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.

I didn't realize it had nearly been a week since posting! That is life. Yesterday we were back up at Riley for a Neuro appointment. They are pleased with his progress, and ofcourse that there has been no more evidence of any seizures. We are officially weaning off of the phenobarb. In about 7 weeks, it should be gone. We aren't going back until early May, so we are slowly starting to see some daylight between doctor visits. On a sad note, when we went up to visit the NICU we found out that one of Gabe's module mates passed away sometime in the past month. We knew she had a lot of issues, but always thought there was hope she would go home. Some of you may have known the Coopers. Little Naomi was quite a fighter and we were very sorry to hear she was gone - but also realizing she was frequently an unhappy little girl and at least that is over for her. She was right across from Gabe, so it was impossible not to notice the bad days (sorry nurses, I tried to be oblivious). Our thoughts and prayers are with the family, and also all those who got to know her so well while she was there. I know it isn't easy for any of the docs/RTs/nurses to lose a baby, but I am sure it is rougher when one has been there for so long.

We give thanks...

Happy Thanksgiving. What do you know, I am getting to post today! It is 8:00 AM, and I am still the only one awake - I'm giving thanks for over an hour to myself with my coffee! I'm sure that time is drawing quickly to a close, so this will be brief....no really it will be....ok, I can just hear the eye rolling and doubt over the internet waves. You can stop it now.

It seems that the last several times I have been in a store that has music over the intercom I have heard Natalie Merchant singing "Kind and Generous". That is the song we set the slideshow of everyone at Riley who guided us through our time there. If you search around, we posted it a couple of month ago and you can peak at it again if you want. Ofcourse now every time I hear it, I can't help but think of all the help we have had these past 6 months. Actually, our gratitude extends back nearly a year, to all of those who helped us arrive at a diagnosis. We have spent so much time expressing our gratitude to everyone at Riley (and deservedly so) however I fear I have been remiss to all those who got us to Riley. Without their efforts to get us answers, all those at Riley who worked so hard would never have had the opportunity to work their miracle. So, on this day of thanks - Thank you to everyone in Dr. Riley's office, Dr. Turnquest-Wells' office, Dr. Padilla's office, Ohio Valley Heart Care (2 echocardiograms), Dr. Voyles' office. And ofcourse anyone else I may have missed. Along with that - to all of you, our family and friends (new and old, and those we haven't even met yet) who prayed for us, sent us words of encouragement and lifted us up when we have needed it most. So we dedicate "Kind and Generous" to all of you (quick special thanks to Shannon VanHyfte for helping me locate the lyrics). Natalie Merchant says it better than we could ever hope to express ourselves. Happy Thanksgiving to you and yours!

"Kind and Generous"
Natalie Merchant

You've been so kind and generous,
I don't know how you keep on giving
For your kindness I'm in debt to you
For your selflessness, my admiration
For everything you've done, you know I'm bound,
I'm bound to thank you for it....

la la la la la la la la la ...........................

You've been so kind and generous,
I don't know how you keep on giving
For your kindness I'm in debt to you
And I never could have come this far without you
For everything you've done, you know I'm bound,
I'm bound tothank you for it....

Na Na na na na na na na na nana na na na na na na na na na

Oh, I want to thank you for so many gifts you gave with love and tenderness,
I wanna thank you
I want to thank you for your generosity,
the love and the honesty that you gave me
I want to thank you, show my gratitude, my love and my respect for you,
I wanna thank you
Oh I want to thank you, thank you, thank you, thank you, thank you, thank you...

As I mentioned in a previous post today, Gabe is getting stronger every day and can tolerate more and more. The picture up and left shows the "bench" work recommended by PT. It has done wonders in getting Gabe to lift his chest and shoulders. I forgot to mention that b/c Gabe's shoulders are a little high, we are doing neck stretches as well. He isn't too crazy about those. I finally got just a few more pictures posted. If I don't get time to post tomorrow, Happy Thanksgiving to every one. We obviously have so much to be thankful for- thanks for your comment Susan! We will be thinking of all of you and hoping that your holiday is as special and meaningful as ours. If you are "lucky" enough to be in the workforce tomorrow, then we are especially thinking of you and your family. Josh works tonight and tomorrow night, but we'll all enjoy dinner together. To our family members we won't see, we love you and ofcourse we will be thinking of you and praying for you. It is going to be a rather intimate gathering for us - so there are a lot of people we will miss. At the same time, we will be thankful that our reasons for not being together this year have nothing to do with illness, or hardship. Happy Turkey Day!!

Sorry for the delay in posting - it has been a busy week and we continue to have computer issues, so it is even harder to work computer time into the schedule. On Saturday, Ginger Whitler (OT) met Gabe and began working with him on oral stim. She has worked with DH babies before and we hear she is the best! Her husband is also on the police department, so we have a lot in common. She was absolutely fantastic with Gabe and I think he responded reasonably well to the stimulation exercises. She was back yesterday and we learned even more. Between the PT and OT work, I think my head spins sometimes trying to figure out everything we need to do with him. In OT she has us working on desensitizing Gabe orally and by deep "brushing" & joint compression. In PT we are working on Tummy time, he sits on the ball and works on his trunk strength and we also do some "bench work" in which we use a cushion and Gabe kneels in front of the cushion and has his elbows propped on the cushion. It is working wonders for his ability to lift his shoulders and even his chest off of the floor. It seems like he has really taken off in the past few weeks. He can sit in the bumpo seat for up to 10 minutes on a good day with minimal assistance now and his reflux has gone way down. He doesn't even reflux every day anymore!! We have actually gone through an entire day without having to change his clothes! Gabe is also "talking" a lot more. He uses his lips and tongue to shape his sounds now. In fact, he is chatting away from his blanket on the floor as I type this. Justin and Kendrick are off of school for the holiday and are playing with their "Cars" race track in another corner - I actually just returned from settling a racing dispute. All was settled peacefully and no drivers were ejected or fined. For the moment, and I am certain it will be brief, all is quiet and under control.

