I heart a tubie

I'm a little delayed in getting this update out between getting Meg home and me being sick, but we're home, and settling into life with an NG feeding tube. We haven't left the house with Meghan yet mostly because we are trying to get used to a new routine. It's a little intimidating- making sure the tube is secure, doesn't get pulled out, hooking up the feeds, administering her bolus feedings etc, but its all worth it. I stepped on the scale with Meg tonight and she's gained .6 lbs in 5 days. After nearly 2 months with no gaining, this is big stuff! Maybe just maybe, she will actually double her birth weight in time for her first birthday! She seems to take being a "tubie" in stride in her usual smiley way. She amazes me, and so does her big sister. I can't imagine what it's like to be 3 and have your little sister go through things you don't understand. When we came home from the hospital, Addie met her face to face, said, "is that her tube?" And gave her the most gentle kiss right over where the tube is secured to her cheek. I am so proud of her.

The remainder of our hospital stay included an ultrasound of her kidneys and bladder and a consult with a pediatric urologist. Our neurosurgeon is trying to decide how soon, if ever, to operate on her tethered cord. She scheduled her for urodynamic testing next month to give us a better idea of whether or not she's having any bladder dysfunction which could indicate that she needs to have the surgery. It will also help us to see if she's having any reflux in her kidneys, since they are both on the same side and "snuggled up" together.

We'll go see a surgeon next week to discuss the possibility of having a g-tube placed in her tummy instead of the NG. The less time she spends with a tube down her nose the better. I worry a lot at night that she's going to get tangled up in all the tubing. Thank goodness for video monitors, and a husband that's not afraid of the whole setup.

I am continually amazed at how patient and sweet Meghan is through all of this. She had a pretty rough week, and never stopped smiling. She smiled at the doctors, nurses, techs, and even at the man who drew her blood- twice. She'll shed some tears, and as soon as its over she grins to tell you that she's alright. It is a gift to love this little girl through all of things I wish I could take away.

While we were waiting for our room assignment Monday, we were pushing her around the hospital lobby. She was babbling, which until Monday, consisted of baba, dada, and a few ga's. Then it happens. The moment every mommy waits for. She said mama, and smiled so big I knew she was proud of what she had just done! It was a perfectly timed moment I know will stay permanently etched into my memory. A little thing to some, but now I know better than to take such little things for granted.

Ironically, Meghan chose the 3rd Annual Feeding Tube Awareness Week to acquire her new look. Here is a link to the Feeding Tube Awareness Foundation. There is excellent information on feeding tubes, including a letter to friends and families of kids with feeding tubes. 

Hospital Day 1

Today was long, and I am happy to say almost over😀. Staying in the hospital is like a really unfunny version of camping, except that a full service Starbucks happens to be in the lobby, and there's morning yoga on the terrace (not kidding).

We were seen by GI, pediatrics, and urology today to start. After we were settled, the nurses let me put her NG down since we have to be able to put in back in ourselves at home. Meg didn't enjoy it, but once it was down she did pretty well. She had an X-ray to confirm the placement (performed by a former coworker- thanks Maria!), and a lab draw. Basically the plan is to see how she tolerates the tube feedings, and watch her blood work closely for a couple of days. They are also going to do an ultrasound of her abdomen to make sure there's nothing else we are missing that would explain why she's not gaining weight.

The little lady is finally asleep (there's a lot of noise and poking and prodding in hospitals), and her first feeding is running in. Thanks to everyone who is praying for us- we have seen glimpses of mercy throughout the day today.

Precious Life

Our sweet girl has kept us pretty busy- this week was packed, and so is this update! Here goesJ

Wednesday we saw her endocrinologist. He says she will need growth hormone shots, but probably not until closer to 2 or 3. She is growing in length and following her own curve, so we are going to watch her closely to make sure that doesn’t change. We are also scrapping the stimulation test until it becomes “medically imperative”. (Chalk one up for mama bear).

