Springtime!

In keeping with my previous rants about the weather...we have been so thankful for the gorgeous weather over the past few days here in Minnesota!

Lucy loves to be outside - there is so much to look at and so much space to explore! 

She is also becoming VERY independent in regards to feeding herself.  Typically a baby her age would be able to handle table food and feed him/herself finger foods.  But since she only gets purees still, she has taken to feeding herself with a spoon.  She is pretty coordinated and does a great job - but it's still a pretty long, messy process for us (I frequently sport baby food of some form on my shirt and pants, too!)

On a positive note, her gagging has been much improved since her last dilatation.  Also, her leaking has been SOOOO much better since we've started using the homemade dressing all the time. We haven't had to change her dressing/clothes multiple times for quite a few days in a row - so nice!

We are heading to Duluth on Friday to celebrate our wedding anniversary, see my sister and enjoy a mini family vacation.  Traveling with a baby takes a lot of planning, but traveling with a baby who has a shunt and a feeding tube takes a LOT of planning - but we are up for it and looking forward to spending some quality family time together!

Esophagus Dilatation #2 (Oh, and Lucy is 10 months old!)

Yesterday Lucy turned 10 months - I can't believe it!  Wasn't I just writing that she was 9 months old?!?

Today she had her second esophagus dilatation.  The procedure went well again, as her first one did last month.  Instead of performing the dilatation with a series of wires/tubes, this time the surgeon inserted a deflated balloon into her esophagus and then inflated it once it was in place.  They inflate it just to the point that the tissue tears and starts to give a little.  Beyond that - the risk of more injury to the esophagus is too great.  He was pleased with the results, and told us that he was able to dilate it from around 6 mm to 8 mm.  So, we still have a ways to go and will repeat this again in 3 weeks.  He reminded us that this is a long process - the results are better right after a dilatation than they are 2 - 3 weeks down the road, because the site re-scars, causing the stricture to narrow again over time.  Once it gets wide enough, that will happen less and less.  Below is an image that we got today - before on the left, after on the right.  I think that the zoom is a little different, but you can definitely see a change after the procedure.  See how tiny it was before?  No wonder the poor baby has trouble swallowing sometimes! :(  Prior today, she had been having a lot of reflux and gagging so we are hoping that issue will be improved with today's procedure.

Lucy had a much easier time coming out of anesthesia today than she did last month.  Although it still took her a bit to get her oxygen levels to a high enough rate for them to discharge us, it happened much quicker today.  We had talked with the anesthesiologist before the procedure and he was going to give her a slightly different dose/mix in the hopes that she would recover quicker and we are so thankful that she did!  Thank You to all of you who lifted us up in your prayers today.  We felt it!

She had a nice long nap in the car on the way home and tonight was such a gem.  She is always happy to be home, surrounded with those she loves the most and able to play with all of her toys. 

Someone challenged me to claim a verse this week, as we continue to face the long road ahead of us with Lucy's health.  So, Romans 12:12 is what I am holding on to:  "Be joyful in hope, patient in affliction, faithful in prayer."

Learning New Things

As I have mentioned before, Lucy loves all sorts of flavors - tonight I even let her get a little messy when I gave her a bit of chocolate pudding - as you can tell from her big smile, she loved it!

We have had a busy week - Jason is in Vegas for an event and I had to go into the office for 4 full days of training this week.  We are so spoiled to have my parents taking such good care of Lucy on weeks like this (and taking good care of us - shoveling me out in the morning and having dinner ready after a realllllllly long commute home in the snow).  Lucy is learning to play interactively with us more and more - like pushing toys to us and she still loves peek-a-boo and clapping and even ALMOST played with the dog tonight!  She's not crawling, but spends a lot of time on her hands and knees or scooting on her butt or belly and still would rather stand and jump than anything else.  She NEVER sits still!

