Wednesday, May 29, 2013
MRI Tomorrow
I know, I know. Here I go again not posting for a really long time and then coming on here asking for prayers. It's just that I know these prayers work, and Ryan could really use them for tomorrow. It's going to be a pretty big day, with some pretty big news to follow. Tomorrow we are heading to CHOC for an MRI of his ears/brain. This will determine whether or not he will be a candidate for the cochlear implant, which will give him the miracle of hearing. I know that no matter the outcome, he will be fine and we will be fine. We will just push forward with learning sign language and tapping in to his other senses to help him communicate and thrive in a hearing world. But any hearing at all through and aid or an implant would be such a blessing in our lives. It would mean so much for his learning and development. So lots of prayers tonight for a successful MRI tomorrow (we're getting a special cardiac anesthesiologist to monitor his pulmonary hypertension while he's sedated) and then continued prayers for some good news for his hearing would be so greatly appreciated. As soon as I get the results from the doctor, I'll be sure to update here.
Tuesday, May 14, 2013
Hope I Didn't Miss Anything!
Wow. This is definitely the longest I've gone without updating. We've had a few ups and downs since my last post, but nothing we couldn't handle. I guess after the insane ups and downs of the NICU, nothing really quite compares. The rest of this just seems like a cake walk! I'll try to cover all areas of Ryan in this post. I'd love to do a separate post on our March for Babies walk because I'm so thankful for all of the love and support you guys shared with us that day, and I have pictures I'd like to share. Hopefully I can get that done later this week. So, here's what's been going on with Ry.
The last post was about his abscess, and I'm pleased to tell you the the antibiotics did the trick! There's not even a lump there anymore, so that was fantastic news. Now we just have to keep praying that it doesn't happen again because once a flare-up like that occurs, it makes a "path" in that area that is easy for bacteria to creep back down into and cause another infection. So let's pray that as he continues to grow in strength and size, his little bum muscles will fill in that area and heal it completely.
In other news, this past weekend was especially tricky because Dani came down with a nasty fever and bumpy/swollen sore throat on Friday. We had to miss her Mother's Day tea party at school (but her awesome teachers are going to set up all up for us again tomorrow so we and another family who had to miss can attend!! Love them!). We also had to miss the Taylor's Wish 5K we signed up for on Saturday morning to support the Pulmonary Hypertension Association. I was pretty bummed to miss it, but we will definitely sign up again next year. We were really thankful that she seemed to get better just in time for Mother's Day, and our masks and separation of duties (I was handling germy Dani while Dave was handling lighter-weight Ryan so that we wouldn't cross-contaminate and he wouldn't have to lift the heavier child) seemed to have done the trick to keep Ryan from getting sick, too. Unfortunately, yesterday while we were at work, he started to get feverish and definitely had a sore throat because he would gag and throw up just from trying to drink a few drops of water. We made the necessary calls, gave fever meds, stopped oral feeds, etc and praise GOD he is doing much better today after only 24 hours. His sats dropped a little while he was feeling his worst. Just enough to make us turn his oxygen up to one liter, but not enough for the doctors to make us bring him in. So thankful our little fighter is getting stronger every day. You know your views are skewed when you're actually slightly relieved to see your kid get "regular" sick and feel better after only a day without a trip to the hospital. I'm not sure if that makes sense, but I know what I mean, and I'm sure other preemie moms get it, too. ;)
So besides those current events, here's an overall snapshot of how Ryan's doing:
Lungs/Heart: His sats have been great lately, and for the past month or so we've been keeping him on .5 liter other than when he was acting sick the past few days. We haven't had a big appointment with pulmonary or cardiology since end of March/early April, and his next appointment isn't until the pulmonary hypertension clinic at the end of June. So last week I called pulmonary and talked to Dr. Y who knows him really well, just to see if we should set something up sooner to make sure he's on all the right meds, etc. I was starting to feel uncomfortable with waiting a whole 3 months between appointments. Plus, some of his symptoms/behaviors are changing. For example, he used to wake up in the mornings really mucous-y and cough-y. Now he doesn't. He has a dry cough that comes and goes throughout the day randomly, and he wheezes more than he used to. So, I set an appointment for later this month, just to make sure we're doing everything right.
Eyes/Ears: Eyes are still the same. Still wearing the contacts every day, and the new ones she ordered us fit MUCH better. He still manages to rub his eyes and get them to pop out every once in a while, but not nearly as much as before, which is a relief. We had an appointment with Dr. Sami a few weeks ago, and he didn't have a whole lot to say. He does follow objects with his eyes, but the biggest concern right now is that he doesn't really look at people's faces. We're working on it, and we're really lucky to have Julie from the Braille Institute coming every other week to work on visual stimulation.
