Everyday lives of the Meabon Household

Tuesday, August 31, 2010

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,


Harper's Watermelon Hat

Harper Loving Her Binkie

Wreck 'Em Tech!

Thursday, August 26, 2010

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.

Sunday, August 22, 2010

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,


Wednesday, August 18, 2010

Harper and Her Many Hats

And now modeling our Fall 2010 collection, Miss Harper Elizabeth Meabon. Harper is featuring hats from her extensive cranial wardrobe. Our young fashionista has become the envy of all the babies in the Methodist NICU, drawing oohs and aahs from nurses near and far. She struts her stuff while sleeping, during feedings and even during diaper changes.

When a girl can’t wear clothes, she’s got to make do with what she can. In Harper’s case, she is now in complete hat, sock and mitten overload! But boy is it fun to dress that little girl up. I have to laugh because the night nurses have caught on to the fun and we come in each morning to find Harper in coordinating outfits, sometimes even matching her blankets! As you can see, her Honey went a little overboard with hair bows (note the lack of hair) and they are now being attached to her hats. She’s still a little too small to fit into the majority of her wardrobe but don’t worry, we’re getting there so more pictures will follow.

Moving on from fashion to headlines, Harper has graduated to a big girl bed! She was previously in a Giraffe Bed that was heat controlled and hooded when she slept. We were able to move her to an actual crib this week since she regulates her body temperature so well on her own. We’ve added a mobile and a few other crib accessories to keep her occupied. The noise of the NICU doesn’t seem to bother her at all, which will work in our favor with Rooney’s barking once she gets home.

We are also excited that Harper is gaining weight, a huge part of her road to recovery. As mentioned before, I’m able to breastfeed her two to three times a day on wrapped days but otherwise, the kid is hitting the bottle…and hard. She is taking her feedings every 3 – 4 hours and taking about 50 – 65 cc’s per feeding. We’ve added a calorie supplement to each bottle and a vitamin supplement every 12 hours. Harper has two weights, one with her omphalocele wrapped and one when it is unwrapped. Since her wrapped weight is a little unpredictable, we are taking her unwrapped weight as closer to her real weight. Her birth weight was 6 lbs. 11 oz. She’d gotten down to 6 lbs. 6 oz. but as of last night’s weigh in, she was back to 6 lbs. 11 oz. (unwrapped)! Steve’s taken to calling her “Little Piglet” since she clearly has inherited her mother’s appetite. Guess we’ll need to get our girl running alongside her momma before too long! Well, let’s make sure that liver’s tucked back inside first.

Thank you for your continued prayers and support for Harper, Jared and me. I continue to be overwhelmed by the messages we receive and love that surrounds us. We are truly blessed and please keep the prayers going!

Harper - Two Weeks Old

Monday, August 16, 2010

Debbie Downer Strikes Again

Yesterday was one of the lowest days I’ve had since we learned about Harper’s condition and I just feel compelled to share. I’m not sure why but my emotions hit me like a ton of bricks. Now, let me preface this by saying Harper is doing great. Nothing has gone awry as far as her condition and she continues to be on an uphill slope. I think the fact that my little girl is stuck in the hospital just knocked me flat on my backside.

As I’ve said before, Harper’s omphalocele gets wrapped on even days in gauze and betadyne, while on the odd days, her omphalocele is left to dry out with just a support band around the base. The days when Harper is wrapped are the best days. We can hold our little girl as much as we want – to feed her, to burp her, to rock her, to lull her to sleep and just to plain smother her in our affection. These are the just wonderful and holding my little girl is something I don’t think I’ll ever take for granted. I’ll still hold her tight when she’s nine and has her feelings hurt on the playground, when she’s sixteen and has her first broken heart, when she’s eighteen and leaves for college, on her wedding day, on the day she has a baby of her own and even when I’m old and gray and just need a little Harper squeeze. I can’t get enough of that little Nugget! On the flipside, unwrapped days just seem to drag by. We can touch her and move her around but it’s just not the same as holding your baby in your arms.

