Good night!

Just a quick note, because this was too cute not to pass on. The older boys were finishing their stories and getting ready for bed and ofcourse, they had to say good night to Gabe. Kendrick said good night and gave a smothering hug. When it was Justin's turn he looked up at me (I was holding Gabe) and said, "Mommy, I want to give him two kisses because I love him and he loves me too". One of those moments that goes straight to a mother's heart...mainly b/c she knows it may not last. I wanted to get this in print for two reasons 1. obviously it is very sweet and cute and 2. to remind both of them of this moment in the future.

Ok, that is all I had. Good night!

We are currently in the happy position of not having much new to report. Gabriel is settling into a normal baby role. As Mom says, he eats, he poops, he sleeps, he spits up and that is a busy day for Gabe! He is starting to smile more again, which is reassuring to us. He is also trying to roll a little! A couple of days ago, Mom asked me if I had placed him on his side to sleep and I replied that I hadn't. We both wound up staring over the side of he bed grinning like idiots at little Gabe sleeping on his side, all by himself! The only other news we have is that first steps is coming tomorrow to get things started to see if he will qualify (or even need) services. I don't think he'll actually need much therapy, especially considering all he went through.

We are busy, but mostly trying to be as normal of a household as possible for Justin and Kendrick's sake. Josh and I took them swimming yesterday - since school starts in two weeks and I haven't done much summer stuff with them, and also while we have a live-in babysitter! When we got back, we discovered that some folks from my work had brought us some food. There was homemade salsa (I know Karen made that, it's my fav at all of the carry-ins) and chocolate chip cookies that I haven't been able to stay out of. Thanks for the grub! Otherwise we are getting ready for the wedding (four days and counting!) and for school to start.

Sorry it has been a couple of days since posting. I think we are starting to get settled in. We've been gradually moving Gabe's feeding schedule forward so it works a little better for us. He is finally starting to smile a little bit again, so maybe he is getting used to being here. I still think he misses his "aunts" at Riley, so with that in mind I called last night. He was awake after midnight, so I was too, which wound up being a good time to call. He "talked" to Lori and Tabatha for a little bit. It was sweet to see his eyes widen and his head turn when he heard their voices on speaker phone. After spending so much time there, I was glad to hear their voices as well. Our spot, bed nine, has been filled just as we knew it would be. Justin and Kendrick are happy to be home, but miss Indy too, especially the people mover. Kaci's fiancee, big Justin (we'll call him BJ for now), made the mistake of asking Justin a question about the people mover and received a 15 minute illustration of the riding process - from start to finish. They were out at a restaurant and the dissertation started during dinner, and continued even as everyone was exiting and heading for their cars. BJ said he wouldn't make that mistake again. Somehow he managed to escape riding, we aren't sure how

Gabe's big brothers love helping take care of him. They fetch things and toss the dirty diapers for us. They come running when he cries and get all excited when his eyes are open. Justin watches everyone who comes near him, always checking to make sure their hands are washed. Kendrick loves to "rock" his bassinet (which he can barely fit into) with the gentleness of the iceburg hitting the titanic. He gets a little overzealous.

Today Josh and I took Kendrick to build-a-bear to get his own bear. Uncle Mic took Justin when Kendrick was a baby and poor Justin was having a hard time adjusting to life as a big brother. He adopted "Leo", a lion, to take care of. When we heard we were coming home, the first time, the boys went with the Wittmers to get a bear for Gabriel. The bear they chose, which they appropriately named "Miracle", is extra special since a portion of the purchase proceeds go to fund children with health problems. Justin stayed home with Grandma Carolyn to help look after Gabe. They also read another chapter of Alice in Wonderland, Justin's first chapter book. Grandma Carolyn bought it particularly for Justin and they have been reading a chapter every day, which Justin is really getting into. He has tons of questions, as you can imagine!

Being home hasn't been nearly as traumatic as it could have been, thanks to lots of help! Grandma Carolyn keeps things running smoothly and really allows us to do whatever we need to do. Grandma Maggie has been popping over with food, and some snuggle time with Gabe, ofcourse. Brooke, Gerald, Kaci and Big Justin have all taken turns spending time with Justin and Kendrick, getting them out of the house since we can't take Gabe anywhere with us. On Saturday, Arlene and Amanda Smith came by with a complete meal of Merckley's BBQ, potato salad, chips and buns. It was fantastic. We can't say enough, yet again, how much we appreciate everyone's help. We definitely have not been alone in this and we are so grateful. We love having our whole family together. At this moment Gabriel is in Josh's lap and Josh is making faces, trying to get a smile out of Gabe, who looks quite satisfied with himself (look at what I can get these people to do...I rule!). The boys are alternating between setting up a game, which I have promised to play with them, and running over to climb up in the chair with Josh and Gabe. This is what Sunday afternoons are all about, and it means so much more now, knowing how different things could have been. Hope you are all enjoying your Sunday as well.

Last night was much better! He really didn't sleep much his first 24 hours at home and he was spitting up quite a bit with each feeding, which worried me a little. I knew it could be the change in environment, or withdrawal but also wondered if it could be his CO2 getting worse (the first two I could handle, the third had me a little worried). The home health respiratory therapist came by and thought he looked ok, based on what we told her of his norm.

After the older boys went to bed, Gabe got a bath. I also cleaned and then reinserted, with Grandma Carolyn's assistance, his feeding tube. I remembered nurse/auntie Laura mentioning before that when Gabe had been spitting up a lot, she put the feeding tube down a little father and it improved. I tried that and the spitting up has gone way down. All of this activity was pretty exhausting (for all of us). After the 11:00 feeding/phenobarb/albuterol treatment, he fell asleep and did not wake up until around 5:00 this morning, when I changed his diaper. He was sleeping so well at the 2 AM feeding, I didn't dare touch his diaper (it was just a little wet). I was thinking about calling up to Riley about the sleeplessness and spitting up, but both have improved already.

We got him to Dr. Voyles, the pediatrician, this morning where Gabe was treated to three immunization shots. His office had us come in at 8:30, before anyone else was in the waiting room, which we really appreciated. Dr. Voyles agreed that all of us should get flu shots this year to help reduce Gabe's exposure to bugs.

