Feeding Progress

Although he is improving with the cup, Gabe seems to prefer the syringe for getting his milk. Every day he seems to take a little more and more by the cup. I was nosing around Schnuck's, looking for a new soft sipper cup and was amazed there were more to choose from than there were even just a few years ago when we were looking to transition Kendrick to the cup. I picked up a NUK cup with green dragonflies on it, which seems to be working out better than the playtex cup we used before. Just a note to anybody else out there who tries it, it really is great but it is really slow flowing. I had to get a little scissor happy with the tip to get it working better. The others were a little too fast, so this was a good compromise, even if I had to modify it a bit. He didn't seem to take as much from the cup saturday as he did Friday, so I really had to work on myself not to get too discouraged too quickly. We stuck to the plan and Sunday was a tad better. Today was even better yet. He took three ounces this morning and another ounce a little later in the morning. He also took about two ounces at dinner and three ounces before bed. That is a big improvement, considering this time last week we were excited if he took even half an ounce out of the cup over the course of an entire day. I know it is far from the approximately 30 + ounces that most 8 month olds take by mouth, but I never imagined we'd be in this position orally this soon. He is quite the little trooper, and demonstrates this time and time again. Even his brothers have noticed this big step and have acknowledged it with excitement. Justin wants to help feed him so badly, so last night when Kendrick needed something, I let Justin hold the cup for Gabe while he was sitting in his swing (which I am afraid is nearly outgrown). Justin was so proud of himself and I restrained myself from shooing him away too quickly. I know all of this is a lot easier for them to take if they are a part of it, instead of just the onlookers that we all were in the beginning. It hasn't always been easy to find ways to incorporate them into Gabe's care, but we are learning and so are they. As Gabe continues to grow and thrive, it gets easier to let the big brothers do more than fetch and dispose of diapers. You can see the sense of accomplishment in their little faces and it hopefully eases the jealousies that I am sure they must be dealing with more than we'd wish.

I mentioned a bit about timing during the last post, and how little we may really be aware of. Last week we received an email that reminded us of that. Since the email was to us, I will keep the author and the exact contents private here. But it was a reminder of how timing has been absolutely everything, from Gabe's first hours of life. It was a reminder that if even one little detail had been different, everything would have been different and I am not sure this blog would even exist. Even if Gabe's life had been brief, it would have had meaning, we know that. It still hurts to think that was the accepted belief those first hours, so naturally I don't dwell there often. The phrase, "what a difference a day makes" takes on new meaning and greater significance. But he surpassed many expectations by surviving the first night and so the story goes from there. He continues to do so and in the process, brings us along with him on his journey as we surpass our own expectations for ourselves. We find that we are able to do the things we once might have doubted. We are stronger than we may have believed - but I still argue it would have taken greater strength to face the alternative and I acknowledge those parents who face a different reality. Many have asked us how we do it, stating they don't believe they could do all that we have done. We know so many families who have faced similar or even greater obstacles and continue to fight for their children and pray for progress, or even miracles. I guess you don't know what you are capable until you are put in a particular situation, but I don't know anyone in our circle of friends or familly who wouldn't also rise to the occasion. We haven't done anything heroic, we've done the best we can for our family.

Change of plans...

Sorry for the delay in posting, it has been quite a week. Some of you may have been wondering how our trip to Riley went this week. Well, it didn't happen. Tuesday evening, around 6:00, Gabe started vomiting and didn't really stop until Thursday evening around 8:00. It was hard to see him so miserable and not his usual happy, smiling self. He was often listless, and alternated between sleeping and fussing. By Thursday he was hungry and obviously thirsty. With the wet diapers coming few and far between, we worried he was getting dangerously close to dehydration and a trip to the hospital. We kept putting the pedialyte down his tube and even dripped it into his mouth to try to help his thirst. Gabe and I changed clothes multiple times a day and the washer was running almost constantly to keep us supplied with fresh linens, burp rags (or vomit rags in this case) and clothing. We alternated sitting in the big brown chair, holding him, comforting him and trying to keep him hydrated. Gradually the nausea seemed to give way to hunger and we cautiously fed him a mixture of pedialyte and rice cereal. Eventually he did keep it down. It seemed initially that this would be a frustrating delay in progress, since we missed his swallow study and follow-up appointment with developmental peds, where we would surely discuss moving forward with plans to get Gabe more orally oriented. Once again, timing proved to be a key factor that we couldn't understand or see in the moment, but positives emerged from a seemingly bad experience. In Gabe's desperation to be fed - he got a hold of the syringe I was using to slowly drop liquid into his mouth and sucked it dry. This pattern continued and Friday morning, after a night free of vomit, I mixed some rice cereal and pedialyte in his sipper cup, and he downed 4 ounces!! Previously we were excited if he took more than about half an ounce by cup. We had him checked out by the pediatrician, who agreed he seemed perfectly fine and really only lost a few ounces off of his weight despite his little ordeal. We also discussed his oral accomplishment with both the pediatrician and his OT, who both agreed that Gabe has shown he might be ready for a more aggressive approach to getting him less reliant on his feeding tube. Ginger (OT) had told us before that one approach to getting a child more oral is to use pedialyte down the tube for 48 hours to keep them hydrated and in-balance with electrolytes, but also to get them good and hungry. Well, this is basically what happened and it had that exact result. The new plan is to try to push him to take as much of his milk/formula through the cup and supplement fluids through the feeding tube to contine to keep him balanced and hydrated, but to rely on oral feedings to satisfy hunger. We will probably still put extra milk down the tube at night so he doesn't get short-changed nutritionally during this transition, but we are off to a slow but encouraging start so far. He did take about 2 ounces of milk in the cup this morning and also some cereal mixed with milk. We figure his tummy will probably only tolerate so much for a few days anyway, since he had very little in it for almost three days.

