"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

Thursday, March 29, 2012

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”

Thursday, March 22, 2012

Happy Spring!

Happy Spring! Isn't the weather amazing? It has been so awesome to be able to have the windows open, enjoy the fresh air, and get outside a little bit. Mostly we don't venture farther than the driveway, or the lake to feed the fish with Addie, but today we made the trek to Main Campus again to see Meghan's neurosurgeon. Her fontanelles have become sunken- a good thing in Meghan's case- but the sutures in her skull have started to override, which is not so good. Since babies are born with bones in the skull that aren't fused yet, if they override they are at risk for fusing too early. So, we made an adjustment on her shunt setting again (slowing down the drainage) and we return in 2 weeks to see how things are progressing. In the meantime we watch her fontanelles, her head circumference, and how she's acting to make sure things are going well. Dr. R. says her case is a little tricky since she has hydrocephalus, but she also has colpocephaly (an abnormal formation of the brain tissue) which she thinks may have helped the pressure in her head reach an "equilibrium" of sorts at some point before she was born. It's all a "best guess" hypothesis, but it makes sense to us. She said it's one reason why her head might not have gotten as large as some other babies with hydro. Whatever the case, it doesn't matter! We are just so glad she's doing so well.

While we were there, we stopped back up in the NICU to visit another couple who's son was born the same day as Meghan. He was in the isolette across from us and we got to know them a bit over the days that we were there. We were really happy to hear he is making great progress! Please add this sweet little guy and his mom and dad to your prayers...

Lastly, I have to say thank you to all our great friends and church family that have brought us meals over the last 2 weeks! It is a huge help and a blessing to us while we adjust to life with a newborn again. Also, I'm fairly certain that in my sleep deprived state I would most certainly burn or ruin everything I would attempt to cook:)

I'll leave you with a pictures of Addie giving Meghan "knuckles" yesterday, and Meghan today relaxing after her appointment. I think she was glad to be home;)

Thursday, March 15, 2012

The Joy of Today

Happy 2 weeks old Meghan! Today we celebrated with a trip to the main campus of Cleveland Clinic to have another brain Ultrasound and a follow up with Meghan's neurosurgeon (who we love, by the way). It was really strange to walk the halls now that we are on the other side of her birth and her surgery. I'm not sure I will ever feel "normal" in that hospital again, but Joe says that some day we will look back and say "see how far we've come since then?"....that's one of many reasons why I love him:)

Dr. R. said she looks great, and is happy with how she's healing. We are leaving her shunt at this faster flow setting for one more week, at which point she will adjust the flow to be a little slower and see how she does. Thank goodness for programmable shunts! It allows her to make changes to her setting via a magnet, and without having surgery every time she needs the rate adjusted.

While we were waiting to be called back for Meghan's ultrasound in the pediatric radiology department, another mom sat with her little girl in the chairs beside us. We looked at each other- a silent recognition takes place. Her daughter had special needs, and it's not really "normal" for a 2 week old to be hanging out in the radiology department at main campus. We started talking, exchanging stories and comparing lists of specialists. She shared that she had adopted her daughter at the age of 2- she has been through 4 open heart surgeries alone, numerous other procedures, and deals with developmental delays. It strikes me that this mom SIGNED UP for this- she chose this path for herself, and chose to help this little girl on her own path. It made me think about how no one ever wants their child to be ill, or to have special needs- I know I surely didn't. Regardless of Meghan's developmental progress in the coming years, we will always have kidney function to watch, vertebral issues, and the shunt to manage: constantly watching for signs of over or under-drainage, possible infection or shunt malfunction. It is a daunting task to try and wrap your mind around. But, as much as that mom chose to raise that little girl, I was CHOSEN to be Meghan's mom. Chosen to protect her, love her, and help her to live her best life possible, and therefore I must choose to focus on the the joy of today. Our life will undoubtedly be different- it already is- but it is the way it was meant to be, most likely to make us better parents, and better people. That is the ultimate goal of our creator- to make us more like Him. What better way to accomplish that purpose than through the life of a little girl.

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

Sunday, March 11, 2012

Welcome Home Meghan

Oh my, home sweet home. How amazing it is to be here after 8 days of hospital life...Now for the updates.

