Tuesday, May 31, 2011

Home soon!

So, it looks like Miss Waverly will be making her journey home soon! We are so excited to have our girl home in less than a week! She continues to tolerate her feeds well on continuous drip, and is up to full feeds on that (continuous). Over the next couple of days, they will try to start transitioning her to bolus feeds. Bolus basically means a larger amount given at certain intervals throughout the day, in the same timing that you'd give a baby a bottle, only this is through her g-tube. So she'd get a few ounces at a time every three hours or so. We'll see how she does with that, and then continue that transition at home to have her on bolus feeds during the day and then continuous during the night. In the meantime, we have a few things to do to get ready for her to come home. While you wait, here are a few cute pics of her. (Ok, I know they're all basically the same picture, but I couldn't decide which one was best, so I'm including all three!)

Saturday, May 28, 2011

Big Girl Bed!

Waverly graduated to a big girl crib in the NICU yesterday! Way to go Waverly!

Wednesday, May 25, 2011

This is how I roll...

Right now we are just waiting for the surgeons to come back in town (on the 27th) to get Waverly scheduled for a nissen fundoplication. Basically, after getting her g-tube, she was throwing up a lot from reflux. They've tried several different tricks to get her to stop, but she continued to do so, and with her high risk of aspiration, it wasn't safe. So, until then, she's just been hanging out. They stopped her feeds for a while, but now have her back on 3 ml/hour just to keep a little bit in her tummy. She's getting the rest through IV nutrition. She also got a PIC line today. Hopefully we'll have a date for surgery soon, and she'll be that much closer to coming home. In the meantime, here's how she's been hanging out...

That pic shows her g-tube spot also. It's that big round thing with the tube coming out of her stomach. I'm slowly getting used to it!

Whenever they have to take her anywhere in the hospital for a test, this is how they transport her.
She doesn't seem to mind it too much. It's nice and warm and quiet in there, and she seems to like looking around at everything.

Anyway, I will keep you all updated on any new news and the surgery date, once we know. Thanks, as always, for following her story and for praying.

Fun with family

Waverly has enjoyed some time with her family...

...with Grammy and Uncle Nick....with Grammy.
...with Grandpa.
...with Grandma.
...with Granddaddy.

Monday, May 23, 2011

No field trip, for now

The doctor called both UVA and Wake Forest today to check about Waverly getting the nissen procedure at both places. The UVA docs said they'd be several days before they could get to her, at the earliest. And the Wake Forest doc said he wanted to wait for her g-tube site to heal up more before another operation, so both places wouldn't be able to operate until the surgeons are back here anyway. So, for now, we are keeping her where she's at. They had her feedings cut off today, and will start back with just a little bit for now, and see how she does. They'll continue to manage the reflux with medications and other management techniques in the meantime, while we wait for surgery to be scheduled. She's getting most of her nutrition/fluids through the IV, and they will start a PIC line (like a longer-term IV) on her tomorrow (because they are running out of good IV sites for her).

We heard some hard but honest words from the doctor and nurse today. He talked about how we are seeking to improve her quality of life, for the time that she has, and spoke of how limited that time may be. He spoke of wanting to get her home as soon as possible so that we do have some time with her. Of course, only He knows, and has already planned, this little girl's life. But those words are hard to hear. I am so thankful for a good nurse today, who was a believer and empathetic, and told me of her own daughter who wasn't supposed to live past the age of 2, but is now 9 years old. In the midst of so much pain and hurt, God has still provided so much support and love to us. Thanks for being a part of that...

Sunday, May 22, 2011

A field trip?

