Pulmonology Appt

Yesterday we saw Dr. Macke and they continue to marvel at Gabe's progress, and our ability to dance around the nasty bugs (knock, knock). He was comfortable enough to write the order that gets rid of the apnea monitor - The song from Pinocchio comes to mind "There are no strings on me!" So another piece of equipment made its way out the door today and we were happy to wave goodbye. Our other topic of discussion mainly involved the feeding/weight issues. He has gained about 2.5 lbs in the past couple of months, which is fine, but he was in the 25th percentile for weight by their charts, which is at the lower end of normal. We had been hanging out closer to 50th. Given Gabe's nasty stomach bug last month and the fact that he really just started eating more normally this last week, he wasn't too concerned, just felt it was something we needed to watch closely. We return in two months. Unrelated to the medical stuff, I observed a new "issue" with Gabe while we were there. Stranger awareness. Gabe was hanging out on the exam table chewing on a teether when Dr. Macke came in. Dr. Macke propped himself on the exam stool and leaned down to Gabe's level and they had a chat for a bit. Everything was just fine and all of a sudden, Gabe puckered up and started to scream. We all assumed he hit a tender spot on the gums, so I picked him up and continued to discuss Gabe's whatevers and whatfors of the past two months while doing the Mom stand, sway and pat stance. Gabe settled down until Dr. Macke stood up and started talking directly to him again, then the waterworks resumed. I began to think maybe it was him (and Dr. Macke is really great, so I hope he didn't take it too personally)....then later that evening Grandma and Grandpa came over to watch the herd for us while we were at our "Why Catholic" meeting (it's an awareness and sort of bible/catechism study, not an identity crisis), apparently while we were gone Gabe was a little fussy with Grandpa a couple of times. So to those of you who have not seen Gabe in a while, try not to take it too personal if he doesn't greet you with his usual enthusiasm. Just try to remember this is a pretty normal phase, and we always celebrate normal where Gabe is concerned. Tomorrow is the regular nine month appt, so we'll see...

Happy 9 months

Gabe is 9 months old today, which also means we have been back home for 7 months. Time just keeps rolling along. We are still working on crawling, I think along with feeding, it is our biggest current goal. He tolerates being on his belly better now, but still doesn't like forward motion (I'm sure the tug of his button just doesn't feel right). Not that he doesn't want to be mobile, you can see him watching his brothers, the dog wandering by or that toy, piece of paper, lint that is just out of reach and you know he wants so badly to go somewhere. We get him up on all fours and he tolerates it better than he used to, but still gets aggravated after about 30-60 seconds. He likes standing and pulling up better than getting on all fours, but we've been told that crawling is very important and even if he should walk before he crawls, he still has to learn to crawl. Something about that opposing motion involved in crawling that integrates the right and left brain. He could have some real issues down the road if crawling is skipped. I knew it was important, but not that important. So, we'll work on the crawling!!

Feeding seems to be moving right along. He hasn't had any big increases in the past few days, but we're holding steady and don't seem to be losing any ground for now. This week we see Pulmonology here in town. Maybe Dr. Macke will tell us Gabe doesn't need to be on the monitor at bed time anymore and we'll see another piece of equipment head out the door. That would leave only the nebulizer, I believe. Is that right? I think it is. I don't think we'll stop the breathing treatments soon, but now that we are only doing two per day, it isn't a big deal. We usually do it at morning nap time and before bed time and he will often fall asleep during the treatment anyway. I think it is actually comforting to do the treatments, since the area seems to be lousy with RSV. A couple of weeks ago he developed a bit of a cough with his snotty nose and I wondered about it...but it never seemed to progress into anything too worrisome and I can't help but think the treatments may have helped stave off a more serious problem. We're doing our best to follow the rules and keep him and the older two as safe as we can, but with all that is bouncing around and as sick as so many people are right now, we feel as though we've been protected. We have needed this winter to be as healthy as possible and so far we've been incredibly fortunate. I have got to stop saying that!! It ain't over yet - as can be evidenced by yet another dusting of snow on the trees.

