Grace. While we have known about Meghan’s scoliosis for a while now, last week Meghan had a CT of her brain and spine and we learned that it is quite a bit more complicated than we expected. Our neurosurgeon said that her brain is filling in nicely and as far as her shunt is concerned we are in a great place. However, the results of her spine images were a little concerning, and led her to refer us to another neurosurgeon at Shriners Hospital in Philadelphia who specializes in complicated congenital abnormalities of the cervical spine. We are still awaiting information from that physician. Her therapies have been put on hold until we hear from the specialist.

One year later, the same verse we prayed for her from the beginning has new meaning to us as we reflect on the fact that indeed her frame was not hidden from His eyes. October 7th, 2012 we are in the midst of more uncertainty- we never thought we would be dealing with something else besides her hydrocephalus. There are still moments when I see other babies her age doing much more than she can do and there is pain that comes from a place I can’t explain, and I am sometimes afraid to admit. I am grateful though that one year later, with lots of prayer, we've learned how to live with earthly uncertainty while we fix our eyes on what we know is certain: The Lord gave us Meghan exactly as she was meant to be. She is a light, and a joy, and the gift of her life is so very precious to me. 

Sisters

The last days of summer are edging away, which always gives me the urge to start cleaning out the summer stuff, which this year for us is really spring stuff that never got done, and summer stuff that we just kept up withJ The last 2 weeks has been AWESOME! Miss Meghan has cut her first tooth, and once that was through we have had hands down, the happiest kiddo on the planet. This little girl hardly stops smiling and I think it’s because she finally, finally, feels good. Her therapists keep pushing her to improve, and in two week’s time she has learned to eat her toes, and roll to her left side! Meghan has a developmental pediatrician- one that specializes in kids with special needs. They see her less often than the regular pediatrician, and make specialized recommendations for her care. She has always been on the small side, but lately she has actually lost weight despite a good appetite, so we’ve added a bottle a day of a high calorie formula to see if we can boost her weight gain. The doctor also recommended that she be fitted for a SPIO vest, which stands for Stabilizing Pressure Input Orthosis. Her trunk muscle tone is low, and she doesn’t bear weight on her arms yet, so her doc wants her to start wearing the vest so that she is able to start sitting up and relating to her world from a more upright position.  We are also headed to Main Campus next week for a sedated CT scan of her entire spine. This should give us more information than the MRI as to her bony abnormalities, and if there are no stability issues in her cervical spine, she will also get a “torticollis collar”.  This will help her hold her head up, and get her neck muscles strong enough to compensate for the hemivertebrae that make her neck tilt. Meghan is on her way to becoming highly accessorized!

Speaking of accessories, The Asher Foundation has honored Meghan and some of her “hydro sisters” by creating a collection in their honor to help benefit special needs children, some of them with hydrocephalus like Meghan. We are very excited to see how God is using their ministry, and just as excited to be a part of it! Check out the Hydro Girls collection at www.theasherfoundation.org.

For nearly a year, this blog has been about Meghan and her progress. Saturday was the Pediatric Hydrocephalus Foundation’s Sibling Appreciation Day. Adding another little person to anyone’s family is an adjustment, and adding a child with special needs to a family is very difficult for the older siblings. The day inspired me to give some serious credit to my sweet Addison, who loves her little sister in a way that makes me gooey and proud. She doesn’t quite understand why Meghan goes to therapy, and so many doctor’s appointments, but she never complains. When she hugs Meghan, she tries to get her entire self around her with simultaneous gentleness and ferocity of love. With as independent and strong as this child is, I am certain that she will be the kind of big sister that will stand up for Meghan, celebrate with her, and be the kind of friend only a sister can be. I believe in the “plan”, and I am glad He gave us Addie to be Meghan’s big sister. Her future will be different because of Meghan, but it will undoubtedly be brighter….

“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.” Jeremiah 29:11

 A major thank you to Sarah Marie Photography for capturing these images for us! 

Happy Half-Birthday!