Yesterday we went to the hospital for Meghan’s XRay, MRI and sedated hearing test. Long, long day, but the good news is that there weren’t any unpleasant surprises! Meghan's hearing test showed that she has profound hearing loss in her left ear, and her right ear is normal. This is actually better news than what they initially had thought. The profound loss means that eventually, she will be able to be fitted for a hearing aid and that it will actually work. With auditory neuropathies that is not always the case, so we are considering that good news:) Next, as we knew, Meghan has a Chiari I Malformation:

This is a condition in which a part of the cerebellum is pushed down further than normal through the opening in the base of the skull. It is often found in kids with congenital hydrocephalus. Her MRI showed that although the malformation is present, there is good flow of spinal fluid around the part that is pushed down- good news:) They also imaged her entire spine. Our neurosurgeon is going to send off her pictures to be reviewed by the doctor we saw in Philadelphia. She was fairly certain that we are going to have Meghan fitted for a neck brace for 2 reasons. First to help protect her neck, and second to prevent her hemivertebrae from fusing in their current position. Her head is tilted to the left because of the hemivertebrae causing scoliosis (curvature). The brace will help her maintain neutral alignment and hopefully help her to eventually sit on her own since she won’t have to work as hard at holding her own head up!

Meghan also has an extra vertebrae in her lumbar spine (lower back). This makes it difficult to tell if her cord is truly tethered or if there is just extra fatty tissue at the end (also known as a fatty filum). Dr. R. said she was going to review the films with the radiologist and a spine expert to help determine if she might need surgery to cut or “untether” the spinal cord. This may be a reason why she will not bear weight on her legs. There are usually symptoms associated with a tethered cord, but as Meghan is so little, it is hard to tell if she is having them- which brings me to next week.

Monday, we are going to be admitted to the hospital to have a feeding tube placed. When we met with her GI doctor last week, she had only gained 2 ounces in the last month, despite an exhausting attempt to squeeze in every calorie we could. They recommended going ahead with the feeding tube. For kids like Meghan, an illness or surgery can set them back pretty far, and nutrition is vital to healing, and of course, growing. The tube will hopefully get her on track with weight gain, and provide a safety net for her. This will allow us to focus on feeding her things that are pleasurable, and increasing what she’s able to eat by mouth. While we are in the hospital, we’ll be pretty busy. First she will have a nasogastric tube placed. This is a tube that passes through the nose and into the stomach. We will see if she is able to tolerate the feedings this way, as well as learn how to administer them at home. We are going to work closely with a dietitian, feeding therapist, and meet with the surgeon. Eventually she will have a g-tube placed, which is a tube that is surgically implanted into the stomach, and anchored to the abdominal wall. This will be far more comfortable for her than the NG tube, but it is more invasive. It is reversible, and if and when she is able maintain her own weight, we can take it out. We won’t know the time interval on the surgery until we meet with them next week. While we are in the hospital, we will also see a urologist to discuss testing Meghan’s bladder. This may give us some insight as to whether Meghan is having silent symptoms of a tethered cord. We hope that we are not there longer than 3 days! Hospital life is not exactly ideal when you are on the other side of the bed, and even less when it’s your baby.

We are so thankful to our family and friends who are holding us up physically, emotionally, and in prayer as we help Meghan through these hard days. Her sweet little spirit sure keeps us going. It also helps when we get good news! The last bit of news from this MRI was that her ventricles are much smaller, and there is lots of beautiful brain tissue where there was once a significant amount of fluid. This past 2 weeks, Meghan has started waving, learning to finger feed herself, and we THINK she is trying to say hi. And she does it ALL with crazy hair, a joyful laugh, and a smile that brings the sunshine in. Praise God.