As each Sunday goes by, and more time passes, I find myself looking more eagerly and hopefully toward spring. Spring is a time of rebirth and renewal after all. From the moment we decided we were taking Gabe home, against the advice of some, we knew we did so at a risk and that this winter would be very important. There is only one week left in February, then March, then April....no, it isn't over yet but we're getting so close. I need to walk outside and feel a 70 degree breeze on my face. It has nothing to do with cabin fever or a desire to walk outside without a coat. That first crocus pushing up through the earth will signify another hurdle has passed. I've never run a marathon, but I know how it feels to be in the last leg of a long race. In the beginning of a race, your breath comes hard and fast until you find your rhythm. You are aware of your position, how far you have to go and you gather in and focus. Then you do settle in and find that rhythm, you feel good about where you are and don't dwell on the finish - it's too far off to think about, no not yet. It's time to focus on the next hurdle, one step at a time, pass the next one and the next one, just keep going. Ultimately, you turn and find yourself closing in on the final leg of the race. It's not over, but it's getting closer and your breath comes faster again. You're tired and you become aware of all the aches, but there is also a gathering inside, anticipation for that final push to the finish. For me the final push was the greatest moment, and I almost always had it in me to surge forward. There's such focus and clarity then, and the aches and breathlessness fade away for those last few moments. If you like this metaphor, then I think we are (hopefully) heading into the last lap for this winter. We're tired and anxious for normal, but the final push isn't here yet. We're antsy and anxious for it, ready for the moment when we can go to church as a whole and complete family, without debate or reservation. Ready to venture out to the grocery store or to Target, and have no regret other than the obvious regrets that come with taking three children along shopping. Oh we've relaxed some. The last sleep study gave us tremendous peace of mind and every time I look at him, I know he's really ok. But still, there's a sense of anticipation. Every spring it seems with each bloom I see thrusting its way quietly up through the earth and bursting open, something bursts open inside of me too. I can't even imagine how I will feel this year when I see that first unfolding daffodil or crocus, announcing the earth's rebirth. I may just be downright giddy.

Illness update

Well I certainly hate to speak up too soon once again, but everybody seems better today, so hopefully we have dodged another flu bullet. We didn't even have to call in sick for Justin since the schools were out due to the ice storm Thursday and Friday.

There are a few more pictures down below if you want to check 'em out. Not much time today to post more today.

Spoke too soon

Yesterday at work I was commenting how fortunate we had been thus far this cold and flu season. On the local news the other night there was a story regarding the near epidemic flu levels around here. The two local hospitals are full. We have had our share of the sniffles and ofcourse Gabe's 48 hour vomiting but, but other than that, it hasn't been too bad. Wellllll....Justin woke up running a fever (fortunately he doesn't appear to have any other symptoms just yet, I guess we'll see what the day brings us) Josh came home from work at around 2AM with a headache and tummy ache, I woke up with a creepy crawly feeling in my skin, which usually means fever or oncoming fever. I too have a headache and some congestion, but so far it isn't too bad.

Justin is looking over my shoulder as I type and offering "suggestions". He is doing very well with his reading and when he read the part about his fever, he wanted me to be sure and let everyone know he is doing his best to take care of himself. True story. I have a back-seat reader/writer.

To update on Gabe, he got his Feb RSV shot on Tuesday. His weight is down about 3 oz from three weeks ago, but the pediatrician wasn't too concerned about it, especially since Gabe has been teething and snotty. I mentioned that he has been doing much better with feedings in the past few days, so I am not too concerned about it. In fact, just yesterday he took about 17 ounces from his cup, which he has never done before. I started a feeding log to keep track of how much he is getting, especially since I am working a little more and there are multiple in charge of feedings now. Well, really just Josh, Gradma and I, but it can still get confusing to keep track of how much he is getting. I probably should have started this when we first began the oral push.

Ok, Justin needs help with his work book, Kendrick has that dangerously mischievous grin on his face and Gabe is starting to fuss for a nap. I am amazed I got this much time with three boys up and active.

Another busy, but fun weekend is past. We celebrated Grandpa Mike's birthday (they didn't reveal my number, so I won't reveal his) and got to visit with Aunt Kaci and Uncle Justin, who made the trip down from Indy. (Little) Justin is getting better at playing some of the grown up games, so he enjoyed himself and I think was proud of himself too. He needed some help with dominos, but still managed to beat everybody.

