Holiday Guestbook!

We hope you'll post pictures of your own holiday celebrations - and that as you look to the new year, it appears as bright and hopeful to you as it does to us.

Late Christmas present

Our family got a late Christmas present this morning. We receved a call from pulmonary with the results of Gabe's last sleep study (12/18). He doesn't have to be on oxygen anymore!!! We were just hoping they would say he could be off oxygen during the day, but keep it on at night. His average oxygen saturation level was 97.7%, and the lowest it dropped was 92% for only a few seconds. (Above 90% is normal). The carbon dioxide average was 35, with the highest reading being 40 (30-50 is normal). They also told us there were "virtually no" blockages or obstructions (apnea episodes). The man from Apria healthcare came today to fill Gabriel's oxygen tank. He hadn't received the order to discontinue the oxygen. But after calling the office, he took the oxygen tank and the pulse ox monitor. Gabriel will stay on the sleep apnea monitor at night for the time being. The secretary didn't know he was on an apnea monitor when she called, so she has to check with Dr. Macke, the pulmonologist.

We were very excited when we heard the results of the sleep study. We can finally breathe a sigh of relief that we made the right decision back in July when we decided not to put him on a trach and ventilator. It was a difficult decision, but we took all the information we had and went with our "gut" feeling. It's hard to believe he's off of the oxygen and it's only been five months since he came home.

Thanks again for everyone's prayers. It's obvious they have been working.

Merry Christmas

Whew! Time to sit down and relax for a little bit. Gabe is napping, Josh and the boys are off to Huntingburg to visit with the extended family for a little while, we just finished talking to Mike and Toni (my, Peg's, brother and sister-in-law), Mom is knitting socks for Dad while he surfs the TV for football (we finally took a break from the Christmas Story marathon) and Tim is reading his book. We briefly discussed the possibility of a Euchre game a little later. The floor is littered with various toys, matchbox cars, books and stray pieces of tape. Santa was awfully generous this year, and we want to express how much we appreciate Santa's Helpers - you all know who you are. The lights are on the mantle garland as well as the tree, which we hope doesn't spontaneously ignite. It's about as dried out as a Christmas tree can get. If you sneeze, it starts raining needles. It's been a whirlwind three days of good food (Grandma Maggie and Grandma Carolyn don't miss a trick), wrapping paper going on and coming back off again, new games to play with good-natured (?) family disputes to settle, and ofcourse the peace and wonder of the miracle that is Christmas. I am working on getting pictures posted. Josh has the camera and I forgot to download pics from yesterday and today, but there are plenty to share from the past week. Enjoy - if you get a minute, share a short anecdote of your own holiday celebration. We'd love to hear what you've been up to. Merry Christmas to all and to all.....a good afternoon...?

It has been a very busy weekend for us, as I am sure it has been for most of you out there as well. I have lots and lots of pictures I can't wait to share, but since I am thinking of my pillow with great longing, it will have to wait. There will actually be some down time for me on Christmas day, so that will be our Christmas gift to all of you! ;)

I am mainly hopping on here to ask you to continue to keep the Hufty family in your thoughts and prayers. Jack (one of Gabe's module mates) had surgery to connect his esophagus and stomach. We have been reading his blog daily, checking multiple times per day for updates. He seems to be doing well, which is a great blessing. On the flip side, they will be celebrating Christmas in the PICU at Riley. I know they are grateful to be there and grateful that Jack is through this huge hurdle and one even bigger step closer to "normal", but it can't be easy either. Big brother Logan (Justin and Kendrick's NICU buddy - I think they may have formed a "Module 3 Big Brother's Club, but I am not positive) surely misses Mom and Dad, as they probably miss him as well. I know most of us will be heading to Christmas and/or Christmas Day services and I ask that while you are there, send up a prayer for Jack and his family.