I finally finished Dungy's book "Quiet Strength". It is a very worthwhile read, even if you are not into football. I was getting ready to put it away for the night when I got to the section about his son's suicide and I couldn't put the book down. Their story of strength and perserverance was nothing short of amazing and inspirational. They reached out to so many, even in the midst of their own grief. In one excerpt, Dungy talks about a father who wrote to him, worried that his own son may be contemplating suicide. Dungy actually wound up calling to talk to the father and son, who did not kill himself. As a family, they were able to turn their grief and pain completely over to God, which allowed so many good things to result from something so terrible. The book also gives powerful insights into all that is still good in the world of professional sports. You hear all the time that there are fewer and fewer role models for our kids, but I don't think that is true. All that is wrong with the world seems to make better headlines, but that doesn't mean I buy into it. I have seen first hand that there are plenty of great people for my boys to look up to. One says he wants to be a policeman and the other a fireman - how's that for hero worship? Appropriate, I would say. And as they get older if they should decide their heros are professional athletes, as many young boys do, I have restored faith that there are many out there I woul be happy to have them emulate - even if they don't make headlines. Another reason I am a proud Colts fan - win or lose. They seem to understand what is really important in life and many of them choose to follow the tremendous lead of Christian values, hard work and perserverance set forth by their leadership. We saw players at the hospital this summer and Kaci (Josh's sister) told us of a player who visited the injured husband of a teacher she works with. Most are active members of their churches, frequently sharing all that have been blessed with and ministering to those who are struggling. Whatever the stats may say, or the scoreboard (which is also usually GOOD) all of the good they have done and will continue to do sum up my definition of real men - those are the stats that make them heros. Performing well and winning games just helps get peoples attention and provides a platform for a more important message about what really counts in life - that was clearly outlined in the book.

Ok, I am off of my soap box. Time to get back to the many tasks at hand. We got some PT in, but time to get some feeding work done. I'll try to post more pictures later.

Update

Tuesday was a busy day for Gabriel. We saw Dr. Rouse around 11:00 AM and he was quite pleased. Everything looks great with Gabe's Gtube - Dr. R said it had healed up nicely and the granulation tissue we were battling is virtually gone. I let him know that Gabe had just recovered from an ear infection - actually still fighting the fluid. We went in to see Dr. Logan on Monday b/c I thought he looked a little "fleshy" under the tongue. He loves to cluck his tongue and I got just a little concerned. Maybe things are going so well with the usual issues I feel a need to scrutinize for other potential problems. Dr. Logan told us there was a little extra tissue under the tongue, but nothing that would be a problem. His ears however still had fluid in them, but no infection. So we are in "wait and see" mode, but I'll take a little fluid in the ears over fluid in the lungs. Dr. Rouse confirmed that the lungs were perfectly clear! Gabe is now weighing in at 15-15! They didn't measure his length, but we will be going in for his 6 month check up in two weeks, so we will find out how tall he is then. Can you believe what I just typed? His 6 month check up. It doesn't seem possible, but there we are.

We got home from our appointment with Dr. Rouse and promptly met with Karen, our physical therapist. We spent some talking about Gabe and his history (don't worry, I kept it to the condensed version - she had most of the history) and then she put him through his paces. He tolerated it all very well and we got some good tips on how to work with him more on our own. I got a picture earlier, but the computer is acting up, so I will count myself lucky to get this posting saved - the pictures will have to come later. We will meet with Ginger (OT) on Saturday for the first time for oral stimulation.

In closing, if you have a minute there is an update on the prayer blog regarding another special Riley family - they are local (from Haubstadt). http://chainofprayers.blogspot.com

Gabe is continuing to try out new tastes and textures - I believe he has rated squash in the dislikes category, but carrots seem to be going over very well! I have some carrot pictures, just give me a little time to get them posted. It's almost time to get everyone going for school. He is also laughing pretty easily now, and is very ticklish like his Dad and brothers. He has rolled all the way over, but just a couple of times. He also doesn't push up very well on his tummy, but that is why we are getting the PT, hopefully soon.

Justin hit me with more "Life" questions last night. If you will remember last winter we dealt with the "Where do Babies Come From" question, which made sense and I was kind of prepared for, considering the circumstances. Last night I was not prepared. I am tucking him in and as I lean in for the kiss, he asks, "Do people die in the winter?". ....uhhhh? So to stall as I search for an answer, and to help answer the question better, I chose to probe into the root of this question. After some questioning, it turns out they read a book about the Pilgrims at school and the hard winter in which many grew sick and died. I felt more competent to answer now, so I explained the difference in the times when the pilgrims lived and the conditions compared to our situation and that he didn't need to worry. Well, if you know Justin, then you know that isn't the end of the conversation. This lead to "if we get sick, do we die", which I fielded ok I think, but that one lead to "But if you die, do you get to come back sometimes?". So now he had switched into more personal mode - he wasn't asking about death in general, he was asking about my death. How do you stick to the truth and still calm his fears? We are not stork and cabbage patch people, we try to be honest (well, at this age we go for the "swiss cheese truth" - it may have a few holes in it) but he is crying now, so what do I say? Well I'd love to tell you that I ever so eloquently explained it all, he smiled and rubbed his little eyes and then rolled over and fell promptly asleep while I congratulated myself on another successful parenting moment....but we all know better. We got through it - talked about visiting in dreams, family pictures and videos and how the people we love come back when we think about them. We talked more about prayer and Jesus. He was satisfied enough that he did eventually go to sleep, but even as I left the room, after the tears had been dried and noses wiped, I could tell the wheels in his head were still turning.

Oh, and while all of this was happening, Kendrick was popping his little head over the rail of his top bunk inserting his own thoughts - the classic one:
"Mommy, I'm shy",
"what?",
"I'm really shy!",
"Do you know what that means?",
"Yes, it means when you're gonna die".
Ofcourse he is grinning all the while, as he does. I think I need to ask Miss Pat if they are working on rhymes in preschool.

Happy Halloween

The boys had a great time on Halloween. Since the weather was so perfect, Gabe came along in the stroller. I think he enjoyed his first "trick-or-treat" experience. We thought the choice in costume was appropriate. I'm sure he'd love the chance to "pick" on someone for a change, instead of being the "pickee" all the time. The scrubs actually came from my Aunt Pat, and the Children's Hospital in Denver, when Justin was a baby. The mask (featured below) is from the older boys' dress-up collection and the scrub cap is a summer cap turned around. So, let's hear the comments - what did you or your kids dress up like?

