Sleep Study Results

I finally talked to someone from the Pulmonology office who could give me some answers this morning. Let's see if I can summarize. Not-so-good news first. It looks like there were more "obstructive episodes" in this study, although no actual apnea was noted, which has them a little concerned. We are to return to Riley for a Flexible Bronchoscopy, basically they will insert a flexible scope through his nose and look down into his upper airway to see if there is something physically causing these little episodes. One concern they mentioned was the possibility of laryngomalacia, which one of our Docs (Dr. Mark Logan) also does scopes for. I asked about the possibility of having that done here, but it sounds like they go down farther? I don't know, I'll have to do some checking on that one.

The good news is that his gas levels were significantly improved. He was on room air for the majority of the test and had only one O2 dip down to about 81, which improved to normal and stayed there when he was put on 1/4 liter of oxygen (remember he is on 1 liter now). Dr. Stevens wants us to do a home study over night with some sort of recorder that will help determine how much he can down on his oxygen at home. The really good news was the improved CO2 levels. I believe his average from the last test was around 55-57 with a spike up to 94. This time his average was 44 with the highest recorded level at 53!!! Much better - but this doesn't mean we can relax about him getting a cold. That is still not a good idea for this winter - remember he still has a higher respiratory rate than normal, which may be normal for him, but still could cause him problems if he gets a nasty cold. But still, we are breathing a little easier (and Gabe definitely is!). We are going to get a full night sleep study in October, along with our Neuro appt, the bronch/scope, and an oximetry swallow study. We are trying very hard to get it all scheduled together, but don't know if it will be possible. OK, that is the highlights. We are off to the school open house! Don't worry nurses, Gabe is staying here with Grandma.

New pictures

I posted a few yesterday and didn't mention in the posting area. I just posted a few more. I think I just figured out how to upload video, we'll see if it works. If this little one loads ok, I'll see if I can get the slideshows we have done on here! If this one does work, it is video of Gabe in the tub. He pulled his ng tube out, so we figured it was a good time to flush it out and give him a bath. We opted to leave his O2 off as well, since he had it off for at least two hours during his sleep study with no problems. You will see how much he enjoyed not having any tape on his face, or anything up his nose!! He was having quite a conversation with Dad!

No official resuls yet.

We haven't posted before now b/c we never got the results from the sleep study. While we were in the office for our appointment, they tried several times to get the results, but they weren't ready. I think they are going to hopefully call tomorrow. Aside from that, it was a good visit. Dr. Stevens repeated how important it is to do everything we can to keep Gabe from getting sick and reminded us that it was pretty likely if he were to get sick for him to be in the ICU and probably even back on the vent. We didn't talk about about getting a trach and home vent, but Dr. Stevens said he had spoken with Dr. Weis and Dr. Rouse, so I am sure he knows that we know it is still hanging over our heads as a possibility. He recommended a full sleep study (over night) in a couple of months to check our progress. He also decided he wanted us to have a pulse-oximeter at home to periodically check his O2. Since Gabe hasn't had any blood work since we left the hospital, we were sent over to he lab to have that done as well. He is interested in the blood gas levels (remember we got those pretty regularly in the NICU) as well as the bicarb level. We also discussed getting a flu shot when Gabe is 6 months old, and the RSV shot before then. I think that pretty well covers that appointment. Hopefully tomorrow we wil hear about the sleep study and the bloodwork.

We were both pretty tired last night, so no update! Actually we don't have results from the sleep study yet, so there isn't anything to report yet there. We have an appointment with Dr. Stevens (Riley Pulmonologist) at 12:30 at Deaconess/Riley connection. The respiratory therapist running the study yesterday assured us that Dr. Stevens would certainly have the preliminary results, and possible the full report at our appointment. Gabe did sleep pretty well for the three hour test, so hopefully it is a good and reliable test, whatever the results. He was understandably pretty angry after they got all of the "stuff" on him. If you scroll down to the pictures of the first sleep study, you'll see how wrapped up he was. I'm impressed he could sleep at all! Anyway, he was hollering but we were able to settle him down and he conked out. While he was sleeping, we got a visit from nurse Laura. She was off, but came in to visit us (and probably primarily Gabe). I think he was pretty happy to see her when he woke up! I forgot my camera, so I was bummed not to get a picture of the little reunion. We did wander up to the NICU after all of our appointments were over for a little visit. Everyone told us how good he looked (and chubby!) and continued to back our decision to go home last month. Hopefully we will get through this winter without a trach/vent package, but even if we don't, we still feel good about taking him home without it. It has been a hectic but wonderful month at home as a family and although we have had our challenges, I don't think we would have had a glimmer of normalcy with a trach (beside the fact that we wouldn't even be home yet if we had the trach). I guess my point is (I do have one, every now and then) if the trach happens at some point, at least a portion of his babyhood got to be as close to normal at home as we could make it and we will have that to hold on to and treasure. BUT hopefully it won't be an issue at all ; )