I just got back from the hospital this afternoon. Although I was only there for a few hours this time, it was quite stressful. At first I was able to just sit and hold her, but then after I put her down, she started spitting up a lot (which she has been doing a lot the past few days). I was trying to pump at the time, and her nurse was with another baby, so I was hovering over her, suctioning out her mouth and nose (because she couldn't breathe), all while trying to hold the pump (I had forgotten my hands free system at home!). The danger with her spitting up is that she doesn't swallow correctly, and instead of it either coming out of her mouth or her swallowing it back down, she aspirates it as well. This had led to her choking, turning a little blue a few times, and getting junk in her lungs (which can be very dangerous and lead to pneumonia). The doctor has been trying some different reflux medication with her to try to control the reflux issue, but it hasn't seemed to help much, and he's afraid that if we wait too long, she will indeed develop pneumonia and that could be very bad for her. So, we are talking about a second surgery on her called a nissen fundoplication in which part of the stomach is wrapped around the esophagus to prevent reflux (and then aspiration, in her case). We have been asking about this procedure since before her g-tube surgery, but the docs wanted to wait and make her prove that she needed it instead of just doing it as a precautionary, largely because it is a more major surgery than just the g-tube itself. However, given the past several days, he feels she is moving us in that direction.

The field trip part comes in to play because the pediatric surgeons are gone this week, and if they determine that she needs it sooner rather than later, they will have to send her elsewhere to do it (they mentioned UVA or Wake Forest). They took an x-ray of her lungs today, and will take another one tomorrow, and compare and study for signs of aspiration, and then we should know the plan. Please pray that the docs would see what they need to and make the right decision. Although thinking about transporting her so far and her having such a major surgery, as well as the logistics of me/us being there with her, are so great, we want her to have the procedure if that will make her that much closer to coming home (and doing so safely!). I've had the feeling all along that she would need this second procedure, so it's not a surprise to me, but not something I'm looking forward to for her either.

In the meantime, they are cutting her feed volume in half and restarted an IV for fluids for her.

Waverly's Journey-1 in 100,000

Last Wednesday, we received a call that explains a little more about our girl. The doctors ran a test on my amniotic fluid (that they had from my amniocentesis) and discovered that Waverly has Miller-Dieker Syndrome. In short, MDS is a rare genetic disorder that results from a gene deletion on the 17th chromosome. This leads to Neuronal Migration Disorder and Lissencephaly ("smooth brain") in the child. There are other characteristics of children with MDS as well, including the things I mentioned before (deficits in cognitive and motor development, seizures, feeding difficulties, low muscle tone, cerebral palsy, and distinct facial characteristics). According to one source, MDS occurs in 1 out of 100,000 children. That number keeps ringing in my head. 1 in 100,000. While at this point it doesn't seem to change much about her logistically, it gives us somewhat of an explanation, and a name. I'm not sure if I like that or not. It does not, however, change how incredibly amazing she is. We are so in love with our girl, and think she is the most beautiful thing in the world! Please continue to pray for her as we learn about her and this condition, and travel this long road.

Wednesday, May 18, 2011

More pictures!

I thought I'd post a few pictures of Waverly's last few days.

She was jaundiced, so she had to be under the biliruben lights for a few days. She HATED those glasses on her eyes, and every time we turned around, she'd pull them off! Little stinker...!Bathing beauty. I thought we'd have a while before we had to address the whole tanning thing... :)
Sweet sleepy girl...
Awake (and happy to have the glasses off and be able to look around!).
Baby smiles!
Pretty girl (the headband was actually one of the newborn hospital hats that they cut and would put around her eyes when she was under the lights to try to prevent her from pulling her glasses off. It doubled as a headband when she got a break from the lights!).
Another baby smile... :)

Tuesday, May 17, 2011

Surgery-Wed @ 8:15a.m.

Just a quick note that her PEG/g tube surgery is scheduled for Wednesday morning at 8:15. Prayers appreciated!

Monday, May 16, 2011

Surgery scheduled

Before Waverly comes home, there are a few things she has to do: breathe on her own, hold her body temperature, and eat and show growth. She's doing the first two fabulously, so we are just waiting to get her eating straightened out. She had a swallow study last Friday, which showed she was respirating when she was drinking a bottle, so they placed a feeding tube back in through her nose (she'd had one before that they had taken out). It's called an NG tube, and was placed until we could get her scheduled for surgery to get a gastrosomy tube (g tube) placed in her stomach for her feedings. We have that tentatively scheduled for Wednesday at 11:15a.m. In the meantime, here are some pictures showing how she's been "eating" through her NG tube (it's the tube taped to her face going in through her nose, down into her stomach). They attach a syringe filled with milk to it, and hang it up for it to drain into the tube and into her stomach. (See the tube attached to the chair beside Johnny).
Mama taking a turn during a feeding.