Results

Ok, we got the results yesterday afternoon, but things have been nuts (nothing new nuts - just nuts as usual nuts). Well, one new thing. The wireless link went out on the laptop, so I have to go down to the basement to use the computer - it is amazing how just that one extra step makes computer use so prohibitive! Fortunately we got the warranty coverage we almost never get, so we are awaiting the packing from HP to send it off.

Back to the results. Better, as we anticipated, but not quite as much as we were hoping for. He did have some desaturations while sleeping down to 84 (that's the oxygen), so Dr. Macke is reluctant to take him off of the O2 just yet - we didn't really believe he'd get to come completely off of the O2, just maybe during the day, but no dice! He is down to 1/4 liter, so that is a big drop from where we were. He is still having some obstructions, but they were reported as less frequent, shorter and no total obstructions. Now for the big one - the CO2. Remember our first study showed an average of about 57 with peaks in the 90s, last average was 44 with a peak at 53 - Now for this one.......are you ready? Average was 39 with a peak of 48!! Not a huge difference from last time, but look at where we started! He wants us to get another full night study Tuesday, December 18th - so we will get to visit both day and night shift again! I have to put a positive spin on it anyway I can. We actually thought we might skip one month of journeying up to Indy, but that's ok. We will be there November 27th for Neuro, Dec 18th for the SS, and the last week of January for Dev. Peds and another swallow study.

That's the medical news. In other news...you may have wondered why I have not posted or emailed Halloween pictures - b/c normally they would have been up that night. Wellll...the camera has been misplaced, again. And it is not a conspiracy/secret campaign to get a new camera, don't listen to Josh. As soon as I find it, we will get the boys in all of their Halloween finery up for you to see. They were pretty durn cute, if I do say so myself.

Yesterday, Mr. Gabe was just not himself. He was quite moody and not very cooperative and as the day wore on, he began to feel warm. UH OH we thought to ourselves. He was crankiest when he would lie down, which immediately had me thinking "ears". Once we had a confirmed fever, it was off to the pediatrician where he confirmed an ear infection. We started on the antibiotic and tylenol and by bedtime, he was all smiles and ready to play - and I had to accept that bedtime was still a little ways off! As you can imagine, I had a hard time minding very much - it is always nice when your little ones are obviously feeling better. Hopefully this is just an isolated incident - since we are just heading into winter, it makes me a little uneasy that it might not be. Although he perked up so quickly, maybe it won't be so bad? Oh well, if it becomes a more chronic problem, at least this is one area of medicine that I am comfortable with - and I know a guy. In the grand scheme of things, we can handle this.

In other news, we met with our First Steps team to write a service plan for OT (oral/feeding issues) and PT for his trunk weakness. He will start out at once a week every week on both therapies for as long as we (us and the therapists) see that it is necessary. Should be interesting to see how we will work this into our schedule - but as always, we'll make it work!

In case you were wondering, we still haven't heard anything official on the sleep study results. We are waiting semi-patiently. I did call yesterday and cheerfully left a message stating that whenever they happened to get results and happened to get time to review them and happened to have time to call, we would love to hear about it. If things go like before, hopefully they got the preliminary results pretty quickly - I know the formal report will take longer.

Sleep Study Complete

Gabe just finished his fourth sleep study and although we ofcourse will not know results for several days (since it is a weekend), I can tell you it went well. They never had to turn the oxygen on at all. That's right, he spent the entire night on room air! During his feedings, I would study the CO2 monitor and it was usually in the upper 30's to lower 40's and I never saw it go into the 50's. His respiratory rate was usually in the lower 40's, sometimes the lower 50's. To refresh your memory, when we left the NICU, it was pretty exciting if he hung out in the 60's, and he frequently drifted up higher. Our last full night sleep study the CO2's were averaged in the upper 50's and we left on a full liter of oxygen. I am remembering how blindsided we felt after those studies - we looked at it as just another step to complete before we checked out of Chez Riley, never did we imagine it would wind up as a potential road block. If we had gotten the trach, we might just now be leaving the hospital.

In other news - we saw Dr. Rouse yesterday afternoon and Gabe has his button now, so feedings will be much easier and we won't have to worry about his Gtube snagging on something, or getting yanked on during playtime. He's already been on his tummy and was very happy to be there. We will have to get in a lot of tummy time work, since we haven't done much of that in the last month. He also had some blood drawn for pulmonology to check iron, blood gases and bili.

Since we were coming on a Friday, the big brothers came along, but were very disappointed in Indianapolis. The original plan was for Kaci and Justin to take them to the Zoo Boo, but it was raining. Plan B was the Children's museum, which was only open for the haunted house stuff, Plan C was to meet up with us at the hospital and ride the people mover but it is out of service for winterization maintenance. Soooo...they got to visit with the NICU nurses which they enjoyed (sorry you were the consolation prize ladies!) and then Kaci and Justin opted to brave Chuck E Cheese with them. I haven't heard how that went yet. I am going to sign off and see if Josh is here to pick us up yet - but I have to say again how much we appreciate all of your prayers. He always listens, I know, but aren't we fortunate that we are seeing the benefits and the power of those prayers. We were in shock after the first sleep study and knew we had to give the trach careful consideration, but something nagged at me not to do it. We wanted so much for somebody to just tell us what the right answer was - we knew there were many opinions and even though the opposition to the trach couldn't come right out and say it easily, we felt the tug. I am so grateful we listened and followed what we felt was right. Ok, I haven't had much sleep so it is not a good time to get emotional - later everybody!!

If you get time - check out the prayer blog, there are a couple of new requests.

http://chainofprayers.blogspot.com/

Darla - if you read this, I'd like to put something about Jarrett on the prayer blog, especially since you are still searching for answers. If you get a chance, email me what you would like people to know and what you would like them to pray for. wittyaud@yahoo.com

Happy 5 months!