Justin and Kendrick are currently getting haircuts with Aunt Kaci and Grandma Maggie. I figured with the wedding coming up, they could decide how their hair should look. Josh is taking a nap (it's a work thing), Grandma Carolyn is putting away groceries and looking after Gabe. I am playing hooky - and updating the blog, obviously! OK, break time over.

Bleary, but ok

Well, we survived our first night. More importantly, Gabe did! With all of the stuff to juggle, I admit there were moments we felt like first time parents. It seemed like a comedy of errors at times. We'd all get situated, he'd wake up, he'd go to sleep, his monitor would alarm, we'd spring up (loose connection, no problem), now he's awake, turn on the crib toy, alarm going off, wait it's which alarm? oh, time to eat...stumble down the hall, ok back to sleep, he spit up, ok he's clean, now exploding poop, etc... you get the idea. So we are both tired, but feel satisfied we made it.

Today we need to get organized, and do a bunch of laundry.

Older boys are in bed and we are about to get ready for the next feeding/albuterol treatment. Gabe is bright-eyed and checking out his new home. He's watching sports right now. All day he has had a "where am I?" look on his face! He has been awake most of the day, so we are hopeful that we will get some sleep tonight...? We'll let you know tomorrow! It is a great feeling to be sitting here on the floor next to Gabe, home. I am sleeping in my bed tonight! We are doing normal family things. Josh just snuck Justin's first lost tooth out from under his pillow and replaced it with 5 quarters and a dollar (wow! that's inflation for you...we got one quarter!). I have to say, he makes quite a handsome tooth fairy.

Homecoming pictures are listed below.

HOME!

We made it! Sorry for the delay in blog, it has been a little hectic today! We are home and ok (you'd be proud of us in the NICU, when the alarm on the monitor went off, we remembered to check Gabe first and then the monitor. He had a lead off). We left shortly after 12:30 and got home around 4:00 Evansville time. The Wittmer's were here to greet us, complete with a welcome home banner and balloons. It is so good to be home! It is a little daunting to know he is all of our responsibility now. Laura told us many times it was ok to call (careful!), so we know we aren't really alone in this. We had lots of help getting Gabe and all of his stuff unloaded. We got him fed a little late, but did not forget his albuterol treatment (RTs, are you proud of us?). OK, still a lot to do, so that is all for right now. I'll try to write more and add pictures after everybody is in bed (if I am not curled up asleep myself).

Thanks again to everyone who helped get us here!

Going Home, again

OK, I think we are all systems go this time, but not without some reservation. The sleep study was very similar to the nap study, which showed overall elevated levels of CO2. Dr. Rouse explained that he felt there were two options: 1. Get the trach or 2. take hime home. He feels there are risks with either option. With the elevated CO2 levels, the big risk is if Gabe were to get a cold. He could be in respiratory distress rather quickly, which they feel would be greatly minimized with a trach and ventilator. However there are risks with the trach as well. For example there is a tremendous amount of care involved with a trach and if it were to get plugged, he could be in the same rapid distress situation. Apparently there aren't any home health nurses specializing in infant trachs that could come to the home and adequately check our progress, which adds to the risk.

We talked about it quite a bit over the weekend and felt that we should get him home and postpone a trach. We have the benefit of summertime, meaning it is not cold and flu season and the boys aren't in school to bring home all kinds of bugs. He will be followed monthly by several specialties, including pulmonology - who will likely recommend follow-up sleep studies. We will also get a repeat echocardiogram at some point to watch for pulmonary hypertension. We voiced this to Dr. Rouse and I think he felt that was a valid point. He cautioned us on the importance of keeping Gabe's exposure to bugs as minimal as possible, meaning no venturing out with Gabe except to where he absolutely needs to go and no visitors. This is hard b/c we want so much to introduce him to everybody and realize this will have to wait. At the end of the discussion, I asked him what he would do in our position (with the understanding this is a hard situation and a hard question to answer). He responded that he didn't know.

So, *deep breath* the day we have waited for has arrived. We are as comfortable with this as we can be. Josh's birthday present for today is the news that Gabe is coming home - that and the dirty diaper Gabe presented him with when Josh was holding him.

No news yet, there wasn't available to read the study, as we had hoped there might. I guess that is why I never got around to updating yesterday, sorry. Hopefully we will know more tomorrow and be able to make a decision. I have this decision won't be so obvious as some of the others have been. It will probably fall on our shoulders to examine the tests and the recommendations of everyone else and then decide what to do. We are praying for wisdom to make the best choice for Gabe.

The boys had fun in the module again yesterday. Laura set out paper and crayons for them and they made artwork for several of the nurses. Gabriel also got another bath, this time with a jacuzzi-effect. They put the oxygen tube (don't worry, Gabriel still had O2) down in the bath water with the soap and there were instant bubbles.

Check out the new pictures!

Sleep Study tonight!!

We got back to Indy around 8:30 local time and the boys very much wanted to come straight over to see Gabriel. I was more in favor of getting them to bed, but they talked me out of it. Thank goodness they did b/c when we got here, Tabatha was grinning and told us they had a spot for him in the sleep lab due to a very last minute cancellation. If we had waited, he would have been over there already. All of us walked over to the sleep lab and watched Gabe get hooked up to the machines, told him goodnight and then went back to the RMH. I am back at Riley and intend to spend the night with Gabriel (first time I have been able to!). They think there might be someone available to read it tomorrow, but it doesn't sound like that is definite. We may have to wait until Monday, but that is still better than not even having the study done until Tuesday. Let's hope for better results - ok, I'm over to the sleep lab!

Blogging from Evansville

When we didn't get the news we wanted yesterday, Mom (she flew in yesterday) and I decided to go ahead and come to Evansville. I have some stuff to do for Aunt Kaci's wedding that can't wait any longer (I'm tryng, Kaci!) or my dress will look a little funny at the wedding. BTW Kaci, good job supporting your brother on his blogging. I knew he could do it too.