Once again, we see proof positive that there is another plan at work, separate from the one we have laid out. We continue to learn to adapt and also to listen to the subtle whisperings. I have more I want to say about this, but I am out of time. Time to get on with the rest of the day in our busy household!! I'll return as soon as I am able. Don't look too closely to my typos, I haven't had time to proof-read this posting...

Save the date!

It looks like we are almost certainly celebrating Gabe's birthday the Saturday of Memorial Day Weekend, May 24th - which is his actual first birthday! As we said before, everyone is invited - and we do mean everyone!! Feel free to help us out and let anybody who doesn't have internet access or who may have lost the blog address know. I don't know if we'll send out invitations or not - since I am afraid of missing somebody - but we might. Just know that even if you don't receive one, you ARE invited. Instead of gifts, we'll probably do some sort of donation of certain items for either the Ronald McDonald House in Indy, or the new RMH to be built here in Evansville. It was such a tremendous solace to be able to go there, rest, take care of what needed caring for, and then get right back to the hospital. We'll have more details as the date draws nearer (I am a little worried it will sneak up on me). Thanks again to everyone - we look forward to seeing/meeting you in May!

Today was our follow up appointment with Dr. Rouse, and once again he was very pleased with Gabe and his progress. I think Gabe still amazes him and probably always will. He weighed in at almost 18 lbs! Since it has been almost 3 months since we saw Dr. Rouse, I wrote out all of the changes, including Gabe's feeding schedule, milestone accomplishments and his now very abbreviated medication list - most notably absent were the oxygen and phenobarbitol!! We did have a few concerns/issues to discuss. Gabe has had some constipation and also had a couple of vomiting episodes last week, both of which have improved, however they were worth discussing. We were warned months ago that the signs of Gabe's patch slipping would be more GI than respiratory, so we were naturally a little concerned. Dr. Rouse ordered an xray, which needs to be done every couple of months anyway. Since our insurance is with St. Mary's, we couldn't just run downstairs at Deaconess, have the xray and run back up to review the results. We have a copy of the disc and will drop it off at Dr. Rouse's office Thursday when we are there for other appointments. Unfortunately that also means we will have to wait a few days to find out if everything is still in its proper place. Gabe has had fluid in his ears for nearly a month (which piggy-backed another episode of fluid back before Christmas) so we are considering tubes and discussed that with him as well. Since it is such a simple procedure, he felt it was perfectly safe to have done here, even if the adenoids have to come out as well. We'll be discussing it and probably making a decision very soon if the fluid refuses to dry up. I know how long-term fluid can complicate things. We'll keep you all posted, as usual!

