Congenital Diaphragmatic Hernia Awareness Day

I received an email from Becky Hufty about Congenital Diaphragmatic Hernia Awareness Day, which was today. She also sent the ribbon. I have seen the ribbon before. When I initially googled diaphragmatic hernia, it seemed that the information I found wasn't what I was looking for. I also couldn't absorb too much in the beginning and didn't look too hard or want to filter through all of the links and websites. Last month, for some reason, I decided to google "congenital diaphragmatic hernia" and everything I found was naturally much more pertinent for us. I also found a site all about awareness and the ribbon was there. It is basically a support site for families of CDH babies. I keep intending to go back and look around some more, and possibly join. I just haven't quite gotten around to it. I'm not sure why I haven't made this a priority. We have so much support, but it isn't like you can't have enough. We have met a handful of other families and the Fleig family is an unwavering source of "been there, done that" support. I want to make contact with other families in a more global sense - so why haven't I? I guess we are still just so in it right now...maybe that's enough for today. I don't know.

Ok, so I haven't taken the time to blog about our appointment at Riley on Thursday. It has been a busy week and weekend. The boys enjoyed their spring break, but by the end of an entire week of bopping here and there, messed up routines - they were tired and so were we. Today it was back to school and back to routine. We are now also really into project bathroom - Josh and his Dad did the major demo yesterday. Our bathroom is currently stud walls and wood slatted floor. The boys enjoy peaking through the slats in the floor to the basement. On the up side, they are burning a lot of energy taking turns running up and down the stairs to yell at each other through the bathroom floor/basement ceiling. Anyway, these are the reasons for the delay. Here is the summary: We expected some concern and worry over his weight, but there was none. They seemed perfectly satisfied with his growth thus far and marveled over all of his accomplishments and were pleased with the therapy Gabe is receiving and how it is helping him. So we felt pretty good about this and were not really concerned about the swallow study, to be completed a little later that day. Dr. Stanley - the dev. pediatrician - would meet us there. During our downtime, we shared a wrap at the patio and let Gabe suck on the pickle. He thoroughly enjoyed it, especially since he was very hungry - awaiting the start of the swallow study. By the time the study started, poor Gabe had missed a nap so we could now add tired to the hunger. If you know anything at all about babies, then you know this is not a good combination for the most good natured of little ones. He was unhappy, but handling it all ok until he saw the cup and the shaking of the formula. The pacifier popped out of his mouth and he started making the little urgent noises he likes to make when he is very hungry and he wants you to hurry up. Unfortunately, there were delays in experimentation with different cups and consistencies. He would be given the cup, then it would be taken away to try something else, then he'd get it back, then it would be taken away again. Not good. Not good at all. On top of the fatigue and empty belly, he was sitting straight up and strapped into a seat with all of the equipment needed to watch him swallow the barium (so he also had chalk in his milk). It was a wonder they got any information at all. Here is what we discussed after: She stated that she did not see any specific aspiration, but she was very concerned about Gabe having his head back (hyperextended) while drinking from the sipper cup - it looked risky for aspiration and she didn't feel comfortable giving us 100% assurance that he was not aspirating or would not aspirate with the cup. They also tried a straw cup, which she thought looked better. They also tried the cup and thickened milk. We could tell she was a bit uncomfortable with Gabe drinking from the cup, or probably even the straw cup, but didn't want to tell us we should go back to using the tube more exclusively when we haven't used it in over a month - and very little for over two months. Her suggestions were to thicken milk in the sipper cup and really push towards getting him to use the straw cup. When we had a chance to process all of this, here were our thoughts - at home when he drinks from the cup he is held in a more reclined position and his chin is down, meaning his head and neck are not hyperextended. He is also not usually between screaming fits. I guess we just didn't have a lot of confidance in the reliability of the test in showing what is happening in our daily life. Dr. Stanley also mentioned that one reason Gabe may not be taking 8 ounces at one time like a more normal 10 month old could be that he feels unsafe and gets fatigued. We won't argue that he may be getting fatigued - we know he still breathes faster than what is normal for other babies and the whole "suck, swallow, breathe" coordination is different for him. I could see that for the little I was able to observe. It looked to me that he would "suck, suck, then swallow, then breathe". It seems that he is finding a way to make it all work - and over the past 8 days (according to our log) he has increased how much he takes at one feeding and how much he takes overall. He typically takes 20+ ounces per day now.