We’re 6 weeks post- shunt revision, and finally, things seem to be looking upJ The swelling around her shunt has improved, and it seems to be working the way it should be for now. There is constant uncertainty with that little device! We’re in the midst of many follow ups- ENT/audiology (they want to fit her for a hearing aid in a couple months), neurosurgery (we’re scheduled for a CT scan of her spine this month),  orthopedics (more Xray’s at a year),  and we see her kidney doctor and developmental pediatrician this month as well. The specialist appointments give us lots of information, but it’s the weekly PT/OT that she gets that is becoming the “meat and potatoes” of her care. When we first started out, I thought therapy was a proactive approach to helping her meet milestones. I’ve realized lately that it will be much much more for her, and is probably the most important thing we do for her on a daily basis- besides giving her lots of kisses of course!

It is very hard to believe that 6 months ago, we were preparing to welcome sweet Meghan in to the world in just a few hours. The past 6 months have been filled with challenges, adjustments, and plenty of hard days, but also with joy, love, and a heavenly change in perspective. Oh my, how much our family has grown in these months. Meghan’s up to nearly 13 pounds of sweetness, and the sometimes imperceptible changes that take place in a baby as they grow have become celebrated joys for us as we watch her with a different awareness. It is admittedly difficult not to compare our daughters at the same ages- at 6 months old Addie was starting to crawl! Meghan cannot yet lift her head off the floor, or roll over….. but here’s what she CAN do:  follow us with her eyes, turn her head all the way to the left, reach for a toy, shake a rattle, blow raspberries, smile, LAUGH, arch her back and stomp her foot when she’s frustrated, splash in her bathtub, grab her toes- now even with her left hand!, burp loudly, kick her feet to play with a toy, melt your heart when she touches your face, and make me one thankful mommy. She would undoubtedly have been different from Addison in many ways, even if she was born without the neurologic challenge of hydrocephalus, or the scoliosis that further challenges her mobility. The 6 month mark is bittersweet in ways. The hope that she would be developmentally normal has faded into the reality that this sweet little girl will decidedly have to fight to accomplish things that come easy for other children. That makes my heart ache in a way I cannot describe. But it’s contrasted with absolute gratitude for the miracle that her life is, for the love she has brought to our family, and for how the Lord has used her grow me in ways I would have never imagined. Her life comes with a list of miracles, of answered prayers, of ways that He has shown Himself to be faithful, and of some unanswered prayers that I can only reconcile to His sovereignty. Happy Half-Birthday Meggy Moo.....I cannot wait to see what else I am able to add to the list at one year.

“When they see among them their children, the work of my hands,

they will keep my name holy; they will acknowledge the holiness of the Holy One of Jacob,

and will stand in awe of the God of Israel.” Isaiah 29:23

The Tap Dance

The last two weeks I have felt like we are on a crazy hydro roller coaster. When we got home from the hospital, Meghan was doing great apart from pain after her surgery. However, her shunt was working so well that she drained very quickly and we soon found ourselves in the Neurosurgeons office turning up the shunt setting. After that, we had a few of the best days we've ever had with Meghan- the real Meghan- when she feels good. Over the few days, her fontanelle continued to sink and we thought we were ok. Then overnight, it had raised back up, the swelling around the valve (the external part of the shunt) increased to the point where it was worse than it was before her surgery, and once again, she seemed a little off. At our 2 week follow up after surgery, our surgeon decided to tap the shunt again- this involves taking some fluid from inside the shunt through her skin. Since only one of the cultures from the operating room had come back positive, initially they thought it was contamination. Now with her symptoms, we decided to rule out infection as a cause of the swelling. She also decided to drain the excess fluid from around the valve, and wrap her head to see if we could get the swelling to stay down. A brain ultrasound, a couple needles, and a sweaty baby later, we headed home with our head wrapped Meghan in tow.

48 hours later, Meghan's cultures are still negative (thank you God!). Our surgeon called us today and after we talked for awhile, we decided that the plan for now is to turn her shunt back down again on Monday, and see if that resolves her behavior issues, and hopefully the swelling around the shunt. If not, we may end up back in surgery to replace the valve with a different kind that might help seal off the hole in her skull a little better. At this point, we aren't sure why this keeps happening, and it may have something to do with the fact that apart from her hydrocephalus, it appears that we may be dealing with another type of brain malformation as well, causing the pressures to be different than they would be with straightforward hydrocephalus.