I'll add my comments to Josh's (you knew I would). Naturally we were disappointed, but we can't gamble with our child's life, and that applies to either decision. He's been through so much already, ergo we don't want him to go through the trach process unless he absolutely needs it. But if he truly needs it, end of story. We passed Dr. Duffy in the hallway and I think he read my mind. He said everything happens for a reason and maybe this was all just a little too fast for Gabe. Maybe he just needs a few more days and we averted a possible disaster. We have felt very guided through this whole process so I agree with that 100%. OK, I am out of time! Blog atcha later!

Extended Stay

Wish we had better news, but Gabe will be here a while longer. Dr. Weiss, the pulmonologist, met with us and recommended Gabriel get a trach and be on a ventilator. She said the sleep study showed his CO2 levels were high, which puts him at a significant risk for a "sudden critical incident" Basically, since most of Gabe's diaphragm is a patch, he cannot control it as well. His diaphragm is not able to pull in, and push out air adequately. Therefore, he is not able to get rid of the CO2, or ventilate, as well as necessary. Dr. Weiss is concerned that the CO2 will build up and he will stop breathing. He could also be in danger if he gets a cold, etc. since he has very little reserve. She said his breathing will get better over time, but it will take about a year. Gabe would have to have the trach for that time frame. If he does get a trach, he could be here two more months. Other options include sending him to St. Mary's NICU, but they can't keep him there for a year. Also, he is at a greater risk for getting a cold or infection in the hospital. She also said we could decide to just take him home and monitor him closely. But if we did that, and something happened to him, we could not live with ourselves.

Dr. Weiss told us to talk about it, and said she would talk with Dr. Rouse. Dr. Rouse talked with us later. He didn't come out and say it, but we got the opinion that he did not agree with the trach decision. He suggested what we had discussed with each other: repeating the sleep study. Gabriel had been off CPAP for under 48 hours when he had his first sleep study, and might have still been adjusting to being on only oxygen. Hopefully, in the time since the first sleep study, he has gotten stronger and has learned to use his other muscles better. Dr. Rouse also said he would discuss this dilemma with his partners and get back with us. We are in a holding pattern for now. They probably won't get to his sleep study until Monday, and it will take a couple of days to get the results. We'll pray that the results are better this time and he can come home. But if the results are the same and he has to get a trach, we will consent. We have to do what's best for him. We just want to make sure the trach definitely is what he needs before we agree to it. We have to keep thinking about where he started and how much he has overcome. At least they found this before he went home. Just one more bump in the road.

Waiting...

Well...hopefully just a short wait, but not too sure. The pulmonologist is concerned about the CO2 levels during the sleep study. From what Dr. Rouse said, this is out of the blue. He has been doing so well, but if his CO2 levels (they measure them from the nose, so it isn't the blood gas levels) are really too high, he could be at risk, especially if he were to get a cold. Everyone who has worked with him on a daily basis feels he looks good and he is doing well, but Dr. Rouse said it could be a sign that maybe he isn't doing quite as well as we thought. Bottom line right now, the pulmonologist wants to see him for herself and listen to him (his chest and breathing). Then we'll see. She could give the green light to go on home, she could order the sleep study to be repeated or she could have other suggestions. We won't go down the "other" path. It could include a trach, which we are less than enthused about. If he really needed it, ok, but they are going to have to convince me he does really need it. OK, let's just stop the speculation and wait for the doctor. Sorry, I am the queen of speculation and "what if"...

We are getting down to the nitty gritty now. Josh came over early this morning to get checked off on some of the care items. He gave the medicines and has placed the ng tube once, and just needs to do it again. I did laundry and started getting stuff ready to be packed up! When we both went over for the lunch time feeding, the neonatology team was rounding and looking over the sleep study. Preliminary results from the sleep study show he had a CO2 spike at some point, but they don't have the full report yet so we don't know what that means. Oh please don't let it be a snag in the plan! After they left, Laura mentioned that it could be just a little thing - like if he was upset or crying. We'll just have to see what the full report says later today. Our O2 tank, monitor and nebulizer arrived, so we are getting trained on the neb at 1:00 and signing all of our home health paperwork. That'll be one more thing to cross off of the list (Laura made out a very detailed list on Monday for what we need to get done to get out of here). She is cracking the whip for us! The circumcision should happen sometime today (poor guy). Hopefully by tomorrow we will have very little to do!

We have gotten multiple emails and requests to keep the blog going. We intend to. It has been therapeutic for me too, and has helped me to keep track of when things have happened. Life is going to get pretty crazy, I assume, when we are home. So I doubt it will be daily, but this has been almost like a journal for me and even though our hospital chapter is ending, a whole new phase is beginning. Keeping up with appointments (and we have been assured there will be many - just look at the Hufty's! They left Saturday and were already back for an appt the following Tuesday!) and learning what our new "normal, daily life" will entail is going to be quite the adventure. We appreciate everyone's support so much. We owe such a debt of gratitude to so many people, including some we have never met in person! Thanks for sharing this experience with us.

Few more pictures

Nothing new to report about Gabriel, just getting the odds and ends out of the way. I have practiced placing his NG tube (his feeding tube) twice now, so I am checked off for that. Josh has to do that a couple of times, to show he can do it too. Naturally Gabe doesn't like it very much, but until he gets better with the oral stuff, the kid's got to eat! After I placed it, got him fired up, I gave him his 10 ml bottle. He took it down in about two minutes, which he hasn't done before! Now, if only he would do it in front of the slp (speech pathologist working with him on feeding). She came by twice yesterday at his feedings and he wasn't very interested in the bottle, which makes it pretty hard to evaluate swallowing. Maybe he'll behave tomorrow!

On a completely unrelated topic, I got to touch the Vince Lombardi trophy!! HAHAHA!!! I only had to stand in line about two minutes too! Just happened to be in the lobby when they were setting up for it to come in, so I hopped in line with the Hufty's, who happened to be back for an appointment. Please feel free to look at the picture below, and wish you were me! Wish I had my Colt's jersey! There are also pics of the sleep study. They're cool too.

