Happy Easter!

Wow!  Can it be Easter already?  And April tomorrow?  How did that happen?

I wanted to take a quick moment to wish everyone a Happy Easter.  Lucy had a wonderful time today with lots of her cousins around to keep her entertained.  At church this morning, our pastor told the congregation to get out their "blessing catchers" during the prayer (Which means to hold your hands up, palms out to accept the blessings that God "showers" down on us.)  During prayer time Lucy looked at me and my hands and then put her little hand in mine for the rest of the prayer.  Now, if you know Lucy, you know that she likes her hands free to move and explore things with, so for her told hold my hand was pretty extraordinary!  It was a tender moment for me as I reflected back on the first Easter so many years ago and thanked God for the promise of His Son and all the hope it gives us.

So, from us, to you, Happy Easter!  Here are a couple of pictures of Lucy hamming it up for the camera:

First (of many) Esophagus Dilatations

Before...she didn't have to wear the hat, but one of the nurses tried it on her and she looked so cute.

On Friday, Lucy had her first esophagus dilatation (now, there is some discussion about if it is a dilatation, or a dilation, but the medical people have been calling it a dilatation, so that is what we are going with!)

It was another long day for us at Day Surgery.  We had to be there at 8:45 and she didn't go into surgery until 11!  The procedure was quick - 30 minutes at the most.  The GI doctor told us that her esophagus was around 3 mm when he started, and by inserting a wire and then a series of tubes over that wire, they were able to got to 6 mm.  They tried a 7, but couldn't even get it down, so he stopped at a 6.  We're not exactly sure how many of these she will need, or how wide we'll need to get to, but we know that this was the first of several.

Lucy had a really tough time coming out of anesthesia this time around.  She woke up good, but her blood oxygen levels did not pop up as quickly as last time.  It brought us back to the NICU days, when she was constantly on monitors and we kept cheering her on to keep her numbers up!  So, we were in recovery for quite a while and there were even some murmurs about keeping her overnight for observation.  Jason and I did NOT want that to happen and knowing her like we do, we knew that it just takes her some time to recover.  She got two nebulizer treatments and after those and some long cuddles with both mom and dad, she was doing much better and we got to take her home that same day.  We did not go down there preparing for a day surgery to be an overnight stay, so were VERY thankful that we didn't have to have a hospital stay.  We are not exactly sure why this time took so much longer to recover than the last time, but her ENT doctor was at the last surgery so he may be helped guide the breathing tube placement/length of placement.  We definitely plan to talk to him before her next one to hopefully avoid this again!  It was kind of scary for Jason and I to see her in such a rough state again.  Have I mentioned that I can't wait for this to be over?!?!?!?

After...not feeling so hot.

Lucy is such an amazing baby, though!  She recovered so great on the ride home and over the weekend and was SUCH a good baby in the midst of not feeling great on Friday night and having 6 cousins, many aunts and uncles, a baby shower (for her!), and a big crowd for Easter.

We are slowly re-introducing food to her and all has gone well so far.  Her esophagus should be about twice as wide as before the procedure, so hopefully her food tolerance will slowly increase.

Her next dilatation will likely be in about 3 weeks.

9 Months Old!

Lucy is 9 months old!  I can hardly believe it!

Today she had her 9-month checkup with the pediatrician and she thinks that Lucy is doing great!  Here are her latest stats:

Height:  2 feet, 3 inches (25th percentile)
Weight: 16 lbs, 4 oz (10th percentile) 

Lucy is staying busy trying to get from her butt to her feet, talking non-stop and watching the birds outside.  She loves books and can hardly wait for a page to be done so she can turn the page for us.