Since we are still getting little sleep, are both exhausted and since it was an unwrapped day, Jared and I made the decision to spend yesterday with a few hours of the morning at the hospital and then go back to meet her night nurse that evening. Since she’s on a full feeding schedule, Harper likes to do two things – eat and sleep. We gave her a bottle, spent a good chunk of time with her while she was up and stroked her forehead until she went to sleep. We left for the middle portion of the day to see what we could do to rest and I completely fell apart. I felt like the most unfit mother to have a child that is ten days old and to only spend a few hours of the day with her. I know, I know. I need my rest to take good care of her, I don’t want my milk to dry out so need adequate sleep, she’s in great hands with the staff at the hospital, Harper won’t remember this period of time…I’ve heard it all but nothing can stop those feelings of absolute guilt and heart ache each time I walk out of the hospital. I just want my baby home, in her own bed, footsteps away from her parents. I want to be able to see her face when I wake up at 2AM instead of calling the hospital, asking for Baby Meabon, spelling it out each time because no one seems to know how to spell M-E-A-B-O-N and hearing the nurse give me a full update on what MY child did over the last few hours. Jared and I should be the faces she sees each time she wakes up instead of a different nurse most days and nights. I can’t help but feel completely inadequate when it comes to being a first time mom and not being able to parent just like “normal people” do. Oh, it was feeling like a long road already and we are just days into what will be months. I cried the majority of the day, my tears just wouldn’t dry up and ended up in a messy heap on our bed.

And just like that, yesterday’s heartache turned into today’s joy. Hooray for wrapped days! Harper spent the majority of the day today in either my arms, Jared’s arms or my mom’s arms and she continues to make progress. She’s starting to slowly put on extra weight after her initial drop from her birth weight. Harper’s birth weight was 6 lbs. 11 oz and at last night’s weigh in, she was back up to 6 lbs. 8 oz. They’ve added a calorie supplement and a vitamin supplement to her bottles so try to increase her weight. Additionally, they’ve been using five soaked betadyne strips to cover her omphalocele on wrapped days. Well, we’ve discovered that it now only takes four strips meaning her doctors thinks her omphalocele might be decreasing a bit in size.

And more great news, I got to breastfeed Harper today! Once we found out I could produce milk, we were always under the impression I’d be a pumping mom. Well, Dr. Kenton and Dr. Shapiro asked if I wanted to give the boob a whirl and, sure enough, it worked! I never knew how I’d feel about this but there’s something so natural in being able to take care of your child. God made us this way and I now see how something so simple can feel so fulfilling. To continue, Harper’s night nurse from last night (who we really liked) is back on tonight so we were able to come home to a dinner provided by our neighbors, the Gomez’s, and relax for another day tomorrow without having to trek back to the hospital tonight to meet another new nurse.

I know Harper is exactly where she is meant to be, and while this is the hardest thing I’ve ever been through, I know there’s a light at the end of the tunnel. I don’t think I’ll ever begrudge those late night cries when I feel my way across the house to check on Sweet Thing. So just when I think I’m down in the dumps, lowest of the low, saddest of the sad, I asked the Lord for help and look what he does! Thank you God for the simple things in life that can take a Debbie Downer Day one day into a Hooray Harper Day the next!

Friday, August 13, 2010

Climb Aboard!

Tighten your harnesses and fasten your safety belts for the most gut-retching, tear-jerking ride of your life! Welcome aboard the NICU-ERATOR! Our ride begins with a slow steady climb we like to call 10 months of worry for the future. You will then plummet down the C-Section Screamer and we promise fear, elation and heart-pounding madness. Next, you will be taken through the twists and turns of medical diagnosis, medical planning and medical terminology. The upside down turns of the “leave your baby here” will leave you sobbing for your life. Sleep will be near impossible as you reach neck breaking speed so prepare for utter exhaustion along the way. We promise ULTIMATE HIGHS and the LOWEST OF THE LOWS as you take a ride on the NICU-ERATOR!
**Disclaimer: This ride will continue anywhere from 2 – 6 months. Highs and lows are guaranteed to last the entire ride and we guarantee you’re tear ducts will feel dry by the time the ride stops. NICU-ERATOR will be closely followed by the SURGERY-A-TRON.

Welcome to our world! I had heard over and over again from fellow parents, doctors and the NICU staff itself that the NICU is just like a roller-coaster. Well, I’m here to confirm that its 100% true. We will walk away from a perfectly successful day filled with good news and I still end up crying into my dinner at night. I know a lot of these emotions are pregnancy hormones but there are still so many things that leave me tossing and turning at night and I still have trouble not shedding a tear each time I leave our sweet girl. I want her home and in her own bed where I can check to see that she’s sleeping soundly instead of calling 7 miles down the road to speak to the nurse about my own child at 2am. Okay, enough of the whining and on to the good stuff.