We also discussed ways to keep his calories up - and she agreed with everything our OT was having us try thus far. She even mentioned that we could mix in some butter to up his calories. I didn't expect to hear that. We'll have to see if Paula Dean has a cookbook for babyfood. That ought to take care of all of our calorie concerns. Dr. Stanley agreed with Dr. Rouse that we should probably get weight checks every two weeks to continue monitoring Gabe's weight/growth. She also wanted to up his fluid intake a little more and suggested that if he gets less than 28 ounces of fluid per day (we can count some fruits and veggies to a degree) we should maybe put some water down the feeding tube to keep him hydrated - without worrying about filling him up and interfering with his hunger and desire to eat. Then she mentioned something we did not expect to hear. She said if everything was going well n July when we return to see her - meaning he is eating and drinking like a normal 14 month old, we could discuss when the tube should come out. I really thought it wouldn't even be discussed until after the next cold and flu season, which could still be our reality. We will just have to see how the next few months progress - see what Gabe does! She also mentioned that if Gabe didn't seem to be eating a variety of foods and calories were still a concern, we should probably delay switching to milk after his birthday and sticking with formula a little longer. I kind of expected that. I think that is it. I hope I got it all. It is late and I haven't proofread this, so forgive the typos please!

Well, it has certainly been a busy couple of days. I don't even know where to start and I am really tired. Easter was such a nice day. The boys were so handsome and everyone had a nice day together. I will get more pictures posted tomorrow, so check back. Monday was Josh's promotion ceremony. We were so proud of him - and all of us were there to support him, even Gabe. There was a nice crowd there, but nothing that made us uncomfortable about Gabe coming along. Lots of people got to meet him in person for the first time and we enjoyed showing off all three boys for a change. It was still Josh's moment, but Gabe shared the spotlight a little. Gabe even shook hands with the Chief of Police. Since it is spring break week down here, Josh's sister Brooke was even able to come along with their parents. Kaci and Justin were down for Easter, but their spring break isn't until next week, so unfortunately they could not stay for the promotion ceremony, but we had a nice time with them Saturday and Sunday. After the promotion ceremony, we went to lunch downtown at Max and Irma's at around 10:30. At that time we pretty much had the place to ourselves, so we were even able to relax and enjoy a restaurant without worry. It was all so normal and we loved it.

Today was a follow up with Dr. Rouse. He was pleased and surprised to hear Gabe hadn't used his tube for feeding in a month. We updated him on all of Gabe's accomplishments since our last appointment in January and Dr. Rouse told us that seeing Gabe and hearing all that has happened made his day. Gabe smiled and chattered away at Dr. Rouse while he was being examined. He has been a little more leery at medical appointments lately, so I sort of expected him to cry during the exam but he didn't. It's as if he knows this man is particularly special. He also noted the drop in the weight percentile but agreed that we could continue as we are with regular weight checks to monitor his progress closely. He did add that if his weight became more of a concern, we should add a feeding at night to up the calories. We expected that, but are glad he agrees we can continue as we are for now. Gabe has consistently taken over 20 ounces in a 24 hour period for a week now, which is a big improvement for him. During the exam, Dr. Rouse noted that Gabe's sternum is a little inward (I really can't remember the medical term for this, if anyone reading knows, please email us or leave a comment - I meant to google it) which he says can happen with DH kids. It doesn't overly concern him for now, but if it gets worse then surgery may be required to fix it. Fortunately we won't need to address that until Gabe is 8-10 years old, so there is plenty of time to watch, wait and see. Dr. Rouse also ran his fingers over the veins across Gabe's upper torso and neck, which are quite pronounced and have been for months. We have all noticed and the therapists have commented on it, but since multiple doctors examine him, see them and haven't said much, we haven't really asked. Today I did. He told us sometimes it happens after ECMO and is just something else we will have to watch. He recommended a repeat echocardiogram just before our next appointment with him at the end of May. We have talked about repeating this around Gabe's birthday before, so this was not a surprise. Aside from weight checks, April should be pretty quiet medically. May on the other hand will have some sort of appointment every week. We'll enjoy the reprieve and then look forward to more good news (fingers crossed, prayers offered) on Gabe's progress in May.

