Everyday lives of the Meabon Household

Sunday, September 26, 2010

There's No Place Like Home

In case you missed the previous post, Harper is home! When we started talking about her initial homecoming, The Wizard of Oz kept coming to mind. I wanted a way that we could explain the first two months of Harper's life to her early on and how special the people that took care of her were so I created a little book for her. As you can see, this project grew and grew! I wasn't quite sure how to even begin to say thank you for all that her NICU team did for us so I ended up making books for her primary team too.

I've included Harper's book below. You can click on each page one by one to read along.













HOME!



Yes, that's right - HARPER IS HOME! We got the good news on Friday but were hesitant to say anything until we actually had her at home. Methodist made the process so easy - we showed up at 9:45am this morning and were in the car by 10:45am. Unfortunately, we didn't get to personally say goodbye to most of her primary team since many of them had the day off. They have been so amazing to work with and we have grown to love each and every one of her team members.





It was so fun to see her experience the sun and a breeze on her face for the first time and the weather today couldn't have been better - I think that was God's personal homecoming gift for Harper.





Jared and I were a nervous wreck this morning. It hit us that the day we've been waiting for was finally here, but along with that comes a huge amount of responsibility and worry. I think Jared drove 20 miles an hour the entire way home! Harper was bright eyed the entire ride home and I'm sure was completely overwhelmed with so many new experiences at one time. Now that we're getting settled, its started to feel so natural to have her here.



Harper was welcomed home by yard art provided by Honey and Grandy (with the help of Joe Kruger and Cindy Knocke - thank you!).



Harper's had a few meals but has slept most of the afternoon. Jared and I keep looking at each other and just letting out huge sighs of relief. Now we can start to be full-time parents - let the lack of sleep begin!



Thursday, September 23, 2010

Still Special

We were suppose to bring Harper home today but our little girl will, once again, spend the night in the hospital. But while today isn't everything we'd hoped it would be, it's still a special day and still our 4th anniversary. A situation like we've been through the last few months can either make or break a marriage and I am so thankful that I'm married to the man I'm celebrating this day with. There is no way I could have made it through with anyone else by my side.

I was speaking to another NICU mom today who is in a horrific domestic situation and it really puts our life in perspective. Yes, it...well, sucks that we don't have our little girl home but we have a home to bring her to, family and friends to support us, each other to lean on and a God that's in control - much to be thankful for! Amazing that this conversation came when I was feeling so sorry for myself - thank you Lord for my dose of reality!

We also have some amazing friends that left a gift card for our anniversary dinner in the mailbox last night. So tonight we are heading to a movie (we figure it might be the last for awhile) and then off to dinner. Thank you Kathryn, Courtney, Krisana, Lisa, Sarah and Julie - I love my friends!

Harper is starting to feel better. Her fever has broken and she's perking back up to her normal self. Her veins are a different story. She's on her fourth IV line in three days since her veins keep blowing. She's had one in the hand, one in the head and two in her feet. Poor girl is pretty tired of being poked and today was a bit of a rough day since she hasn't gotten a lot of sleep.

There is, once again, some conflict regarding what's causing her to be sick. Our neonatologist found a puss pocket on her omphalocele that he thinks is the source and is happy she wasn't sent home before this was discovered. Our surgeon thinks the puss pocket was normal leakage and that she has a virus that she wouldn't have caught if she was out of the hospital. Either way, I don't like my baby being sick and she definitely wasn't herself. The compromise was to have her on antibiotics until the culture from the ooze was identified. The culture came back today and it came back as staff infection. Staff can also grow on normal skin so the debate goes on as to if the O is really infected or not. I'm hesitant to jinx it again but I'll go ahead and say it. If we can wean her off the IV and onto oral antibiotics, the thought is that she can be home by Monday or Tuesday.

Thank you for your continued thoughts and prayers. We will have Harper home before too long, tonight just wasn't the night.






- Posted using BlogPress from my iPhone

Monday, September 20, 2010

Red Light, Green Light


Do you remember the game Red Light, Green Light? Someone yells "green light" and you run as fast as possible to the finish line. But when they yell "red light", you must stop in your tracks. Well, Harper just yelled "red light" at Jared and me.