Peaceful night

The boys are in bed, Josh just left for work and the house is quiet. I am ready for bed but couldn't quite settle down to sleep just yet. Outside there is the kind of softly falling snow that captures the imagination and calms the spirit. I opened the door to let Cosmo out and just stood for a moment to watch. It's cold so I pulled the open front of my zip-up sweatshirt closed with my hands and continued to watch. It was a bit of a surprise as the weather report at dinner seemed a bit pessimistic that we'd get much more than a few flurries to dust the ground, but there are big fat flakes drifting to cover the ground, the deck and the twin toy lawnmowers left out from our 70 degree days last week. There is no wind so it is quiet and still outside. I snap a couple of pictures, shiver and motion for Cosmo to come inside. Somehow it feels almost irreverant to holler or whistle for him. Inside I rub my hands together and finish the little tasks I set out for myself in my mind before going to bed. Three bottles are ready and measured for tomorrow, to save time during the day, when there doesn't seem to be much available. I put some more milk down Gabe's feeding tube and watch him sleeping with the same sort of awe and peaceful stirrings I felt while watching the snow. He's snuggled up to his little lamb, which is fitting. I wonder if that image will make me laugh, smile or sniffle in the coming months as he develops and grows and ultimately joins his brothers tearing through the house. A bit of all three I would imagine. I snap a picture of Gabe too and quietly step out of the room. I check on the older boys, but don't dare snap a picture for fear I will wake them. Might be interesting to have a picture of them sleeping in their beds instead of in the car, at the table, or on the stairs. I think my mental check list is pretty well complete, or at least good enough for tonight, so here I am...sorting my thoughts so they won't keep me awake. As I absorb the calm (it never lasts around here, and I wouldn't trade it...most of the time) little fissures of ...something I can't quite put my finger on threaten to interrupt it. As the days turn into weeks which have melted into months, I am struck by the thought that we really prepared ourselves for something we had to tell ourselves we could handle, never allowing room for doubt or we'd be sunk. We believed we could handle whatever we had to face because the alternative was unacceptable. But it hasn't been so bad. I know the winter isn't over and that, I think, is the point. Forgive my rambling thoughts for a moment. We faced big odds and a lot of things we couldn't control. We have done what we can to minimize our risks but we knew all along we might reach a point where all of those things we couldn't control might negate our efforts to keep our family safe. But so far that hasn't happened. I'm not saying it's been easy every day - maybe just easier than I thought it would be. But that brings me back to this peaceful, beautiful night where all is right in our world and it gives me pause. It gives me pause because I think the last time I felt such a calmness, I didn't know we were standing on the brink of a free-fall. It's good and it's bad. It's good because it reminds me to be vigilant, not to get too complacent. It's bad because it steals away a little of that feeling of security which we crave. We want to know at some point that everything is going to be fine and nothing can harm us or those we love. Ofcourse life comes with no such guarantee. We can't live in fear of tomorrow - or I suppose we can, but that can be so exhausting. Our story isn't over, we still have much to do and some of the chapters may be hard to write. For now I will put the unease away and savor the stillness.

New pictures

Down below!

Gabe got his monthly RSV shot today, and was less than thrilled about it. I am sure you can imagine. Since the nurse handles the shots, we don't see our pediatrician on these visits unless there are problems or we have concerns, but I saw Dr. Voyles in the hall and pointed out that Gabe was off of oxygen. He did a double take and was surprised and pleased with this latest bit of progress. Later, he popped in between other patients to chat and get caught up. We always get a weight check at these visits, so weight gain was another plus. Last month he weighed in at 17-3 and today he was 17-13! So he is continuing to gain. We have been juggling the milk and food amount, so I was relieved that we are doing ok with that. His jowels don't seem to suggest any problem, but I have noticed that the leg and body rolls don't seem so pronounced anymore. He is also so much more active that I have wondered about his caloric intake. We will be back in Indy next week to see Dev. Peds, so I imagine we will work out those issues. I have a copy of our current schedule all ready to go. Speaking of feeding - last Friday I made a beef stew and since he has been exposed to a pretty wide range of foods now, we decided to mash it up really good and let him try it. It was definitley more flavor than he is accustomed to and it had more textures too. At first he seemed a bit unsure, and we got a couple of pretty humorous full body shudders, but then he seemed to settle in and really like it. I didn't remember until later that I did put some red wind in the stew - but surely the alcohol simmered out...right? Now I'm trying to remember if he took a nap after that....

We continue to work on the "bye bye" wave and syllables. I feel confidant he has the sound down, but Josh and I are still the only real witnesses to the waving - he does it!! We swear! Grandma Maggie has him raising his arms to the "so big" game, but we haven't really witnessed that one. I guess he has his specific performances for specific audiences. It seems that his strength grows daily. Pt and OT both have us working those leg muscles for squatting and standing. It seems that we just started that less than two weeks ago and he can already stand for 8 or 9 seconds holding onto something, but with no other support. Karen (PT) hasn't seen that yet, so I think she will be very amazed when she sees him this week. I never imagined we'd have progressed so far by this point. Just to look at him, you'd never guess what he has been through. He is so happy and despite his reclusive life, when we do encounter new people, he doesn't seem to have any stranger phobias yet. He'll smile and flirt with anyone. He still loves to look at and interact with his big brothers the most and they love interacting with him. I don't think they fully realize how close Gabe is getting to being able to get into their stuff. Along those lines, we have had several discussions about keeping their big boy stuff out of Gabe's reach, especially the smaller toys. We have worked so hard on the oral aversion exercises, now EVERYTHING goes in Gabe's mouth. Keeping their little pieces (and probably lead-leadened cars) away from Gabe's mouth will be a challenge for quite some time I would imagine.

