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. 

A picture is worth...

I'm pretty excited to share these pictures! To have the opportunity to have them done, and for Meghan to be healthy enough to participate is a gift beyond words right now. A dear friend and photographer came to the NICU to take some pictures of Meghan when she was a couple days old, but with everything going on, we never got to have a newborn family session. SO, at 7 weeks old, Meghan made her official debut in some family photos with everyone in them:) A big thank you to Rachel Marie Photography for her talent, and the very sweet way she was able to capture our family, Meghan, and the essence of my Addie (who barely held still long enough for a picture!). She had some really fun outfits and props! Head on over to her blog to see more, and to see some of the amazing work she does: www.rachelmariephotography.com/blog

Miss M. has been doing great! We're rolling with Physical Therapy now, and starting Occupational Therapy and Speech therapy this week. The therapist we are working with is wonderful, and as it turns out she is the one that saw Meghan in the NICU, and works closely with her neurologist. She gave us some great exercises to do with her, and in just a couple weeks we can see her improving! We're able to get her neck to relax past her midline, and where are arms have been held close to her body, I can now raise up her arm on the right, and the left with only a little complaining:) Her 2 month pediatrician follow up went well, and she's up to 9lbs, 6oz. 20th percentile....she's a little peanut!

This week....drumroll.....NO DOCTORS APPOINTMENTS! Woo hoo! Just therapy:) Next week we go back to the neurosurgeon, and if all is well we may not have any appointments for a couple weeks. Thank you everyone for praying for her, and please continue to pray that everyone stays healthy and Meghan keeps progressing well with no shunt complications!

Something to smile about!

Whoa! Two updates in a week:) For everyone out there that isn't friends with me on Facebook, here is a picture of what Miss Meghan started doing this week. 

Any mother rejoices over her child's first smiles. It's the stuff that makes all the first sleepless nights so worth it as you see the little person you have been caring for communicate their happiness. Having this child has taught me not to take a smile for granted. In the moments when she smiles, absolutely nothing else matters. This week, we are celebrating smiles!! Happy 8 weeks old today Meghan:)

Lessons from Bathtime

I can hardly believe it’s been 2 weeks since my last post…the days pass quickly!

Updatesfirst…

We’ve been watching the swelling around Meghan’s shunt. A week after the last reprogramming, the fluid started to build up again. I checked in with the neurosurgeon and Meghan had a shunt series (XRay) done to make sure everything was still connected. It was, and her surgeon still feels that it is fluid leaking around the entrance point that will hopefully resolve with time as scartissue builds up around the hole.

We went backto the audiologist and had her hearing re-tested, which confirmed the hearing loss in her left ear. They diagnosed her with Auditory Neuropathy SpectrumDisorder (ANSD).  It seems that the external ear structures and her cochlea are functioning properly, but the connection from the nerve to the brain is either not working, or is sending an incorrect message that she is not interpreting as sound. The doctor said that she may actually be receiving “sound” but that the brain is not “hearing” it.It will be clearer as she grows and we can test her in different ways. In the meantime, we are getting set up with an ear nose and throat doctor, and speech therapist. Meghan also visited the ophthalmologist who saw her in the NICU, and again her optic nerves look“beautiful”. A sigh of reliefJ

Last week we saw the orthopedic doctor who had some new information. He was able to see her cervical spine from the brain MRI she had at birth. Meghan has two hemivertebrae (vertebrae that only formed on one side) in her neck as well as in her upperback. This is contributing to her torticollis. For now, we are going to do physical therapy (she starts tomorrow!), and follow up with more XRay’s in 3months to see how the angles of the spine change as she grows. He wasn’t able to tell us if she will need surgery or not, but he did say that in this case multiple abnormalities are better than one.

The last fewweeks have gone so fast! I have already found myself back at work this week.That was something I wasn’t sure I was ready for, but it was nice to get back to “life”. It is also hard to believe that next week, Meghan will be 2 months old. We are getting to know her, and watch as little pieces of her development unfold. Lately she has been tracking objects really well with her eyes- she loves to watch the mobile that is on her changing table. Living with the “unknown”is becoming a little more familiar, a little more normal. We have a routine of sorts, and she is now just such a part of our family that I can almost forget what we’ve been through, and what might be ahead. Then I’m bathing her, talking to her, washing her tiny cheeks and chin, and my soapy fingers course over the length of tubing that goes down her neck, chest, and belly. My mother’s heart hurts so badly for her- it screams that its not fair, that it’s not supposed to be there, and that she shouldn’t have to go through all of this. Then she looks up at me, and I’m reminded that born in a different country, she wouldn’t have survived, and perhaps in a different situation, she wouldn’t have made it here in the first place. This precious gift has been given to us by a sovereign God,who knew all of her days before one of them came to be.  I’m reminded that as much as I hurt for her, He hurts just as much. So instead of crying, I take a deep breath, dry her off, put on her jammies and snuggle her close…just the way He knew I would, because He knew all along that I would be her mother. 

 You havesearched me, LORD,

   and you know me.

You know whenI sit and when I rise;

   you perceive my thoughts from afar.

 You discern my going out and my lying down;

   you arefamiliar with all my ways.

 Before a word is on my tongue

   you, LORD, know it completely.

 You hem me in behind and before,

   and you lay your hand upon me……For youcreated her inmost being;

   you knit her together in my womb.

 I praise you because she is fearfully and wonderfully made;

   your works are wonderful,

   I know that full well.

 Her frame was not hidden from you

   when she was made in the secret place,

   when she was woven together in the depths ofthe earth.

 Your eyes saw her unformed body;

   allthe days ordained for US were written in your book

   before one ofthem came to be.