When we received the "green light" for discharge for Thursday, we immediately started making a list of everything that needed to be done: wash her sheets, pull out and assemble the baby gear that's been waiting in boxes for Harp's arrival, make a Babies R Us run for diapers/bottles/sleep gear, install the car seat, start packing up all of Harper's stuff at the hospital, get the medical supplies we need at home. I've been frantically checking off all of the items on the list to make sure we were ready. And then my phone rang at 6am this morning...

Jared and I came to the hospital yesterday morning. We had a little play time, some breakfast and then she fell asleep. My mom came up to "babysit" while we went to watch the Steelers beat the Titans. Harper slept the majority of the day and we just figured our child was preparing herself to come home since Sunday afternoon naps are a staple in the Meabon household. She was a little fussy but nothing too bad and had a temperature of 99.2 but was gassy when her temperature was taken so not alot of merit was given to the temperature.

Apparently through the night, her temperature continued to hover in the 99 range, peaking at 99.9. When you have a child in the hospital and your phone rings at 6am with the doctor's cell phone on your caller I.D., a small amount of panic runs through your body. Dr. Kenton started with, "Your baby is fine.". Whew, thank you for that. But there was concern for the lingering fever so he wanted to be cautious and start antibiotics. Nicci, one of Harper's primary night nurses, asked that they spare her head - sweet girl's gotta have her hats - and they were able to establish a line in her hand. So we're back on the IV for at least a three day course of antibiotics. They are running tests to see what's causing the fever. If it is a bacterial infection, she'll have to stay on antibiotics for 7-10 days but if it's a virus and the fever clears on it's own, it'll just be three days on the IV. Unfortunatly, she has to be off the antibiotics for 24 hours before she can be cleared to go home so our Thursday homecoming has been postponed, hopefully only by a couple of days.








Poor Harper was like a wet noodle all day. She slept the majority of the day and, when she was up, was so pitiful. My little girl just didn't feel good - it's heartbreaking to see your baby sick!



This afternoon Harper gave us a real scare and spit up bright yellow fluid. The team immediately ordered an X-ray since this could indicate distended bowels or a bigger problem with her omphalocele. The X-ray appeared normal and she seemed good after a thorough exam but since she has an IV already, Dr. Kenton wants to run a CAT Scan to take a better look.

As of tonight, Harper's fever is decreasing so I'll keep you updated over the next few days and hopefully, our girl will be snug in her own bed in no time!

Saturday, September 18, 2010

Do You Know What Today Is?





Next Thursday, Jared and I will celebrate our fourth wedding anniversary. Four years ago, Harper was just a whisper in our future as we said our I Do's and committed our lives to each other. We've been together for over 7 years and we've grown so much from the youngsters that met each other while working at the Four Seasons in Dallas.

This year, September 23 will take on a whole new meaning. We were told today that we will be taking our sweet girl home on Thursday! Yes, that's right. No more NICU for Harper! What an awesome anniversary gift!





We've had a busy week leading up to today's big news. On Tuesday, Jared and I met with Harper's pediatrician, Dr. McCray. She received a phone call from our neonatologist, Dr. Kenton, making her aware of Harper's condition so she was all up to speed (yet another reason why we love Dr. Kenton). We are so happy to work with her and have heard nothing but great things about her. In fact, she is Dr. K's pediatrician and that of a group of the nurses in the NICU. How's that for reassurance! Dr. McCray will take over where Dr. Kenton leaves off when we leave the NICU next week.




On Wednesday, I had a long talk with Harper's surgeon, Dr. Robertson, about the plan moving forward. Harper will continue to see the surgeons on a regular basis. It's still too early to make a definite decision regarding her surgery or surgeries but there is a chance they might perform her omphalocele repair in stages. If multiple surgeries are required, they would remove the existing dome "scab" of her omphalocele and connect the existing skin with human synthetic skin within the next few months. They would go back later and repair her abdominal wall. Otherwise, they would repair everything at one time. Since Harper's O contents are too large to fit in her body without risk of damage to her liver, we will need to wait until her abdomen has grown. We hope surgery can take place within the next year. Her abdominal muscles aren't connected properly causing her to be behind developmentally so the sooner we can have the surgery, the better. The surgical team is still happy with Harper's O and how it's been handled so far. This is absolutely a credit to Dr. Kenton and his team. We continue to see healthy skin growth and shrinking of the size of her omphalocele.