Good Friday

Gabe had his weight check today and final RSV shot! He was not happy about the shot, ofcourse, but the word final has double meaning and double reason for some relief. First that it is one less thing we need to do and second, RSV season is coming to an end soon - there is light at the end of the tunnel. The weight check was good enough to show that Gabe is maintaining and not losing ground as he appeared to be three weeks ago. He weighed in at 18 lbs and 11.5 oz. I looked to see how much he weighed three weeks ago and it showed Gabe had gained exactly 1 lb. It is a good gain, but we didn't really gain anything in the percentile area. Our pediatrician seemed encouraged and satisfied with this for now. Since we are seeing Riley docs next week (Dr. Rouse in pediatric surgery and Dr. Stanley in Dev. Peds), next month (Dr. Macke in pulmonology) and again in early May (neuro at Riley), we will be getting weighed frequently enough to monitor this progress. The next two appointments are with docs who haven't seen Gabe in a while and I do think they will be amazed and happy with all that he has accomplished since their last visits, but I also wonder how they will react to his drop in the weight percentile. He is making so much progress and I hope we won't be asked to use the tube more, since he is doing so well orally. He even wakes up sometimes when he is hungry now. On the one hand, we do have the tube and we could put more down the tube at night, especially after he has gone to bed and before we go to bed. It would spare us getting up later if he falls asleep a little too early and maybe didn't take enough at bedtime. But as tiring as it is to get up and feed him if he awakens, hungry and crying, just a couple of hours later, I think I'd rather do that. It's normal. It's what babies do, especially during growth spurts. It can make the next day a little more challenging, being tired, but I still think I prefer the normal way. We've worked so hard to get away from using the feeding tube, to eating normally. Tonight at dinner I tried something different and was rewarded. Instead of green beans in the mesh feeder, I cut them into little bits and placed them on the tray. He picked them up in his little fist and did his best to cram the mashed up remains into his mouth, just as I had hoped he would. It was really just a couple of weeks ago that foods had to be pureed very thoroughly for him to accept them without gagging or rejecting them. Tonight he ate a piece of actual, non-pureed green bean! Ok, in re-reading that last sentence, it may only be really exciting to us, but we were pretty excited. I also mashed up some soft mac & cheese with a fork and he accepted that too - lots of texture! He also took 20 oz of milk today, which is pretty good for Gabe.

Well, it is getting pretty late. I don't know if tonight will be an all night of sleep or interrupted, so I had better get some sleep in while I still can. Before I go, I need to extend another round of 'thank yous', just because I think it may have been a while. Always know how grateful we remain to everyone who keeps us close in thought and prayer. There are times when life does feel a little overwhelming, in a normal way that life just becomes "a little too much", like it would for anyone. Everyone has their own struggles and they are important. We appreciate you lifting us in the midst of your own day-to-day worries and please know we think of you too. Hope you all had a Good Friday.

Happy St. Patrick's Day!!

We had fun today! Everybody had their green on to celebrate. Every morning the boys have milk at breakfast, and there was even a bit o' "blarney" (aka: green sprinkles) in their milk. After their many questions about what was in their milk, they finally smiled, caught on to the fun of it and even drank it. Gabe discovered Kendrick's beads and had fun rolling them around in his hands. Eventually they wound up in his mouth and had to be replaced with baby toys. Ginger has us really working on continuing to get different textures in his hands and the beads definitely fit the bill. We had such a nice weekend. Josh and the older boys worked on demo in the bathroom we decided to update. It has needed updating since moved in, but you know how projects at home go, there are always reasons to put them off. Josh has had to work on some things and has commented on the moisture he encounters and we have often worried about moisture and maybe mold in the walls, so it was time to do something about it. It isn't too pretty under the tile (and the tile wasn't so wonderful either), so I know we made the right decision. It will be a bit chaotic the next few weeks as the main bathroom (and only tub) is in disarray, but it will be worth it when it is finished. Josh is doing most of the work (with help) to save us some big $$, he is quite handy that way. I took some pictures of the guys working in the bathroom, then I had to leave - I couldn't watch my boys with hammers. I envisioned them with their toy hammers, but I was wrong. No trips to the ER, so it all worked out ok. Sunday we went to mass and then decorated Easter Eggs. I think the boys are ready and excited for holy week. We have an Easter book they got either last year or the year before and have begun reading it. They've learned so much about what Easter really is about and it makes us so proud of them. We were sitting in mass for Palm Sunday and they each wanted their own program as the service revolved around The Passion. Kendrick pointed to the picture of St. Ben's on the front of the booklet and excitedly shook my arm exclaiming "That's my school!". Then he noted the cross on the roof above the entrance and whispered loudly while pointing "Hey, that is where Jesus died". So they do pay attention, huh, how about that.