The g tube makes me nervous, but I've heard from others who's children have them, and they say they are great. Bottle/breast feeding is definitely a danger for her, so this will be a great thing for her in the long run, and as we learn about the g tube, I'm sure we'll agree that it's actually quite easy. Please remember to keep our girl in your prayers on Wednesday morning!

Waverly's Journey-Diagnosis

Waverly's Journey-continued from previous post

After she was born, her initial signs checked out well. There was a spot on her back that they were concerned about, and spina bifida was mentioned (one of the concerns prenatally as well). However, after a battery of tests in her first few days (ultrasound of her head and spine, MRI of her head and spine, EEG, EKG, and others), it was determined that Waverly has Lissencephaly (means "smooth braing") due to a Neuronal Migration Disorder. Basically, as her brain was developing, the nerves did not migrate to their proper place. Her mid- and post-brain appeared relatively normal, but her forebrain has fewer "wrinkles" in it, thus giving it the smooth appearance. In essence, she has less brain matter than she should. Because the forebrain affects motor and cognitive development, they expect Waverly to have moderate to severe deficits in those areas, including Cerebral Palsy, Mental Retardation, and possibly seizures. However, her basic functions should be normal (heartrate, respirations, etc.). It was determined that the spot on her back isn't a concern. Her spine does stop one level above where they'd expect it to, but they don't see any way that should affect her for now.

Of course, these are all predictions from the doctors. Ultimately, though, they say we will just need to wait and see who Waverly is. As she grows, we will see what this diagnosis means for her, what she can and cannot do, etc. As you can imagine, this has been life changing for us. From the very beginning when they had concerns about our baby, we have been trusting in the Lord to give us the very child that He created, and we still trust in Him that she is created just as He wanted her to be, and that she was given to us in His perfect plan. He does not make mistakes! It doesn't mean that it hasn't been hard...it's never easy to watch your child struggle. But we know that He has an amazing plan for her life.

We love this precious creation that God has entrusted to us. She is absolutely gorgeous, and we are all in love with this little girl. We hope that you are all able to continue with us on this journey, Waverly's Journey, as we see how God works in her life for His glory.

Waverly's Journey-The Beginning

Everything in this pregnancy had progressed normally. I noticed that I was starting to measure big as it was turning warmer outside, and at my appointment on April 1st, the doctor noted the same thing. I was 32 weeks pregnant. She scheduled me for an ultrasound two weeks after that to take a look and make sure everything looked ok. At that ultrasound, they saw that I had extra amniotic fluid, and they mentioned it seemed like the baby had extra fluid in the ventricles of the brain. They had me schedule another ultrasound with a high risk doctor. That appointment was made for just two days later. Given the speed of that appointment being scheduled, I started to think that maybe we were dealing with something more than "just" a little extra fluid.

At that appointment, they saw several things of concern. They confirmed the extra amount of amniotic fluid as well as the fluid in the brain. They also said they were concerned about the size of the baby and its abdomen (both measuring small), the eyes appeared close together, the chin appeared recessed, and a possible club foot (which they later dismissed). We were told it was likely that something was going on with the baby, but we just weren't sure what. Such things as chromosomal issues, genetic issues, neurological issues, and prenatal infection were mentioned. I was to have twice weekly appointments with ultrasounds and non-stress tests to follow and monitor baby, and they suggested I get an amniocentesis (which I did the following week).

Long story short, my fluid levels continued to remain high, and although they couldn't pinpoint one specific thing that was going on with baby, my doctor suggested we induce labor at 37 weeks (considered full term) since the baby was measuring small and they had so many concerns. I will save the birth story for another post, but Waverly was born at 37 weeks and 1 day on May 8, 2011. And that is the beginning of her journey...

Birth Day Pictures

Here are a couple of pictures from right after Waverly was born.

A few minutes old.
Bonding with mommy.

Sunday, May 15, 2011

Waverly Ann

Waverly Ann
Sunday, May 8
5lbs 5.4oz