I can honestly say the only thing holding me together right now is my family, my dear friends, and a lot of prayer. Even our doctor said we need to take things one day at a time. There is a significant amount of uncertainty that builds when for many babies, this is a "once and done" procedure- at least for a while- and we just want to get to a place where she feels good enough to start making some serious developmental strides! Since the surgery, she has learned to grab her toes- despite the fact that she cannot roll over, or even hold her head up on her own yet. We know this little girl is fighting through this, and we want so badly for her to continue to progress to whatever her capabilities will be. The back and forth can be a little discouraging at times.

Joe and I were talking on the way to the hospital the other day, speculating how different our lives would be if Meghan were like typical babies. We both agreed that while we wish every child could be born healthy, we feel our lives are different, but indeed so much better because of Meghan. She adds a certain weight to life. The kind that puts sorrows and hardships into perspective, gives us a great compassion for children (and their parents) with special needs, and makes us appreciate every day in a way we otherwise would not. It also means that when we feel joy, we feel it times a thousand- so much so that as they say, you are able to dance in the rain. We have hope because we serve an awesome God. So despite the uncertainty, we wait, and put our hope in the one who is writing her story, and ours.

We wait in hope for the Lord;he is our help and our shield. In him our hearts rejoice, for we trust in his holy name.  

May your unfailing love be with us, Lord, even as we put our hope in you.  

Psalm 33:20-22

Toes!!

Working on my reach...

This is what pitiful looks like. 

Miles of Smiles

Home Sweet Home!! Words cannot describe how good it is to be back home. It was a whirlwind 4 days. Although I had a gut feeling that this was "coming", it didn't quite prepare me for the reality of it actually happening. Even worse, nothing could prepare Meghan for what was ahead. It is a particular form of anguish that I had not yet experienced as a mother- watching this sweet little girl go through hours of painful but necessary procedures, hunger, and discomforting touch. To not be able to protect her from that is heartbreaking, and to not be able to explain it to her was so much worse. All we could do was love her through it, and in return, when she wasn’t too uncomfortable, she was smiling. It brings tears to my eyes to think of all she went through, still smiling.

We were discharged yesterday, the day after her surgery. By that night she was smiling, and the next morning I tell you what, it was so obvious she felt better than she did even before the surgery! She could hardly stop smiling. Her fontanelle felt so much better- it hadn’t been so soft in weeks. She nursed contentedly, and slept peacefully. Today I had to go back to work, but Joe said he had one of the best days he has ever had with her- she was so happy! Her poor little head looks pretty sad- a new incision, a very swollen shunt site, shaved hair, hair I had to cut to get the dressing off, and to top it all off, she has these little circular bald spots left by the fiducial markers from the MRI (removed while she was still asleep after surgery thank goodness!)- but all of that fades away when this little girl grinsJ

The new information we have from the MRI was disappointing to hear, however I am glad that we know sooner rather than later.  Her Chiari malformation is a type I, where part of her cerebellum is lower than it should be. It’s the “best” kind to have, and her neurosurgeon thinks that if we correct the hydrocephalus we may see that it resolves on its own. The tethered cord is something that we will look at when Meghan gets closer to a year old, with another MRI. Dr. R. thinks we will likely have to correct it surgically. It involves removing a piece of her spine, and cutting the part of the end of the spinal cord that is connected abnormally to the bone. It is necessary though to prevent neurological damage as she grows, and the cord stretches. As for her underlying brain issue- it’s hard to say. It may be something called colpocephaly. We’ll know more as time goes on, and her brain grows in more as the fluid from the hydrocephalus decreases.

I’m at the point though of ceasing to care- that might sound strange, but medical mommy, and Meghan’s mommy are two different people. All of her diagnoses aside, she is pure, sweet joy, and I am so lucky to be her mother. I am grateful for so many blessings today- family and friends that loved us all through this week, and answered prayer in countless ways.  I am not sure I would have ever learned to truly appreciate the faithfulness, and goodness of God without Meghan. We are home, she is better, and TODAY was a very good day.