We also had an appointment with developmental Peds, which was pretty good. We met with Dr. Stanley, and she comes to Evansville from time to time, so we should be able to meet with her down here at some point in the future. After a lot of discussion (we were very impressed with the amount of time she spent with us listening and processing our situation) she had some valid recommendations. One was zantac to address the amount of spitting up he still has. Since he is gaining weight VERY well, she wasn't really worried about the nutritional aspects of this issue, but more of an airway/aspiration concern. Another was some oral stimulation suggestions, especially since he seems to have completely lost interest in feeding orally. Because of his respiratory issues, she doesn't really want us to do much to push the oral feeds without a swallow study (which isn't news to us, we know this is an issue). Since we are coming back in October to meet with Neurology, she recommended getting an oximetry study? As it was explained to us, if I understood it correctly, this is a swallow study using pureed foods instead of liquids - since he will be about 4 and a half months old by then. Along with the feeding issue she asked us to seriously think about the Gtube. This would be a feeding tube surgically inserted directly into the stomach. She made some valid points about that, and since he hasn't taken anything significant by mouth in at least two weeks, I think we knew this conversation would be coming at some point. Her logic was if Gabe is really starting some oral aversion, the tube down the throat could be contributing significantly to that and the longer he has something going down his nose and throat, the more he could really dislike swallowing and hence getting nutrition orally. She said most families avoid it as long as possible, but once it becomes a inevitable, they usually wonder why they waited so long. The "pros" would be that it is apparently easier to feed him this way b/c we don't have to keep putting the tube down his nose (which is pretty unpleasant and could also be contributing to a lack of interest in eating) and it would be easier for others to care for him. The ultimate "pro" of going sooner rather than later, if the ng tube is really the reason for his oral aversions at this point, would be a hopefully smoother transition to taking purees and ultimately solids by mouth when he is old enough. This is all my interpretation of what we were told, hopefully I got it right. We will talk to Dr. Rouse Sept. 11th about his perspective on the Gtube and the sooner rather than later theory. By then we will have a better idea of whether or not he is going to do more orally. I think that is it. Isn't that enough?

Ok, we'll try to post more later when we know the results of the sleep study.

Preparing to Return

...but hopefully just for the day this time. Gabe's sleep study is tomorrow, and his first appointment with developmental peds. It's actually a nap study and the results could have a huge impact on what happens next in our little saga. If the CO2 levels are worse (which I would think we would have noticed something dramatically different, so let's really hope not) then we will have to think a lot harder about the trach. Cold and flu season is right around the corner now (hard to believe fall is coming - especially when it has been 90+ degrees for over 24 days) but it is. Actually, it has been in our house. Justin's fever finally broke Saturday, having us heaving a sigh of relief. Unfortunately now he has the runs. Poor guy. He'll probably have to miss tomorrow now too. So far nobody else is showing signs of illness, so we are hoping that Justin was bad enough for all of us (he really had a rough week - I sat up with him for several hours one night b/c he really wanted to throw up, just couldn't). Anyway, we will leave between 5:30 and 6:00 AM tomorrow morning. Don't know when we will have any news, maybe something preliminary tomorrow when we meet with pulmonology here in Evansville.

Well, tomorrow is going to be a long day, so I am going to attempt to get some sleep. I'll try to update tomorrow evening, depending on how late we get home!