Gabe is 5 months old today! It just doesn't seem like he should be that old, but we've been home from the hospital exactly 3 months, so it seems like we have lived two lives with him. The life we stood vigil over in the hospital, but really had no control over and the day we brought him home, which began a new phase....which, let's face it, we still don't really have control over! As you can see from the pictures, he is starting to make his own decisions. He pulled at the tubing until he finally popped it off, and then proceeded to chew on it. Josh commented it was like looking at someone who usually wears glasses without them.

Last night, Justin wanted to say his prayers with Gabe - it was sweet, and ofcourse I got pictures. just scroll down.

The boys had a great weekend camping with their friends! But I think they missed Gabe - they were all over him almost from the minute they walked in the door. I had to shoo them to the bathroom to get cleaned up a bit first! I put a few more pictures down below. Thanks for signing the guestbook - we love the pictures and comments!!

I have one quick side comment about Monday night football. Dear dear Elaine, was there ever really any doubt as to what the outcome would be?

Quiet Day

Gabe and I are hanging out home, enjoying a quiet day today. Josh and the older two are camping out at Harmonie State park with some friends. I haven't heard from them yet today, so I am sure they are having a wonderful time - and enjoying perfect camping weather. There were multiple times this spring and we would walk outside and sort of sigh at the "perfect camping weather", knowing it would be a while until we really got to enjoy it. The guys have been planning this weekend for many weeks, so I am so glad they were blessed with perfect weather - it's like a gift!

Thursday we saw Dr. Stanley, developmental peds, here in Evansville. We saw her last back in late August, same day as the last sleep study. She was absolutely amazed with Gabe. She told me she was half afraid to come in the room, wondering if she would see a baby on a vent. She was pleasantly surprised to see no trach or vent, and her jaw hit the floor when I told her about our last sleep study and Gabe's tremendous improvement. I told her we hadn't heard any mentioned of a trach since the last study and she beamed at us and uttered "I should hope not". She was pleased he had the Gtube, since it seems eating is just not safe, and since we've gotten it, he is more "orally inclined". He likes putting stuff in his mouth, now that he knows it isn't going to be a liquid. She was glad that the puree feedings are going well and also happy to hear we are in the process of getting some oral stimulation with an Occupational Therapist through first steps. Her main area of concern is his trunk strength, which I know is a little delayed. She felt it was worth having PT take a look at him again, since we are developing a service plan with first steps anyway. With the Gtube placement, we have been pretty tentative about "tummy time" and still use the boppy for that. We were also pretty tentative about sitting him up for the first couple of weeks after surgery, so I know that slowed down the proces as well. I had him in the bumpo this morning and also did some tummy time on the boppy. I think I wore him out, since he just conked out in his bouncer seat. Oh welll, it's good for him! I think that is the gyst of that appointment. His weight and length are right on target, but have drifted down to the lower range of normal, so she wants to stick with the fortifying of the breast milk for now, especially since we have been increasing his volume slowly, due to his reflux. The reflux is really improving too, so maybe we'll be more comfortable upping the volume.

Next week we see pulmonology here in Evansville and then journey back up to Indy to see dr. Rouse and hopefully get switched to the button on the Gtube and then we will have the full night sleep study. I think I am more nervous about this test than any other - since the first one delivered us such a shock. With the last test, I was just hoping that the results weren't worse. I wasn't prepared for them to be improved, and definitely not so dramatically. Things have been good for so many months now, it makes me wonder what lies in store - when we can really relax and just trust that the setbacks are behind us. Kaci - your comments really touched off in me. I look back through those pictures too. Just last night I scanned back through some of the early postings and the accompanying comments. I hadn't done that in a while. It really hasn't been that long, but he looks so good now the summer's events seem like a bad dream that we are finally waking up from. It's a miracle that he is here at all, it's humbling that he is not just improving but thriving. Thanks for your comments. You're right, it was so painful, but enriching and inspiring as well. We'll never be the same - and I thank God for it! Thanks again for everyone's comments and for signing the Guestbook - I haven't thanked you all in long time, and I am sorry for that. Keeping up the blog has been carthatic It has served as a record and testament to how far we've come, and it has provided us with both an outlet and a chance to receive encouragement and to be uplifted by our friends and family.

Check out my Guestbook!

correction

I got the blog address wrong for the site I mentioned in the last post (thanks for pointing that out Angela!). Take a look when you get time - just grab the tissues first. The corrected address is listed in this post, and is corrected in the last one.

http://conorbootheandgirls.blogspot.com

Listen

I just finished reading through a blog site I learned about earlier today from Angela Huntman - Josh's cousin's wife. I originally published it on the prayer blog, but after reading through it (definitely visit, but make sure you have some time) I wanted to mention it here too. It was published by a family who found out at about 6 months gestation their daughter was a trisomy 18. http://conorbootheandgirls.blogspot.com/

Many of you know this, but we went through a few agonizing days fearing this would be our diagnosis. Our maternal fetal specialist felt we were at high risk for a chromosomal anomaly and with the markers they found on the ultrasound, trisomy 18 seemed to be at the top of the list. I remember at the time, we said we wouldn't have an amnio and it didn't matter, we would just take things as they came. But when we were there in the office, having our worst fears confirmed from the original ultrasound, we knew we couldn't wait four and a half more months to know what we were up against. The wait for the early amnio results was excruciating. I told myself that I wouldn't go online, but then I thought I would find all sorts of "evidence" that would prove them wrong - I didn't really need their results b/c I would research on my own and come up with proof that everything was fine and there were other logical explanations for what the doctors saw on the ultrasound - it would all resolve in time. What's the phrase about Denial?...a river in Egypt?...you get the idea. Well, everything I found took us right back to Trisomy 18. The amnio was done on a Tuesday and we had the first results 8 days later - the big chromosomal defects had been ruled out, but I knew they would be...

I have digressed from the original point of this post - the other blog. As I was reading their words about their own experiences, it took me back. Our actual similarities end with the waiting period from the amniocentesis and the delivery of the results, but the way the mother told their story, it just resonated so deeply. She wasn't afraid to share everything. She mentioned time and again that she could say things through the keyboard she could never say in person. If I try to say that I am not a talker, most of you will laugh yourselves to the floor - if you know me, you know better! But I've also got a gift for "meandering" in my words to the point that what I meant to say, or what I should have said can get lost - or there are certain things that are just too hard to verbalize. I know I can't put words together so beautifully as she did, but her courage in sharing inspired me to share one story that I have kept private to all but a handful.