I got pictures of the demo, and the egg decorating. It is past my bedtime, so I will try to get them posted in the morning. Hope you all had a lovely weekend as well.

What a beautiful day, how good I feel today. It may not be quite as warm as was predicted, but still... to be outside with only the lightest of jackets, the warm sun on my face, I have been longing for this. This morning I took Kendrick to his sports clinic at the Y and afterwards we went outside to play on the little playground with a couple of the girls in his class. Both Justin and Kendrick have been begging to play there every time we go, but either the equipment was snow covered, it was bitterly cold or the ground was water-logged and muddy. I wouldn't call myself fastidious by any means, but the thought of two boys rolling around in the mud and then climbing in the van....well it is just too daunting for me. Anyway, I digress (big surprise). We were playing on the playground and I got to talking with the Mother of the little twin girls Kendrick was playing with. We were talking about the usual "Mom on the playground" stuff, whatever that is, mainly busy schedules, kids in preschool and kindergarten, finding time to exercise, etc...somehow she knew we had a third boy and I mentioned that being unable to take him to the Y daycare had been somewhat prohibitive in my exercise routine (I know, excuses!) and she asked why...such a simple question, poor woman. I think I did a good job hitting the highlights and restrained from heaping too much information on her. If she won't make eye contact with me next week, then I'll know I said too much. We actually had a nice conversation (yes, conservation, as in NOT one-sided) and she mentioned friends with children who had rare medical conditions and how grateful it made her that her own children were healthy. I told her that even though Gabe had a pretty rough start and we were aware there would be issues in the future, we were incredibly and unbelievably grateful he really is so normal. She asked lots of questions about Riley and living at the Ronald McDonald House, so I must not have put her off. Again, we'll see if she talks to me next week.

Now Gabe is napping (he didn't nap well earlier and was really grumpy with Ginger - OT). He did do well on his four-points exercise (see the picture above), but wasn't too enthusiastic about anything else. Still, there was some progress. Josh took Kendrick along to pick Justin up from school and then on to tumbling at the Y. So there is peace in the house, which is a little odd at this time of day. I brought a basket of whites to fold into the living room and decided to turn on some songs from itunes, rather than turn on the tv. It seems to take me an hour just to fold socks if I am watching tv too. Somehow I wound up sifting through some songs online (as the socks sat, unfolded, in the basket - aren't I efficient?) and stumbled across a song I had heard before, but never really listened to. I think it has been used on Grey's Anatomy before. I googled the lyrics (again, as the socks sit) and then just had to purchase the song. I pasted an excerpt below. The conversation with a stranger and then stumbling across the lyrics took me on a little trip back to our first night in the NICU. I don't dare look back at the pictures today, maybe tomorrow. Most days are just moving through our routine and those early days seem more like a bad dream, but then there are other days where those memories and emotions creep back in. It isn't as traumatic as it used to be, to remember. Most of the time anyway. Usually when I take a trip back in time now it is more as an observer and I can appreciate where we are now. But at other times....when I let myself think too much about how things could have been...well I don't do that on purpose and certainly don't plan to do it now. I have socks to fold and don't intend to blow my nose on them. Hope you are enjoying this beautiful day, but since I am probably in the minority of people with a Thursday off, well, hopefully you can grab an hour or two after work to enjoy it.