Excerpts fromPsalm 139

Personalization and emphasis mine:)

A New Normal

Let me preface this post by saying- I'm tired! So if I make absolutely no sense at all, I hope you'll forgive meJ I had a good friend describe having an infant is like a chronic sleep deprivation experiment…I tend to agree wholeheartedly. The really good thing is that it is temporary, and as they say "this too shall pass". It's a strange mix of the desire for time to speed up to get past this stage, and also to slow down as we know it passes much more quickly than it should. The other day we were looking at pictures of Addison when she was this little. It was a stark reminder of how quickly they turn from babies into little kids.
Since my last update, we've had several follow up appointments for Meghan. At her one month appointment, she had gained a whopping one pound since birth! She was also diagnosed with torticollis. We had noticed that she always held her head a certain way, and is unable to bring her right ear to her shoulder. The pediatrician made the diagnosis official and we are headed for physical therapy. We had also noticed some swelling around her shunt that did not alleviate with positioning. The neurosurgeon felt that fluid may be leaking around the entrance point through the skull and they turned the shunt setting back down to increase how much fluid is taken off. Thankfully by this morning we noticed that it is pretty much back to normal. I am really grateful for that programmable shunt valve!
Today we spent the day at main campus again (we're really getting to know our way around that place) for audiology and neurology appointments. Meghan failed the newborn hearing screen in her left ear so we were referred for further testing. Miss M did a great job of cooperating during the test, but unfortunately it looks like she has hearing loss in the left ear. We go back next week for more extensive testing to confirm, but they suspect a sensorineural type of loss. The right side was re-tested as well and passed with flying colors, so we are very happy with that! We then headed over to her neurology appointment. At this point he was most concerned with getting her into physical therapy to alleviate the torticollis, but also to help her begin to meet her developmental milestones. Because her head is larger than the average infants, she has to try twice as hard to lift her head and hasn't quite got the hang of it yet. He also noticed a small amount of "spasticity" which could correlate to the very thin amount of white matter he noted on her MRI, but this is something that develops the most rapidly during the first 2 years of life- so there is a good chance that now that the pressure from the fluid is being relieved the white matter may start to develop more as she grows. It's a new thing for us to pray forJ

Now for the good stuff! We had a great Easter with the family, and even managed to get everyone dressed and to church on timeJ A while ago we weren't even certain that we would be home from the hospital by now, so to be able to enjoy the day was an extra blessing. In the midst of a lifestyle we didn't expect, we are settling into a "new normal"…a normal that includes a lot more appointments to get to, a house that is decidedly messier than this mom would like, and a normal that makes PB&J a new dietary staple. I do smell like "old milk" most of the time as Addie has, and will, tell you, but it is all worth it when I get to kiss the sweet cheeks that are getting slowly chubbier every day. I might be tired, but I'm happy, because that's normal….

  

Addie (left) and Meghan at 6 weeks….they sure are sisters! 

Easter Sunday!

Its All About Perspective

Meghan is 4 weeks old today, and it’s funny how adding ababy to your life puts things in perspective!Before she was here, I was tired if I only got 6 hours of sleep…now if I get 3consecutive hours I feel like I could run a marathon (for at least an houranyway!), and feeling frustrated because you can’t get the laundry done, dinnercooked, spend quality time with your toddler, and balance the checkbook all inone day turns into feeling an amazing sense of accomplishment if you can take ashower AND get any of the aforementioned tasks completed in between feedingsJ

This week was the only week for a while with no doctorsappointments, but we have spent some time on the phone with them. Thegeneticist that saw Meghan in the hospital called to discuss the results of hergenetic testing. To our surprise, it all came back completely normal. We werehappy to hear that, however it means that we don’t have an explanation for whythis happened. We got the official “diagnosis” of VACTERL-H association (see http://www.webmd.com/brain/vacterl-with-hydrocephalusfor more details) because she has 4 features of the disorder- vertebral,cardiac, renal, and hydrocephalus. The frustrating part is that since VACTERLis so rare, little is known about the cause. Some sources say it’s genetic, andsome postulate an environmental cause. Either way, there still aren’t answers,and I am not a big fan of mysteries unless they are sandwiched between 2hardcover pages. It also means that we are excluded from a therapy that we hadhoped would help Meghan- giving her back her umbilical cord stem cells in hopethat it would repair damaged brain tissue. We heard today from Duke that theydon’t think it will help in her case. It’s frustrating to feel like the onething that we thought we could “do” for her had been taken away as an option,but I had been praying for a clear answer as to whether or not we shouldproceed with such an experimental treatment, and I suppose I got it- it justwasn’t the answer I was hoping for.

Its easy to allow myself to get caught up in the “medical”part of all of this, when all I really want to do is just be caught up in thesweet face of this little girl. Its hard to hear about all the things that are“wrong” with Meghan- especially when I look at her and see my baby. Besides theshunt, you would never know she was born with what the world calls defects. Iwas reminded the other day that the verse we claimed for her from thebeginning- that she is fearfully andwonderfully made- is still the unchanging truth.- because who she is is nother physical body, but the sweet spirit that lives inside. We are all imperfectin one way or another. It’s the reason we all require forgiveness. Sometimes wedon’t get the answer to prayer that we want, but I can choose change my perspective and align it with His, focusingon what I can do for her- care for her, support her, work with her physical bodyto help her grow, take each day and celebrate accomplishments no matter howsmall, and love her with everything I am. 

“And be not conformed to this world: but be transformed bythe renewing of your mind, that you may prove what is that good, and acceptable, andperfect, will of God”

Romans12:2