We are preparing for another esophagus dilatation next week Tuesday, so with that brings a pre-op on Monday and another long day on Tuesday in Day Surgery.  We would appreciate your prayers that Lucy has an easier time coming out of anesthesia than she did last time.  I've talked to the nurses and her ENT office in preparation, so everyone should be better prepared, I hope! 

Through all things, we are constantly reminded that Lucy in God's hands.  Last week's sermon at church was very humbling for me and a good reminder of that fact.  Our pastor spoke about the promise he made to Abraham to make him the father of many nations - and that promise took  decades to fulfill!  I know that God will heal Lucy in His time, and I need to remember to be patient in the meantime.

Ready for bed in her adorable new nighty from cousin Kristie - even reading a book by herself like a big girl!

A few of Lucy's favorite things

As you can tell in this picture, Lucy still loves her pacifiers and we keep several on hand always!  In 4 years, when she's bawling on the way to kindergarten because I won't let her take her pacifier with to school, I may regret allowing her to have it on demand right now, but as we've said before, she didn't have any soothing methods in the NICU besides taking a pacifier and all of her docs have told us how important it is for her to maintain the ability suck and get oral stimulation since she is still fed mostly through her G-Tube.

On the other hand...we have been trying to help her learn to drink out of a sippy cup since she has never been interested in a bottle.  I think we've tried almost every type that has been manufactured - straws, no straws, valves, no valves, handles, no handles, soft plastic, hard plastic, etc, etc, etc.  She still doesn't like to drink anything beyond a few sips at mealtime.  We are hoping that the feeding clinic can help us with this dilemma so that she can get off this stinking feeding tube!

She's learned to shake her head "no"and it's the cutest thing.  It first started when I was singing to her, but I think that was just a coincidence, since she does it quite often now...here's a quick video clip.

Lucy and daddy got to visit mommy at work this week, and she got her last Synagis shot (to fend off RSV).  Other than that, we are hunkering down for the last of the winter weather here in Minnesota and enjoying a relatively calm household!

Growing Up

Doesn't she look so big?  Notice the double pacifiers...HA!

We have had a very uneventful week, which for us is great!  No doctors appointments, only a few calls to insurance and lots of fun family time.  She is definitely eating better than before her esophagus dilatation and if we could just teach her to drink out of a sippy cup, we would be able to start cutting down her G-tube feedings.  Currently, however, she still does not like to drink anything orally, but she would eat anything put in front of her (even though she's still only getting purees - not counting the newspaper she ate on Wednesday!).  We do give her "real food" in those little baby net things, which she can chew/suck on and get out a puree of sorts.  She'll eat carrots, potatoes, peaches, pineapple and even beans and rice in that thing and LOVES the taste of food that isn't baby food!

Lucy is geting to be more and more vocal and squirmy!  She is rarely quiet and almost never sits still.  Which, as you can imagine, leads to even more G-tube leaking, but I am hoping that she'll be up off her stomach and crawling soon and that the homemade G-tube dressing that we found will continue to keep her leaking somewhat at bay.  It's a huge pain and both Jason and I are so sick of changing her clothes and dressing 3, 4 or even sometimes 5 or 6 times a day!  I've been busy scouring message boards and talking to other parents who have had babies with G-tubes to get some ideas.  It seems like the medical community are very passive about the problem - they sort of leave it in the hands of the parents to figure out the G-tube dressing, leaking and corresponding skin care.  A HUGE Thank You to my aunt, Marilyn who got us some free samples of all different dressing and tape types to try out.

All in all, it's been nice to have a quiet week and next week will likely be same.  She is scheduled for her last dose of Synagis, but no other appointments.

So, we will continue to hope for warmer weather (am a broken record on that statement?  Seems like spring is taking its sweet time coming to Minnesota to stay!) and enjoying Lucy's sweet personality!  Every day she seems less and less like a baby and more and more like a little girl!

Meeting sweet little cousin Hannah a few weeks ago

Hanging out with great-Grandpa Los and sitting still like such a big girl!

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.