On Monday Harper was fitted for her prosthetic O cover and we received the final product today. We were able to select the look of the cover, but were a little limited in the selection. With a little help from some of the nurses, we finally selected a zebra print - I know, a little annoying but we had a limited selection. This will be worn with her car seat to protect her O from the car seat straps and provide additional protection in case of an accident.



So from now until Thursday, we'll go through some one on one training with the staff to make sure we are ready for all of Harp's specific needs. We're also trying to make sure we cover all of the details on the home-front, including preparing Rooney and Kitty for the arrival of their little sister - they have no clue what's about to hit them!

And now, I bring you the top 10 reasons we can't wait to be out of the hospital and bring Harper home:

#10 - not having to wear a nametag to see our daughter or provide an identification number to check on her

#9 - not having to park in a parking garage every day (if you know how anal Jared is about our cars, you understand this one)

#8 - getting to have a wireless baby - Harper's been connected to some kind of monitor since day one so we are happy to have a baby that's not on a "wire leash"

#7 - being able to sing to Harper without having an audience...Jared's go to: Christmas songs (year round); Brooke's go to: rap music (I know, inappropriate but when you can't carry a tune, rap is an easy pick)

#6 - not having to pack 17 bags to go to the hospital each day

#5 - having time to take care of our house - yard of the month award, here we come!!!

#4 - spending QT with Rooney and Kitty - they are feeling a little neglected

#3 - finally getting to use all of our cool baby gear we received

#2 - introducing Harper to all of her friends and family (although we might have to do this a little at a time as we on complete germ scare from the medical staff)

And the #1 reason we can't wait to have Harper home...getting to see her, hold her, kiss her, love her whenever we want!!!




Thank you Lord for this AWESOME gift! Counting down the hours until Thursday!








Oh, and we want to wish a very warm Welcome to the World to Mateo Andres Puccio who was born Thursday afternoon. Congratulations to Krisana, Juan and big brother Diego!

Sunday, September 12, 2010

Harboring Memory


Hooray! We've reached the 8 pound mark and Harper is still eating ravenously. NICU babies are typically kept to a pretty rigorous schedule of eating, dirtying diapers and sleeping and each event is recorded and ensured the baby is on time for each event. Babies would preferably eat every 3 hours, have a poop diaper every other diaper and fall asleep about an hour after eating for 2-3 hour intervals.

Well, Harper's set her own schedule and it seems to work for her. She's now eating every hour and a half - and not just a snack but full on meals with each feeding! She's having one...well, explosion each night. Jared had the pleasure of experiencing this while feeding Harper on Friday night. I wish I had a camera because the look on his face was classic - welcome to parenthood! And Harper's going hours, as in 4-6 hour stretches, between naps at least once a day. When she's awake and not hungry, she's wanting to be a social butterfly, When Harper wakes up for social hour and we're not with her to give her full and undivided attention, she'll start crying and squirming until a nurse walks in her room. She's fine until they walk out again. The team has started unhooking her from her monitors and bringing Harper out to help them chart or just walk around to visit. Within the last couple of weeks, Harper's Happy Hour starts at 4am with the night team. She must like to say goodnight to the overnight team and good morning to the day crew at shift change. Unfortunately, Harper's going to have a rude awakening (pun intended) when she finally comes home because I don't see myself being too entertaining at 4am!

We continue to make baby steps to get ready for a possible homecoming. On Friday night, Jared, my mom and I took the High Risk CPR class- talk about making a new parent anxious!!! I'm so glad we have the training and will be well prepared but after acting out scenario after scenario of choking baby, I don't think we'll take our eyes off Harper for months, not even to sleep!

Harper will be fitted for a car seat prosthesis tomorrow to protect her omphalocele when she's in the car. A little ironic, since I don't see myself wanting to leave the house too much once she gets home. After only being there to sleep for the last 6 weeks, it might be near impossible to pry me out of our front door.

After cheering on the Red Raiders last weekend, Harper was so excited to support the Pittsburgh Steelers this Sunday and got all dressed up for the game. Unfortunately, she spit up on her yellow kimono so the pink just had to do. And yes, she does have her very own jersey but will have to wait until next season when it fits to sport it.