Two more days

I talked to Dr. Rouse yesterday and he is so pleased with Gabe's progress. We settled on Thursday as a target release date. Can you believe it? He is getting his sleep study right now. I was going to take this opportunity to do laundry and pack back at the RMH, but is pouring down rain. So I am blogging and updating pictures instead. I am also working on a little something to leave for everyone here to remember us by. Some of them check the blog, so I can't reveal that just yet. It hit me yesterday that we are really leaving, and then I got that little sad twinge when I started to think about some of the weekend nurses that I didn't get to say goodbye to. We'll be back, but you never know who will be working when you come back. We'll also have to try to come for a visit at shift change so we can see day shift and night shift. I was talking to Amanda this morning, when I got her picture with Gabe's feet. She mentioned the sad part of nights is that they rarely see the babies that come back to visit. She also told me that the nurses were talking about Gabe last night and reflecting on how far he has come. Her words were very touching. She called him a miracle and followed that with "it is not that often we actually get to see the hand of God so literally at work". Something like that. She mentioned that Dr. Little (we miss him, I think they do too) was the most optimistic. Kathryn said several of the nurses questioned Gabe going on ECMO (remember how bleak it was that first night. If he really had no chance, as they had been told, it would have been cruel). Dr. Little told them he thought Gabe would be ok. I never knew he felt so optimistic that early on. As doctors, they have such a responsibility to tell you how things are. I know they want to give hope, but they can't give false hope. That would be far more cruel. There's no doubt we needed to know what we were up against. It sounds like maybe he was one of the first to really have faith in Gabe and his will to live.

I added some more pictures - so enjoy!

The sleep study is scheduled for tomorrow! Another big step that will tell us if he needs to go home on oxygen (and he probably will) and how much/how often. He's just doing so great, it is unbelievable. It's amazing that there isn't a whole lot more to tell! Nothing much has changed, we are just waiting to "get our ducks in a row", if you will. We still don't know if he will go home on a nebulizer, but that seems pretty likely as well. His morphine was weaned a little more yesterday and continues to tolerate the weaning process well. He was awake again around 8:00, so I tried the bottle and he took it all again. It won't be long now!

Off of the vapotherm.

This morning Tabatha, Gabe's night nurse, called at about 7:30 to let me know he was switching from vapotherm to oxygen at 8:00, just in case I wanted to come watch. We had a busy day yesterday, and didn't get back to the RMH until late, so the boys were still sound asleep. Since Josh had gone back Saturday afternoon, I couldn't exactly rush over. It was still very exciting and I was so happy to get the call. This is the last major hurdle, as I understand it! We still have some details to take care of, but we are almost there. Yesterday was a fun day in the module. Gabe got his first tub bath and the big brothers had a great time "helping". Actually, I shouldn't use the quotes, they did a good job and most of the water stayed in the tub (sorry Laura). Deb gave Kendrick some animal "tattoos", which he had fun showing off. Justin declined, which shouldn't be too surprising to anyone. He doesn't like "stuff" on him. After Josh left, they were entertained by making balls out of tape and balloon hands (surgical gloves). Somehow (I think Laura did that one) the balls ended up taped to the balloon hands. Then the module secretary drew fingernails and a boy ring on one hand and a girl ring on the other hand and they got married. At the 8:00 feeding, Gabe was actually awake and the boys were behaving (they had suckers from Paula) so I decided to try a bottle - success! He took down all 10 mls in about 10 minutes. That's fast for him. We finally got back to the RMH around 9:30 and it was close to 10:30 by the time we got through the bedtime routines and to bed. Late night and long day for two little boys, but they had fun.

This morning, while waiting for the boys to wake up, I was working on birthday cards for my Mom and Grandma (over a full week late - which is actually not too bad for me). As I was writing in the cards, I got to thinking about my family, especially the women since these were the people I was writing to. I've always known, but haven't always dwelled on, that our family has some particularly strong women. They've had no shortage of trials and difficult times of their own (health and otherwise) and have always handled it with strength and grace (at least in front of the world. I tend to fall apart in private when the crisis is over, so maybe they do too). I've had nothing but the best examples to look up to - from Mom and Grandma to aunts and cousins too. I know my stubborn streak is definitely inherited (ok Josh, I can just hear you, "she actually admitted to that, in print!!" Let's not make a big deal of it). So, a special thanks to all of the women in my life who have taught me to stay grounded and stand firm in the face of adversity. I couldn't have survived this (or the next 18+ years raising three boys) without you.

OK, all of that was not to slight the guys. Dad inspired an adventurous spirit and willingness to try new things (sushi and oysters are exempt) along with a deep patriotism and love for all those willing to look out for others. As I've said before, growing up in a military family made me well suited to life with a cop!

Josh and I both come from incredible families and we are beyond grateful for their love and support. I can't say we couldn't have done this without them (we can do anything we need to do because of the examples they have always given us) but we couldn't have done this so easily without them. The boys couldn't be in better hands when we are away from them. Not having to worry about them is huge. I know I can speak for Josh (he'll attest that happens from time to time) when I say he feels the same way about the examples of strength in the face of adversity and heartache set forth in his family (especially including the extended family). They are the epitomy of faith and hope and have taught me so much.

So, to sum up this rather long-winded blog (sorry, you can wake up now. I'm done) - an extra special big thanks to our families today. That's ALL of you, not just the ones we yelled at to get out of the bathroom for 18 years.

OK, I'm done.

Losing a module mate

For a happy reason! It looks like Jack is going home today! We are very excited for the Hufty's, but will miss them. We did exchange emails, so we hope to keep in touch. Yesterday they got their training to go home - training to use the apnea/heart monitor, the oxygen tank and infant cpr. Fortunately, we were able to "crash" their class. Logan's "Grammy" offered to watch the boys so we could get the class out of the way - they showed her the people mover! She raised four boys, so I get the impression watching three was really not a big deal. She is a neat lady and was fun to talk to! When our time comes, it will be one less thing we have to do. Gabe will also get breathing treatments at home, but that shouldn't take too long to train us on.

We thought the plan was to wean off of the vapotherm today and go to regular oxygen (which he can ultimately go home on) but his respiration rate is up a little bit and they would rather wait another day. He looks very comfortable and we have been told that his respiration rate may always be faster than normal, but I guess I understand being conservative. Now that we can see the light at the end of the tunnel, we are having to work hard not to get impatient. We've been here long enough to know how it goes. I definitely don't want to get him home and then see him turn blue!