Gabe continues to gain weight well. Even after letting him skip a feeding at night, he gained about 6 or 7 ounces this week. He weighed in at 13-5 yesterday. I was hoping it wouldn't be a problem for two reasons - first of all, ofcourse we want to see him continue to gain weight and be healthy, but it is also allowing us to get just a little more sleep! It would have been a real bummer if we had to go back to every three hours at night!

Separately we got bittersweet news yesterday. Josh is being promoted to sergeant, but it means he has to leave the k-9 unit, and give up Brix. It's a great opportunity, that may not come again for years due to a significant number of retiring upper brass right now. The flip side is how much he loves what he is doing now and ofcourse Brix is part of the family, so it will be sad to see him go in a few weeks. This will certainly be a big transition for Josh, and all of us, especially depending on the hours he ultimately winds up working. I have no doubt he will be a great sergeant - he's a good person and a good leader, but I know it was a difficult decision for him and I am sad it was so hard. It is a good thing, but pray for us as we adjust to such a big change.

What a week!

After a hectic weekend, Justin woke up Monday morning with a fever. Didn't show any signs of illness all weekend long, but when I sat next to him on his bed Monday morning, I could feel the heat radiate off of him. It's been flutuating the last three days, even getting as high as 104. We've been keeping him home and away from Gabriel, which fortunately hasn't been tough. Poor guy has felt pretty lousy and hasn't really left his room much at all. So now we are caring for Justin and keep watch out over Gabe and Kendrick, hoping they stay healthy! Gabe has had a little nasal stuffiness for a couple of days we are watching closely, but it seems to be more associated with the reflux (he spits up, and it gets in his nose). I've been checking Gabe's temp pretty regularly again, just as we did in the hospital. He is sleeping well, so hopefully this is nothing. We didn't make it for a weight check today, since Justin and Gabe were both sound asleep at the time I usually take him. By the time they woke up, it was late morning and I didn't want to take Gabe into a potentially busy waiting room. We'll go tomorrow - What's one more day!

In addition to all of this, Mom, Dad and Tim left on Tuesday. Poor Mom said she felt like she was abandoning a sinking ship, but we are managing to stay afloat anyway! Tim has been sick too, so getting him home to heal was in everybody's best interest!

A busy weekend

Was it ever!! Friday we started by going with Grandma Carolyn, Grandpa O and the older boys to Nativity's summer social. The boys had a blast riding rides and eating cotton candy. Daddy was tired, so he volunteered to stay home with Gabriel. Saturday we went for a walk in the neighborhood since it was actually comfortable outside!! There are pictures below of Josh getting everything together so Gabriel could go along. That afternoon, from 4-6, Dad, Tim and I answered phones for the WIKY Riley Telethon. It was pretty slow in the beginning, but picked up towards the end. After that we all went over to Grandma Maggie and Grandpa Mike's house to celebrate Justin's birthday. I can't believe I have a six year old child. I remember taking him home from the hospital - it was raining actually. After what felt like a big fuss of getting him in the door, introducing him to Cosmo, taking a bunch of "welcome home" pictures and then getting him settled into his bassinet, I thought to myself, "now what?". 6 years later and I still say that with him sometimes! Anyway, he got lots of good loot, most of it "Cars" related. I think the favorite is the "real race track" from Grandma and Grandpa Wittmer, but he was also excited about the Cars sheets and the new chapter book from Grandma and Grandma Smith. Aunt Kaci and Uncle Justin actually diverged from the Cars theme with the game Battleship and a ball that pretends to be a frisbee, or something like that. Anyway, he liked it.

Sunday was baptism day. We had everyone (well, a small select group) over to the house for brunch and then went to the cathedral for the baptism. Father Gregory knew we didn't want to bring him to mass and didn't want a crowd around him. There was already a baptism scheduled for right after mass, so he offered to do it a full hour after mass, just so we could avoid a bunch of people. We were so grateful b/c the alternative would probably have been to wait until spring, which would have been ok, but we are glad we didn't need to wait.

This afternoon was pretty much hanging out and relaxing - and eating leftovers!