That's all I wanted - it will probably be a couple of days until I return, so Merry Christmas to all of you. To all of you we won't see, we miss you! It seems this is the appropriate time to thank everyone out there once again for all of the love and support we have received from you this past year, especially the past 7 months (yep - Gabe will be 7 months old tomorrow). We appreciate all of the emails, cards, phone calls, text messages and ofcourse, the blog comments. They have kept us going and we are grateful. This is such a busy time of year, it's easy to get caught up in the details - I like seeing to the details, since it makes everything extra special - but I admit I can overwhelm myself. When I get overwhelmed, I get, well...like most of us get I suppose - cranky would be the nice word for it. Even in the midst of the hecticness (is that a word?) there is usually a moment when I manage to capture the sense of calmness that this time of year is supposed to be about. The sense that although we tend to assign great significance to those details, they are really unimportant in the big picture. The sense of something bigger and greater, which brings comfort that can sustain me throughout the year. These moments come to me when I need them most and I find that my mind is quiet, my heart is full and still. The point of this last paragraph is to wish you that same sense of peace - peace of heart, mind, and soul. I hope that you are able to capture that moment for yourself, and hold on to it for as long as you can.

Sleep Study number 5 Complete!

Gabe is snoozing in the stroller next to me and I imagine not long after we hop in the car with Josh, I will be too. Another long night of up and down (for me, Gabe actually slept pretty well) behind us, with more hopeful news to follow - we hope. Yesterday we met with Dr. Macke in Evansville, then we were on the road to Indy again. Good news from yesterday's appointment - we finally discussed the bloodwork from October 26 and Gabe's bicarb levels (CO2 in the blood) are finally back down in the normal range- which is below 25. Before he left the hospital I believe his levels were in the 30s, in August it was 28 and in October it was 23!! They did checked his O2 sats when we arrived on the 1/4 liter and he was ofcourse at 100 and then we took it off and they checked him at the end and he was holding steady at 98. During last night's study, once again they never felt they had to turn on the oxygen, so he had another night on room air. Based on the last study's results, we stayed on the O2 b/c he did wander down in the 80s from time to time and also b/c he was still having "obstructive episodes", althought they had improved. And ofcourse, we are still watching those CO2 levels. Just as I had before, when I was awake I studied both the CO2 and the O2 monitors, looking for clues as to what the outcome would be this time. I never saw the O2 wander below 95 and the CO2 was usually steady at 36 or 37. We are very hopeful that these results will get Gabe off of the oxygen all together, or at least during the day. Dr. Macke told us yesterday that we could reduce the breathing treatments from 3x a day to twice a day. He also seemed hopeful that we might be rid of the oxygen after this study, and that given a choice of weaning off the oxygen and weaning off of the breathing treatments - his goal was to get him off of the oxygen. Good news! So now we wait. We're pretty good at it by now.

It is surreal to me that just under 5 months ago we were agonizing over the decision to go home on oxygen and "take our chances" or get a trach and go home on a ventilator. Now we are discussing coming off of oxygen completely. I know there were many people who supported our decision to forgo the trach, but I don't think any of us really thought we would be weaning from O2 this quickly. Maybe I'm wrong - nurses? Maybe they knew better than I did and they are just reading along and smiling knowingly. They always had faith in Gabe. Naturally we did too, or we never would have come home without the trach, but I still expected that the oxygen wouldn't really even be discussed until spring.

We were warned by Dr. Macke that he has treated some RSV babies in Evansville now - so it is in the community. It's been hard to keep him so secluded when we want nothing more than to show him off, but it will be well worth it if we can stay out of the hospital this winter. We'll just have even more to celebrate in the spring - and when his birthday rolls around. OK - time to sign off. Josh should be here any minute and we plan to visit the nurses, wish them a Merry Christmas, and then head for home. I still have to work later today and Josh is working tonight - and my family should be on their way from NC. Busy day, but that's what we live for!!

