Comparing my two children

Over the past eight weeks, I keep getting the questions that most mothers of newborns get - "How are you doing? Are you all adjusting? Is Harris sleeping? How's Harper doing with having a baby around? Things are pretty hard with a newborn, aren't they?"

To be honest, yes, I have my days where I wake up, put on my "work out gear" with no plans of working out, throw on a baseball cap and get asked by my husband at the end of the day if I plan on taking a shower at all. Things can get pretty stressful when Jared is out of town for work, I have a toddler that is perfecting the art of the tantrum and a newborn that's screaming hysterically and only my boob in his mouth will make him stop....unfortunately, I have the tantrum throwing toddler in the bathtub so the newborn will just have to wail a little longer. Yes, I've had a few times when I've been up all night with Harris and just as I get him to sleep at 5am, Harper decides to wake up at 6:30am, rip roaring and ready to go for the day. And I might have repeated over and over again once or twice, "Lord, give me patience. Lord, give me patience. Lord, give me patience.".

However, today Harris is exactly the same age that Harper was when we brought her home from the hospital. That seems crazy to me! It feels like we've had Harris home for forever and that he's changed so much in just these two short months. So while we have our rough days and nights, we are also so grateful to have had a healthy baby at home this time around. It kind of puts things in perspective.

Now for those moms that might read this blog and are expecting a baby with a stay in the NICU, I don't say this to make you dread what is coming but I've realized a few things in comparing my two experiences:

1. Once your baby is home or if you have other children later down the road, I hope you can pause in the middle of a sleepless night with a screaming baby to appreciate being home and being the one to hold your baby. I am still thankful that I am able to walk just a few short steps across the house to check on my babies.

2. I'm not sure if this is the case with all moms of NICU babies but I realize now that I didn't fully "bond" with Harper until we had her home. Sure, I loved her but I didn't really feel like she was mine when we were in the hospital. People kept talking about that motherly love but I don't know that I fully got it until Harper was at home with us and was 100% our responsibility. I've noticed with Harris that it kicked in much earlier and I think much of that has to do with Harper's time in the hospital.

3. It made me mad at the time when people would tell me that Harper's first year of life with all of its heartache and difficulty would seem like a small blip on the radar screen. But you know what? It's true! As I watched Harper run and play with the other kids at gym yesterday, it was amazing to think how normal our lives are now and how much we have to be grateful for in such a small amount of time. The normalness of watching my little girl learn new things each day, of watching her try new challenges, learn new social skills and be amazed at her curiosity has taken over those terrifying thoughts and fears.

I know they say not to compare your children to one another but in times like these, I'm happy to do so because it makes me stop and say, "Lord, I am thankful. Lord, I am thankful. Lord, I am thankful."

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!

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.






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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!

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!

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.

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!

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:

One Big Happy Family

We're currently working on getting the whole family under one roof...unfortunately, that roof is Methodist Hospital’s roof and not home. To add to the chaos that is already our life, my step-dad Steve, was admitted to Methodist on Sunday afternoon. He came down with shingles the week before Harper arrived and has been struggling with feeling bad since then. Last Thursday, he took a major downturn and increasingly got worse as the weekend progressed. On Sunday, I went to their house to find him half delirious in pain and sickness and had to do a little convincing to get him to go to the hospital – I must say, doctors make the worst patients! He's now been diagnosed with prostatitis,abscessed diverticulitis and has a hole in his colon that will need repair with surgery. I keep waiting for Ashton Kutcher to show up telling our family that “we’ve been punk’d!” Oh, if only that was the case. Brent and Lynn both came in town yesterday so it was nice to have some moral and sibling support. Steve’s expected to be in the hospital a few more days while his system repairs itself and we’ll discuss the options for surgery to repair his colon when the time is right. I have the feeling his body has taken quite a beating from the chemo over the last year and a half and is his immune system has decided to take a little vacation. Well immune system, hope you’re having fun in Hawaii! Needless to say, the last few days have left us all feeling a little frazzled. My friend, Lisa, whose family has recently had their fair share of time in Methodist, began referring to the hospital as “jail”. I now fully understand this description since all I want to do is break my family out of there! I know God wouldn’t give us more than we can handle but our plate feels FULL right now.