Ryan's hearing (or lack thereof) has been my latest hurdle to overcome. I've been reading up a lot of deafness and deaf culture (huge thanks to Kari F. for all the great reading material!), researching about American Sign Language (ASL), cochlear implants, etc. and this is something that is really causing me some anxiety. It's strange because I don't think it has really sunk in how real and permanent this is. I think because we spent 7 months in the NICU worrying about all the other aspects of his health, and when this diagnosis came it was such an afterthought. A shock for sure, but just not the main concern. Now that his overall health is stabilizing and improving, the hearing loss is becoming more and more real, and more and more concerning. The biggest concern for me is his inability to communicate. I really want him to have every possible resource available to him to get him to be able to express himself in whatever way possible. So, Dave and I have started to learn ASL (through a website I found on pinterest of all places), and we are slowly starting to introduce some of the signs to Ryan. The problem, of course, is that we don't know how much of them he can actually see. So, I've been doing some more digging to find out what resources are available to him for his hearing loss, as well as to us for learning sign language. The family coordinators at the Regional Center sent me a large packet of information. Unfortunately, most of the free services we did not qualify for. But, while I was speaking to one of the employees at one of the places they referred me to, I was able to get our local school district's phone number because they have someone who works with deaf children, specifically young children aged 0-3. I was so excited when I actually got to speak to the head of that department in our district as she told me all about this amazing teacher and how she would come to our house and work with us on learning ASL. She also has connections with so many other families in our area with deaf children and they get together for picnics and other family events. So, the ball is rolling on that and hopefully I'll hear back this week on when we can get started. But wait, there's more! One of the family coordinators from the Regional Center who actually first took in our case when Ryan was first discharged called me today. She knew about Ryan's case and had just attended a workshop with a speaker who was talking about his program working with deaf/blind children, so she called him today and then gave me his info so I could call and see if he could help Ryan out. He is the program coordinator and lives up in San Francisco, but we spent some time on the phone this afternoon and he is going to have one or two of the other 5 members of this program come out and meet with us to work on ways to help Ryan understand what is going on in the world around him. I will go into more detail on this program after I meet with them. The only downside is that this is a program funded by a federal grant, and the grant money is only guaranteed through Sept. 30th. So he told me up front that they are fully functioning until then, but they can promise anything after that date since things aren't really looking good for them to continue to receive this funding.
Still regarding his hearing, I called the ENT back to reschedule his MRI last week. Our plan had been to wait until after his echo in June because his cardiologist wanted to see if his PPHN would improve, but she did say that if we felt it was important to do it sooner that she would clear us as long as he was sedated by a cardiac anesthesiologist. So, I made the call to get that set up because I think his hearing/language development is at a critical stage and I don't want to put it off any longer if we don't have to, especially since his lung health seems to be doing better these days. So the MRI is set for May 30th at 1:30. Lots of prayers for the best news possible for whatever they need to see in there would be much appreciated!
GI: Ryan's reflux has been SO much better ever since we stopped the Eryped. He hardly ever throws up anymore unless he's eating solids and gets his gag reflex triggered. He's been really working at eating more and more solids each day, and he's trying a wide variety of flavors and textures. His therapists are all amazed each week about how much he seems to improve with that. He definitely has his daddy's appetite!
Physical Therapy: We're still working on trying to get Ryan NOT to arch his back so much. You have never seen a kid arch his back as much as our boy. We really like our therapist, and she works with him twice a week, so it's nice to see him getting more and more comfortable with her and getting his exercise in without any complaint! He's rolling and scooting like crazy and loves to push his butt up in the air while he's lying on his back and get into the bridge position (just one more way for him to arch!). He's grabbing his feet and pulling them to his chest more and more. Not the biggest fan of tummy time still, but he doesn't fuss, he just flips himself right back onto his back in protest.
Well, I think I covered everything just in time for my bedtime. If I missed anything, please feel free to leave a comment and ask me (or send me a message or whatever). I really don't mind talking about any of this, it's just been getting harder for me time-wise to get on here and update. But then I feel like I forget half of what I wanted to share! Thank you all for the constant love and support, especially all the sweet texts/messages you guys sent me on Mother's Day. Best Mother's Day yet having both my kids at home with me!
The last post was about his abscess, and I'm pleased to tell you the the antibiotics did the trick! There's not even a lump there anymore, so that was fantastic news. Now we just have to keep praying that it doesn't happen again because once a flare-up like that occurs, it makes a "path" in that area that is easy for bacteria to creep back down into and cause another infection. So let's pray that as he continues to grow in strength and size, his little bum muscles will fill in that area and heal it completely.