Her feeding tube site on her stomach continues to get easily irritated and raw when she leaks.  A few weeks ago, they replaced her 12-french button with a 16-french, in the hopes that it would fit better and she would leak less.  It has definitely helped, but it is not 100% sealed up by any means, so she still leaks quite a bit around her G-tube site.  In an ideal world (if that is possible with a feeding tube), no dressing would be required.  However, it's so hard for this age not to leak, since she is constantly moving and on her belly or sitting down while touching her nose to the ground.  My mom and I have been putting our heads together to come up with a better dressing for her site since the tape we use isn't covered by insurance (it's between $15 and $20 a box) and the foam dressing we get sent from the supply company just doesn't seem to be working.

So, I just ordered some homemade dressing to cover her G-tube site.  I'm excited to try it out and hope that it will be better than what we are currently using.  I really don't want to complain, but I hate her feeding tube and cannot wait for it to be gone!  Since I'm sure most of you can't even imagine what this looks like, here's a picture of a Tubie Friend, which are stuffed animals designed to educate kids with feeding tubes about what they are (plus, feeding tubes in general don't look very nice on a baby, so this is a better way to see it):

Next week, we finally have her appointment with the feeding clinic and also have her first appointment to have her esophagus dilated.  That will involve her going under general anesthesia again, which we are not looking forward to, but we are excited to be taking this step forward in her healing process (and it should mean one step closer to her feeding tube being removed!)

Chewing on an Apple Slice, like a big girl!

Swallow Study

Lucy had another swallow study yesterday.  If you remember, her last one was shortly before we left Denver.  At that point, they were really focused on making sure her airway closed when she swallowed.  In this swallow study, they performed a full upper GI study, looking at her anatomy (looks good) and focusing on the stricture in her esophagus and viewing what happens when she eats orally.

Jason was gone for work, so I took mom with me - her first trip down to Children's here in Minnesota.  It's so helpful to have an extra set of hands to help haul around Lucy's stuff, dress/undress her and entertain her during the time we wait.

The results confirmed what the doctor had seen during her endoscopy.  Her esophagus is very narrow near her surgical site and when she eats, the food pools at that site and gradually works its way down instead of smoothly going from mouth to stomach.  So, if she eats too fast, that pool of food comes back up instead of going down and she is at risk for aspiration if her airway doesn't close properly when it comes up.

The study was kind of rough on her.  First she had to lay extremely still for a series of x-rays (does any 8 month old ever lay completely still if they are not sleeping?)  While flat on her back, they gave her a series of drinks of liquid from a sippy cup in order to watch how she handled it.  She was screaming and by the end had almost cried herself to sleep, poor baby!  It was one of those appointments that I had to remind myself not to cry for her and remember that the end result will be good, but getting there is painful for her and for me to watch!

Then, I had to feed her baby food mixed with barium gel (gross - I'm surprised she ate it!) and they had me feed her extremely fast so they could see it back up, as described above.  Inevitably, it came back up after a few minutes.  Then they had me inject a syringe of liquid into the back of her mouth to see what liquid would do - she ended up coughing on that, because she aspirated some of it.  Now, as a mom who is with Lucy most of the time when she eats, I know what an unrealistic situation this is for us - we would NEVER feed her that fast and I think if someone injected a syringe of liquid into the back of my throat, I would also choke on it!  At the end of the study, the therapist recommended that we not feed her anything orally, which Jason and I totally disagree with.  We feel like we know her and what her body can handle and that stopping all oral feedings at this point would be more detrimental to her long-term development.  We've often read that baby's with TEF repair learn to adjust to eating at a pace that they can handle and we feel like that is what she is doing.  We know that we're not able to feed her Cheerios or won't be able to give her a half a grape when she's 18 months old, but she will adjust to gradually be able to handle those foods.  It's a tough position to be in as a parent, but we have to remind ourselves that we are her biggest advocates and are with her all of the time - not just an hour like these doctors!