Gabe has some pretty swollen gums, which we think has been the main factor behind some other troubles. He has had a perpetually snotty nose, the persistent fluid in his ears and some increased moodiness and decreased interest in the milk. It has been a concern, but over the weekend he has increased his oral intake of the milk. The last three nights he has taken almost 5 to 5 and a half ounces by mouth before bedtime. That is the most he has taken orally at one time. The past three mornings he has taken over 3 ounces at the first feedeing, compared to the 1.5 oz he had been taking in the morning. Over the weekend he took around 14 ounces orally all day, compared to the under 10 he had been taking. He is also getting a little more comfortable with slightly increased textues. I have been playing around with some fresh fruits and veggies and the food processor to make our own baby food, and he really likes this better than the stuff at the store. That has helped increase his oral intake at meal times. Yesterday he took almost 4 ounces of food at each meal. We are still using the mesh feeder and increasing the variety we put in there. OT, Ginger, gave some more suggestions to increase his fiber, since constipation has been another issue we've been dealing with. We add extra formula to increase caloric quality, so that is in turn aggravating the constipation. We have tried apricot nectar in his cup and raisins, blueberries and fiber cereals in the mesh feeder. I think we are slowly seeing the benefits. That's all I have time for today. Lots to do!!

All in good time

At work the other day I was going through a drawer looking for something...probably a pen, since I am constantly picking them up and laying them back down in mysterious places...anyway, I found this photocopy of ultrasound pictures. I picked it up and just looked at the ultrasound images of Gabe, before we knew much about him, just that he existed and we loved him. We had so many ultrasounds and I wondered which set of images I was gazing at. I was caught off guard when I looked at the date. Can you see it? February 12th, which happened to be the same date, one year previous. Instantly I remembered the circumstances of this ultrasound. All of the amnio results were back and they were all normal. This was our 'false sense of security' phase. A few weeks prior, it had been suggested that we go to IU for a second opinion. We discussed it and decided we wanted to wait a few weeks and repeat the ultrasound. At the time we hoped maybe every abnormality found in the innitial ultrasound would resolve itself and maybe there wasn't anything wrong at all. Looking back I couldn't say if we were clinging to false hope or if we really believed he was fine. By this time I felt in my heart we would see him grow up, that eventually everything would be fine, but I couldn't completely shake the feeling that there was more to it. I just knew that at 20 weeks, if something were to happen he would not survive no matter where he was born or what the ultimate diagnosis was, so we decided to wait and see if time solved everything. February 12th was the repeat ultrasound we pinned our hopes on. Hope that all was well after all. Hope that we would breathe a sigh of relief at our big scare, relax and enjoy all of the normal planning that comes with the anticipation of a new baby in the family. As we got situated in the dark room, I took a deep breath and told myself everything was fine, willed it to be confirmed on that screen in the corner. The familiar images appeared and as much as I wanted to watch the miracle of our third child, I found myself studying the face of the ultrasound tech, looking for clues. I finally asked about what she saw. Many of the initial abnormalities actually had resolved, but the most worrisome - the fluid around his heart - had not changed. We knew then it was time to take the medical advice, take the second opinion and hope for the best. You all know the rest of the story.

Gabe is 8, nearly 9 months old. It is incredible to think that we have yet to reach the one year mark from finally getting that all important diagnosis. As difficult as it was to hear it, if we hadn't known ahead of time, if time had been wasted figuring out what was wrong after he was born, he wouldn't be here. I can only imagine how conflicted our doctors must have felt when we first chose not to take the trip up to IU. I am sure they must have feard we were being foolish. Timing is everything and we don't really accept coincidence anymore. We felt so strongly that waiting, even just a few weeks, was the best decision. Who knows, maybe the DH wouldn't have shown up on that MRI if we had gone sooner, or maybe we just needed a little more time to live in ignorance, savor the normal amnio results and feel that hope (even if it was false hope, it strengthened us somehow). That may not be the case, but I can't help but feel there was some reason for the timing. We believe so strongly that He has provided guidance all along, even if we didn't see it right away. Timing has been key throughout all of this and I can't dismiss our need to wait, second-guessing it now doesn't accomplish anything anyway. By the time we heard the actual diagnosis, we had already gone through the terror of the amnio and the implications of all that we could be facing, had gone through the "false sense of security" phase, and I think we were just ready to know what was going on and know what could be done. We were as ready to face the truth as we were going to be, and finally able to handle it. So the story goes anyway...

There are some more pictures below, or at least there will be shortly...