In other news, this past weekend was especially tricky because Dani came down with a nasty fever and bumpy/swollen sore throat on Friday. We had to miss her Mother's Day tea party at school (but her awesome teachers are going to set up all up for us again tomorrow so we and another family who had to miss can attend!! Love them!). We also had to miss the Taylor's Wish 5K we signed up for on Saturday morning to support the Pulmonary Hypertension Association. I was pretty bummed to miss it, but we will definitely sign up again next year. We were really thankful that she seemed to get better just in time for Mother's Day, and our masks and separation of duties (I was handling germy Dani while Dave was handling lighter-weight Ryan so that we wouldn't cross-contaminate and he wouldn't have to lift the heavier child) seemed to have done the trick to keep Ryan from getting sick, too. Unfortunately, yesterday while we were at work, he started to get feverish and definitely had a sore throat because he would gag and throw up just from trying to drink a few drops of water. We made the necessary calls, gave fever meds, stopped oral feeds, etc and praise GOD he is doing much better today after only 24 hours. His sats dropped a little while he was feeling his worst. Just enough to make us turn his oxygen up to one liter, but not enough for the doctors to make us bring him in. So thankful our little fighter is getting stronger every day. You know your views are skewed when you're actually slightly relieved to see your kid get "regular" sick and feel better after only a day without a trip to the hospital. I'm not sure if that makes sense, but I know what I mean, and I'm sure other preemie moms get it, too. ;)
So besides those current events, here's an overall snapshot of how Ryan's doing:
Lungs/Heart: His sats have been great lately, and for the past month or so we've been keeping him on .5 liter other than when he was acting sick the past few days. We haven't had a big appointment with pulmonary or cardiology since end of March/early April, and his next appointment isn't until the pulmonary hypertension clinic at the end of June. So last week I called pulmonary and talked to Dr. Y who knows him really well, just to see if we should set something up sooner to make sure he's on all the right meds, etc. I was starting to feel uncomfortable with waiting a whole 3 months between appointments. Plus, some of his symptoms/behaviors are changing. For example, he used to wake up in the mornings really mucous-y and cough-y. Now he doesn't. He has a dry cough that comes and goes throughout the day randomly, and he wheezes more than he used to. So, I set an appointment for later this month, just to make sure we're doing everything right.
Eyes/Ears: Eyes are still the same. Still wearing the contacts every day, and the new ones she ordered us fit MUCH better. He still manages to rub his eyes and get them to pop out every once in a while, but not nearly as much as before, which is a relief. We had an appointment with Dr. Sami a few weeks ago, and he didn't have a whole lot to say. He does follow objects with his eyes, but the biggest concern right now is that he doesn't really look at people's faces. We're working on it, and we're really lucky to have Julie from the Braille Institute coming every other week to work on visual stimulation.
Ryan's hearing (or lack thereof) has been my latest hurdle to overcome. I've been reading up a lot of deafness and deaf culture (huge thanks to Kari F. for all the great reading material!), researching about American Sign Language (ASL), cochlear implants, etc. and this is something that is really causing me some anxiety. It's strange because I don't think it has really sunk in how real and permanent this is. I think because we spent 7 months in the NICU worrying about all the other aspects of his health, and when this diagnosis came it was such an afterthought. A shock for sure, but just not the main concern. Now that his overall health is stabilizing and improving, the hearing loss is becoming more and more real, and more and more concerning. The biggest concern for me is his inability to communicate. I really want him to have every possible resource available to him to get him to be able to express himself in whatever way possible. So, Dave and I have started to learn ASL (through a website I found on pinterest of all places), and we are slowly starting to introduce some of the signs to Ryan. The problem, of course, is that we don't know how much of them he can actually see. So, I've been doing some more digging to find out what resources are available to him for his hearing loss, as well as to us for learning sign language. The family coordinators at the Regional Center sent me a large packet of information. Unfortunately, most of the free services we did not qualify for. But, while I was speaking to one of the employees at one of the places they referred me to, I was able to get our local school district's phone number because they have someone who works with deaf children, specifically young children aged 0-3. I was so excited when I actually got to speak to the head of that department in our district as she told me all about this amazing teacher and how she would come to our house and work with us on learning ASL. She also has connections with so many other families in our area with deaf children and they get together for picnics and other family events. So, the ball is rolling on that and hopefully I'll hear back this week on when we can get started. But wait, there's more! One of the family coordinators from the Regional Center who actually first took in our case when Ryan was first discharged called me today. She knew about Ryan's case and had just attended a workshop with a speaker who was talking about his program working with deaf/blind children, so she called him today and then gave me his info so I could call and see if he could help Ryan out. He is the program coordinator and lives up in San Francisco, but we spent some time on the phone this afternoon and he is going to have one or two of the other 5 members of this program come out and meet with us to work on ways to help Ryan understand what is going on in the world around him. I will go into more detail on this program after I meet with them. The only downside is that this is a program funded by a federal grant, and the grant money is only guaranteed through Sept. 30th. So he told me up front that they are fully functioning until then, but they can promise anything after that date since things aren't really looking good for them to continue to receive this funding.
Still regarding his hearing, I called the ENT back to reschedule his MRI last week. Our plan had been to wait until after his echo in June because his cardiologist wanted to see if his PPHN would improve, but she did say that if we felt it was important to do it sooner that she would clear us as long as he was sedated by a cardiac anesthesiologist. So, I made the call to get that set up because I think his hearing/language development is at a critical stage and I don't want to put it off any longer if we don't have to, especially since his lung health seems to be doing better these days. So the MRI is set for May 30th at 1:30. Lots of prayers for the best news possible for whatever they need to see in there would be much appreciated!
GI: Ryan's reflux has been SO much better ever since we stopped the Eryped. He hardly ever throws up anymore unless he's eating solids and gets his gag reflex triggered. He's been really working at eating more and more solids each day, and he's trying a wide variety of flavors and textures. His therapists are all amazed each week about how much he seems to improve with that. He definitely has his daddy's appetite!