Therapy Time

As part of Gabe's OT, Ginger has us slowly rotating in a saucer - to stimulate his vestibular system. As she was explaining what we were doing and why, I thought to myself "Finally!! Something I really do understand!". Both boys love to help and Justin does a nice job of slowly rotating the saucer. Kendrick, on the other hand, well....we'll just say that he needs a little guidance on his technique. Otherwise Gabe would be spinning away across the room. Anyway, it is working like magic to help Gabe with his orientation and balance. Out of the blue, he went from sitting unassisted for maybe up to 5 seconds at a time to about 10 seconds yesterday. Today, during a PT session, we counted a 30 second sitting session, all by his little self. And now when he teeters, he will put his hands down to stop from falling. We've been working hard on this skill for the past month of therapy! I'm sure I don't have to tell you I was one proud mama!

If you have the time, there more pictures posted below. Have a great day!!

Big Step for Gabe!

Ginger, OT, was here again yesterday and we talked more about moving Gabe forward in terms of eating - since he is really showing more and more interest....which is pretty amazing. Ginger is pretty fantastic with Gabe, and he really lights up when he sees her - until she starts working his shoulders. The neck and shoulder area are still not his favorite exercises - but sooooo important. She felt that we could go ahead and try some breast milk thickened with rice cereal in a soft-tipped, two-handled sipper cup. We waited until he was getting hungry at dinner time and then Josh worked with Gabe while I was working on dinner. It was quite successful. Just like his brothers before, the process began with a chew session on the tip, but once he sucked a little and got a taste - look out! He was naturally a little startled that what he thought was a nice chew toy actually could produce, but we've been working on dipping the paci in milk during feedings and even cereal/milk mixtures - so the taste he got was a familiar one. It wasn't long before he drained the couple of ounces in the cup. Isn't that amazing? He's a little genius - or a little glutton in the making...time will tell. He went on to eat a little ham and apple spiced with a touch of cinnamon. It is one of his current favorites. He was awake and hungry this morning around 5:15, so we tried again. It went well at first, but I think once the initial hunger pangs were satisfied, he came to the realization that he was awake about 3 hours earlier than normal and that put an end to the cup session. So he went back to sleep, the rest of the feeding went down the tube, and I started up the coffee pot! It is now about time for Gabe's normal "up and at 'em" time, so my time here is finished. Today we go in for December's RSV shot, so I think we will get in some good therapy/play time this morning, since he may be a little miffed with me later. Actually, he settles down pretty quickly once he is done. I guess it's not much to handle for a little guy who started life as a pin cushion, so to speak.

One other note - Every time I check the blog for comments, I also check the sitemeter. It is so heartwarming and humbling to know how many of you out there still check the blog. We've had over 2700 visits since I set up the sitemeter in October. Over 320 just this week, and the week isn't over. 100 of those hits are probably my Mom, who is in Gabe-withdrawal, but it gives us quite a boost to know so many still want to know how Gabe is doing and how many are still cheering him on. Thanks.

The holiday season is upon us, and with it comes an increased shortage of "free" time. Sorry it has once again been nearly a week since blogging. Gabe is napping and Kendrick is playing a game on the old computer, so I have snagged a few of those freebie minutes. Gabe continues to make progress and amaze his therapists. Just this morning, his PT told us that she was noticing obvious change in his abilities on a weekly basis. Naturally we are quite proud of him! He works very hard and is very eager to please. He is also getting more and more interested in eating! Last night we tried peas for the first time and despite some initial reluctance, he was actually opening his mouth for them. He must be going through a growth spurt b/c we have actually witnessed some hunger-induced tantrums. Because he is tube fed on a pretty regular schedule, he really hasn't shown us any signs of being hungry before now. Friday evening Josh was holding him when I got home from working and Gabe was fussing. I looked at the clock and knew it was just a few minutes shy of feeding time. He usually doesn't fuss unless you are really late (which is rare, amazingly enough!!), so we both figured he was just tired. but I mixed up a little cereal anyway and surprise surprise, he was leaning in for the spoon. OK, so most 6 month olds will do that, but not Gabe, not normally. We are usually stuck using a crow-bar method to get his mouth open with a spoon, or using our fingers, which the OT explained are less intimidating to an oral-averse baby. So for Gabe to be leaning forward with his mouth open is a big deal. Back up a couple more days and I actually got him to take a few drops of milk from a dropper with his tube feeding - no coughing or other signs of distress. Ginger, his OT, suggested that we might soon try some milk thickened with rice cereal (safer) in a soft, two-handled sipper cup. He may be showing signs that he could tolerate a bottle, but the problem with introducing a bottle now is that if he does do well and decide he likes it, we would likely have quite a battle on our hands converting to anything BUT a bottle. Since it is getting close to sipper cup age, that is probably the best option for getting him less dependant on the tube sooner - over the long haul....if that makes sense. On a funny note, Josh noticed that Gabe is starting to play with his paci. If he is just sort of hanging out and has it in his mouth, he will flip the "handle" with his fingers. He'll just sit there and flip it up and down. Really cute, and YES, we are easily amused.