Lastly, her first birthday is coming up in just a few weeks (I can hardly believe this). In honor of her first year of life, we hope to raise enough money to fund one lifesaving surgery for a child with hydrocephalus in a developing country through CURE International. Please visit www.cure.org/my/meghansmiracle to read her story, and join Meghan’s team if you feel led. We hope you find the work they are doing as inspiring as we did. We are incredibly blessed to have access to the care that we do. In other parts of the world children are not nearly as fortunate, but their lives are equally as valuable, and equally as precious in the eyes of Jesus. What greater gift could we give to honor Meghan, than the gift of precious, precious life.

We'll keep you posted next week!

Thank you Sarah Marie Photography! 

Check out my chompers!

Dressing up with big sister:)

Looking quite smart in her custom hospital gown by Miss Shannon Dennis! She sews with love:)

Pure Joy

Happy New Year! Things have been so busy, this is the first post of 2013…I keep waiting for things to “settle down”. I think I am starting to realize that they might not ever settle down, so I had better buckle up and get ready.

At the beginning of the month we met again with Meghan’s Gastroenterologist. Since she still wasn't gaining what we had hoped, we further increased her calories by adding oils and corn syrup to her solids, and by moving her from a formula supplement to 100% high calorie formula. It seems that Meghan has chosen this to be the first area in which she is exercising her independence, because she is refusing nearly all of her bottles during the day. We are managing to get 1-2 in her at night when she’s sleepy and doesn't fight it as much. The rest of the day we are packing as much food in her as we can, but it still seems like it’s not enough. She only gained 2 ounces in the last 4 weeks. This has unfortunately led the doctors to suggest a feeding tube to help make up the extra calories. We will go back this Thursday to figure out how we can best accomplish that. There are a couple different kinds of tubes she could have, and we need to decide what will be best for her. We are still praying about that decision.

Next week Meg has another MRI of her brain, and entire spine, along with a sedated hearing exam. This MRI will also include pictures of her neck in flexion and extension, which will give us a better idea as to how unstable her cervical spine is, and what we need to do in the time before she can have the fusion surgery, including PT and OT. We got a phone call last week that the neurosurgeon we saw in Philadelphia wants us to once again hold her physical therapy until we get this next MRI. I am glad that they are being so cautious with her, but at the same time, it is hard when one of the only things we can actively “do” to help her develop, is taken away. This last week has been a little rough on us as parents. I am not sure why I expected things might get easier, but as we encounter each next step it seems some things get harder. Most of the time I can hold it together ok- but we all have our moments. One of them came after that phone call. I was standing at the kitchen sink, with soapy hands and a soaked face. It was in that moment that I thought of the words of James, “Consider it pure joy, my brothers, whenever you face trials of many kinds” (v.2)….Pure joy? I know that there are many, many circumstances that are more difficult than ours, but still- in this moment, as I fight for my child, this is a trial. And I was having a little trouble with finding the joy. I wrestled with that all afternoon. That evening I attended our weekly women’s Bible study (which just so happens to be on the book of James, by Beth Moore). The theme of the evening was how joy and anguish can coexist. The example that Beth used? A mother who’s unborn child was diagnosed with a terminal condition via ultrasound, and her decision to carry her baby to term. It is the story that inspired the song by Selah, I Will Carry You. It was exactly what I needed to hear. If there is anyone out there that doesn’t believe that God cares, is listening, and has his hand on your life, I beg you to consider otherwise. So many times on this journey I have been reminded of that truth. I am learning exactly what it means to have the two emotions coexist, and Meghan is teaching me. 

                The next day? Well, I will have to let you see for yourself…(don't mind the leftover lunch..)

“consider it pure joy, my brothers, when you face trials of many kinds, because you know that the testing of your faith develops perseverance”v.2-3

 Joy comes from watching this little girl make the smallest gesture, it comes from friends and family who are always there for us, and in knowing that God will show up in any trial, perfecting our faith if we will persevere.....and persevere we will.

Meghan's MRI is February 7th. Would you consider keeping her in your prayers that day? She will be under general anesthesia for a few hours while they complete all her testing. Thank You!

Working on her sitting skills...

with some help to keep her knees straight, she got to put weight on those legs for the first time!

Taking time out for some fun:)

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.