Physical Therapy: We're still working on trying to get Ryan NOT to arch his back so much. You have never seen a kid arch his back as much as our boy. We really like our therapist, and she works with him twice a week, so it's nice to see him getting more and more comfortable with her and getting his exercise in without any complaint! He's rolling and scooting like crazy and loves to push his butt up in the air while he's lying on his back and get into the bridge position (just one more way for him to arch!). He's grabbing his feet and pulling them to his chest more and more. Not the biggest fan of tummy time still, but he doesn't fuss, he just flips himself right back onto his back in protest.
Well, I think I covered everything just in time for my bedtime. If I missed anything, please feel free to leave a comment and ask me (or send me a message or whatever). I really don't mind talking about any of this, it's just been getting harder for me time-wise to get on here and update. But then I feel like I forget half of what I wanted to share! Thank you all for the constant love and support, especially all the sweet texts/messages you guys sent me on Mother's Day. Best Mother's Day yet having both my kids at home with me!
Thursday, April 25, 2013
Pediatric Surgeon Consult
We met with Dr. Lam this morning, and our prayers have been answered! He was very excited to see Ryan because I reminded him that he placed the penrose drain in his abdomen when he was only 8 days old and only about 1 pound, and he remembered! He even asked if I was the one who was friends with Melisa (Melisa, if you're reading this...did you happen to talk to him yesterday? I was so impressed he remembered that!). He was really impressed with how big Ryan is now, and he stayed and talked with us an extra long time and shared some really sad and inspiring preemie stories that reminded us just how lucky we are to have our little guy with us today. We are so blessed that now Ryan is one of his inspiring stories that he can share with other preemie parents.
So, here's the best news. Dr. Lam doesn't want to operate on the abscess! He said it's not "ripe" enough yet. :) Basically, it's still small enough and it's so hard and deep that we are just going to continue giving the antibiotic and hope that it "ripens" and eventually comes to the surface and drains on its own. We are going to give him sitz baths every time he has a bowel movement to encourage it to move to the surface and pop. I asked if we needed to worry about sepsis or anything like that and he said absolutely not. Ryan's abscess is really small and he's on antibiotics, so he should be fine. I also asked if he knew what might have caused this, and he said sometimes if kids get constipated and strain too hard they can cause a little tear in there and then it can get stool inside it and become infected. A few weeks ago when Ryan started taking a bit more of his solids, his BM patterns changed and he was waiting 3-4 days to go. It wasn't hard like constipation, but it was definitely spaced out more and he was straining a lot more when he finally did go. We are going to continue adding pears and now prunes to his diet to help keep things more regular, and we'll just monitor the abscess and go back in a few weeks if it hasn't drained on it's own or gotten better. It sounds like we caught Ryan's really early, so hopefully the antibiotics will help.
The doctor did warn us that once a baby develops this, there is a chance of recurrence in the same spot. If that happens, then he might need a quick and easy 5 minute surgery to go in and remove the lining of the tear so that it will seal back up. He drew a lovely picture and explained it much better than I ever could, but we'll just keep praying that this one heals up nicely and never comes back so I don't have to go into more detail. Thank you all so much for your thoughts, prayers, and support. This whole ordeal couldn't have turned out any better! Well, I guess it would've been better if it never happened, lol, but you know what I mean. :)
So, here's the best news. Dr. Lam doesn't want to operate on the abscess! He said it's not "ripe" enough yet. :) Basically, it's still small enough and it's so hard and deep that we are just going to continue giving the antibiotic and hope that it "ripens" and eventually comes to the surface and drains on its own. We are going to give him sitz baths every time he has a bowel movement to encourage it to move to the surface and pop. I asked if we needed to worry about sepsis or anything like that and he said absolutely not. Ryan's abscess is really small and he's on antibiotics, so he should be fine. I also asked if he knew what might have caused this, and he said sometimes if kids get constipated and strain too hard they can cause a little tear in there and then it can get stool inside it and become infected. A few weeks ago when Ryan started taking a bit more of his solids, his BM patterns changed and he was waiting 3-4 days to go. It wasn't hard like constipation, but it was definitely spaced out more and he was straining a lot more when he finally did go. We are going to continue adding pears and now prunes to his diet to help keep things more regular, and we'll just monitor the abscess and go back in a few weeks if it hasn't drained on it's own or gotten better. It sounds like we caught Ryan's really early, so hopefully the antibiotics will help.
The doctor did warn us that once a baby develops this, there is a chance of recurrence in the same spot. If that happens, then he might need a quick and easy 5 minute surgery to go in and remove the lining of the tear so that it will seal back up. He drew a lovely picture and explained it much better than I ever could, but we'll just keep praying that this one heals up nicely and never comes back so I don't have to go into more detail. Thank you all so much for your thoughts, prayers, and support. This whole ordeal couldn't have turned out any better! Well, I guess it would've been better if it never happened, lol, but you know what I mean. :)
Wednesday, April 24, 2013
Ultrasound Update
Just wanted to post a quick update for those who are checking in on Ryan. We had the ultrasound on his abscess this afternoon, and the doctor's office called back to let us know that is, in fact, an abscess. So first thing tomorrow morning we will meet with a pediatric surgeon to find out more about what we need to do to take care of it.