Another busy Saturday has come and gone. Ours got started early, by decree of the older boys. Gabe has had a snotty nose and cough, which makes for a restless night. About 5:30 this morning, I had to suck him out which he didn't really appreciate. At this point, we were both up so I slogged my way down the hall to the kitchen, yawning. As I measured out coffee and formula, separately I hope, I became aware of my cold feet on a cold floor and wished I'd had the forsight to throw on some socks. Sure, foresight before 6 AM? With the coffee pot hissing and gurgling, I headed back down the hall to retrieve Gabe, who was having a discussion with his crib toy. Even that early, I had to smile at his babbling. I peaked over the side of the pak-n-play set up next to our bed and he smiled with his wide-open mouth and waved his arms, then started rubbing his eyes. It seems that I have been forgiven for bringing him fully awake in such a rude manner, especially when he sees the cup in my hand (the formula, not the coffee, I think). About the time he's had all he's going to take and I have him settled back in bed, Josh mutters something (he's home from work now) and comments he heard the boys door open down the hall. About that time I hear the pad of little feet down the hardwood floor. We usher them back to bed (but they never went back to sleep, we're fairly certain) and Josh asks the question we have never been able to answer. Why is it on a school night we can get them to bed by 7:30 and still have to drag them out of bed the next day....yet on Friday night we let them talk and giggle in their bunk beds until nearly 10:00 and they are up and ready to go before 6:30 on Saturday. *sigh* we'll see what happens tomorrow! Fortunately they did fall asleep pretty quickly tonight. I am going behind them soon. Just a few things I wanted to get down here first. At dinner Gabe started mimmicking "uh oh!". Naturally, it takes a very well trained ear to pick up this verbalization and interpret it, but we knew that was what he was saying. He very much enjoys clearing his tray of every toy, napken or any other item that falls within his reach and we usually respond with "uh oh". Now he does too...

I have one more "awww factor" comment to make. This one comes from Justin. I keep forgetting to mention it, so I am posting it. I think it was Thursday night, the boys are settling into bed, I've fetched their drink of water, fetched another animal and begun the dance to try to get out of their room before another request is launched. They have already said their bedtime prayer, but sometimes we have prayers for people. We should do it every night, I know, but you should hear the list these two can come up with...it can take a while. Anyway, as I am backing out of the room, Justin says he wants to pray for people. How do you say "no" to that? I acquiesce, but decide it would be a good idea to put Gabe in the pak-n-play first. I don't remember everyone he chose to pray for, the usual Grandparents, aunts and uncles everyone in his kindergarden class, the dogs (he still includes Brix because he just knows that Brix must really miss us and maybe he doesn't understand why he coudn't live with us anymore - this is logic straight from Justin - so we need to pray for him) but the real kicker was when he paused then looked me and said "that's sure a lot of prayers". I agreed with him, but wasn't prepared for his next statement. He said, "maybe we need to pray for God because he sure is busy with all of these prayers and he probably needs some too". Well, what do you say to that? I agreed that Lent is a particularly busy time for God and although He can certainly handle it, I am sure He would appreciate Justin thinking of Him.

I know this blog is primarily about Gabe and his progress, but we still feel it is important to mention the two big brothers who also sacrificed a lot this past summer. We thank God for all of our boys. They can make us crazy at times, but they never cease to amaze and humble us. This parenting thing is not for the faint of heart, and we've made our share of mistakes (I shudder to think how many more we've yet to make) even here at the starting line, but what amazing rewards come along with every frustration. Every morning, Justin and Kendrick want to snuggle on the couch before they get ready. I can't even describe how much that means to me. I remember the morning of May 23rd, the day we would be heading up to Indianapolis for Gabe's arrival, snuggling on the couch under a blanket with both boys. It gave me such peace and such angst all at once. I didn't know what to expect in the coming days or how long it would be until we were all home together again. How many mornings would go by without a morning snuggle? I knew we'd all adjust, we'd figure it out. But there that morning, I held on tight and tried to hold on to normal for me and for them for as long as they let me.

It has been a busy week and as usual, time has gotten away from me. Thanks for all of your birthday wishes and good health wishes. I did get over my cold, a little present from Josh, and had a very nice weekend. A couple of weeks ago I found that the weather either mirrored my mood of the evening, or induced it. I'm not sure which. If the weather affects our moods, then it could certainly add a layer of complexity to anyone living in Indiana. We've had it all in the past week or so, and maybe some arguement could be made that there is some similarity at home, but I don't think that is the reality. Thankfully. We still have our ups and downs, but it still seems that life just isn't quite as turbulent as we thought it would be. We have our routine, naturally it gets disrupted, then we find our way back to what works. Hmm...that is an interesting statement. Sounds familiar, isn't that one of the laws of physics? That was a long time ago, so forgive me if I can't put it all together.