“And you will say in that day: “Give thanks to the Lord, call upon his name, make known his deeds among the peoples, proclaim that his name is exalted. “Sing praises to the Lord, for he has done gloriously; let this be made known in all the earth.”

Isaiah 12:4-5

I know this was on the last post, but she looks so stunning in blue polyester I couldn't resist...
Smiling before the MRI...

Smiling while waiting for a bed...

Smiling after surgery...

Smiling the day after surgery....

Smiling this morning. Pure joy:) 

Surgery Plan

Forgive me if this is brief, and makes little sense, but Meghan did not quite understand the "NPO after midnight" deal.

Yesterday was a very, very hard day on both of us. She had to endure at least 9 needlesticks, 2 IV's, not being fed before her MRI, and general anesthesia. She did well, and came out of it without any problems. We found out just some preliminary information from the MRI- she has something called a Chiari Malformation, and a fatty filum that looks like a tethered cord. Both may require further surgery. She also said that her brain doesn't look like purely hydrocephalic either. There may be an underlying issue in how it is forming. We don't have any more information yet as she was still waiting for the official reading.

We were supposed to be first in the OR today, but there was an emergency so we are waiting for her new 12:00 OR time. I will try and update as soon as she is done and we know she is well.

Thank you everyone for praying for us. This means more to us than words can express.

Complications, and Courage.

What a day. Today was the kind of day that has me appreciating even more the couple of great weeks we had with Meghan.  Just like that, we’re headed for the hospital tomorrow, this time to be admitted. When we turned her shunt setting back down several weeks ago, Meghan’s symptoms went away for the most part. We all expected that her fontanelle’s would sink in again, and that the swelling around her shunt would go back down. They never did, but she was acting better- smiling, laughing, improving her skills- we thought that maybe it would just take some time. The last few days she has been a little off- almost hard to put your finger on, and everyone knows babies have off days. Yesterday her shunt was really swollen so I emailed the neurosurgeon and she scheduled us for another Ultrasound- this time of both her brain and her abdomen, to check and see if the fluid was absorbing in her belly as well (this could be another cause of shunt malfunction- both ends have to work correctly!). Unfortunately, the ultrasound showed that her ventricles had increased in size from the ultrasound she had last month- a sign of shunt failure. There is also something “weird” in her ventricle by the shunt catheter. It’s difficult to tell what it is, and some possibilities might be infectious material or blood. So in the office today, Dr. R. took some of the fluid off of her shunt with a needle and sent it for analysis. After we got home, she called and said that the white blood cell count was high, and the glucose levels were low- indicating an infection, however they didn’t see any bacteria when they looked at it under the microscope. So our plan now is to be admitted to the hospital tomorrow morning, have the MRI done under anesthesia, and have a consult with Infectious Disease. Dr. R. says that the shunt will have to be replaced and it will just be a matter of when and how it happens. Right now Meghan is scheduled for surgery Friday morning for a shunt revision, but it’s hinging on what the MRI shows. We should know more tomorrow after the MRI.

This is the part that gets hard. It was scary when she had her first surgery at 5 days old, and believe me this is not any easier.  It is impossible for me as a mother, (and I am sure ANY mother facing a health issue with their child) to understand why this is happening. Joe reminded me on the drive home today that God already knew this was going to happen, and it is His plan for Meghan, and for us. Although I do not know what will happen yet in the next couple of days, I do know that He has shown Himself to be faithful and will carry her through. “Trust in the Lord, and lean not on your own understanding” (Proverbs 3:5) I am claiming that truth today.

We are praying for strength, protection, and wisdom for everyone involved in her care, and thank everyone who is praying right along with us.

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."(Joshua 1:9)

My sweet girls!

Why we were worried...

Being a major trooper for her ultrasound, and this was AFTER they did her brain!

A bit of a stretch.