The positive that came out of the last couple of days was that my brother, Brent, was able to meet his niece for the first time! Brent came in town for my delivery and wasn’t too thrilled to hear that the NICU only allowed parents and grandparents in. He borrowed (and when I say borrowed, I might also mean stole) a pair of hospital scrubs in an attempt to sneak in to see Harper. The Methodist NICU should be very proud of the gatekeeper at the reception desk because Brent was stopped a total of three times during my stay in the hospital after her delivery and given a very stern talking to. They even threatened to take away ALL of our passes if he tried one more time so he decided to play by the rules and wait until Harper was released. However, due to the turn of events over the weekend, I think the nursing staff started to feel sorry for us. I ever-so-politely asked if there was any way they could bend the rules while Brent was in town since Harper was now an extended stay patient, I was given a five minute pass for Uncle Brentie to sneak in for some Harper lovin’. It made me so happy to see my big brother with my little girl in his arms. He soaked up every minute they were together and I can’t wait for them to get to spend some real bonding time together. You didn’t hear it from me, but he might have gone a little over the five minute time pass. It was pretty hard to tear him away from that sweet little nugget!







Jared and I are going through our own little mini-excursion on the Emotional Expressway. We were spending some QT with our girl, H, yesterday when the nurse practitioner for our pediatric surgeon showed up. We were greeted by, “so, are you all getting all ready to take Miss Harper home?”. Um, ex-squeeze me? What was that you said? Home? As in, HOME? As in, our home? I’m sorry, I don’t think I heard you right. Oh, yes, that’s right, she was talking about our home…and our daughter…and us taking her there. According to Barb the NP, Dr. Roberston feels like Harper isn’t doing anything in the hospital that we can’t be doing at home. Well, as you can imagine, that pretty much caught us off guard and in about 15 minutes, we went through the full gamut of emotions ranging from excitement to fear to worry to glee to where in the heck is this coming from???? We tried not to get excited or to get our hopes up in anticipation that this could just be a random suggestion being thrown out there. Ready for a U-turn on the Expressway? This morning, Dr. Kidd, one of the other pediatric surgeons on the team, mentioned that the skin around Harper’s O could be constricting, not allowing the contents of the omphalocele to go back in her body. His suggestion is to possibly remove the hard, scabby cover from the O and place a mesh over the contents to force them into her body - a procedure that would keep her in the hospital a lot longer and also open up a high possibility of infection. Ready for yet another U-turn? I, then, had a talk with our neonatologist, Dr. Kenton, this morning after Dr. Kidd showed up. Dr. Kenton is very pleased with Harper’s progress and doesn’t think we should mess with what is working. He’s been happy with her progress in the NICU and his observation is that the O seems to be shrinking in size. So as you can see, it doesn’t sound like anyone is on the same page about our immediate future. Jared and I have always said that, while we would love for Harper to be home and will be thrilled on the day we get that green light, we would also prefer to err on the side of caution. Should that mean another 6 months in the hospital if it’s the best thing for our baby, we are on board. Now, granted, we don’t think it will be 6 months but we don’t necessarily feel she’s ready to come home tomorrow. What we’ve discussed with Dr. Kenton and we hope to move forward with is to keep Harper as she is now for another two weeks. At that point, let’s take a look at Harper’s condition, see what kind of progress she’s made and then be in a position to re-evaluate. I’m feeling we might have a team meeting in our near future to ensure everyone involved is on the same page. I’d personally like to exit off of the Emotional Expressway and I think this might be the closest approaching exit.

As for Harper, she’s weighing in at a whopping 7 lbs 8.4 oz. She is continuing with her healthy appetite and is growing before our very eyes. We’ve also changed the treatment of her O in the last week. There was a spot on the underside of her omphalocele that wasn’t drying out completely on unwrapped days. The problem with a wet spot is that it can harbor infection. When treating with betadyne, the goal is that her ompalocele dries out and skin grows underneath the “scabby” part. After trying a few new wraps for her O, the team discovered that her O is actually pretty stable on its own due to the skin growth that’s already taken place. We’re still painting on the betadyne but we are now leaving the O unwrapped and actually free standing all of the time. Her O is also stable enough that we can hold her all of the time. Oh, how nice to be able to walk in and pick that little girl up any time we want to! (Well, except for the hours of 6am – 8am and 6pm – 8pm when we can’t be in the NICU. Always an exception to normal!) As you can see from the pictures below, the skin growth is the pink shiny skin at the base of the omphalocele. The top part almost has the texture of dry leather and the scabby parts around the base are starting to flake off.