Ever since I was about 10 years old, I believed that when God spoke to me, he did it through song. Why not? I grew up in a home where music - all different types and genres - was part of life. How many have actually heard His voice? I think for most of us regulars, it is subtle. Maybe a timely phone call from a friend or loved one, or kind words from a stranger. Maybe you felt the Sunday sermon was directed at you, or your child did something unexpected and precious (like finding pink beads on the playground and saving them just for you). I think God speaks to us in many ways and we have to find a way to be quiet and listen. He is our Father, but he seldom grabs us by the chin and pulls our eyes on His and says "Listen to me..." It's up to us to stop and pay attention, or we'll miss it. The way it has worked for me in the past have been times when I heard a song, just at random - not one I picked out to listen to at that moment - and knew it was meant for me to hear at that particular time. There are 4 examples of when this has happened, once when I knew Josh was the man I was to marry (he's the only person I have shared this one with, so I will leave the rest of that story just for us - just trying to establish that this is infrequent and powerful) and the most recent was when I knew Gabriel would be ok, eventually. It was a Saturday night, after the amnio, but before we had any answers. The boys had gone to bed and Josh had gone to work. I had spent hours on the internet, having my worst fears validated. I had finally gone to bed, but couldn't sleep for all of the noise in my head, so I turned on the TV. Since I hoped to fall asleep soon and didn't want to get caught up in a movie or other show, I turned the channel to CMT. It was on, but I wasn't really paying attention, just letting my thoughts wander. I began to pray. Until that moment, I hadn't been able to pray - I didn't know what to pray for. I knew what I wanted but I knew it didn't work that way. We don't just ask for things and *poof* there you go. But there, in that moment, I was honest with God. I wanted our son to be fine, I wanted that more than I could say, but above all I didn't want him to suffer. I had a feeling that this wasn't all just going to go away as I had originally thought it would. I prayed for strength to face whatever we had to face. I prayed for grace to accept whatever we had to accept. I gradually became aware of a song I had heard countless times on the radio, but had never seen the video. It is a song about romance and I had never thought about it any other way, but as I watched the scenes flashing across the screen with the music, it all changed with one verse. Craig Morgan was singing "I can't imagine one day without you in it, life alone just wouldn't be worth living. Love would be a wish that never came true. Lord knows I've got more than I deserve but I don't question the prayers I've had answered. I did something right cause baby I got you". As I said, I've always thought of it as a love song for couples, but during this verse there flashed a scene of a young boy playing baseball. Then I knew. I knew that whatever happened, whatever we had to face, we would see our son grow up. Isn't it ironic that I have never seen that video again. Just the one time. Even when we were at Gabe's bedside and he was being baptized, and we all knew the grim reason for his baptism, I held on to those words and that image and I just couldn't accept that we had come so far just to let him go. Even the next day when Dr Rouse approached us and we knew the words he would speak at that moment would either offer us hope, or dash it all, those words played through my mind. I don't know why prayers are answered so differently, why some are answered and others don't appear to be. Just that we aren't meant to question it. Oh we will, it's our nature. And I think we do get answers, sometimes, if we listen very carefully.

First Steps was here today - now that we have the swallow study, we are trying to get some oral stim set up. We should get things going pretty quickly, since we don't have to repeat the initial evaluation and hopefully will be working with a therapist by early November. He is doing great and really likes putting stuff in his mouth, just like a normal baby. He can really get a hold of that pacifier when he wants it now, which was pretty wishy/washy before. The oral pureed feedings are going well - we tried prunes last night and tonight and he seemed to actually enjoy them! We could hear him swallowing well and there was no gagging, well I admit I might have gagged a little...I don't think pureed prunes look or smell pretty.

A side note that has nothing to do with Gabe - last night I got onto Justin and ultimately put him in time-out. We always talk about why he is there, once things settle down and this time was no different. We talked and he started crying and we eventually worked everything out - but as he was getting up he said he had something in his lunch box for me. He found some small pink beads on the playground at recess and told me he thought they were pretty and wanted to save them as a special surprise for me. So he carried them in and put them in his lunch box, because I always get his lunch ready and he knew I'd find them in there. Wow - he's good isn't he? I put him to bed - as he commented, "see Mommy, I'm talking really nice now, do you like that?". I tucked him in, kissed him goodnight and after backing out of the room, I put the beads in a baggy and wrote the story of them on the outside in permanent marker. As I was writing, I felt a peculiar mixture of sweetness, pride that he could be so thoughtful, guilt b/c I was punishing him all the while these beads were sitting in his lunch box and also wonder - had I just been played? I'll stick with the sweet story.

Nice weekend

In many ways, it was a really nice weekend. We got in some good family time, beautiful weather...etc If you live around here and didn't make it outside, you really missed out! Kaci and Big Justin came down for a visit and we had a really nice time visiting - and playing phase 10. I have to know, has anyone actually made it all the way through that game? We did have a lot of players - it actually kind of felt like Thanksgiving or something b/c all three Wittmer kids and their spouses were present, plus all the grandkids. Yes, to date we are the only grandchild contributors, hopefully that will change soonish....? Ok, I'm not the one who's supposed to be applying that sort of pressure, so I'll leave that to the grandparents.

That was our Saturday. Sunday the FOP hosted a family day out at the camp. We all enjoyed it, especially Justin and Kendrick. After we got there, we halfway wished we had brought Gabe, since it was a beautiful day and not too crowded, but it is probably better that we resisted temptation. He looks so good and is doing so well by appearances that it makes it hard to remember sometimes we still need to be cautious. While we were there, we were talking about Gabe's first birthday. We are tentatively thinking this occasion would make a great "coming out" opportunity. Blog allows the option to "poll" your viewers, but we never had anything we particularly cared to poll everybody on. Gabe's birthday falls on the Saturday of Memorial Day weekend, and we know this would be a good weekend for some and a bad one for others. If I can figure it out, I am going to poll everybody on what weekend would work out better for them. We are thinking this will be an open invitation event - if you want to come, then come - even if we have never met face-to-face, even if you are not local, if you can manage it and want to celebrate with us, come celebrate with us. Ofcourse, we don't know what Josh's schedule will be and won't until January, so that may trump the poll decisions!!