So we’re halfway through July- the month of follow ups with nearly every specialist Meghan has. Joe and I both agreed we’ll be glad when this month is over. Appointments are not always easy on Meghan, and multiple appointments in one day are challenging. We had 5 appointments in 3 days this week, and we are working on recovery! I’m a bit of a believer in babies liking their schedules and the familiarity of home. Meghan seems to agree, although she has been a major little trooper through all of this.

The month started off with a visit to her regular pediatrician for her 4 month appointment. She’s up to 11 lbs 3oz, which despite the adorable little rolls on her thighs is not quite up to where they want her. We are trialing some different nursing techniques to increase weight gain for a couple weeks to see if that makes a difference.  I have heard that many VACTERL kids remain on the smaller side, and she is still gaining weight and burps like a college pro so I am not too worriedJ

At our visit to her ophthalmologist, he diagnosed her with pseudoesotropia- a fancy name for a condition in which her eyes themselves are aligned correctly, but they appear to cross due to her asymmetric face. Her eyes are a little weak, but he said that it’s because sight-wise she’s still developmentally like a 2 month old.  He also said that because of the severity of her hydrocephalus, her smile is a miracle, and that he got chills when she smiled at him. He mentioned that he took those things for granted with his kids, and that he knows how important that is for Meghan. If he only knew how much my own heart is filled with joy every time she smiles at me…

Meghan was also seen by her geneticist. All of her initial genetic testing came back completely normal, but the doctor is convinced it’s a genetic issue because of everything that is affected. We were offered complete Exome mapping. This is where they take Joe’s blood, my blood, and Meghan’s and compare all of our genetic material to look for things that might not have been translated correctly when those first cells were formed. We are still in discussion mode about having it done. Not only could it potentially identify what’s wrong, there is no guarantee that it would, and it might also identify a gene that Joe or I have for a disease that could- or could not- develop in the future. There are definitely some pro’s and con’s to mull over.

Lastly we saw her neurologist. He was very pleased with her cognitively, but noticed the tremor that she has in her right hand. Apparently that is an unusual finding “for hydrocephalus” and he wants to expedite her MRI and schedule it this month instead of next month. She is delayed in her gross motor skills, but he said that between her head size and the scoliosis in her neck and upper back that it is not surprising. This makes PT and OT that much more important! We have some great therapists that work with Meghan, and we know they will help her reach her full potential. The MRI will be of her brain and entire spine. Although it will have to be done under sedation (not something I’m looking forward to), I am hopeful that it will show us how her brain is growing, and give us a clearer picture of what is wrong with her spine. We should find out next week when that will be.

The last couple of weeks, in addition to becoming a super-smiley, giggly girl, she has started to actually reach for toys. It’s an action mostly from her elbow, and not the smooth motions that typical babies have, but she is DOING it. This little girl, with her thin rim of brain tissue, and her musculoskeletal limitations is knocking my socks off. I cannot begin to express what it feels like to be her mom in these moments. I am flat on my face grateful to God for answered prayer. After weeks of PT/OT and stretching at home, she has begun to relax the muscles of her upper body enough to start to learn. It is definitely a stretch for her, and you can see the concentration it takes. Watching her start to accomplish these things makes the way in which I have been required to stretch my own self physically and emotionally as I learn how to be her mom seem insignificant. I don’t know what’s ahead for her, and that is so totally ok, because I am really grateful for what God has allowed her to do today.

"May the God of hope fill you with all JOY and peace in believing, so that by the power of the Holy Spirit you may abound in HOPE." Romans 15:13

Working my core! And my neck! And totally rocking my hairdo!

I can DO it!

This is what 3 appointments in one day looks like...

And this, is pure JOY.

Entertaining Angels

June is almost gone, and here I am just getting around to updating things. For good reason I suppose- we've been busy! Meghan has been to weekly PT/OT appointments to help work on her milestones. Every week the therapists point out something different she is doing, and we are so very encouraged! She's bringing toys to her mouth, opening her hands more, and her head control is improving. She still can't lift up her head when she is on her belly, but we keep working on it. Right now she is very careful about moving her neck. Our therapists think that in addition to it being difficult because of her scoliosis and torticollis, that she is guarding because of fear. This week we started something called kinesiotape, which puts slight tension on the skin and muscle to help her bring her head to midline. It is also supposed to help her become aware of the sensation in that part of her neck, and it looks rather like a bandaid. I certainly noticed a difference over the last 2 days in how she will  hold her head a little straighter! Interesting stuff...