It seems like we've been in the hospital for such a long time. In reality, when we look back on Harper's life I'm sure this time will just seem like a blip on the radar. I've had a number of people make the comment that we probably won't even remember this time in Harper's life. While this sounds like a great concept, I pray daily that we won't forget this time, these raw feelings, this absolute yearning to have our little girl home with us. I pray that God keeps me conscious of how vulnerable I am and how much I need and rely on Him right now. I pray that when life becomes normal, when the daily grind sets in, when Harper tests our nerves or cries straight through the night, we can remember our lives as they are right now and we can be thankful for that daily grind, those tested nerves and that sweet baby that cries through the night under our own roof. I ask that our friends and family help to remind us of how far we have come when we see Harper jump off a diving board for the first time or run in a Field Day relay race or ride her bike without training wheels. I pray that what we've been through in the first years of Harper's life will make us better parents, but also better children, better friends and better people. I hope we're always aware of just how lucky we are and what an impact this little gift has made on our lives.



Tuesday, September 7, 2010

Harper in Action

Here's a little Harper in action. I know, its a little long but I figured her Grammie might want to see the whole thing. We even caught a smile in there!

By the way, I hate listening to myself on video so feel free to turn down the volume as to not hear my commentary and save me a little embarrassment.

Enjoy!

video

Sunday, September 5, 2010

Happy One Month Harper!





I can’t believe our baby girl turned one month old yesterday. It’s hard to imagine our lives pre-Harper and it feels like she’s growing up and changing every day. Jared laughed at me today because I looked at her hands and said they didn’t look like newborn baby hands anymore! It’s even harder to believe that she’s been in the NICU for 32 days – that’s exhausting to think about. Conventional wisdom says that in order to make something a habit, you have to do it consistently for 21 days in a row. Well, we’re well beyond that and, personally, I’d like to break this habit.

Harper had an interesting one month birthday, to say the least. As mentioned previously, there was a wet spot on the bottom-side of her omphalocele that was causing some concern. On Thursday night, I spoke with Jennifer, Harper’s night nurse, during my 2am pumping. She noticed that the wet spot was causing some leakage onto Harp’s blanket and just wanted us to be aware. Dr. Kenton was planning to be out for Labor Day weekend but came in early on Friday morning to check on our girl before he left. Jennifer mentioned the leakage to him and he asked that we keep a close eye on it and let him know if anything came of it. I came in Friday morning and, after feeding and holding Harper for awhile, saw that there was a thick layer of green puss on her stomach. I called over Jeremy, her day nurse, to see what he thought. Hmm, could be the dreaded infection…. Jeremy cleaned the area and swabbed it to turn into the lab for testing. He also had to draw blood to make sure there wasn’t infection in Harper’s blood stream. Jeremy got in touch with Dr. Kenton to let him know what was going on. Since the area leaking was her omphalocele and this is so close to major organs and her blood stream, Dr. Kenton decided not to waste any time and move forward with antibiotics until we got the test results back.

Jared came to the hospital right about the time that Dr. Kenton made the call for the antibiotics. Harper has blood work every Monday and Thursday but it’s usually done during shift change to spare us from having to see our baby poked with a needle. I witnessed the blood draw on Friday and I wasn’t a huge fan of it but stayed strong. The antibiotics were ordered via an IV and Jeremy suggested I not hang around for the IV line to be put in. Jared decided to hang around and be strong for his little girl so I headed out for a walk. About 5 minutes later, I looked up only to see Jared walking my direction with a sick look on his face. The IV proved to be a bit much for him too! They tried 3 different spots in her arms and hands with no luck. Now, I’ve always known the head is an option for an IV line for babies. In fact, the nurses prefer it since the veins are the most accessible and it’s the least likely area for the IV to be messed up due to a baby squirming. Well, to the cranium they went! The irony about the whole thing was that Methodist has photographers will come to do newborn portraits. We’d held off on having Harper’s picture done but one of our favorite nurses, Becky, suggested that we have Harps picture taken before she lost her whole “newborn look”. We’d set up an appointment for Saturday morning at 10am but when the needle went to the skull, we decided it might be best not to professionally document that time in Harper’s life! Not only did she have the pinhead look going, but she also had an eye infection, some baby rash on her forehead and eyes, cradle cap causing a little dandruff and the IV causing a Harper’s Hats hiatus - poor thing was a mess for her birthday!