Ok, I don't have time to figure out the polling thing just now, but watch for it!! We really want to stress that EVERYONE is invited - family, friends, health care folks - EVERYONE!!

Sorry for the delay in update - we made it to Indy and back in one day. We left around 7 yesterday morning and got home around 5PM, so it wasn't too bad. We made up to the outpatient center in good time and didn't have to wait too long. We saw the nurse that specializes in Gtubes and she took out the tube from surgery and tried to put in the button, but it wouldn't go in, and the site started bleeding. She decided it wasn't healed enough and put in a different tube with a disc next to the skin to hold it - so he didn't get any stitches. As you can imagine, he was pretty irate over all of the probing into his belly, but calmed down pretty quickly after she was done. Since there was some difficulty getting everything squared away, she wanted us to get a study done in fluorscopy, to make sure the tube was going into the stomach. Sure, no problem! OK, after we got downstairs there was one problem, they don't do fluorscopy until 1:30, so we had an hour to kill. The line for the wraps was pretty long, so most of our wait was used up getting lunch! The test itself took a matter of minutes, and we were on our way home!

Quick trip to Indy tomorrow

Welllll...while getting Gabe changed earlier, I caught a glimpse at the site where his tube goes into his tummy under the nipple protecting it and something didn't look right. When I moved the nipple up I noticed the stitches were around the tube and no longer in Gabe. Ok....don't panic...call Indy. Fortunately Dr. Rouse was the attending surgeon, so I didn't have to explain anything - just told him what happened. We had just seen him yesterday here in Evansville, so this was a surprise to both of us. He talked us through taping the tube so it wouldn't (hopefully) come out and asked us to get to Indy first thing in the morning. He didn't really know who to refer us to down here, especially given Gabe's anatomy inside and the fact that the tube has only been in two weeks. We would feel better having someone who knows Gabe take care of it anyway, so we'll deal with the drive. So it looks like he'll be getting his "button" about two weeks early.

Speaking of "excitement", word is getting around that somebody was trying to get into our house last night. Everybody is fine, and he didn't get in. The man had been released from St Mary's Hospital for drug use and somehow wound up banging on our front door in a panic. Josh quickly got on the phone and, as I am sure you can imagine, we had plenty of help in a matter of minutes. Fortunately Justin and Kendrick slept through the whole incident. We really do live in a good neighborhood, this was just a freak thing. Talk about adrenaline!

Gabe's laugh

Ok, for some reason the picture is less than stellar, but if you listen, you can hear his little giggles. They aren't big belly laughs just yet, but they are precious just the same. Justin was the one who got it out of him tonight. Anyway, enjoy - and sorry the picture isn't clearer.

There's a few pictures of Gabe eating if you scroll down!

I've had multiple people asking about the prayer blog. The address is http://chainofprayers.blogspot.com and instructions for prayer request posts are listed under the profile section there. We all know the power of prayer, so don't hesitate to let me know if there is anything you want posted there.

It's been a busy week, so there hasn't been a lot of time to update. There hasn't really been much new to report anyway - just continuing to figure out what is normal. Josh worked quite a bit down at the Fall Festival, and then again this morning at the YMCA half marathon. He ran it the first year they had it, and when I saw him immediately after he crossed the finish line he emphatically gasped out "...Never again!". He may change his mind and run it again, but for now I think he is content to direct traffic and cheer on the runners!

What's new for Gabe? Well, when we first started the cereal and purees, he seemed to object at first and then reconsider - His face said "ok, this is not too bad, I'm open to it". Now he seems to be enjoying "eating" a little better. He likes to "help" get the cereal in his mouth by sticking his fist in his mouth after he gets a bite. I am not sure just how much is actually making it into his tummy, but at least eating is becoming something positive for him. We are still really "practising", but hopefully this will get him ready for when he is old enough to truly get his nutrition orally. He is also starting to laugh a little bit, which has us willing to do just about anything to hear it! We heard his first little giggle in the preop area, just before he got the Gtube - we figured it would be a little while before we heard it again, but last Sunday I was in the checkout line at the grocery store when my phone rang. Josh and Justin had elicited quite a chuckle from Gabe by placing a "vibrating monkey" toy on his belly. I got to hear it over the phone - a couple times, probably to the irritation of the checkout clerk. She didn't seem too aggravated at me and fortunately there wasn't anybody else in line behind me. Kendrick and I threw the groceries in the car and raced home to hopefully catch a live performance (amazingly, the eggs were all still intact).

Yesterday I was at the store again and ran into a Riley Dad. His son, Colin, was in module 2 for approximately 3 weeks in June. He told me that one of their neighbors from those days passed away this week. Apparently the baby was about 5 months old and had been through 4 or 5 pacemakers. I vaguely remembered the family - I talked to Colin's family quite a bit because they are from Evansville and actually live just a couple of miles away, and we have the same pediatrician. We stood in the parking lot and just talked for about 15 minutes. Standing there reminded me of those days in the NICU, after we knew Gabe would be ok even if he still had quite a bit of work left to do but we were still reminded that others did not yet have that certainty of their own babies. Even more poignant were the times you walked down the hall to the module and began to realize someone had lost their battle. It was difficult to reconcile the myriad of emotions that hit. My heart broke a little for them - we'd had a glimpse of what that kind of pain could be like that, but were fortunate enough to get only a glimpse. At the same time there was pain and compassion for them, there was relief, and then a little guilt. Why some are blessed with life and some are not, I can't answer and know I am not meant to. If you have a minute, say prayer for this family and the others going through unbearable grief. If you have kids, maybe hug them a little tighter or just a minute longer today - I did last night.