We've also been back and forth to the neurosurgeon since our last post. After we turned the shunt down again (increased the amount of fluid coming out), Meghan's eyes got much better- she was able to look around after just 24 hours. However her fontanelles, head circumference, and sutures didn't change. She had a really fussy week last week, and that coupled with the other things that didn't change with the faster setting we were a little concerned. Last Thursday I took her back to the hospital to have her looked at again. This happened to be the first trip to main campus with just Meghan and I. Usually I have had company. When you travel an hour both ways, and have to navigate the city that is the main campus of Cleveland Clinic with an infant in tow, it's nice to have an extra set of hands! At the appointment, our neurosurgeon thought that perhaps her brain had begun to fill in around the catheter and that where the tip was surrounded by fluid before, it may have become partially blocked by brain tissue causing an intermittent occlusion of the catheter, and may be an explanation for Meghan's symptoms. This would mean surgery to re-position the catheter. So she sent us down to pediatric radiology for a brain Ultrasound. At this point, I'm terrified, but I have no choice other than to hold it together and be Meghan's mom. We were directed to wait in the long hallway of a basement that houses the radiology department, with some chairs that serve as the "waiting area". Meghan was starting to get fussy, so I swaddled her up and started our "walk" (if your a parent, you know what I'm talking about!) The apprehension began to set in, and I started to feel very alone in that space. I made a quick phone call to Joe, and started praying for my little girl. There was an older woman waiting at the other end of the hall, and before I knew it, this perfect stranger had her arms around me and was hugging me asking what my baby's name was, and could she pray for her. I was so very grateful for her comfort! Seconds later she was called back for her test, and I waited our turn while Meghan snoozed. The Ultrasound went well, only a little protesting, and we went back up to see the surgeon.

Dr. R came out, and said her Ultrasound looked great. The pressures in her head were normal, her brain is beginning to fill in, and her corpus callosum (the part of the brain that connects the left and right hemispheres) which was significantly compressed at birth is no longer "smushed". My jaw was nearly on the floor. Not only did we not have to go for surgery, we got amazing news about her brain to boot! It was kind of a hallelujah moment!

As I was driving home I had a while to reflect on what had just happened. Since I was by myself with the baby, I had no choice than to lean on the Lord for strength when faced with fear. Some people might call that sweet woman's presence a coincidence, but I choose to believe otherwise. I felt that in that moment, it was the very present love of Jesus that was shown in exactly what I needed- a hug, and a prayer. I learned that I may have to be stronger than I want to be at times, but that I don't have to rely on my own strength. He is always there.

 "And do not forget kindness to strangers, for by this, some who, while they were unaware, were worthy to receive Angels" Hebrews 13:2

So very grateful for these moments...

New this week: SHE LAUGHS!!!

Kinesiotape in Action...and for those of you that don't know what a shunt looks like, here it is. There is also a stunning hairdo in this picture...

Life with a shunt

Well we were hoping to make it a month without a trip to the neurosurgeon, but today we found ourselves back in the office again. At our last visit, her shunt was turned up again which slowed down the amount of fluid coming off of her brain. We were happy to see that the swelling that she had had around the shunt only came back a little and we thought we were ok. Unfortunately, over the past 3 days I noticed her head circumference was increasing, and her fontanelles (soft spots) were getting firmer. Yesterday the fontanelles started bulging, and this morning her eyes began to “sunset” and she was having trouble keeping them aligned (common for some babies, but not something that she has had trouble with before). These are all signs that too much pressure is building up in her brain. A quick phone call and we were back in the office for another adjustment. It appears that she cannot tolerate the slower setting, so for now we are sticking with the faster one. Although she was not quite “herself” the last couple days, she handled the increased pressure fairly well, even smiling for me in the waiting roomJ

Today was a huge reality check for me. Thanks to much prayer, Meghan has done amazingly well these past 13 weeks of life! We have settled her firmly into our family, and despite weekly therapy appointments that “remind” you that everything is not 100% normal, I have come to a place where it at least feels normal. Today was a “gut check”. Life with a shunt is not normal, and sometimes, it is scary. I am so much more thankful today for all the mundane moments we share at home, and even more thankful for the limitless grace, strength and peace that is extended to me by my Savior. The only way I can continue to walk forward without fear, is because I know He has already been there, and is leading me on.