The speech pathologist came by again, and again Gabe was sound asleep. He was pretty well asleep all day again. They are going to try switching his phenobarb to night instead of day and see if that helps. I thought the neurologists said it shouldn't be a high enough dose to make him too sleepy, but maybe it'll help. The pulmonologists came by yesterday too, but I don't think they said anything we hadn't heard - just confirmed info. They recommended a sleep study before going home, which we knew he'd need, and that they would likely follow him for quite some time (years, we were told). Fortunately they also go to Evansville once a month, like Dr. Rouse does, so hopefully we won't have to come back up here all the time. Of course we'll do whatever we need to do. We have to come back up at some point anyway to visit Gabe's "aunts" (that would be the NICU nurses) and so many others who have been working to take care of him and us.

Finally got some new pics posted below!

I got over here pretty early today, so I don't know a whole lot yet. The nurse practitioner was there and she said they would get him off of the vapotherm today and try one liter of oxygen. If he does well on that (they will watch him a few days), they will do a sleep study to see how much and how often he will need to be on oxygen at home. Nobody has said anything specific about the carseat test yet, but Jack got his last night. Jack is the Hufty's baby, Logan's little brother. He will likely go home today or Monday at the latest. We will definitely miss them, but hopefully we won't have to miss them here for too much longer. Becky has family in southern Indiana, so hopefully we will stay in touch. I may have mentioned this stuff already, but they got married on the same day as we did (same year too!) and were at Indiana State at the same time we were. Small world huh? Josh gave him his bottle last night and he did pretty well, considering we could hardly wake him up. He has been sleeping most of the last two days, so I think they are going to hopefully step up his morphine weaning today. The NP asked if he had been agitated with his wean - considering the past days, that would be a NO.

I want to comment on the comments again briefly - thanks, thanks, and thanks again. I've said it before and will continue to say it, those comments are so inspiring to us. They way you have all stuck by us out there is so heartwarming. From long-time friends and family to people we have never met and friends we haven't talked to in years (hey DG girls!), those comments reaffirm we are not alone in this, and never will be. Hearing what Gabe has inspired in others (the girls with the lemonade stand sent us a beautiful note - and may be on the radio soon talking about Riley!!) has made this all have some purpose to it. So if I haven't said it recently - thanks.

Ok, let's see if I can remember everything. Speech Path made it over to see him. The first time he wouldn't wake up, so she came back later and he did really well. He took 13 MLs from a bottle, which nobody really expected him to do. He was pretty tired after that (a lot to coordinate after waiting this long to learn to eat). She said they were willing to let him take about 10 ml per day by bottle, to give him a chance to learn. If he gets stronger and faster, they'll try a barium swallow to see if any milk is being aspirated (getting into his lungs).

Neurology said the CT scan looked better from the previous one. No more bleeding in the brain (that's got to be good). He will stay on phenobarb to prevent seizures for a couple of months, then have an EEG to check for any seizure activity. If there have been no seizures observed or no activity detected on the EEG, then they will wean him from that medicine.

He is possibly going to come off the vapotherm soon (not sure what soon means) and then he can get a sleep study to see how much oxygen he will need to go home on, and how often he will need to be on the oxygen. I assumed it would be all the time, but we were told he may only need it at night or with feedings, etc. Right now he is on three liters of flow for the vapotherm. He will also probably get a car seat study - he'll have to sit in his car seat for three hours (b/c that is our ride home) to make sure he can tolerate being in that position.

His central line came out last night, so the only things attached to him are the pulse-ox (ok, I have no idea if that is the right spelling) and his monitors for heart rate and respiration rate, and the vapotherm, of course! He should also be getting his first immunization this week, and will hopefully get the two month immunizations at home - I guess they can be a little late. He'll also probably get circumcized before we go (poor guy), but that is usually last thing.

Oh yeah! He passed his hearing test!! Naturally, I got a picture. I have a bunch of pictures to post. Hopefully I will be able to get the laptop out later today and get those up for everybody! My long time friends Shannon and Melanie were up here yesterday and brought us a beautiful collage of pictures and comments from the blog. Naturally I was a weepy mess...well, maybe not a mess, but definitely weepy. I got a picture of that too. ok, time to go visit Gabe. Things are happening so fast now, I can hardly keep up!

Sorry for no post yesterday! I didn't really get any new information until later in the afternoon and then ran out of time to post - the couple of times I had a few minutes, there wasn't a free computer.

OK, let's see if I can remember everything - the afternoon got pretty busy!
1. He is off of all IV meds, and getting them all orally now. No more pumps at the bedside! His central line is still in, but capped. I presume they will leave it in until they are sure he won't need it anymore. He isn't getting the versed anymore, they switched it to adavan (sp?) which is essentially the same thing (anti-anxiety drug, I believe) and getting it every 8 hours. He is still getting the morphine every 4 hours, but orally. Dr. Duffy didn't want to change too much in one day, so hopefully if he tolerates the oral meds, he'll go to every 6 hours soon and we can get him off of that. So far, he is not really spitting up much anymore, so hopefully the oral stuff is working.

2. Neurology came by and talked to me about the "questionable seizures" and the posterior brain bleed when he was on ECMO. He got his CT scan this morning, so hopefully I will get more information for Neuro later today? They did a quick eval, checked reflexes and such, but that is about all. They are going to check his blood levels to see if he is getting the right dose of the phenobarb. I have been told that Gabe will likely go home on the phenobarb, at least as a precaution against seizures. Neuro is just one of many groups we will be following up with regularly after going home.

3. Speech Path also came by, but Gabe was completely zonked. She asked questions about how he was doing with the pacifier and non-nutritive nursing. I believe she is coming back today for the 1400 (sorry, 2PM) feeding to evaluate his suck on the pacifier and I think with a gloved finger. If all goes well and she feels comfortable trying it, they may let him take a few MLs from a bottle to see how he reacts to it. If it seems that he might be able to handle oral feeds but they still have doubts, he may get a barium swallow test before going home. Mainly to make sure he isn't aspirating and he can manage the whole "suck, swallow and breathe" pattern. Breathing is pretty important, after all!