On Thursday the Neurosurgeon came in and decided to increase the flow rate on Meghan's shunt. Her fontanelles were still full and her head circumference hadn't changed. The brain US from Friday showed that her ventricles were still the same, but the pressure indices had decreased- a good sign. We travel back to main campus this coming Thursday for another US and an appointment with the Neurosurgeon. This is the first of many many appointments in the upcoming months. We left with a list of follow up appointments with no less than 11 doctors. It is a little intimidating.

Although it was a short time in comparison to what could have been, our NICU days were very long days- emotionally challenging for everyone. I spent a lot of time feeling helpless as I watched them work on my baby. On her last day there alone she endured a brain ultrasound, a heel stick for bilirubin levels, three arterial punctures, a hepatitis B shot, and dilation of her eyes for an eye exam. From a medical perspective I understand everything done was absolutely necessary, but as a mom it is a thousand times different to watch it happen to your child. We knew that this time was coming, but there really wasn't a way to "prepare" for the reality of what happened. I am so glad to be home where Meghan is free of lines, wires, and the constant beeping of alarms! The shunt will always be there, but that is not an option:) That being said, the staff in the NICU at Cleveland Clinic was fantastic. There were many times that I had to leave her in their care, and the way they treated both us as parents and her as their patient made me confident that she was in the most competent and caring of hands. It takes very very special people to do that job. We watched as many other families went through struggles with their newborn babies, and it is a place that I hope no one ever has to be as a parent.

Our first night back wasn't quite the rosy homecoming I had hoped for. We weren't discharged until 6:45pm, putting us home right at bedtime for Addie. Meghan was really fussy still- I'm sure it was from being in pain after her surgery, and cried for 2 hours as soon as we got home. Addie didn't quite know what to make of the situation. To make matters worse, at 3am Addie decided she wasn't quite done with the flu bug she picked up and woke up throwing up, and having diarrhea. Whew. Welcome to mom-of-2-kidsville. Thankfully Grammy came and picked her up the next day to attempt to quarantine the germs, and today she was better and came back home. Meghan was also feeling better today, being post-op day 5, and has been eating and sleeping well. Today we had the windows open, sun shining in, and Addie got to hold her little sister for the first time. It was a good day...

Hopefully now we can settle in to life as a family of 4. Its definitely different, but in so many good ways. How grateful, how thankful to God we are that we are finally home together.

A very special THANK YOU to Maria Sabala Photography for her friendship, and the gift of the top three images above.

Thursday, March 8, 2012

Happy Due Date!

Officially, today was Meghan's due date. I am really happy to share that she is continuing to do well, even earning herself a "regular bassinet" overnight. The IV came out this morning, and her shunt seems to be doing its job. She had an echocardiogram this morning (which she was not a fan of), and we should have the results later today. The nephrologist was also in, and basically although the kidney is not in the right spot everything seems to be functioning normally, so we'll just follow up in 6 months.

On rounds this morning we discussed her discharge (YAY!) for tomorrow. She will have a car seat test later today to make sure she is able to maintain her oxygen levels while she's in the seat. Her head is only slightly bigger than a normal newborn so we are praying that she passes and we won't have to worry about a car-bed (something I didn't even know existed until all this..)
The attending ordered Joe and I to enjoy tonight with a nice dinner and some good rest, as it will likely be the last night for anything resembling restful sleep for a while- I've never been so happy about the prospect of not sleeping before:) I am so happy that we are so close to bringing her home.

Today we plan to hold her as much as possible, and "enjoy" what we hope is our last day in the NICU!

Wednesday, March 7, 2012

Prayers & Progress

Meghan is now officially 24 hours post-op and doing really well. She started feeding again last night, and was even able to nurse this morning. They have only given her 2 doses of Tylenol for pain, which I find amazing when I think of all her little body went through yesterday. She had a ventriculo-peritoneal shunt placed. They put a catheter into the ventricle of her brain, which is regulated by a programmable valve that lies outside of her skull but underneath her skin. The valve is connected to a catheter which is tunnelled down the neck, chest, and into the abdomen where the excess fluid drains and is absorbed by her body. Serious stuff for someone 5 days old.

We met with the neonatologist during rounds this morning. The plan is to make sure she is eating well over the next 2 days while some additional consults are made. She is going to be seen by a nephrologist, and an ophthamologist. She will also have additional brain ultrasounds and another echocardiogram to see if any of the holes in her heart have closed on their own. We are very hopeful to go home "Friday or Saturday"....

