A little bit of normal

Agh! Lots to do since it’s a certain someone’s first birthday on Friday, and we are getting ready to celebrate!J Quick update on appointments this week:

We met with a pediatric surgeon about putting in a gastrostomy tube for Meghan. It will take the place of the NG tube, and allow us to give her extra nutrition for as long as she needs it. The tube would go from her abdomen directly into her stomach, and there will be a little “button” or port to connect to for feedings. We had a lengthy discussion about the risks. There is increased risk of the tube worsening her reflux and causing vomiting. There’s also a small risk of her shunt becoming infected if stomach contents were to leak out into her abdomen, since the end of the shunt tubing- the end that drains the excess fluid- terminates in her abdomen. The biggest risk though, is her neck. He wants (and so do we) to find out how unstable it is before he will plan the surgery. He prefers to put the tube in with an endoscope which would involve moving her neck around a lot during the procedure. Not a safe thing to do if it is as unstable as they think. So we are (still) waiting on the expert opinions. I am trying really hard to be patient, since surgery and therapy decisions are on hinging on the verdict, but I also understand how the system works.

We also saw her neurologist this week. After her MRI, we learned that she has severe deformity of the inner ear structures on the left including the cochlea, vestibule, and semi-circular canals, which explains why she is deaf in her left ear. She also has severe deformities of the septum pellucidum, corpus callosum, and the hippocampi. The doctor said that it significantly increases her risk for seizures, on top of her risk due to the hydrocephalus. This of course makes me worry, BUT, we are thanking God that so far she is seizure free. He also thinks that perhaps the reason why she doesn’t like to use her left hand as much is not due to weakness, but a sensory issue due to the way the nerves in her neck are affected as a result of the scoliosis. He isn’t sure why she won’t bear weight on her legs, as he said her reflexes and strength are normal- NORMAL!!! Normal is not a word we hear often used about MeghanJ So another reason why therapy is so important for her. He also said that cognitively she is doing “quite well”, and has a beautiful smile. We knew thatJ It’s funny how a little over a year ago we left his office with heavy hearts, as he outlined the prognosis for our little girl. Monday, we left with a little girl who had just clapped for him. I am still smiling.

"the LORD has done this, and it is marvelous in our eyes"

Psalm 118:23

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:)