One more thing I keep forgetting to mention. Josh is officially, and finally, a sargeant. He started on Monday, with his promotion ceremony set for March 24th. We are very proud of him, especially since he had to give up the work he loved in K-9 to accept the promotion. We know he did it for his family and our future, but it was still a difficult decision. The boys still say prayers for Brix at bedtime and in mass. They miss him too.

Breathe In, Breathe Out as performed by Mat Kearney

Hold on, hold tight

If I’m out of your sight

And everything keeps moving on, moving on

Hold on, hold tight

Make it through another night

In every day there comes a song with the dawn

We push and pull

And I fall down sometimes

And I’m not letting go

You hold the other line

Cause there is a light in your eyes, in your eyes

There is a light in your eyes, in your eyes

Breathe in and breathe out

Look left, look right

To the moon and the night

Everything under the stars is in your arms

Not about us

Today's post is not about our family here at home - but extended family.

First, congratulations to Dr. Duffy and his family on the arrival of the newest member of their family. We read about the birth of their baby Mark from the Hufty's Caring Bridge site. Dr. Duffy was involved in many of Gabe's later surgeries, primarily after Dr. Little left. He was a great source of support and we are very happy for him and his family.

Second - kudos to everyone involved in the Guns and Hoses fundraiser last night. It was quite the event and raised a lot of money for two very worthwhile causes. I have nothing but the utmost respect for the organizers and all of the men and women who were charitable enough and brave enough to step into the ring for such a great cause. I've never been to any kind of boxing match, or even watched it on TV, so it was an interesting experience. I got a lot more caught up in the drama than I imagined I would!!

Third - Amy Willis, who left some very kind and encouraging comments on the blog in the early days, has been diagnosed with cancer and there is a fundraiser for her. I am pasting the flier on this blog and hope that if any of you are able to offer support for the fundraiser, you will seriously consider doing so. If you can't, please offer your support in prayer.

Fourth - I have noticed ads for a rodeo fundraiser to be held later in March, with all proceeds going to the Ronald McDonald House to be built here in Evansville. The RMH was a tremendous help to us during our stay at Riley and we are very excited there will be a house here to support tri-state families going through similar difficult times. I have included a link to their site which has information for donating, and also upcoming events. Again, if you are unable to help at this time, we hope you will consider keeping their efforts in your prayers.
http://www.rmhevansville.org/about-us.aspx

Amy Willis Benefit
Pizza Fundraiser
(Former Dispatcher and Record Room Clerk)

Amy has been diagnosed with cancer and we are holding a fundraiser to help with costs. Due to her not being employed long enough at her work, she will not be paid for her time off. This fundraiser will help offset home expenses for her family and insurance expenses.

Order your fresh hand made pizzas today!
Rick Hubbard - Karla Larmore - Debbie Baird
436-4953 436-4954 436-4948
rhubbard@evansvillepolice.com klarmore@evansvillepolice.com dbaird@evansvillepolice.com

12" Cheese $4.75 12" Veggie $6.00
12" Pepperoni $6.00 12" Beef $6.00
12" Sausage $6.00 12" Deluxe $8.00
12" Sausage/Pepperoni $7.00

Pizza Order DEADLINE Monday, March 24

Pizza Pick up will be Saturday, March 29, 1:00pm at the FOP
(Check with your order taker for alternate pick up for FROZEN pizzas)

Checks made payable to "Amy Willis Benefit"
Thank you for your support!