Yesterday they did an X-Ray series to confirm the placement of her shunt. While this showed that the shunt is working and in the correct place, we also found out that Meghan has some vertebral abnormalities that we were not aware of. Part of her vertebrae only formed on one side, and some of them are fused. She also has abnormalities of her ribs. It looks like she will have problems with scoliosis in the future, but thankfully that is able to be addressed surgically at a later date if and when it interferes with her walking. They have further discussed the probability of a chromosomal defect since she has so many anomalies, but a diagnosis has not been definitively made as of yet.

Today we are grateful for how well she has done since being born. Both Joe and I feel that we have seen many prayers answered on her behalf this past week, and we know that the Lords hand has been on her the entire time. We will continue to take things one day at a time, celebrating even the smallest triumph. I think this little girl will be teaching us to be grateful, joyful, and thankful to God for every moment as we uncover what may lie ahead for her. We are looking forward to our next miracle- discharge from the hospital!

Thank you all for continuing to pray for her and for us. We have felt so supported and loved, and we want you to know how much that means to us.

Monday, March 5, 2012

Surgery Plan

Just a quick update on Meghan. She is doing remarkably well. She's feeding great and the doctors have all called her very healthy! The neurosurgery team was by this morning. Her surgery is scheduled for tomorrow morning, first thing. We are hopeful that if all goes well and she recovers normally that we may even be home by the weekend.

Please pray that Meghan does well during surgery and after, for the wisdom and skill of the surgeons, and strength for mommy and daddy.

Saturday, March 3, 2012

Sweet Miracles

I am so excited to be writing this post! Partially because I am feeling so much better today than yesterday, and also because we have enjoyed a great first 2 1/2 days of Meghan's life. We had a great delivery experience here at the Cleveland Clinic. Welcoming Meghan into the world was every bit as amazing as it was with Addison. The rush of seeing your child for the first time and hearing them cry is an unexplainable and completely life altering moment. Joe and I are both completely thrilled to be parents again, especially now that we have made it to this point.

Now for the technical stuff...Meghan has seen more doctors in the first hours of her life than I can begin to count! Neurologists, neurosurgeons, neonatologists, and medical genetics. She's had an ultrasound of her brain and an MRI which showed that the hydrocephalus is being caused by something called aqueductal stenosis. This does mean that she will need a shunt, which we anticipate happening early next week. She also had an ultrasound of her kidney's which showed that both are present, but the left is not in the correct location and we are not sure if it's functioning or not. Finally she had an echocardiogram of her heart, which showed that there are 2 defects- either of which may or may not correct themselves. They did her echo on her first day of life so there is a chance it could have just been early enough that these holes which naturally occur in the womb have not closed yet. They plan to repeat the echo within a couple of weeks. The geneticists are running some tests to see if they can isolate a chromosomal abnormality since she has a conglomeration of anomalies.

The amazing part is that she is doing so well. We never could have anticipated that in spite of all the things we knew were wrong that she came out screaming, with perfect APGAR scores. She has been perfectly stable in the NICU, with great vital signs, and my personal favorite- a champion breastfeeder:) We are so grateful to God that we have gotten to enjoy these couple days with her before her surgery as normally as possible. Relief has given way to great joy as we celebrate the disappearance of the first of many unknowns ahead. She's here, she's "healthy", and in our eyes, she is perfect. This is an answer to thousands of prayers that were said for this sweet miracle.

Other great things....As hard as it is not to be with her 24-7 I am happy that I have been able to be within a 5 minute wheelchair ride to the NICU. Joe and the Grandmas have been taking turns staying the night so that I can get to the NICU to feed her on schedule since I am still doing the "C-Section shuffle". As of this morning, I am now free of all lines and tubes (hooray!) and will be discharged Monday morning. There is also a Starbucks on the first floor here...an added bonus:) Oh, and she smells like baby. Sweet, delicious, newborn heaven:)

Keep praying for her and her upcoming surgery if you would. For now, I'm just going to enjoy the last couple days of shunt-free Meghan. Thank you, thank you, thank you for all the prayers that were said for us this last few days. I assure you, in more than one way they were answered.

Thursday, March 1, 2012

She's here!!

Meghan Grace Cawley...

7lbs 6oz, 18.25in, at 8:25 am.

She's doing great...they just did her echo and brain ultrasound. Hoping to get to hold her soon:)