Visit with Dr. Rouse

We had our first follow-up visit with Dr. Rouse today and it went well. He was really pleased with how Gabriel looked and our report on the past 3 weeks. Gabe has gained approx 2.5 lbs since we left the NICU. He was pleased enough with the weight gain that we now get to let Gabe wake us up for feeding at night! Hopefully we will get a little more sleep tonight, or Gabe may realize he's hungry about a half hour after the missed feeding ;) Guess we'll find out tonight. Dr. Rouse was also happy with Gabe's "social skills". He smiles all the time and "talks" to us too! His scar looks great and his little muscle hernia is the same, no worse. We will have to get that repaired at some time, but not for a few months yet. Oh, Gabe had a little bit of stitch left in his neck from ECMO, which we noticed a couple of weeks ago. Dr. Rouse went ahead and removed it, which Gabe was not too happy about, as I am sure you can imagine. We will see Dr. Rouse again next month in Evansville. They told us today there still isn't a neurologist coming to Evansville, so we will go up there in October. I think that is it. Oh wait. We had a question about Gabe's lack of pericardium, more pertaining to when he gets older and rough housing, etc. Dr. Rouse didn't seem to think that there would be any need to restrict him. His only issue should be if Gabe needs open-heart surgery at some point, so our main job in this aspect will be to educate him about his medical history when he gets old enough to leave home.

Radiothon Complete

...well, at least our part of it. We were really nervous when it actually came time to talk. Hopefully we didn't stumble over our words too badly. While we were sitting there, waiting for our turn to speak, I was watching the ladies waiting to answer the phones. The key word here is waiting. Hopefully the phones will pick up over the lunch hour. If you get a chance and are so inclined, the number to pledge is 1-888-745-3954. We pledged the $15 per month they are asking for. We are so blessed to have such a place so close. There were kids there from all over the world. A three hour drive doesn't seem like so much when you think about that.

It was a neat experience to share his story. The DJ even read part of "Gabriel's Song" on the air. They couldn't play it, but it was special to hear him reading it.

Radiothon

My Uncle went online (www.wiky.com) and found that at the website, you can click on "listen now" and get a live feed from anywhere. So out-of-towners with a reasonably quick internet can listen. So Mike - no poking fun while we are interviewing. I'll know. Say hi to Aaron. By the way, my brother knows Aaron Tippin (He's a country singer, Margaret) now. He wants me to think that is better than touching the Superbowl trophy, but I know better. Actually it is a neat story. My brother, Mike, is the band officer for the New Orleans Marine Forces Reserve band - it's a reserve unit, but all of the Marines in the band are activity duty. He had his jazz combo playing at the WWII memorial for the Disabled Veterans and Aaron Tippin was there too. "Somehow" my brother "found" himself next to Mr. Tippin (sounds like stalking doesn't it). Anyway, they talked and Aaron Tippin asked Mike who he could talk to about getting involved with Toys for Tots and Mike gave him his card.

Continuing to gain!

Weight check this morning and you won't believe how much he has gained (at least I couldn't). Last week he was 12-1, this week he weighed-in at 12-15. That is almost a whole pound in one week! He has a double chin and I think he is working on a third! When we got to the pediatrician's office, there was another family from Riley there. Colin was in module 1 or 2. He was transferred from the Deaconess NICU for heart problems, got a pacemaker and after some other complications, went back to Deaconess. It was nice to see him doing so well. He isn't on oxygen and takes most of his feedings orally, but has to supplement with the tube sometimes.

Anyway, back to Gabe. He is sleeping so well, I kind of hope we may get drop a nighttime feeding or at least stop fortifying the breast milk (if I haven't explained that before, it just means we add formula to the breast milk so it is higher calorie). OK, if there are any Riley nurses still checking on us, what do you think? Will we get to change anything with such impressive weight gain? We see Dr. Rouse on Friday here in Evansville and Developmental Peds when we are at Riley on August 27th. I am not sure who is making the feeding decisions. The surgeons called pretty much all the shots when we were at Riley, but I know there are dieticians with Dev Peds who might advise us. I guess we'll find out. Tomorrow is the telethon's first day and we are going on the air around 10:20ish. Wish us luck. Hopefully we don't fumble through it.

More pictures

There are more great pictures below! I even found a picture of Dave Knopsnyder from Summer of 2006, playing guitar out at Lincoln State Park.