What a week it has been. After going 10 psychological rounds with myself, I decided I needed to be in Denver over the weekend to say goodbye to my Grandmother. We are having a bigger family memorial for her in the spring in Indiana, so most of the family will be attending that one and I didn't really need to feel obligated to go to Denver, but I still felt I needed to be there. I got to see some family I had not seen in years and likely will not see again for many, many more years. Before I left, I realized that I hadn't been away from Gabe for more than about 5-6 hours since he came home, so it was time. It was good for me to leave and acknowledge that the household would still run perfectly fine without me, which ofcourse it did. Josh did a great job, which I never doubted. The three pages of notes I left behind were more of an FYI, or guidelines if you will. ;) It was good to go, and it was good to come back home.

In other news - we have been derelict in announcing Gabe's accomplishnments. On December 30th he got his first tooth!! It looks like number 2 might be through by morning. We have been working on "B" sounds and saying "bye, bye" along with waving. He is getting the hang of the "B" sound (well, it comes across a little bit more like just spitting with sound, but I like to call it a "B") and just this evening, he began waving at us. The older two were downstairs and Josh and I were both on the kitchen floor waving and grinning like fools. Ofcourse Josh jumps up to videotape the little genius and he reverts to just grinning back at us. Then the tape ran out. Oh well, we'll get it on tape next time. In other "bragging reports" his therapists say they are observing weekly progress - he is better every time they are here. He is pretty much an "independent sitter", with a little spotting still required. He can roll around to get from point A to point B. He has accomplished the pincer pick up technique, so we cautiously have let him have some of the Gerber fruit puffs (they pretty much go to complete mush when they are slobbered on) outside of his mesh feeder. He is still a little wishy washy on the sipper cup - sometimes he loves it, sometimes he wants nothing to do with it - and some food textures are not readily accepted, but I think this is at least normal for a 7 month old, as in not necessarily a delay. Ginger has some suggestions for us to discuss with developmental peds that will help move him forward and onward with oral feeding, and hopefully less dependance on the tube. We will get the swallow study on the same day as that appointment (January 24th, I think - it is a Thursday) so hopefully we will know more than.

I was looking through my old calendar and we are about one year out from that first ultrasound. Everything changed after that day. If anyone happened to save any of those early emails (??) I would love to have copies. I don't know why I didn't save them. I save everything else! I am too tired to get mushy and sentimental tonight, and that is where I am headed with this if I continue, so I will sign off. Thanks again and again and again to all of you who have been here with us - ok really, I am done.

I forgot to mention - one of their BEST gifts was the t-shirts they got from Indiana State University! They have quite a legacy there - including both Grandpa's, uncles and both Mom and Dad! Go Sycamores!

Happy New Year

Are your resolutions written? Are you ready for the new year? We celebrated pretty quietly at home. Gabe was the first to conk out and Kendrick followed just before 11:00. Justin made it to midnight and was pretty proud of himself. We had the Travel Channel on while passing the time and they were showing other celebrations around the world. Justin got a globe for Christmas, so we got it out and showed him where the other cities and countries were that we saw on television. We are definitely ready to embrace a new year. 2007 will be a long-remembered year in our house. It has been almost exactly a year since the first ultrasound which started us down a very uncertain road. I didn't save any of the emails we sent out before Gabe was born, but my Mom did and she printed the ones she had and brought them up at Christmas. Reading through them was close to reliving it again. It was quite a year with more emotions experienced than I can ever remember before. Fear, uncertainty, joy, elation, sorrow, - pick any emotion you can think of and I think we were there at some point. We have more blessings than we can count. In just our little family, there are 100 digits to count on (50 fingers and 50 toes) and I don't think it would be enough to count them all. Things happen for a reason and I know Gabe's life and struggle touched people and changed them - it certainly changed us. Sometimes the reasons for what happens in life are right in front of us - obvious lessons to learn. Most of the time I think they are more mysterious and we aren't meant to know - we can guess and do our best to make sense of what has happened and why it happened and maybe we will figure it out, or maybe we can learn those lessons as "faith lessons". Some things just are, some things just happen and at some point we rely on faith or we fall.

We have been blessed with three miracles - three happy, healthy and beautiful boys to love. We couldn't ask for more. As one year closes, we celebrate a life begun here with us. As another year begins, we celebrate a life begun again with Christ. To quote my brother, My Grandmother is free. She is home. We miss her dearly and ask for your prayers for our family. Thank you.