I’ve really debated whether or not to post pictures of Harper’s omphalocele. I am personally fascinated by the details but I realize it might not be something everyone wants to see. I came to the conclusion that these need to be posted when I was trying to do some research on different ways to wrap an omphalocele. One of my first references when looking for information tend to be the blogs of my fellow O moms and I feel that for those moms that will be researching long after Harper has her final surgery, these pictures will be helpful.

My last little bit of bragging as a parent is that the nurses are now calling dibs to take care of Little Miss Congeniality. We have an AMAZING team of primary nurses and, except for the occasional shift, we have days and nights filled with her primary team. They are all so skilled and talented but also patient and caring for Harper and for her tightly-wound parents. So many of the babies they care for are preemies so they aren’t use to taking care of babies as big and responsive as Harper is. She loves to stare people down, especially when she’s attacking a bottle. We had two firsts today - she started making her first cooing noises for me and she flashed Jared her first official smile. I say official because I think some of the grins we’ve previously gotten were gas related. Jared had to fly to Houston for business today so he stopped at the hospital to say good morning before he left. Becky, our nurse, told me that when Jared picked his daughter up, she smeared a huge grin on her face. Of course, Jared called to tell me all about it but I see the writing on the wall. That little girl is just going to flash that grin at her father from here on out and he will be putty in her hands! This could be an issue!

Prayer requests: Steve as he continues to heal, my mom as she is carrying a heavy load with all that is going on and feeling pretty frazzled, Harper as she continues to grow, and, lastly that Jared and I can be led to make the right medical decisions for Harper.

Love to you all,

Brooke




Harper's Watermelon Hat


Harper Loving Her Binkie


Wreck 'Em Tech!

Groundhog's Day

As of last night’s unwrapped weigh in, Harper came in at 7 lbs 3.7 oz! She continues to put on the weight and looks like she’s filling out. Her cheeks are getting nice and chubby, her coloring looks great and her body is starting to look proportionate to her head. There was a little while there that her head was looking a little large so I’m happy she’s losing the bobble head look. Harper continues to increase her feedings and last night took 100 cc’s at her 9pm feeding. She’s taking anywhere between 70 – 90 cc’s on a regular basis and we hope this continues to increase.

Harper has discovered the power of her lungs and vocal chords. Wow, and I mean, WOW! The child has learned how to scream at the top of her lungs. Harper has been a super mellow baby up until now, easily pacified by her, well, pacifier (hence the name, duh). As of this week, Harper is perfectly fine and content until hunger strikes her. I’ve never seen anyone go from utter happiness to rip roaring temper tantrum in a matter of seconds! When she is hungry, she’s hungry NOW and she wants that milk five seconds ago. I was talking to the nurses about this today and their laughing comment was, “she’s just like a real baby”. Now I don’t feel so bad for being the only one who thought this way. So I guess we’re taking one more step into normal parenting by having a child that cries bloody murder when she’s hungry. I should take this as a good sign but it still puts me on edge and running around like a chicken with her head cut off when I see those big tears, that red face and hear that scream.

As far as great news, we got the go-ahead yesterday to hold Harper on unwrapped days. Woo hoo! We have to be very careful with her omphalocele and I’m not breastfeeding when she’s unwrapped since I have to “football hold” her to feed. Since her O is tucked under my arm and not really in sight, I feel safer bottle feeding her when she’s unwrapped. But this means we can love on our little sugar any day of the week – not just every other day!

We had a few little high stress situations this week as well. Dr. Kenton was on vacation over the weekend so Dr. Shapiro, the fellow that’s been assisting with Harper since Day 1, took over her wrappings and treatment. As much as we’d like all of Harper’s medical team to work 7 days a week, we figure everyone needs a little break too and Dr. Shapiro takes Sundays off. Knowing this, we came in on Sunday morning expecting to assist the substitute doctor with Harper’s wrap job. This doctor had only seen Harper’s O wrapped once. As of today, I’ve now seen the wrapping process 20 times so was hoping to oversee and offer “suggestions” where needed. Unfortunately, when we arrived on Sunday, the doctor had already visited and had already wrapped Harper’s O. Jared and I walked in and immediately knew it didn’t look right. We asked the doctor to come see if it could be fixed but there wasn’t much done to fix what had already been done. I didn’t want to throw a big fit and thought, well, it’s only 24 hours. By Monday morning, the dressing was in complete disarray and when it was removed, it was discovered that the dressing had been rubbing the base of her O and had caused some bleeding.