Harper is going great and we reached a huge milestone yesterday. The NG tube is gone! Look at her precious face. No tape, no tube, nothing but a sweet little angel! Honey (Janet) and I had fun playing paparazzi this morning – can you tell?

We had been testing the bottle slowly, while decreasing her tube feeds. I was getting worried that she was hungry. She’s a pretty passive baby but started getting extremely squirmy and fussy before her little bottle feeds. She would start gnawing on her hands and reaching with her mouth. We were planning on continuing the slow bottle increase until Monday or Tuesday of next week but when we got to the hospital yesterday morning, Dr. Kenton said he checked on Harper at 7:30am and that she did, in fact, look hungry. He wanted to try feeding her by bottle, letting her take as much as she wanted and then, if she held it down, the feeding tube would be gone. Well, our hungry, hungry hippo ate 86 cc’s or what I like to call Thanksgiving Dinner! And I mean she chugged it and fell into the deepest sleep you can imagine. The feeding tube was immediately removed and she continued on bottles for the entire day – we just had to wake her up after her morning gorgefest! She’s now eating about 40 – 60 cc’s per feeding. Our only challenge is how to burp the poor child. We have to keep her on her back due to the omphalocele so we’re trying back rubbing, back pats while suspended in our arms and chest pats. I think Jared and I are building muscles in our arms we never knew existed.

The latest debate had to do with her physical therapy. Harper has a great PT, Mahera, who works with her 4 days a week and has shown us her exercises so we can do them with Harper as well. Since Harper is on her back all day, there’s a concern about her lack of “tummy time” and development of her neck and back muscles. We discussed turning her over on her stomach with her O suspended between Mahera’s legs while she worked on her. Initially, I thought this sounded like a good idea. But when Jared and I sat down to discuss it, we both got very nervous about a possible rupture of the O sac. We are trying to let gravity play a part in pushing her omphalocele contents back in her abdomen so this seemed a bit counter-productive. Dr. Kenton was on board with trying the altered tummy time method but wanted some sort of prosthesis made so that it helped support her O. We were still pretty uneasy and wanted to make sure the entire team was on board so spoke to the surgical team. They felt it was too risky to try this now and asked that we wait until later when the O is a little more stable. I feel more at ease with this scenario. I hate that Harper will be behind developmentally but I’d prefer my little girl come home without a busted gut! Some of the other O moms have mentioned that their kids started the PT later and that they caught up quickly. Guess we’ll wait and see – please keep this as a prayer concern for us.

My latest pity party comes from the fact that we don’t have a fully established Team Harper Night Shift yet. Jennifer is our only night primary nurse and we love her. We just can’t expect her to work 7 days a week! Since we had some discomfort with a previous nurse, I don’t necessarily feel great about having a nurse that we haven’t met in person. Therefore, Jared and I are trucking back to the hospital at night when we have a nurse we haven’t met yet. This is exhausting, especially after I’ve put in a full day at the hospital and Jared’s put in both a full day of work and hospital time. I hope that we can get a more solid night team established soon or that we ease into feeling a little more comfort in knowing Harper will be well taken care of each night.

Her omphalocele is staring to have some tiny little signs of skin growth and we (her personal cheering squad) think her O is getting smaller but I’m afraid it might be just wishful thinking. Other than her O, Harper is seemingly a healthy, happy little girl. If you saw her from chest up or hips down you’d think, why is this child here? If it wasn’t for that pesky liver and bowel sticking out, we’d be normal parents with a baby at home. But, alas, that’s not our road. We’ll keep holding on tight as the roller-coaster takes us up and down through emotional twists and turns and trust that God is at the helm of this big scary coaster and only He knows the final outcome. I don’t know about you but I’m hoping for a laser light show at the end!

Much love,


**I hope this works – I’m going to try to post a video from our Flip Camera that we took today. It’s of Harper eating and a little tour of her surroundings. If it works, I’ll try to post some of the past videos I’ve taken over the last week and a half.

Wednesday, August 11, 2010

Happy One Week Harper!

Happy one week birthday sweet girl! In just 7 short days you have changed our lives forever and for the better. We can't imagine life without you and we love you more than words can express. God has big plans for you and we can't wait to see what's in store. Keep eating, keep growing and keep up the great progress. We're so proud of our brave Harper!

With all our hearts,

Mommy and Daddy