Gabe attended his first little kids birhday party. We debated on whether or not it was a good idea and figured it probably wasn't. So Josh stayed home with Gabe and I took Justin and Kendrick to the swim party for a boy in Justin's kindergarten class. It was at the Y and when I got there, we discovered that it was an after hours party, so we were really the only ones there. The party wasn't an overly large party, so I called Josh and we finally decided that it might be ok. The weather wasn't too cold and by the time Josh got there with Gabe, the cake/presents portion was done and everyone was getting ready to swim. The whole family suited up and enjoyed some time in the pool. We recalled that when the older boys were this age and would go in the pool, they were not really fond of getting their faces in the water nor did they appreciate floating on their backs. Gabe had no problem with either of these. By the end of the party, he was leaning over and planting his own face in the water. I think we're in big trouble when he gets a little bigger and a little more capable of asserting his own independance. BIG trouble.

Sunday we celebrated my birthday with Pizza and cake (is there any better combo?) over at the Wittmer's and enjoyed the Super Bowl. What a great game! Nuff said.

As we have mentioned before, sometimes good things come from seemingly not-so-good things. Case in point, Gabe continues to do better and better drinking from the cup. It's still slightly thickened with extra formula for safety, and also for nutrition, until we get swallow study confirmation that it really is safe and also until he can take more volume throughout the day. He is averaging at least 10 ml and sometimes 15 per day from the cup! After his nasty bout with the stomach but, he was not very accepting of food textures and that has gradually improved as well. We reasserted the oral swiping, the brushing, and use of the mesh feeder. Everyone says these orally averse kids will like some crazy flavors, so we put it to the test. Did you ever give a baby a pickle just to see the hilarious face they make? What is wrong with us....? it is funny. Anyway, I put a chunk off a dill spear in his mesh feeder and he sucked it nearly dry. Tonight I scrambled myself an egg and saved the yolk for him, since it is safer for an 8 month old. I put the scrambled yolk in the feeder with some saltines (we like our scrambled eggs with crushed saltines and cheese - try it!) and he liked that too.

So another week has past and we're still here, figuring it out as we go. Finding our way back to what works...

Snow Day...?

For the last two days we have been hearing about the winter storm that is headed our way. Yesterday schools let out at 1:30 (we just happened to turn the tv on at 1:15, or Justin might have had a long wait to be picked up) and are on a 2 hour delay this morning. There is no snow to speak of on the ground, just a few flurries in the sky. I would say it sounds more like my parents area of NC, but they probably would have been canceled for the week with the first prediction of snow. It was nice to let the boys sleep in a bit this morning and not be so rushed, so I'm not complaining, and neither are they (case in point, sleep is a good thing in this house!). I was on the blog when they woke up, getting ready to post, but they decided they wanted to look through some pictures. Justin did a good job reading all of the captions - it is amazing how quickly he has mastered reading and can tackle words that are beyond a kindergarden level. He has also learned to tie shoes, which he is proud of.

On to Gabe's progress. He continues to do well with the cup, and we are trying to get him to take it without any vanilla pudding to flavor it. Can you say spoiled? He does pretty well when he is hungry taking just the formula, but after a couple of ounces he gets finicky. We discussed getting pure vanilla - without the alcohol - to give him the flavor he has decided he likes but without all of the sugar. Since he only takes about half the volume of milk/formula he did before, we are stepping up the fortifying to increase the calories (quality over quantity is the goal right now). Ginger (OT) was pleased with how well he is doing with feeding, but he was a bit grumpy during their actual session yesterday. He complained to Karen on Monday during PT as well, so we aren't sure what that is all about. We are particularly working on keeping his hands uncurled and reintroducing textures - he was doing pretty well with textures before he got sick but is having issues with them now. He had mac-n-cheese in his mesh feeder the other night, and that went well. I sometimes wonder if he wasn't getting more milk down the tube than he could really handle. Although the projectile reflux had all but disappeared, we suspected that he was still refluxing on a regular basis. He was a very restless sleeper at night and a catnapper during the day. He has been sleeping very well and taking two longer naps during the day since we have taken the oral approach. He doesn't fuss so much when he is laying down and doesn't seem to need his pacifier so much. Ginger mentioned that the pacifier helps with the reflux and babies will really go after it in attempt to settle the reflux. His ears are also improving. He still has fluid, but is passing his hearing screen now. We are going to worry less about numbers (volume) and focus more on how Gabe seems to be doing. We still put some pedialyte down the tube for hydration and electrolyte balance and we do put whatever milk he doesn't take in the cup at bedtime down the tube, but other than that it's all oral.

Justin is waiting impatiently for his turn on the computer - so that is it for now.