Our other point of concern this week has been, again, the omphalocele. The base of Harper’s O is being wrapped with gauze which is then wrapped around her body for support. After the gauze, a band is placed at the bottom of the O to further secure the O. I’ve included a picture below from August 9 but her O is currently looking smaller than it is in the picture. There’s a portion of the base of her O that doesn’t seem to be growing skin very well and is remaining moist and wet. When her gauze were removed both yesterday and today, there was a smell coming from that area and its leaving a wet substance on the gauze. My immediate thought was infection, one of the worst things that could happen now. Dr. Kenton doesn’t believe that its infection but is pretty concerned with the area and keeping it dry. We’re currently discussing new ways to wrap her O so that the area remains open to the air and can dry out. Suggestions? Anyone? Anyone? Bueller? Bueller????



As I’ve mentioned before, our goal for Harper’s omphalocele is epithelization. We are making progress and her team continues to say that her O is looking smaller. We measured on Tuesday and the circumference of the O has gone down ½ cm. The main concerns moving forward are infection or that the surface of the O, which has taken on a dry leather texture, would crack. Both of these continue to be very real obstacles and my current “demons in the night”.

I made the comment yesterday that I felt like I was finally getting my arms around my emotions and settling into a normal routine. Well, I might be kidding myself about the emotions thing but I do feel like we’re a little more routine. Today was the first day I was allowed to drive since my C-Section so this, in and of itself, offers some much needed freedom. For the most part, we have the same routine over and over each day. Weekends tend to be a little different since Jared spends the majority of the day at the hospital with me but I can’t help but feel like I’m living in the movie Groundhog Day. The alarm goes off each day and I go through almost the same routine, the only difference being wrapped and unwrapped days, but now that won’t prove to be very different either. Oh, how nice it will be when we can finally bring Harper home and fall into a routine that Jared and I decide is best.

I’m currently reading a book called Jesus Calling which is just small daily devotionals to start each day. I feel like almost every day that I read this book, God is talking directly to me and the situation I’m currently facing. Today’s, once again, rang true saying, “Instead of desperately striving to maintain order and control in your little world, relax and remember that circumstances cannot touch My Peace.” Oh, how true for A-Type Brooke.

And I'll leave you with some pictures of Harper. The first are from her being burped and I just love the faces she makes! The last ones are from her 3 week birthday yesterday and I just thought they were sweet.

Emily Post Would Be So Proud

It’s Sunday and our Little Piglet has continued to eat and eat. As of last night’s unwrapped weigh in, Harper came in at a whopping 7 lbs .03 oz! Grow, Harpy, grow! Jared and I were so excited to hear that she jumped into the 7 lb range that we gave each other a celebratory fist bump last night when we got the good news over the phone with her night nurse. Harper is currently allowed to eat as much or as little as she wants since they are trying to get her use to feedings but her appetite is continuing to increase and she’s taking up to 75 cc’s during many of her feedings. We think her little cheeks are starting to fill out and before too long, she’ll be sure to have those baby fat rings – you know, the ones where it looks like the baby has rubber bands around their arms and legs.

But with the healthy appetite comes other challenges. Emily Post would be proud of our girl since she’s ever so shy to let out a burp. The challenge lies in a few areas, most of all that it’s pretty difficult to burp a baby that can’t be thrown over your shoulder, must stay with her belly facing upwards and has dressing that you try not to jostle too much while burping her. Upward-Facing Back Pat, Upright Circular Rub, Side-lying Chest Thumps, Cranial Rub Down – sound like yoga moves, don’t they? No, they’re just my own personal baby burping techniques. It can take up to 10 minutes to try to get her to burp and the result has been some uncomfortable spit up moments after many feeds. And when I say uncomfortable, I think it’s mainly for her parents, not for Harper. I’ve never felt so incompetent and trying to get that child to let a belch loose has me feeling like I’m trying to ride a bicycle to the moon.