4. He is supposed to be seen by a pulmonologist too, but that hasn't happened yet. One of the nurses mentioned that Gabe may need a sleep study before he goes home. We'll see what the docs say.

It seems like I am missing something - I'll think about it and post more later. I'm in a hurry and did not proofread, so forgive the typos and other errors!

Going Home...

Ok, well not today, or even tomorrow, but Dr Rouse checked in on Gabe and was very impressed with his progress this week (he's been gone for the holiday weekend). He looked at me and said it was time to come up with a game plan to get Gabe home. He is being weaned more aggressively on the versed drip, not sure about the morphine yet. He was going to talk to Neonatology about the progress of the vapotherm wean (interesting note about that, I noticed the machine was made in Ireland!! Our family gets excited about Irish stuff) and how quickly he might be able to come off of it - ultimately, as always, I imagine it'll be up to Gabriel. Dr. Rouse also wants another CT (the last one was done on ECMO, should be much simpler this time) to check the brain - remember they found a little posterior bleeding on the last CT, and it was suspected that Gabe may have had some mild seizures during the early days of ECMO. Dr. Rouse also wants to get us set up with a pulmonologist, and some other therapy groups. AND OFCOURSE, he needs his hearing screen! Don't worry, I'll sit on my hands and let them do it - but I have already check out their machine ;)

I think I am forgetting something. I'll think of it later. Lori worked with me some more tonight on the tube feeds - particularly on fortifying the milk. Since he was spitting up, they reduced the volume and started adding human milk fortifier for more calories. She showed me how to do it and quizzed me on some facts, such as expiration dates for milk and formula. I guess we have to be checked off by the nurses on several different things before he can go home and she wanted to get the ball rolling. We still don't know for sure how much longer we'll be here, I am guessing at least a couple more weeks - but we are beginning to see the light at the end of the tunne. All of the nurses are saying "don't say the 'h' word in front of Gabe". A little superstitious? maybe, but you won't catch me saying it!

Gabriel just keeps moving forward - he had another excellent blood gas this morning and he was weaned from 5 liters of vapotherm to 4! Has it really been almost a week since he came off the vent? I think I am finally feeling comfortable that he really going to stay off of it! Once he is weaned from vapotherm, the next step (if he still needs some help) is oxygen - which he can go home on! No word yet on morphine or versed weaning, but Marcia says they haven't heard anything from surgery today. He got last night's dose of morphine about 45 minutes late and he wasn't upset about it - in fact I was holding him and he was dozing! Hopefully that is a good sign that he will maybe go to every 6 hours today instead of every four, and tolerate it ok. We have a new neonatologist starting today, didn't quite catch her name (the neos rotate every three weeks). Hard to believe we have been here long enough to be on our fourth neonatologist (well, the first one rotated out after three days). The non-nutritive nursing is going well, which is important to me, so I am excited.

I talked to Josh last night before bed and we were kind of reflecting on more conversations we each had with our nurses over the weekend. Particularly more admissions of amazement on how well he is doing, considering where we started. We constantly hear him being referred to as a miracle by people who work miracles probably daily. Josh commented on how amazing it is to hear these people refer to him as miraculous, considering where they work. Gabriel is so alert and so expressive now, it is just amazing. When he is awake, there is always somebody at his bed side, talking to him and smiling at him. I know he gets plenty of attention when we are not there, which is so heartwarming and reassuring. Monica, a nurse in the module who has never been his nurse but was ECMO tech the first night he was on ECMO, mentioned that "somebody else" has been in control. We know that is certainly true. It is hard to understand why some babies live and some don't (we highly suspect another baby died in our module - and that is why it was closed Friday evening and all day Saturday. Josh was sitting with Gabe when a new, tiny baby came in Friday evening and wasn't there when the module opened again on Saturday). I don't have an answer for that. There is a mother I have been posting with on another site who had a baby with a DH who did not survive. She says she believes Allison is in heaven praying for other babies with the same problem. People have told us how courageous they think we have been - and we thank you for that faith - but that is more courageous than I can imagine, allowing your child to go peacefully. We were preparing ourselves for that possibility and doing our best to hold it all together, but that is certainly not the same thing as atually having to let go. My heart aches for these families, and at the same time I am selfishly grateful I am not them.

Things went really well yesterday - I think he will eventually get the hang of nursing. Hopefully once his respirations are consistently (which could take days to weeks yet, I think) normal, then he might get to nurse for real! We have been warned that he may still very likely go home on the tube feeds, but we are fine with that. I don't remember if I mentioned that his versed drip has been weaned down some. He is still getting his morphine every four hours and I don't know when that will be weaned again. Maybe when he stops the spitting up, which didn't happen for the 8 AM feeding or the 11 AM feeding. There isn't a lot more to tell!! The Wittmers are up here today and enjoying the new and improved Gabe - he still had four chest tubes, two peripheral IVs and was on the vent when they were here last. AND they are enjoying the chance to hold him. I'll get those pictures posted this afternoon - we are still taking some as I type this.

The module was closed most of the day, so we didn't get in to see Gabe until around 3:00. We took the opportunity to take the boys to the Children's museum. Naturally, they had a great time! When we finally got the word that the module was open, we took the boys back for a nice surprise. They were allowed to sit in a rocker and hold Gabriel! They loved it. I knew they would be excited about it, but figured the novelty would wear off in a matter of minutes. It didn't. Both of them wanted to sit longer, and Gabriel never fussed once. His eyes were wide open and looking around the entire time. I couldn't believe how much his respiration rate had slowed down. It was in the 50s and low 60s the entire time we were in there (which is about normal, by the way!). Yesterday his RR ranged from the 70s to over 100! The spitting up has also gone down quite a bit. He looks so comfortable and, dare I say it, normal that I can hardly get over it.

I got another piece of exciting news. Because his respiration rate is so good, his nurse asked how I felt about letting him try to nurse (right after pumping, so he wouldn't get anything to choke on) a little with his next tube feeding. I believe they refer to that as non-nutritive suckling. Since he really just stopped the spitting up, she may have him "nurse" a little just before the tube feed, or use a smaller syringe so the flow is slower. I told her I was just excited about the opportunity, she could decide what was best. She ran it by Dr. Duffy and he thought it was an excellent idea. The way he was breathing just a day or two ago, I figured this step was at least a week away! This is happening in about 25 minutes, so I have to go now!