Ok, I am seeing signs that my time here is just about up. Before leaving, I would ask you all to share in our excitement over these little victories - you have been with us through everything, so please join us in our joy!! I would ask you to keep the Becker family in your thoughts and prayers as well. Uncle big Justin (Kaci's husband) lost his Grandmother (his Mom's Mom)Thursday night/Friday morning. They have done so much for us and were there for us all summer long whenever we needed them. I am sure this is a difficult loss, especially so close to the holidays. Our minds and hearts were with them all weekend, even though we couldn't be there for them in person as they have been for us.

"Rolling Along"

Well Gabe has officially rolled without even the slightest bit of nudging or tugging or encouraging. We were doing some morning work (tummy time today) and I got up to answer the phone, grab a pen and paper and my coffee out of the kitchen. I returned to the living room within a minute, I am pretty sure, and Mr. Gabe is not how I left him. He is completely over on his back. Naturally I squealed into the ear of the poor insurance lady who had done nothing but kindly returned my call. This is not the only incident today of travelin Gabe. Since Rudolph was on this evening and the two older boys were destined to be occupied for an hour, I slipped out to run a few errands. Josh had Gabe all situated on his floor blanket with some toys when he was summoned by an older child, I think to wipe something - I am not sure what, there is always something requiring wiping in our house - anyway, when he returned from wipe duty, Gabe wasn't even on the blanket anymore. Since he seems to be at his most mobile when nobody is present to witness said movement, makes you wonder what he is thinking and doing. I think that is it for now - oh wait, one more thing. Gabe continues to discover new sounds he is capable of generating for his and our amusement. I can't describe one, kind of sounds like a baby version of the Tim Taylor grunt. He has also discovered he can make some "raspberries", which has several variations. So far he hasn't decided to do it while eating - but I know it is inevitable. I remember when the other two discovered the beautiful splatter array they could create with peas with such an action. Funny how they always learn that trick when I am wearing white.

Friday was Gabe's 6 month check up. He now weighs in at 16 lbs and 5 oz. He is also 26 1/2 inches long! According to the charts, he is right at 50th percentile for both, so he is right on track. With the 'jowls' he has acquired, I kind of expected the weight might be higher than 50th, but not so. We discussed all of the usual check up stuff, and Dr. Voyles shook his head and smiled multiple times - he was very impressed that we really have very few delays, especially considering. The muscle tone is still a little on the low side, but has progressed so much since we have started therapy. Last week Ginger (OT) started working his upper body even more - she is having us dangle toys for him to grab and when he does, we gently give him some resistence. He's going to be the only baby with well defined pecs. Daddy is happy with all of the new muscle baby exercises - we'll just get him ripped.

Feedings are going well too. I tried a little kitchen experiment with him. They say he will like foods with more 'punch', so since I had only a quarter jar left of the sweet potatoes (he willingly took down 3/4 in one feeding!!!), I mixed it with a little apple sauce and a pinch of cinnamon (no butter, sorry Paula Dean). He made a little bit of a face at first, then he was quite excited about it. So I guess that was his first stab at second foods - just custom made!!

There are more pics below! There are also some updates on the prayer blog.