Our other fun challenge has been Harper’s peeing habits. Because of her size, Harper is still in “N” diapers which are for babies below 10 lbs. Unfortunately, due to her wrap, the diapers can’t sit high enough on her backside. With the smaller diapers, she constantly has a little plumber’s crack sticking out. The result - we are finding that urine is leaking out of her diaper and ending up all over her bedding, leaking on to her gauze and also getting on anyone holding her. We’ve had to now attach a piece of plastic to her backside with skin tape and move up to the “1” diapers for 10lbs babies. So now Harper has a plastic cape hanging out of her oversized diapers – certainly a new fashion statement for all babies to come!

I think it’s the job of every parent to embarrass their children throughout their lives. I can remember when my dad would drop my best friend, Stephanie, and me off at school throughout both elementary and middle school. He would roll down the window as we were approaching our friends and yell at the top of his lungs, “Don’t kiss any boys today!” Well, Harper, welcome to the club. Yes, your mother is now publicly posting about your bodily functions. I love you and I apologize but I guess I’m just giving you an early start. And I’m sure this won’t be the last of those embarrassing moments.

We’ve been lucky this week to have had a rotation of some of our favorite night nurses – Jennifer, Amy and Melanie. This has saved us hours of sleep. When we come home from the hospital for the night, we feel much more comfortable calling to check in with the nurses we know and trust to take care of our sweet girl, rather than having to trek up to the hospital night after night to introduce ourselves to a new nurse. We’re still working on Harper’s primary team and trying to get a few more nurses added to our preferred list for both day and night but we’re hopeful that we’ll soon be off of meeting new nurses and only working with nurses we’ve requested for her primary team.

Lastly for Harper updates, our word for the day will be epithelialize.
Epithelialize - wound healing, or wound repair, is an intricate process in which the skin repairs itself after injury.
Can you please use the word in a sentence?
We are waiting for Harper’s omphalocele to epithelialize before we can take her home.
We hear this word over and over, day after day, since it’s our first big milestone to reach. Ever heard the expression watching paint dry? Well, want to know something slower than watching paint dry? How about watching skin grow? I stare down that omphalocele day after day, chanting “epithelialize, epithelialize, epithelialize”. We’re starting to see some small flickers of epithelialization but this skin growing thing is going to take some time and, until then, off to the NICU we go!

As far and Jared and I are concerned, we’re both hanging in there. My mom pointed out that she can really tell the difference in my voice and my spirits on wrapped days and unwrapped days. As I’ve mentioned before, wrapped days are days we get to hold our baby and it’s amazing what a high this can put me on. Jared and I have good days and bad days but we’re really trying to make sure that we’re on the same page through this journey. We’ve learned in the two and a half short weeks how important the constant communication is and are really making an effort to be overly cautious about this. Yes, we can both get testy, especially when it comes to being at the hospital and walking into unfamiliar or uncomfortable territory but we’re trying to be quick to acknowledge our shortness and quick to apologize. One of the best and worst things we heard from our neonatologist early on was how many NICU marriages he’s seen end in divorce. While it’s scary to hear, I also am glad that we are aware of this and that we are making a conscious effort, every day, to not be part of this statistic. Dr. Kenton said to make sure that we have a life outside of the hospital, both individually and as a couple. He encouraged us to do things to add some normalcy into our lives. We made today a shorter day, leaving the hospital around 2pm and had a movie date. It was nice to be able to slip into some popcorn and a Coke Icee and drift off into movie land for a couple of hours. When the lights came on and the movie was over, it was hard not to let feelings of guilt slip up for taking a little personal time but I have to remind myself that Harper needs a strong family to come home to – she needs parents who love each other and are able to get through the rough patches in life.

As for specific prayer requests, I ask that you keep Harper’s growth and her continued progress in your prayers. But I also have a few other requests tonight – my sorority sister Judy Beasley, whose husband Keith suffered an accident last year –please keep the Beasley family, the Foster family and Judy, Keith and their son Brooks in your prayers; Baby Lincoln and his parents, Elisabeth and Tendai, who are doing a great job of taking care of their little boy but feeling weary from the road they are on; Baby Fiona whose parents are preparing for her O repair surgery within the next month; Baby Colin and Baby Tobias who’s moms are preparing for O journeys of their own over the next couple of months; and Parker Arviso and his parents, Lindsey and Kris, who was hospitalized this week with ompholitis.

Love to you all,

Brooke