More steady progress. He had another good blood gas this morning, so they weaned him from 6 liters of vapotherm to 5. He is tolerating the wean from the morphine pretty well, except he is spitting up some more - which they say is not too uncommon during withdrawal. Dr. Duffy recommended slowing down his feeds a little, feeding him over an hour instead of all at once. That seems to be helping. Between pooping and projectile spitting up, he's gone through about 10 outfits in two days. I am waiting to move them from the washer to the dryer as I type this. I guess last night his white blood cell count was a bit high, so today they started him on a course of gentamycin, to ward off a possible infection in his central line. So far he is showing no physical symptoms of an infection, so hopefully this will take care of it without complication. I think that is all of the medical news.

Thanks to our visitors today: Cory (Josh's cousin) this morning and my Aunt and Uncle from Milwaukee. Thanks for visiting with us and admiring Gabe, doesn't he look fantastic?

One of the surgical nurses had a little boy with a pretty serious DH and the NICU staff (particularly one of the RTs) have been talking to her about us. She came up today when she got off work and talked to me for a little while about their experiences. They were up here for three months, with plenty of setbacks and complications. It was comforting to talk to somebody who has been there. Here's a small world tidbit, she and her husband grew up in Evansville!

All chest tubes gone!

Dr. Duffy reviewed today's xray and removed the right tube. We are also weaning from the morphine today - pretty soon they will stop the drip and he will get morphine doses on a four hour schedule. If he handles that ok over the next 24 hours, they will do the same with the versed. He is resting much better today, in fact he has slept as much today as he was awake yesterday! Keep up those prayers for easy breathing, it seems to be working so far. We snuggled for a little while during and after the 2:00 feeding. It it is so nice to hold HIM, not just him on a pillow - did I mention that was how I am holding him now? Another big step towards independance - Laura (yesterday's nurse) and Stacia (today's nurse) have been letting me get him up and put him back more by myself. That is pretty darn cool too. I wouldn't say we have one foot out the door just yet, but we are getting closer. The narcotics wean has me excited and nervous at the same time. The nurse practitioner asked for a blood gas today, just to see how he was doing and it was very good - I didn't get the exact numbers, just that it was "very good". No weaning down on the vapotherm today (honestly, I am not sure I could handle it, Gabe may be fine with it!) but he is getting another blood gas in the morning, and they will decide about weaning the vapotherm then. Reading back through this I can see what a contradiction I am. In my last post I am praying for things to move along and now that they are moving along so quickly, I am scared to death! OK, the boys are on their way and should be here soon so I am going to see how close they are!

I don't have a lot of news yet. He rested over night, which is good. He was awake ALL day again yesterday, which is not normal for a baby!! Last night I got to thinking more about it (too much time to myself at bed time) and it worried me that he could wear out and go back on the ventilator. I know shouldn't dwell on the "couldas", but things have been going so well and I find myself thinking it is too good to be true, like we are due for another setback. I pray for him to keep moving forward with no setbacks, but sometimes feel guilty asking for more when we have been given so much already. I know it sounds strange, but we have been given a huge gift and we are far from being in the worst shape around here anymore. Two nights ago I was walking back down the hallway, on the way back to the RMH, and a young couple walked out of another module and slumped together against the wall in tears, comforting each other. We were there not so very long ago - so I guess that is why it is sometimes hard for me to pray for a "hurry-up". I will have to count on all of you to help me out there. Maybe I was also feeling a little emotional b/c I love the fourth and even though I had a great time watching the downtown fireworks with the Huftys, (and some of the nurses and their families too), I missed my family. I am the girl who can't get through the National anthem without my eyes watering, even if it is a high school basketball game!!

On another note, when we do get out of here one day - and we will - it won' t be without some sadness. We've gotten pretty attached to a lot of folks around here. I can sleep at night, or leave for lunch or to do things like this, b/c I know he is watched over by some fantastic protectors. It's still hard to leave him, but I can do it and feel ok.

Geez, I just read back through this post - didn't mean to get so sappy!

Happy Independance Day!!

Gabriel declared his independance from his warmer today, and from One more chest tube AND from the cpap. He still has one chest tube on the right. If I understood the Dr right (can't remember his name. He is the first year surgery fellow who took Dr. Little's place and I just met him today) the chest xray showed a little whiteness on the upper right lung - remember, he's had this in this spot before - that could be the adelectasis or a little collapse or a little mucous. He ordered the vibration treatment for the right lung and d/c the the vibration for the left.

Gabe is now in a big boy crib, and wearing clothes!! I took pictures, but left the camera upstairs (I know - sorry!). I'll get them posted tomorrow. Laura handed him over to me and got everything switched over. I went out and got him a mobile in anticipation of hopefully getting into a crib soon. He really seems to like it, and the nurses have a choice between Mozart, Beethoven and Bach to listen to!

What else - there's so much for today! Hmmm...oh yes - as I was walking in this morning, I ran into Laura as she was heading out for a break and she smiled and told me there was a surprise waiting for me. Gabriel had been taken off of the cpap, which he hated, and put on the vapotherm. As I understand it, this will be good for him b/c, well...as I just said, he hated it and it got him pretty worked up. The flip side is the cpap provides a little more support than the vapotherm, so he has to prove he can handle it. He didn't sleep much at all today, but still seemed comfortable and content and did not seem to be working harder. This evening, around 8:00 he was upset, probably overtired, and a little difficult to settle down. He got his breathing treatment and vibration, then his meal and settled down to sleep. I know that DH babies can tire out and are at higher risk for reintubation, so I hope being overtired tonight was more of a normal baby overtired and not a sign that he had to work too hard to breathe. I suppose if the latter is the case, we'll probably know before too much longer. Hopefully that is not the case, but if it is, we'll just have to remind ourselves of how far he has come and that he'll rest and try it again. Let's hope we don't have to worry about it.