Here's all the good news, and proof to me that all our prayers are being heard:
1. The ultrasound experience was totally seamless AND Ryan and I got to visit with one of his primary NICU nurses while we were there :)
2. When I called the number the pediatrician gave me for a particular surgeon, another pediatric surgeon's office answered and explained that doctor didn't work there, but they had some wonderful pediatric surgeons available. So, I got their names and did a little research, and it turned out the one surgeon in that office who would be able to see Ryan first thing in the morning is the SAME surgeon who did Ryan's penrose drain placement when he had a bowel perforation when he was only 8 days old in the NICU. We really liked him and now I'm so excited they gave me the wrong phone number!
3. Ryan pooped tonight for the first time in 5 days. You're welcome for that one.
All in all, we're just thankful that Ryan is handling this like a champ (as always). They gave us things to look for as far as infection, and he hasn't had any of the typical symptoms. Other than a painful looking hard, red lump on his bottom, he's been his regular happy self!
I am a bit nervous about having to sedate him, but I know this surgeon has lots of NICU experience and will understand the risks involved and make sure that he's closely monitored if he does end up needing sedation. Oh, and his eye doctor knows this surgeon well and said if he does sedate him to give him a call because he'll come over and check the pressures in his eyes since it's something that *should* be done, but he couldn't justify sedating a kid like Ryan for something like that on its own. So that's more good news! You all know how much I love to get as much done as possible if they have to sedate him. I'm actually planning on bringing the ENT's MRI order along with me tomorrow to see if they can just knock that all out in one sitting if they do end up sedating him. Then we can get the ball rolling on his cochlear implants. :)
Thanks for the continued love and prayers. Keep them coming as we get through this little bump in the road!
Here's all the good news, and proof to me that all our prayers are being heard:
1. The ultrasound experience was totally seamless AND Ryan and I got to visit with one of his primary NICU nurses while we were there :)
2. When I called the number the pediatrician gave me for a particular surgeon, another pediatric surgeon's office answered and explained that doctor didn't work there, but they had some wonderful pediatric surgeons available. So, I got their names and did a little research, and it turned out the one surgeon in that office who would be able to see Ryan first thing in the morning is the SAME surgeon who did Ryan's penrose drain placement when he had a bowel perforation when he was only 8 days old in the NICU. We really liked him and now I'm so excited they gave me the wrong phone number!
3. Ryan pooped tonight for the first time in 5 days. You're welcome for that one.
All in all, we're just thankful that Ryan is handling this like a champ (as always). They gave us things to look for as far as infection, and he hasn't had any of the typical symptoms. Other than a painful looking hard, red lump on his bottom, he's been his regular happy self!
I am a bit nervous about having to sedate him, but I know this surgeon has lots of NICU experience and will understand the risks involved and make sure that he's closely monitored if he does end up needing sedation. Oh, and his eye doctor knows this surgeon well and said if he does sedate him to give him a call because he'll come over and check the pressures in his eyes since it's something that *should* be done, but he couldn't justify sedating a kid like Ryan for something like that on its own. So that's more good news! You all know how much I love to get as much done as possible if they have to sedate him. I'm actually planning on bringing the ENT's MRI order along with me tomorrow to see if they can just knock that all out in one sitting if they do end up sedating him. Then we can get the ball rolling on his cochlear implants. :)
Thanks for the continued love and prayers. Keep them coming as we get through this little bump in the road!
Tuesday, April 23, 2013
Little Guy Needs Some Extra Prayers...
So, I know I'm not the best about updating when things are positive and
going well. I need to be better about that. The honest truth is that
when things are going well with Ryan, we take full advantage of it and I
typically don't have TIME to post! So, just so you know, with this
blog, no news is almost always good news. Since both kids are in bed
and Dave is out doing something "manly" (he's on his second tool errand
for the evening, lol). I'll try to update as much as I can tonight, and
I'll start with all the good news.
Ryan's definitely growing big and getting stronger. As soon as we took him off the eryped, it was like a switch turned off and he finally stopped throwing up. As in, he hasn't thrown up in all in over a week now. As in, he was throwing up regularly at least once or twice a day...and it was usually a pretty big puke. Now, nothing. It's the craziest thing, but we're totally excited about it. He is still on prevacid for the reflux, but we'll ask if we can start weaning off it at our next GI appointment.
He is loving his bouncer and loves putting weight on his legs. He's no where near supporting his weight yet, but if we hold him or if he's in the bouncer, he will just go to town pushing himself up and down. He's doing pretty well with his tummy time, too. Getting a little better about holding his head up and looking around. One of his new PTs is a bit concerned that he doesn't really put any weight on his arms, so that's going to be one of our goals for PT. He still arches his back quite a bit, but he's getting better about getting picked up and held without squirming and arching the entire time. Now I can pick him up and hold him with some support to the back of his head and he'll just hang out and look around. Every little improvement is a big milestone around here!