I made it to mass yesterday - first time since I have been home. The boys were enjoying their last day of summer vacation, so I went by myself (that way, I also get to actually hear the homily). I'm really glad I did get to pay attention (ofcourse I always try to pay attention, but between two wriggling, impatient boys it isn't always easy). One big point Father made was the importance of having a group to support you, as opposed to going it alone. The analogy he used was a flock of geese and studies that have been done to look at why they use a V formation. He said it has been shown that when they fly as flock in formation, they get a boost from each other and don't have to work as hard. They also take turns in the lead role, so nobody has to do the hardest work all the time. When a goose falls behind, he has to work a lot harder than when he was with the flock - and the flock has to work a little harder as well. I've said from the beginning that we have not done this alone. Every day has been made so much easier because of so many people and we are so grateful to everybody. One person can choose to do things alone, but I do think that is a choice. No matter who you are, if you really need help and you are willing to ask for it, there will be somebody there. Asking for help probably hasn't always been my strongest point, but I'm sure learning fast to accept it. I think difficult times also makes you more aware of others who are struggling and how trying to reach out to them can take your mind off of your own little problems. As I have said before, we've certainly grown from this experience. So, anybody need anything?

Miracle Telethon

I got a call yesterday from the miracle network at Riley. They want us to come on the radio Thursday morning during the telethon in Evansville to tell our Riley story. I really didn't expect that. I guess I knew it was remotely possible, just didn't think it would really happen. Hopefully our story will reach somebody somewhere and help inspire them to contribute. I know I am a sucker for radiothons, especially when they play those songs with the family voiceovers. I bawl like a baby and reach for the phone while sniffling and wiping my nose with the back of my other hand. Have you heard Blessed by Elton John? That one really gets me! I believe we will be on WIKY (104.1) Thursday, August 16 at 10:20ish.

The last two nights Gabriel has been conking ou around 9:30 or 10:00 and sleeping until around 9 AM. He is getting pretty regular on his awake times during the day too. It is pretty nice, especially since school starts Monday. We got the boys to bed early tonight, trying desperately to move them towards being able to wake up before 8:30. Monday may be a little hectic.

Blizzard miracle day

Did anyone make it to DQ today? If so, let us know your favorite! I had a heath bar blizzard, although my usual fav is the german chocolate blizzard. I don't really like actual german chocolate cake, weird, I know! Josh had a cookie dough blizzard and we brought home a turtle blizzard for Mom. So, that is the tally in our house.

Margaret (Grandma Maggie) heard about the riley radiothon on WIKY, which will commence August 16-18. I went online and filled out the form to answer phones for a couple of hours. I have never done anything like that before, so I am kind of excited at the idea. I'll let you know if they contact me. I also filled out a form to "tell your Riley story". Not sure what they do with those, or if they'll do anything with ours, but I sent it in. Well, the Reader's Digest version anyway!

Gabe has been deciding to stay up 'til midnight the last several nights, so I am TIRED! He sleeps 8 to 9 hours, but doesn't have to wake up to eat - I, however, still have to wake up to feed him. *sigh* sleep is overrated anyway, right? just agree with me, I'm cranky when I'm tired and have to be right. I think he is actually asleep....is that right? Yep, he's asleep. I'm going to bed - wish me luck, this is usually his cue to perk up and smile adorably.

First Steps

We had our evaluation with FS, and it went pretty well, no surprises anyway. They felt like he was where he should be developmentally in every area except for eating (duh!). We were concerned about the head/neck stability, even though it has been improving. They felt like he was right where he should be for stability. He performed pretty well - I moved a couple of times because he was watching me and not her, then when I spoke he looked over towards my voice, which was another important aspect of the eval. They seemed pretty pleased with where he is. She said we likely could get services related to the swallowing and eating, but the therapist who would do that would likely want a swallow study, which we figured.

Weight check

Our little "heavy weight" is up to 12 lbs, 1 oz! If you remember, one week ago I believe he was 11-7 ish! Progress, progress, progress!! First Steps comes at about 11:30 to do the evaluation to see if Gabe will need any services. Right now he is snoozing, so hopefully he wakes up for it. Sleeping through therapy sessions was frequently an issue in the hospital. I'll write more later, after they leave.