Some other smaller big steps - they stopped the TPN (IV nutrition, that runs $500+ per bag) today. If they have be on it for too long, it is hard on the liver and Gabe has been a bit jaundiced the last several days, so getting off of that is very good for him. He is doing great on his feeds, which is why thay stopped that. B/c of that step, he doesn't have any more peripheral IVs, just the central line! Ok, I think I got everything, but I'll double check and post more tomorrow if I forgot.

Surprise!!

The neonatologists were rounding at about 11:30 this morning and the nurse practitioner mentioned that she thought Gabriel should be extubated today!! Actually, his nurse today, Marcia, and some of the other nurses heard about the plan for Thursday and were really hoping to be present for the big moment so they talked to the NP about it and she agreed that he was ready. I guess there is some risk for being at low settings for too long since he was essentially breathing on his own and doing it over a tube, which can get challenging. The NP (Kathy Nawa) was worried about possible collapse if intubated at the lower settings for too long. So the decision was made and the time set for noon! My jaw dropped, and then ofcourse the huge grin came out. This is a big test for him and I was very loathe to leave him once it was done, which is why it has taken so long for me to blog it, and post the pictures!! It was very emotional for me b/c I knew how much was riding on this step, and hearing those first "cries" was another long-awaited for moment. OK, so those cries sound more like squeaks right now, but they'll get stronger, I am sure. It was also wonderful to see his whole face, without the tape, for a few seconds. They let me snap a quick picture of his screaming face before they put the cpap mask on and then more tape for his feeding tube. To keep the cpap secure, he wears a special cap with fasteners, and he doesn't like either very much. As long as they keep him on his belly, he is pretty content. When he is on his back, and even when I am rocking him, it is work to keep him settled down. The night nurses have talked to the Neos about vapotherm (oxygen with a humidifier, which is what the day shift was hoping he would be on after extubation) and they prefer to see how he does through the night and maybe try it tomorrow. When I left him, he was on his belly, well fed (he also shows his temper if his feeding is late) and dozing off. What a day and what a big surprise! Dr. Duffy wants to hold off on pulling the last two chest tubes until Gabriel is at "full feeds", as appropriate for his size. He should be at full feeds (85 ml) at 2 AM this morning, so hopefully they will be pulled tomorrow and he will get into a crib AND be able to wear clothes!! I brought up a suitcase full of clothes (with two predecessors, also born in warm weather, we have plenty) so I can't wait to try something on him. I'm guessing the 0-3 months items are NOT going to fit!! He's a big boy. Speaking of clothes, Kaci found him the perfect onesie - I'll let you see for yourself below! OK, I need to get going before it is too dark to walk back. Check out the new photos!

More Progress!

About 2AM last night, or this morning, the stitches came out and the first set of chest tubes came out. The word on the unit is that the second set of tubes is due to come out today. Poor Dr. Duffy was in surgery most of the day and into the night (hence the 2 AM removal), so I hope he found a nice quiet, dark, SECRET hole to crawl into and catch a few winks. I hear that July is when all of the new interns start, so it can be a bit rough on the fellows. Later in the day yesterday, the nurses said Gabriel is tentatively set to come off the ventilator Thursday!! His rate this morning is down to 15, which can't really get any lower. Yesterday when I watched him breathing, you could tell it was harder work for him, but he was still resting really well. It's so strange because I expected him to look like he was working even harder to breathe this morning, but he doesn't. He looks more peaceful and he has even less support. Hopefully that means those extra muscles are picking up the slack of the diaphragm and we won't have to worry about reintubation, once he comes off of the vent. Don't know, just my own thoughts. I guess they did wean his sedation a bit yesterday, I just didn't notice! He is now down to 30 mics of morphine (that is the same) and 30 of the versed (that is the one that dropped). He had to have a little extra pain medicine when the stitches and tubes were removed (duh!) but other than that, he hasn't needed anything. He's tough! Neonatology hasn't rounded yet, so I want to get back there, so I don't miss them. Thanks for the comments and the cards (can't say that enough), they really perk up the spirits - although honestly, Gabriel's progress is the best pick-me-up anyone could ask for! Josh and the boys will be in Evansville for the fourth and Gabe and I will be here, kind of a bummer but the consolation is knowing we will all celebrate together next year (awwww...how's that for sappy?)

Big Day!

We talked to Dr. Rouse last night, and Dr. Duffy this morning. The stitches are coming out today and at the same time, they are going to pull one chest tube from each side!! Dr. Rouse mentioned that if Gabriel continued to do well with his feeds and no more drainage started from the remaining chest tubes, they would be pulled in a day or so. Very exciting!!

The vent settings are very low now. Let's see if I can remember: Rate at 20 bpm, PIP at 17, PEEP at 6, breath support at 7. Surgery and Neonatology are supposed to be talking about extubation, but we haven't heard anything yet. I saw Dr. Denne heading back to the NICU, so Neo must be getting ready to round. Maybe we'll get news about that this morning? One can only hope! I may have mentioned this already, stop me if you've heard this ;), some DH babies get tired after a day or two of being extubated and have to be reintubated. Actually I did say that already - and I think I referred to the "auxiliary" muscles when I should have said ancillary. Oh well. That's it for now! Oh yeah, he's up to 45 ml of breast milk, actually it might be 50ml. He's moving so fast now I can hardly keep up!

Gabriel is continuing to make steady progress. This morning Josh was there when the Neos were rounding and they said Gabriel was making great progress with the ventilator weaning. They told Josh they would talk to surgery about when Gabriel could come off of the ventilator. Don't know when that will happen, but it is the first time it has been mentioned in the same sentence as "soon"! We have been warned that babies recovering from a DH (diaphragmatic hernia) often tire out after a few days being off the ventilator and have to be intubated again. I guess it can take a while for the auxiliary muscles to help compensate for the diaphragm.

He is now up to 30 ml of milk, with orders to increase by 5ml every six hours now! Hopefully the chest tubes will come out in a few days, then he can move into a crib and wear baby clothes. Apparently last night Gabriel had to have a little extra pain relief, so they are holding on the narcotics wean for now. Hopefully that will pick up again soon. We were warned that could take a while.