The fire in the fireplace has gone out, but the coals are still glowing. Outside the snow that has been swirling around in gusts of wind has settled into a light flurry of flakes. Inside we are safe and warm and settled in for the night. Two hours ago I was trying to talk on the phone, while juggling Gabe and ushering two older boys into the bathroom to brush their teeth. Josh was trying to take a nap before work, but I am not sure how much sleep he got. Hopefully mother nature will keep the streets of Evansville quiet tonight. After Josh left I looked out the front window, to see how much snow had settled in our yard. It seems like even at the first forecast of snow, the child inside can't help but get excited, wondering just how much will fall. As an adult, it is easier to enjoy it, knowing you don't have to be anywhere. My daffodil shoots are buried, but they have been covered by a late winter snowfall before, and still survived to bloom when the sunshine returns. It's funny how the life we observe in nature mirrors our own lives at times. March 9 will mark the one year anniversary from the date we received Gabe's diagnosis. It was a Friday, so today felt like the anniversary. The MRI in Indianapolis was March 5th. I got the call on Thursday afternoon to come into the office to go over the results with our specialist here in Evansville. I tried to tell myself that just because we didn't get the results over the phone the news wasn't necessarily bad. It felt like denial. We left that appointment with a diagnosis, a photocopied page about diaphragmatic hernia, an appointment to return to Indianapolis and questions we didn't even know to ask. We were buried. Even then we sensed that for most of the questions we had and would have, there would be no answers, only guesses. We had three months, we hoped, to keep appointments, make plans, do all we could to protect this new life we had been entrusted with. I think we were as prepared as we possibly could be to hear the news that day. We had been in limbo and at least now we had some answers, we had a direction and a path to follow, even if we had know idea where it would lead us. It wasn't the last time we would be feel overwhelmed, or the last time we would find new direction in the midst of confusion and fear. There was always hope, and we took every encouraging word or sign we could and held onto it. So many of you out there who may be reading this now gave us some of that hope and strength. Every prayer, every candle lit, every card, phone call or hug came just at the right time, when we needed it. Our Why Catholic meeting this week focused on the trinity and the mystery of the holy spirit. I believe the holy spirit worked in so many of you to come to us. Our sunshine to melt the snow, to melt the fear and uncertainty away and just like the earth in spring, we were renewed.


Excerpt from "GRACE", as recorded by Michael W. Smith
And all these years you've carried me
You've been my eyes when I could not see
And beauty grows in the driving rain
Your oil of gladness in the times of pain

A hint of Spring

Another round of flurries have passed us by, but just two days ago, we were enjoying warm sunshine with spring-like temperatures. It felt so wonderful to step outside with no coat. Ithink for just a moment I wanted to spread out my arms and spin around like Julie Andrews in The Sound of Music, but I resisted. After breakfast, Justin and I went to mass together and enjoyed the time, just the two of us. When we returned home, the whole family (Gabe too) including Aunt Brooke piled into the van and drove out to the Sugarbush festival at Wesselman's. We enjoyed fluffy pancakes with freshly made maple syrup, made from the trees right there in the park. I even cut off a few pieces, dredged them in syrup and let Gabe get a taste through his mesh feeder. He definitely enjoyed that. After our pancake lunch, we followed a park ranger outside to learn about how the sap is collected from the trees. I wasn't sure how interested the boys would be, but they actually paid attention and seemed to enjoy it. Gabe even got in a little nap, riding in the stroller. Mostly, we were just happy to be out together as a family enjoying the day. It felt so normal, and we felt so appreciative. Monday returned with endless rain, gray skies, and falling temperatures, but we got a glimpse of things to come. We got to watch our boys explore their surroundings with the kind of enthusiasm and wonder that only children can. There may not yet be any flowers blooming in the yard, but there are tender green shoots pushing their way up, growing. I can hardly wait to see how they blossom...

The feedings are going phenomonally well compared to where we were, but his weight has slipped below the 25th percentile, as was confirmed at our 9 month check on Thursday. He takes around 15 oz per day of formula, which we knew was low, and the pediatrician said he would prefer at least 24, or really closer to 30. On the flip, he is actually starting to take more food than is typical for a 9 month old. We probably need to reduce the amount of food we give him, so he is hungrier for the formula. We upped the calorie content of the formula and we give him undiluted cream soups which are high in calories too. I do mix the veggies with them. It has only been within the past 10 days that he has really started to be hungry, and voice it to us. I think he had to be off of the tube for a while for his body to figure it out. Gabe goes back in 3 weeks for a weight check, so we have three weeks to prove we can make it without using the tube. Our OT was telling us about a product they have at Walgreens that is VERY high in calories and you can mix with other foods, so that may be the next step if Gabe doesn't gain enough. The last two days he has taken 19 ounces over the course of the day, so we are getting closer to normal. Everyone who sees him agrees that to look at him, you'd never guess he was getting on the low side for his weight. He looks fantastic - and still has those full, pinchable cheeks!