I got some more pictures from the wedding from Abby, sister of the Groom! I'll get those posted here in just a few minutes.

On another note, some of you may have seen the Dairy Queen commercials regarding blizzard sales tomorrow (Thursday) and donations to the Children's Miracle Fund. As if many of us really need an excuse to get a blizzard! Since it is for such a great cause - I would challenge all of you to go and enjoy a blizzard tomorrow, and think of Gabriel and the millions of children across the country that may benefit from it. It is going to be hot enough, so why not? Ditch the diet for one day! If you do get one, leave a comment on the blog and let us know your favorite flavor!

More pictures

ok, so he didn't go to sleep as I thought he was. But I got some great smiling pics. Now you tell me if that looks like a baby getting ready to sleep anytime soon!..Yep, I'm going to need Starbucks tomorrow. Actually, the Coffee Beanery is much better. I am actually not a fan of straight Starbucks. I know, sacriledge!! I do like their flavored foo-foo drinks. Then you get the added bonus of a sugar buzz to go with your caffeine. Ok, I am typing one-handed while giving the breathing treatment - multitasking - but it is a pain, so I'm done again!

New pictures

Just posted a bunch of new pictures. They vary from pics taken around the house of Gabe to wedding pictures to the pics of Justin and Kendrick's pets from Build-A-Bear. Enjoy!

Today was a odds and ends kind of day. I think we are done with the school shopping, so it is nice to have that out of the way. Nothing new to report with Gabe. He is sitting next to me talking to his Snoopy doll blanket. It is pretty cute. Don't worry, I'm talking to him too, even as I type. What I would really love to see (as much as I love seeing him so alert and happy) is for his little eyes to close. It is hard to go to sleep when he is being so cute and alert. I had really planned to be asleep by now. Uh oh....ask and ye shall receive - he is doing the heavy eyes thing.

Just one more thing and I am signing off (especially since it looks like Gabe is signing off). My brother emailed me an update on Dot Mimms (remember a few days ago I asked for your prayers for her. She was diagnosed with HELLP syndrome - not a spelling error, that is the acronym. Consequently, HELLP is what Mom had when I was born, except they didn't have that name for it.). Anyway, she was discharged from the hospital!! Thanks for the prayers, I knew you all would come through. While you are at it, I need to ask for your help once again. When I went back to work one day last week I learned that one of the nurses had just been diagnosed with Leukemia the week before. Apparently she has had it for a while and it has just now been diagnosed. She is an incredible person with a beautiful family, who is going through hell right now. I don't know the prognosis, just that things aren't so good. Her name is June, and I know I can't count on you all to get to work on this. Thanks again.

ok, bedtime!

Wedding Day

The big day arrived and we were so glad we were able to be a part of it. Gabe wasn't there in person, but it was such a comfort to know he was home and in capable hands. Mom said while we were dancing at the reception, they were dancing at home!

The whole day was beautiful and came off without a hitch - well, except for the Bride and Groom. You know, getting hitched...ok, bad joke. Anyway, despite the heat and humidity, everyone had a wonderful time. You could really feel what a special day it was and how much it meant to everyone there. You just know when a couple is going to make it. We knew going into today that most of the guests know about Gabriel and our story - most of you are following us on a day to day basis, and we still appreciate how much you care. Anyway, we wanted for this day to be about Kaci and Justin and not us, but they surprised us. Their Uncle (Dave Knopsnyder) who has visited Gabe up at Riley, wrote a song from Gabe's perspective. It is absolutely beautiful and Kaci had the song played for us at the reception. I don't think there was a dry eye in the house - tears of joy. Joyful celebration of life, and what a day to celebrate. A very special thanks to Dave for capturing all of our hopes and fears so beautifully and eloquently - and thanks to Justin and Kaci for sharing their day with us. I've said it before, but it is always worth repeating, we've been so blessed to have the support of so many and we are so grateful. Keep praying for Gabriel, and pray for Kaci and Justin as they start out on their own journey.

The next post has the words to the song. We are trying to figure out a way to post the vocals.