O Lord, you have searched me and you know me.

You know when I sit and when I rise;

you perceive my thoughts from afar.

You discern my going out and my lying down;

you are familiar with all my ways.

Before a word is on my tongue

you know it completely, O Lord.

You hem me in—behind and before;

you have laid your hand upon me.

Birthday Presence

This week was a busy one in our house! Meghan and Addison were dedicated at church on Sunday which was a really special time for our family. Amidst the joy of the moment, our sweet Meghan treated our pastor to agiant noisy baby poop mid-prayer. Of this we are sure- there is nothing wrong with her bowels! It was a memorable moment to say the leastJ

We had a follow up with Meghan’s neurosurgeon yesterday. Since the swelling around Meghan’s shunt has been gone for a couple of weeks, she changed her shunt setting again, and slowed the flow of fluid a little bit. Hopefully enough scar tissue has formed around the hole that she will be able to tolerate this slower setting without it swelling up again. The goal is to slow it again next month, so that we don’t risk bleeding in her brain from pulling too much fluid off too quickly. Dr. R said that we will plan to get a follow up MRI of her brain when she is 5-6 months old to see how things are progressing. So,continue to pray that her brain is allowed to fill back in as all that fluid is removed (slowlyJ).

Today we saw the orthopedic surgeon again. PT was on hold for a week since we have noticed a popping noise in Meghan’s neck when we are holding her or doing her physical therapy. Since she has the vertebrae in her neck that only formed on one side, we were a little concerned that there was something more serious going on. Thankfully, he said that because the popping is so “dramatic”, if it were a bony problem she would probably be having severe neurologic symptoms to accompany the popping, which she isn’t, so he thinks it’s two muscles riding over each other that is creating the pop. Hopefully as we continue to stretch her neck, that will lessen. When we do an MRI, Meghan will have to be sedated, so we will wait and get both an MRI of her brain and cervical spine when she goes at 5-6 months. Until then, on with PT!

In addition to our trip to the neurosurgeon yesterday, we celebrated my birthday. There’s nothing like a milestone to remind you of where you are in your life, and where you have come from. Last year at this time, I had no idea that I would have another baby, a blog, and a different job in a year. So much about life can change in such a defined amount of time. The day started off a little rough- sleep deprived calamity commenced as soon as I hit the floor. Somebody’s peeing on things they shouldn’t be, diaper change, vases of fresh flowers are being knocked on the ground, another diaper change,breakfast dishes are everywhere, a FOX ate my new flip flops, I’m busyguilt-tripping myself that I didn’t get up earlier to work out, and agh! I have to get in the shower because we have to get downtown to see the neurosurgeon (more pee, another diaper change). I was starting to work myself into an it’s-my-birthday pity party when I just said Lord! Help! I was quickly reminded that the only reason I’m frustrated was because I had completely selfish expectations of how my morning would go. This life is no longer completely about me, and it’s not even all about my kids. It’s about Him. It’s about laying aside the part of me that wants to be first, and putting Him first. Suddenly, my perspective shifts,and I became intensely grateful for the chaos, because if I wasn’t blessed with my family, fresh flowers, a place in the country that is home to many forms of wildlife, and the gift of just going to visit the doctor instead of being inthe hospital on my birthday, I wouldn’t have any of those things to start my day off with. I may fail miserably at having a good attitude all the time, but that’s ok. I’ll ask for forgiveness, again, and He loves me enough to remind me,again, that “every good and perfect gift comes from the Lord”. So happy birthday to me…I have a couple of prettygreat gifts this year.