His feeding is improving a lot, too. The GI doctor recommended making meals a social event for him, so we've been putting him in his high chair with us at dinner. He used to be getting his feeding pump feeds at that time, so he'd be down low in his seat while we ate. Now he sits with us and I give him a few options of things he can eat along with us. He's actually started devouring his mum mum crackers, which is HUGE! The other night he ate one whole mum mum, 2 yogurt melts, and like 4 bites of pureed baked pears. It may not sound like much, but for him it was a feast! And pair that with the fact that he's not gagging/throwing up, and we have conquered some huge feats around here! Hopefully, as we continue to work with the feeding therapists (plus we have myself, my mom, and the home nurse giving him tastes/meals of solids) we will slowly increase his caloric intake with the solids so that these meals will be considered "nutritive" and we can start talking about taking out the g-tube. I think that's still a pretty far stretch from where we are now, but we are definitely moving the right direction!
Here's where we need some extra prayers for Ryan. He has developed what appears to be an abscess on his bottom. The pediatrician looked at it today and feels like it may need to be lanced by a pediatric surgeon. She started him on an antibiotic tonight, and I am taking him in tomorrow afternoon (squeezed in between physical therapy, feeding therapy, a braille institute visit and an ophthalmologist appointment...YIKES!) for an ultrasound at CHOC so they can see what's causing the lump/redness. Let's pray that this turns out to be nothing and clears up on it's own so he doesn't have to get it lanced. I can't even imagine how painful that must be, and this poor boy deserves a break!
Last bit of fun news (so I can end with something positive), since flu season is over we are cautiously starting to bring Ryan out into the real world...FINALLY! He's been having so much fun meeting all of his friends who have been praying for him from afar as we waiting for the worst of the flu germs to pass. He got to participate in his first "Great Cloth Diaper Change" event, taking over for Dani who served her time the past 2 years. ;) We all got to go with Daddy to watch a UFC fight at the B family's house. He had his first trip to Disneyland last weekend (even though he was only there about 30 minutes and he was only out of the ergo for about 10 of that, and we actually only went into California Adventure, LOL!) and he got to see his friends, Courtney and Angelo, again plus meet his long distance buddies, Emma and Pat! Then we had brunch with his Alpha Phi aunties. :) He was such a good boy and didn't even bat an eye at all the changes in scenery! All these outings are perfect practice for his big March for Babies walk this weekend. Speaking of which, we'd like to give a HUGE thank you to all of you who have donated to Ryan's team. We truly appreciate it and are thankful that Ryan can help other babies born too soon in whatever way possible.
Ryan's definitely growing big and getting stronger. As soon as we took him off the eryped, it was like a switch turned off and he finally stopped throwing up. As in, he hasn't thrown up in all in over a week now. As in, he was throwing up regularly at least once or twice a day...and it was usually a pretty big puke. Now, nothing. It's the craziest thing, but we're totally excited about it. He is still on prevacid for the reflux, but we'll ask if we can start weaning off it at our next GI appointment.
He is loving his bouncer and loves putting weight on his legs. He's no where near supporting his weight yet, but if we hold him or if he's in the bouncer, he will just go to town pushing himself up and down. He's doing pretty well with his tummy time, too. Getting a little better about holding his head up and looking around. One of his new PTs is a bit concerned that he doesn't really put any weight on his arms, so that's going to be one of our goals for PT. He still arches his back quite a bit, but he's getting better about getting picked up and held without squirming and arching the entire time. Now I can pick him up and hold him with some support to the back of his head and he'll just hang out and look around. Every little improvement is a big milestone around here!
His feeding is improving a lot, too. The GI doctor recommended making meals a social event for him, so we've been putting him in his high chair with us at dinner. He used to be getting his feeding pump feeds at that time, so he'd be down low in his seat while we ate. Now he sits with us and I give him a few options of things he can eat along with us. He's actually started devouring his mum mum crackers, which is HUGE! The other night he ate one whole mum mum, 2 yogurt melts, and like 4 bites of pureed baked pears. It may not sound like much, but for him it was a feast! And pair that with the fact that he's not gagging/throwing up, and we have conquered some huge feats around here! Hopefully, as we continue to work with the feeding therapists (plus we have myself, my mom, and the home nurse giving him tastes/meals of solids) we will slowly increase his caloric intake with the solids so that these meals will be considered "nutritive" and we can start talking about taking out the g-tube. I think that's still a pretty far stretch from where we are now, but we are definitely moving the right direction!
Here's where we need some extra prayers for Ryan. He has developed what appears to be an abscess on his bottom. The pediatrician looked at it today and feels like it may need to be lanced by a pediatric surgeon. She started him on an antibiotic tonight, and I am taking him in tomorrow afternoon (squeezed in between physical therapy, feeding therapy, a braille institute visit and an ophthalmologist appointment...YIKES!) for an ultrasound at CHOC so they can see what's causing the lump/redness. Let's pray that this turns out to be nothing and clears up on it's own so he doesn't have to get it lanced. I can't even imagine how painful that must be, and this poor boy deserves a break!