Gabriel's Song

By Dave Knopsnyder

One day in late May, a child was born, Gabriel was my name,
Icame into this world on a wing and a prayer, not knowing how long I'd stay

It would take some time, to know for sure, if the problems would be too great,
Alhough the odds weren't good, I knew somehow I would fly above the storm.

I could feel the power of family and friends, and others I'll never know,
a feeling so strong, like a blinding light, giving me the spirit to fight.

If you believe in God, and miracles, sometimes it's hard to see,
that the prayers from people everywhere, will help others just like me.

This is a song of lasting hope, a song for all to believe,
about a chance to live, a chance to learn, a chance for all to see.

So give me my wings, I'm ready to fly, like an eagle in the wind.
I'll use the prayers from people everywhere, to fly above the sorm.

Now Mom, you may not think I could feel your touch, but I could feel the love pouring through,
and Mom, it won't be long before that very first hug, I need it as much as you.

And Dad, you know I could hear your words, and Dad, I love you too,
I could feel the strength within your voice, helping to guide me through.

This is a song of courage and strength, a song of lasting hope,
about a chance to live, a chance to learn, a chance for all to see.

So give me my wings, I'm ready to fly, like an eagle in the wind,
I'll use the prayers from people everywhere, to fly above he storm.

I'll use the prayers from people everywhere, to fly-------above the storm.

Still doing well with no changes really to tell about it (and that is a good thing!). I went back to work for just a few hours on Thursday and it really wasn't bad. Actually it was nice to see friends I had not seen in more than two months and to do something very normal - work!

Gabriel continues to smile more and more, which is such a joy! The boys love seeing him make these faces. The other night I was sitting with my feet propped and Gabe resting on the back of my legs, facing me. I was raising his arms up, doing the "so big" game, and he would open his mouth as wide as he could and raise his eyebrows each time. We were all thoroughly entertained, and Justin kept falling on the floor laughing. Ofcourse I sent Josh for the video camera and the little stinker wouldn't do it nearly so dramatically on camera, but we got a little bit recorded.

Justin and Kendrick are now pursuing nursing careers, as the learned so much up at Riley. Every day they diligently care for their charges, Leo and Riley (Kendrick's bear and Justin's Lion from Build-a-Bear). Justin says his baby is in module 1, bed 1 and Kendrick's is in module 3 bed 1, just in case you want to send a get-well card. The boys are very good at remembering their "babies" breathing treatments and also their tube feedings (I gave them each a 60 cc syringe and jerry-rigged some curling ribbon through the opening, which we taped to their noses). Ofcourse I have pictures, I just need to get them on the computer.

Ok, I have to get back to bed now!

Weight check

Gabriel is gaining weight well! Last Thursday when we took him to the pediatrician for the first time, he weighed in at 10 lbs 13 oz. Today, 6 days later, he weighs in at 11 lbs 7 oz! So even though he is spitting up, obviously it isn't too bad. The spitting up is still mainly with the phenobarb and vitamins, which don't smell very good, so they probably don't settle on the tummy too well either. That is it for now!

Others in need of prayer

I got up for the 6 AM feeding and while I was waiting to put the second half down the tube, I decided to check email. I got an email from my brother requesting prayers for a friend. He has a close group of friends from high school who still stay in touch and support each other through everything (they call themselves the elders). I've known most of these guys since I was in pigtails. Anyway, they have all been praying for Gabe and us from the beginning and now one of their own needs prayers. I don't know the whole story, but one of the elders has a brother who just had a baby. The baby is fine but his wife's kidneys are failing and she was life-flighted to IU med center. Their names are Dorothy and Brian Mimms. This blog has provided us with a safe haven and a huge network of support and prayers - please direct some of that energy to the Mimms family. On a side note, I graduated from high school with Greg and Brian's younger sister, Leslie. I know you will come through for them as you have for us.

I got another email from a mom in Justin's pre-k class. She has a friend with a child getting ready to go to Riley (I don't know why) and another terminally ill child at home. She asked us for information on the Ronald McDonald House -I'm asking you to pray for them as well. We went through some pretty scarey times, but were still aware of many struggles much greater than ours, especially our last month there. We've been blessed with two completely healthy children and a third that is writing his own medical miracle story as the days pass. We know how fortunate we are. Thanks for your help, once again.