Josh and I were talking a bit about timing today and I realized that tomorrow we will have officially been home longer than we have been at Riley. Gabe was 4 months old Monday the 24, which was also exactly 2 months from the day we left Riley with him, but we spent 5 days up there last week, so tomorrow we will have made up those days. So, Thursday will actually be the day we will have been home longer. The day we got on the elevator with Gabriel, walked through the halls of the hospital, throuh the ROC and to the car was almost surreal. We had been there long enough that it was a huge change in routine, in what had become normal, to have Gabe with us as we went through that door. It was the same doors we went in and out of every day, sometimes multiple times per day, for two months. Now we look back from today to that day and the routine we have established at home and it seems like it has been ages since we lived any other life than the one here at home. But on Monday (last week), when we walked through those same doors, two months vanished in a blink - didn't we just leave with him? We knew the sights and sounds, knew if the patio was open or closed, and had some idea who might be working in the NICU that day and later that night. Our first night in the hospital last week, the nurse handed me the menu for nursing mothers, and even though I studied it and contemplated what to order, I didn't need to, I knew what was listed for breakfast, lunch and dinner. Isn't it amazing how our views of time bend and change. Time is constant but our perception of it is not.

Home!

Far left is a shot of Gabe in the pre-op area in his little surgery gown. Daddy wasn't too excited about the pink ribbon trim, but it was the gown with the least amount of pink, so we made do. Top left is Gabe waking up back in his room after his first good nap. He was awake when we made the trek from the post-op area to his room, but he was grumpy (understandable!) and conked out after getting some more morphine shortly after we arrived in the infant unit. Top right is a peek at Gabe's new feeding. I don't think he is too sure about it yet (he's still a little sore with a cough, but settles pretty quickly. He actually had his las dose or morphine barely 12 hours after surgy, tylenol has been sufficient - tough guy!) but I am sure he is even happier than we are to be done with a tube dow his nose and throat.

Today was a lot of hurry up and wait. Dr. Duffy (remember him?) wanted to keep Gabe through at least 2-3 feedings today, to make sure he could handle being back at his full feeding amount. After the second went in, we were antsy to go home. We didn't make too much of a nuisance of ourselves, (well, I don't think we did) but after two nights of not a lot of sleep, we were ready to go!! We finally got out around 6:00 Indy time, after one last quick goodbye in the NICU. We were so tired we just couldn't wait around for shift change, sorry girls if you are checking today! We'll be back October 26th for the full night sleep study, so we will definitely be able to see the night shift. We saw some night shifters while we were here, but also missed a few (we missed Lori and Tabatha especially). Thanks a bunch to all of the nurses, RTs, dieticians, social workers/family services and secretaries who stopped by - it made our stay much nicer. This was our home for two months, after all!

Steady improvement

Gabe was able to start feeding through his new tube this morning. We started, and are still at, half of his normal feedings. He is tolerating it ok and hasn't spit up quite as much as he usually does. We have learned that this tube is a lot different! With the ng tube it could take close to an hour for the entire feeding - with the Gtube it could be over in a matter of minutes if we aren't careful (hold it up too high). Like the ng tube, his milk goes in by gravity, but we don't have to "push" it with a plunger like we did before. It is nice we don't have to hunt for the plunger, but now we have a cap to keep track of. Hopefully they give us an extra? We still have some things to learn about, but we are off to a nice start.

Last night was a pretty lonnng night. Our "roomies" decided to leave their TV on until 4:30 in the morning. By 1 AM, Josh had noticed there wasn't anybody in the parent lounge, so we put some cushions on the floor and took turns sleeping in there while one of us stayed with Gabe. I think we tallied about 3 hours of sleep each, and that wasn't all at once. This morning we were treated to rap music - thankfully they have been sent home, so hopefully we will sleep a little better tonight. we have new roomies already, but they appear to be more "normal" sleepers. I guess we'll find out.

out of surgery

Gabe is out of surgery, but not yet in recovery. Dr. Rouse just left and we are waiting to hear when we can go down and be with him. We were told that surgery went very well, the tip of the liver was sticking to the abdominal wall a little, so the incision is a little larger than planned, but not much. He told us it is the liver sticking is not too unexpected and not a problem, they just had to be extra careful - which Iam sure they would be anyway. Dr. Rouse said Gabe woke up from anesthesia right away and was "ready to tell somebody about he he felt about it." He said he decided it was wise to stand back a little, with Gabe's size and his arms waving about. There has been no argument from the very beginning regarding Gabe's tenacity our ability to fight! Hopefully that settles down by the time he is school age ;)

We were so comforted when it came time to let him be led away for surgery. Ellen Fleig switched surgeries so she could be in on Gabe's surgery, and she not only came into the preop room and talked to us for a while, but she was the one to carry him back. He was smiling and flirting as he went - which was very comforting. She also gave us a gift card for the coffee kiosk downstairs - she's been through all of this before, so she knows!! (for those of you don't remember from previous blogs, Ellen's son Jackson had a left DH and was here for three months, and also came back for a Gtube later). I have picked her brain and nagged her with endless questions both when we were here and since we have been home. It was very comforting to have her here today - looking after him when we couldn't. Thanks Ellen!!

Update

I have a few updates. Amanda Vollmer was diagnosed with laryngomalacia (soft larynx, in which the skin of the larynx will collapse during inhalation - resulting in squeaking noises) and will undergo laser surgery to correct it Monday. Apparently they should be able to take Amanda home the same day as surgery. I am sure they are worried about anesthesia and turning their daughter over to strangers to help her, it isn't easy to do that. We know what God can do and he will hold Amanda for them until they can do it themselves.

My Grandma is home again and there is someone coming to stay with her a few hours every day to help her get lunch and look after her. I don't know too much more, just that she is tired and still not quite herself.

Maria - any news on Maureen?

We ask for continued prayers for Gabriel as he goes to surgery again tomorrow. We have hope that this will be the last surgery until he is much older.

Thanks to all of our prayer warriors out there, it is so comforting to know you are there.

Eventful Day!

OK, it has been a while since I had a lot to report medically. Yesterday was the swallow study. The liquids were not well received (we pretty much expected that) but surprisingly he did fine with the cereal. We were told to stay away from liquids, and that he would likely skip the bottle all together and ultimately just learn from the cup when he is ready for liquids. We have been cleared for purees and she suggested feeding him about two teaspoons of some sort of sweet purees (cereal with breast milk, pears, apples, etc) twice a day to get him more interested in eating by mouth. After that he had a chest xray, which Dr. Rouse told us today was very good.