Last bit of fun news (so I can end with something positive), since flu season is over we are cautiously starting to bring Ryan out into the real world...FINALLY! He's been having so much fun meeting all of his friends who have been praying for him from afar as we waiting for the worst of the flu germs to pass. He got to participate in his first "Great Cloth Diaper Change" event, taking over for Dani who served her time the past 2 years. ;) We all got to go with Daddy to watch a UFC fight at the B family's house. He had his first trip to Disneyland last weekend (even though he was only there about 30 minutes and he was only out of the ergo for about 10 of that, and we actually only went into California Adventure, LOL!) and he got to see his friends, Courtney and Angelo, again plus meet his long distance buddies, Emma and Pat! Then we had brunch with his Alpha Phi aunties. :) He was such a good boy and didn't even bat an eye at all the changes in scenery! All these outings are perfect practice for his big March for Babies walk this weekend. Speaking of which, we'd like to give a HUGE thank you to all of you who have donated to Ryan's team. We truly appreciate it and are thankful that Ryan can help other babies born too soon in whatever way possible.
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The Great Cloth Diaper Change at Rosie Posie Baby
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Breaking world records is tiring work!
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Hanging out watching the fight with the guys (and girls!)
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First trip to California Adventure!
Monday, April 15, 2013
Discharge and Follow Up
Sorry I haven't updated other than on Facebook to let everyone know Ryan got discharged on Thursday morning! It was such a silly ordeal, I don't even want to get into all the boring details of how they weren't going to let him go until he was back to his baseline feeds and not throwing up, even though his baseline is to throw up 1-2 times a day even when he doesn't have a stomach bug. I'll just say that by the time I got there at 9am, I had already talked to the NP on the phone, and he already knew I would be paging him as soon as I got there and that we would be working on discharge paperwork. Which is exactly what happened. And lo and behold, Ryan has been great since he's been home. Yes, he has thrown up a little bit here and there, but I can tell this is extremely different from what he was doing last Saturday, and he's keeping his feeds down fine now, so there's no reason to be concerned.
In other news, he's changing and growing by leaps and bounds! Last night I watched him sleep while I was getting his last feed set up, and I made Dave come look at his face because I couldn't believe how much he is starting to look like his daddy! And then two different people made comments today that they think he looks so much like Dave. It's amazing and crazy at the same time because our little baby is turning into a little boy!
He's loving his bouncy seat lately. He still has a hard time holding his head upright, but he does it for short periods, and even when he's leaning to the side he still goes to town working those legs and bouncing like a mad man. He can really get himself going in there now. He's starting to roll onto his side more and more and when he plays on his mat he scoots himself all around in a circle to reach for his various toys. He also made a huge feeding breakthrough tonight when I gave him a mum mum cracker while we were all sitting at the table eating dinner, and he put it right into his mouth and just started gnawing all over it! Hopefully this teething will be the motivation he needs to really start loving putting food in his mouth! His first tooth started coming in on March 17th, and then we noticed the second tooth popping through a few days ago.
Since he's been home we had an eye appointment on Friday with his contact lens specialist. Dave took him to the appointment and asked if we really needed to put in the contacts at this young of an age since they just pop out and get lost constantly anyways, and we feel like he's seeing without them. She was 100% convinced that they need to be worn daily. I understand the right eye needing it since the lens in his eye has been removed and he needs the contact to help that eye focus. But I don't understand the left eye. We even took him to a local optometrist for a quick exam and second opinion and he felt like the left eye was just slightly nearsighted and probably didn't need to be corrected yet. But our ophthalmologist is still insisting he should wear both. Well. God has made the decision for us because the very next day we put both in and guess which one popped out and has never been seen again? Yup. The left one. So, there you go. Guess we won't be putting that one in anymore! At least not for a little while until we can follow up with her and maybe get a different size ordered so at least it won't pop out anymore.
We had a GI follow-up appointment today, but it wasn't with our regular GI doctor. We'll follow up with him in one month. The appointment went well. We adjusted his prevacid dose a bit and cut out the erythromycin. She changed the prevacid to a more concentrated dosage so he'll just get it once a day instead of twice. She said it would help spike into his blood better to get one higher dose than two lower doses throughout the day. I know I must sound like a skeptic when I type, but I'm not so sure the meds are even doing anything. Today was his best day yet as far as throwing up, and guess what? He didn't even have ANY prevacid because we ran out last night and when I called today to get it refilled, the new order hadn't been sent in to the pharmacy yet. So the guy said he would call me back if he hadn't heard from them by 2. But he never called me back. So now we're a whole day off it and I'm seriously tempted to go another day without and see if he continues to improve. ;)
Lastly, I'm excited to share that a new home nurse started with us today and she is AH-MAZE-ING! First day on the job and I am so completely impressed and thankful for her dedication, professionalism and that just all around good vibe she gives off. So blessed that she is going to be helping us take care of Ryan, and I know he's going to benefit from even more loving care! My mom has been so wonderful taking care of both Dani and Ryan on the days that I've been working, and it's such a relief to know she's going to have some good help again. Truly counting our blessings tonight.
In other news, he's changing and growing by leaps and bounds! Last night I watched him sleep while I was getting his last feed set up, and I made Dave come look at his face because I couldn't believe how much he is starting to look like his daddy! And then two different people made comments today that they think he looks so much like Dave. It's amazing and crazy at the same time because our little baby is turning into a little boy!