Tolerating mommy's silly dress up ideas

At the end of the day, we know that she will need her esophagus dilated, likely several times and we hope to be able to move forward with that soon so that Lucy can be on the road to getting rid of her feeding tube!  It's a long road and we are making baby steps in the right directions - I just wish those steps could be leaps and bounds instead! :(

Standing by the deck door, watching all the birds

Doctors appointments aside, Lucy is such a happy and fun baby.  She is playful and patient and good-natured.  She is so close to being on the move, but can't quite figure out how to get all of her limbs moving together in the right position to let her crawl.  She's been very into standing lately and often will plank when we try to sit her down.

I've been following a couple blogs and Caring Bridge sites of friends who have babies in the NICU and am reminded of what a long journey that time was for us as a family,  Even though we go to the doctor at least once a week, it's so much better to have Lucy home with us - safe and sound despite her challenges!

Next week, we have her 9-month appointment!

After seemingly endless snow days here in Minnesota, I decided we needed some fresh air today - not sure what Lucy thought about it!

MRI Results

First off, let me begin by saying that it has been exactly a year since we found out that Lucy had hydrocephalus. 

The MRI results today looked great!  The neurologist told us that her spine looks good - nothing to be concerned about there.  Also her shunt is definitely doing its job, controlling the level of fluid in her head and allowing her brain to develop.  She still has (and always will have) an abnormal brain, with some thinned-out areas and more fluid than a normal brain.  However, in the doctor's experience, there is no reason to believe that she will be drastically behind from a learning and development perspective.  He did acknowledge that there will likely be challenges in that department, but nothing to address in her toddler years beyond the ECFE programs we are already in the process of connecting with.  What a huge answer to prayer to have confirmation that little Lucy is doing so well! 

I was reading back on our blog to the entry for March 5, 2012 and it is obvious to me that we were in a much different place then.  Here are some excerpts:

2012:
[The doctor] sat down, looked at the monitor for a few seconds and declared that although the baby's development was on course at this point, she had a "severe case of fetal hydrocephalus." He then proceeded to point out a black mass of fluid in her head where her brain should have been.





2013:
The doctor sat down, looked at the computer images and declared that her brain looks good, despite being born with what he agreed was a severe case of fetal hydrocephalus.

2012:
The doctor asked if we had questions - which we really couldn't wrap our minds around. He outlined options for us - terminate the pregnancy, more test to rule out other birth defects, etc. 



2013:
The doctor told us that Lucy looks great and seems to be on course from a development perspective.

2012:
We held most of our tears until we made it to our car. I will never forget what Jason said as we struggled to pull ourselves together: "She may not be perfect, but she'll be perfect for us." And he's right.



2013:
We hustled to the car on a snowy afternoon holding a smiley, giggling 8 month old who IS perfect for us!



2012:
We knew that we would need an inordinate amount of strength to get through this journey and that we could not do it alone.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

2013:

We know that we will still need an inordinate amount of strength to get through this journey and are so thankful to God for his continued strength and blessings that he has bestowed on us over this past year.

New Camera!

March is shaping up to be a busy month of appointments.  Lucy is getting her 3rd dose of Synagis (yes, it got approved by insurance - yea!) and we are meeting with Neurology to review the results of her brain and spine MRI tomorrow.  Next week, she will have another swallow study, to try to get a clearer picture of how her esophagus looks when she is swallowing food to determine what else we need to do in order to make that opening a little wider and more comfortable for her.  She also has her 9-month check-up and her feeding clinic appointment later this month.  All of these, coupled with Jason's very busy travel schedule means we will be going, going, going and it will be April before we know it!

Oh, and we got a new camera...here's a couple of fun pictures we got today.  Lucy's a great subject!

Hamming it up with Grandpa

Wondering why that flash keeps going off

Blowing bubbles

Hanging out in the excer-saucer making my Popeye face

Wishing I could just figure out how to move faster - this army crawl thing is too slow!

Mommy knows just where I'm ticklish!

Feeling free in just my diaper - crazy hair and all!

And in case you wonder...yes, I cry sometimes, especially when mommy and daddy try to pin me down to get me dressed!