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!