We still celebrated, sang a little happy birthday and I took the obligatory one month photos. Sweet Jennifer, who loves dressing up Harper at night, made a make-shift IV bow so she could still be stylin’ and profilin’. She also made her a one month birthday sign for her bed. Thank you Jennifer!!!







And just like that, we came in this morning to find our little girl back in one piece! The infection results came back negative, the IV was removed, the rash and eye infection are looking much better (I wonder if the antibiotics had anything to do with this) and her cradle cap is going away after a good bath. Her morning nurse, Leslie, was a fellow Texas Techsan so she had Harper all ready for game day.



Harper received an early birthday present from the nursing staff this week as well - she was moved from our corner cubicle to the Tinker Bell Suite! The NICU is made up of two large rooms, divided into quad cubicle areas, and a few small rooms along the north wall of the large rooms. On Wednesday night, the staff had some new babies that came in and needed to shift some of the existing babies around. Since Harper is a “long-term” stay, they decided to move her to one of the small rooms for a little more privacy. The rooms have Disney characters painted on the doors and we were put in the Tinker Bell room – very fitting I think! We’re happy to have a little more privacy and space to spread out. Thank you Charge Nurses! I’m also hoping this will get Harper use to a quiet space for when she transitions home. After being raised in the NICU with all of the commotion, beeps, buzzes and alarms, I think our child might need a freight train passing by her bed each night to fall asleep!




Jared was a little over it all yesterday - can you tell?

Each nurse cares for two babies during her shift. Our new neighbor is a cardiac baby so he’s required to have nurses that are on the certified cardiac team as his primaries. This is good for us since it means we should have only a handful of nurses that we will work with creating more consistency in care for Harper. Many of Harper’s original primary team nurses are cardiac trained so we are ensured to continue with these nurses. Unfortunately, a few of our favorites are not on the cardiac team so we might not be working with them anymore and we have some new faces to meet. We’ve found ourselves making more recent night trips to Methodist than we’ve had to in the last week or so to meet new night nurses but hopefully we’ll see this taper off again once we are on a regular rotation.

You’ll notice that Harper has a new addition to her wardrobe – kimono shirts. The hospital has a standard white with orange stitching that they provide but, of course, this wouldn’t do for stylish Harper. Her Honey and her mother are now on a shopping crusade to find more kimono shirts. I was able to score a few at Babies R Us but thanks to Zulily.com and Etsy.com, she has more on the way.

We’re still continuing to hear how well Harps is doing and some whispers of home so Jared and I are doing what we can to prepare ourselves. We don’t want anything on our end to hold up the process once we get the green light – whether that is in 2 weeks or 2 months. We’ve signed up for the NICU Baby CPR class on Friday night. Whoa, how Friday nights have changed for us! We’ve also lined up an appointment to meet with our potential pediatrician so we’re excited to meet her and get to know who will care for our baby girl. Lastly, we’re going to be trading in one of our cars for a “mom-mobile” so the car browsing we’ve been doing over the last few months might soon turn into car buying. I’ve never driven an SUV before so if you live in the San Antonio area, I will be happy to post pictures of my new ride and you can watch out for me – I can be a little dangerous behind the wheel of a car, not to mention a big car! The plan is still to discuss details with Dr. Kenton once we hit the 6 week mark so I might have an update in a week and a half. Don’t worry, I’ll keep you posted on this for sure.

Thank you for all of your prayers and thoughts for Steve. He was dismissed from the hospital on Friday and VERY ready to get out. He’s feeling much better and will meet with the doctors this week to discuss surgery on his colon. We’re interested to see if they will continue to push for it given his other ailments. We laughed at dinner last night because between Steve and Harper, our family has the entire abdomen covered as far as issues go.

Lastly, wreck ‘em Tech! Way to go Red Raiders in the first football game of the season! We love football season and with Steelers Football starting next Sunday, Jared’s about to jump out of his skin. And yes, Harper already has Steelers gear thanks to our friends Cate, Kristen, Lindsey and the Burdettes. She will be fully decked out and photographed next weekend.

Much love to you all,

Brooke

A little Harper video action:
video