He's loving his bouncy seat lately. He still has a hard time holding his head upright, but he does it for short periods, and even when he's leaning to the side he still goes to town working those legs and bouncing like a mad man. He can really get himself going in there now. He's starting to roll onto his side more and more and when he plays on his mat he scoots himself all around in a circle to reach for his various toys. He also made a huge feeding breakthrough tonight when I gave him a mum mum cracker while we were all sitting at the table eating dinner, and he put it right into his mouth and just started gnawing all over it! Hopefully this teething will be the motivation he needs to really start loving putting food in his mouth! His first tooth started coming in on March 17th, and then we noticed the second tooth popping through a few days ago.
Since he's been home we had an eye appointment on Friday with his contact lens specialist. Dave took him to the appointment and asked if we really needed to put in the contacts at this young of an age since they just pop out and get lost constantly anyways, and we feel like he's seeing without them. She was 100% convinced that they need to be worn daily. I understand the right eye needing it since the lens in his eye has been removed and he needs the contact to help that eye focus. But I don't understand the left eye. We even took him to a local optometrist for a quick exam and second opinion and he felt like the left eye was just slightly nearsighted and probably didn't need to be corrected yet. But our ophthalmologist is still insisting he should wear both. Well. God has made the decision for us because the very next day we put both in and guess which one popped out and has never been seen again? Yup. The left one. So, there you go. Guess we won't be putting that one in anymore! At least not for a little while until we can follow up with her and maybe get a different size ordered so at least it won't pop out anymore.
We had a GI follow-up appointment today, but it wasn't with our regular GI doctor. We'll follow up with him in one month. The appointment went well. We adjusted his prevacid dose a bit and cut out the erythromycin. She changed the prevacid to a more concentrated dosage so he'll just get it once a day instead of twice. She said it would help spike into his blood better to get one higher dose than two lower doses throughout the day. I know I must sound like a skeptic when I type, but I'm not so sure the meds are even doing anything. Today was his best day yet as far as throwing up, and guess what? He didn't even have ANY prevacid because we ran out last night and when I called today to get it refilled, the new order hadn't been sent in to the pharmacy yet. So the guy said he would call me back if he hadn't heard from them by 2. But he never called me back. So now we're a whole day off it and I'm seriously tempted to go another day without and see if he continues to improve. ;)
Lastly, I'm excited to share that a new home nurse started with us today and she is AH-MAZE-ING! First day on the job and I am so completely impressed and thankful for her dedication, professionalism and that just all around good vibe she gives off. So blessed that she is going to be helping us take care of Ryan, and I know he's going to benefit from even more loving care! My mom has been so wonderful taking care of both Dani and Ryan on the days that I've been working, and it's such a relief to know she's going to have some good help again. Truly counting our blessings tonight.
Wednesday, April 10, 2013
Late Night Update.
I was holding off on updating as long as possible in the hopes that things might change, but alas, Ryan and Dave will be spending another night at CHOC. They started him back on his formula today at a continuous drip of 40mls and he did ok, but he did throw up. They know that his "normal" is to throw up 1-2 times a day even on a good day, so they weren't too concerned. Then they decided to stop the continuous feed and try him with 50mls an hour after they stopped the continuous stuff. He had a pretty big vomit right after they started that, so they stopped it and put him back on pedialyte only. They are giving him a feed of 50mls right now as I type because he's had a few hours off formula, and he's tolerating it fine, so that's good news. Hopefully he will keep that up and they can get him discharged tomorrow! I'll be heading over there in the morning to take over for the day.
On the bright side of him being stuck in the hospital, he got to see one of the GI doctors who remembered him from his NICU stay. Dr. Lebel was one of the doctors who inserted his peg (g-tube) right before discharge in October and she was so impressed with how much he's grown. She adjusted his prevacid dose for his weight, and she said we could stop giving the erythromycin since it's the type of drug that either works or doesn't and you would be able to tell if it was working. Since he still throws up pretty regularly, it's obviously not working so there's no sense in taking it. Also, she got us an appointment to see her in her office on Monday so we can reevaluate everything with his feeding schedules and meds to make sure we're optimizing everything we can to keep him from throwing up daily. Hopefully we can get to the bottom of everything with her!
Thank you for praying with us that he will come home soon. I know, as frustrating as it is to have him stuck in there, it happens for a reason. I think the reason this time is that we needed to be seen by Dr. Lebel, so I'm thankful for that opportunity. I hope it leads to greater health and healing for Ryan!
On the bright side of him being stuck in the hospital, he got to see one of the GI doctors who remembered him from his NICU stay. Dr. Lebel was one of the doctors who inserted his peg (g-tube) right before discharge in October and she was so impressed with how much he's grown. She adjusted his prevacid dose for his weight, and she said we could stop giving the erythromycin since it's the type of drug that either works or doesn't and you would be able to tell if it was working. Since he still throws up pretty regularly, it's obviously not working so there's no sense in taking it. Also, she got us an appointment to see her in her office on Monday so we can reevaluate everything with his feeding schedules and meds to make sure we're optimizing everything we can to keep him from throwing up daily. Hopefully we can get to the bottom of everything with her!
Thank you for praying with us that he will come home soon. I know, as frustrating as it is to have him stuck in there, it happens for a reason. I think the reason this time is that we needed to be seen by Dr. Lebel, so I'm thankful for that opportunity. I hope it leads to greater health and healing for Ryan!
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