Today was the flexible bronchoscopy - we didn't stay in the room, (we were willing they just do it with the parents in the waiting room) but we heard he didn't care for it too much. No surprise there. He found that Gabe's adenoids are a little swollen and put him on a nasal spray to help reduce the swelling. Dr. Macke didn't seem to think it was too serious and since everywhere else in his airway looked perfect, Gabe should hopefully grow out of his little obstructive episodes. After the bronch was the EEG and Neuro visit. Nothing but good news there. The EEG looked great and the Neurologist felt that he was almost ready to wean from the phenobarb. We return in November and he will probably start coming off of it then (since he is growing and they haven't increased his dose, he is actually starting to wean now).

Tomorrow is surgery to get the Gtube in and repair his hernia. Surgery is at 1:30, so keep Gabe in your prayers. This so minor compared to all he has been through but ofcourse there are risks with any surgery. Dr. Rouse didn't seem to think Gabe would need to be here more than a couple of days, so hopefully we should be home by the weekend. I think that just about covers it. This afternoon we have been laying low, and napping! My parents are coming over to the hotel, and bringing us Olive Garden take-out for dinner.

Funny Sleepers

I told him I'd get him back.

Even being held straight up!
How can he sleep like that?

We sleep when we can around here!

We are getting all set to return to Riley tomorrow...we'll let you know how things are going. We told he boys they would be staying at Grandma and Grandpa's all week, and they were jumping up and down. So much for being missed - maybe they will a little - but we are glad that they can look at all of this as an advenure, rather than a disruption in their routine. It makes it so much easier to be with Gabriel and to focus on what is happening there. We won't be distracted with worry for the older boys, knowing they will be so well cared for, and having so much fun. Keep Josh in your thoughts tonight, it will be his last night working with Brix, and I know it will be hard for him. I'm sure he would like to get one last bite or find a bunch of drugs or something like that. He's really going to miss working with Brix and everyone else in the K-9 unit. The rest of us will miss Brix around here as well. Even though he is a well-trained working dog, he loves to play with the rest of us at home too. I'll get some pictures of the two of them and post them later.

Surgery scheduled

We are tentatively scheduled to get the G-tube and repair his hernia from the initial repair on Wednesday, September 26th. We are going to be up there anyway, so that works out pretty well. I am not sure how long we will be up there, but at least a few days I would imagine. We haven't discussed the specifics just yet. We will meet with Dr. Rouse the day before to discuss the details. Too bad we can't stay in the NICU with everyone who knows him so well, but on the up side, we will be able to stay with him during his recovery time in the hospital. It would be hard leaving him over night, now that we haven't needed to! We have been introducing a little bit of cereal (dipped on a pacifier) so he is used to the puree texture for his swallow study. He made faces the first time, as did the older boys the first time they had cereal, but he actually seems to like it now - well, a little. Yesterday he was actually opening his mouth a little in anticipation (looked like a little bird). So maybe there is hope for this eating thing yet - too bad he is too young to do much more than sample!

On another note, Grandpa O is here on a stop-over stay. He and Tim will head on up to Indy tomorrow and pick Mom up at the airport tomorrow evening. She has been in Denver with her Mom while she has been recovering from a broken arm and pancreatitis. Dad's high school reunion is this weekend in indianapolis,sSo the timing is that much better - they will be in Indy anyway! Since Gabe won't exactly have the nurses right there as he did in the NICU, we will need to be with him, so having Mom and Dad up there will be nice when we need to eat, or take shower...you get the idea.

Today we went for a walk in Wesselman's Woods.We had the boys picking out small, medium & large trees - the pictures are of their "measurements". It was so nice to be outside as a family - we figured it was somewhere to get out of the house together & still keep Gabe safe. The weather was perfect and so was our walk - I fear we may be climbing the walls come winter, better take advantage of days like these!

The first picture of Gabe is a hoot - I laugh everytime I look at it! He was reacting to the flash - one can only imagine what he may have been thinking.

Here is the slideshow we did for "Gabriel's Song", written and recorded by Josh's Uncle, Dave Knopsnyder, after he visited Gabriel at Riley. It is a beautiful song from Gabe's perspective - I'm glad you'll be able to hear it now, not just read the lyrics!

I think I finally figured this out, kind of. If it works, this is the slideshow we put together for everyone at Riley as a thank you. We did a slishow for Gabriel's song, but it got messed up. Once I get it fixed, I will get it on here.

Sweet Angel

Isn't he just a sleeping angel? He still loves snuggling stuff, either snoopy or little pieces of fabric. That was always a comfort to him, even back in the NICU.

If you have a minute, check out http://chainofprayers.blogspot.com/

There a couple of new prayer requests. The most recent is from the family of six week old Amanda Vollmer. Her big brother Daniel was in Justin's pre-k class last year. Amanda's Mommy and Aunt have commented on our blog many times and through their prayers and emails, have been a tremendous comfort to us and we would ask you to prayer for her and her family. She may be at Riley herself soon and we certainly understand how scary it can be, but what a blessing. We don't have to tell you all how wonderful a place it is, although nobody wants to need it - thank God it is here and so close.

So far, none of our September appointments have been rearranged, yet! We don't know when surgery will be just yet - late September or early October and we are having a sleep study on Ocober 26th, but that is as consolidated as we could get everything. Not too bad. At least I think we are getting most stuff out of the way before winter weather and cold/flu season are really upon us. As long as there is no more evidence of seizures, we shouldn't be seeing neurology again for a long time, if ever. We will see Developmental Peds down here at least once this winter and ofcourse we will see Pediatric Surgery and Pulmonology down here, so hopefully that will take us through the winter? I guess we will find out.

I am trying to get and stay organized. I finally purchased a binder with a different folder for each specialty we are seeing - the doctors' names and phone numbers are on the front of each folder within the binder. Laura and Christine, aren't you proud of me? It all sounds great until I tell this story - I worked for a few hours yesterday and after I got home and changed clothes, I pulled my hair back into a ponytail and realized I had only put on one earring. I guess I was just too busy and distracted to accomplish both. So I was at work all afternoon with just one hoop earring. My hair was down, so hopefully nobody noticed? I know I put the one on in the bedroom, I found the other one in the kitchen....? Don't ask, I don't know.