Tuesday, July 2, 2013
Plagiocephaly, Torticollis, and a Helmet...Oh my!
Raise your hand if you know what the first two words of this title even mean! If anything, being a mom to twin preemies has definitely expanded my vocabulary because I sure didn't know either of these two words a year ago. So Anthony is sporting a helmet these days because he has plagiocephaly (a flat spot on his head, in laymen's terms). Aryanna also has plagiocephaly, but hers is very mild so she doesn't need a helmet. They both ended up with flat spots on the back of their heads on the right side for a variety of reasons. One reason is that because they were preemies, their heads were even softer at birth than that of a term baby and then they had to spend extended amounts of time in their isolettes in the NICU. While in the NICU they ended up looking right a lot of the time: the door was to their right, Jose and I are both right-handed so that's the side we usually did their diaper changes on, and a lot of times they were placed on their right side for digestion purposes. By the time we got home, they preferred to look right. We did a lot of positional stuff (turning their heads after they fell asleep, putting toys on their left, etc) and that did help some. Once Aryanna started sitting up by herself, her head started rounding out a lot more. It took Anthony longer to sit on his own because of his brain bleed, so that's a factor. He also has a condition called torticollis (the left side of his neck is tighter so his head tilts to the left - we also think the brain bleed is contributing factor in this with his right-sided weakness). Torticollis and plagiocephaly often go together, so with that in the mix as well Anthony's head just hasn't rounded out as much as Aryanna's and he has moderate flattening. We have a certain window of time while his head is still easily shaped for the helmet to be effective, so here we are! When we went back for his first check-up after a week, there was already improvement, so that's encouraging. He has to wear the helmet 23 hours a day for about 4 to 6 months. Not so fun, but we keep reminding ourselves that he will thank us later when the back of his head is round. Here's our cutie sporting his helmet (we're ordering a decal to put on it that says "I do my own stunts"!) Might as well embrace it, right?
Monday, June 17, 2013
Back at Blogging
Hello there! It's been awhile since I've posted anything and there are a few good reasons for that:
1. I was busy finishing out the school year.
2. Starting in May we were finally able to take the twins out in public after surviving RSV isolation!
3. Since school got out the twins have had a doctor appointment/therapy every single weekday (sometimes more than one appointment in a day!)
4. & 5. We have two very active one-year-olds on our hands! (And because there are two of them they totally count as two reasons on this list!)
So, now that it's summer be looking forward to these posts in the near future: March for Babies, Anthony and Aryanna turn 1, fun stuff the twins are up to, medical updates and of course cute pictures and videos.
In the meantime, I'll leave you with this sweet picture of Anthony and Aryanna with their friends Luke and Logan, fellow preemie twins born to our good friends Joy and BJ. We've seen them at church in passing but finally had time to hang out with them last week. So fun! We look forward to our kiddos growing up together.
1. I was busy finishing out the school year.
2. Starting in May we were finally able to take the twins out in public after surviving RSV isolation!
3. Since school got out the twins have had a doctor appointment/therapy every single weekday (sometimes more than one appointment in a day!)
4. & 5. We have two very active one-year-olds on our hands! (And because there are two of them they totally count as two reasons on this list!)
So, now that it's summer be looking forward to these posts in the near future: March for Babies, Anthony and Aryanna turn 1, fun stuff the twins are up to, medical updates and of course cute pictures and videos.
In the meantime, I'll leave you with this sweet picture of Anthony and Aryanna with their friends Luke and Logan, fellow preemie twins born to our good friends Joy and BJ. We've seen them at church in passing but finally had time to hang out with them last week. So fun! We look forward to our kiddos growing up together.
Thursday, April 25, 2013
Medical Updates
Pulmonologist
Aryanna is officially done with oxygen!!! Whoo hoo! The twins had their sleep studies about a week and a half ago and we got the call from the pulmonologist's office yesterday that she doesn't need it anymore when she sleeps. So exciting! So, you may be wondering about Anthony's sleep study...well...we're still wondering, too. Over the past couple of months any time we've checked Anthony's saturation without oxygen while he sleeps overnight, it's around 97 or 98 (the pulmonologist likes it to be above 95). So, we were pretty confident going into the sleep study that he would get to come off of oxygen. The morning after the study the sleep tech told us that she'd had to keep him on about 1/8 of a liter of oxygen most of the night and that his saturation had been around 92 before putting him on the oxygen. We were very surprised since that was such a big difference from what we usually see. We knew that being uncomfortable had to be part of it (I don't think I could sleep hooked up to all those wires either). When we got home and were ready to give Anthony a bath we noticed a bright red line running the length of his throat. That line stayed there for 5 days, so we're thinking that probably had something to do his low saturation. We think one of the cords from his chest was pulling on his throat and the poor baby couldn't breathe! When the nurse called yesterday and told us we need to keep Anthony on oxygen at night I explained all of this to her. She said she would talk to the doctor and call me back, but I never heard from her today so I guess I'll be calling again tomorrow. We're hoping he will let us do another sleep study with just oxygen and not all the extra stuff. We hate to put him through all of that again when we see him do just fine at home. We appreciate your prayers that we would be able to get all of this resolved.
Neurologist
At our appointment with our pediatrician about a month ago we decided it was probably time for Anthony to see a neurologist due to his brain bleed. Since the bleed was more severe on the left side of his brain (grade 4, which is the most severe), we have been seeing weakness on the right side of his body. He struggles a lot more to use his right hand and his head tilts to the left. We had the appointment with the neurologist yesterday and it sounds like he is really impressed with how Anthony is doing. He was really glad to hear (maybe even a little surprised) that he's never had any seizures. His right arm isn't very tight - PT and OT since early on have been key in that! He also seemed pretty confident that the bleed hadn't affected his cognition and intelligence. He interacts with us and is aware of what's going on around him. The neurologist wants to do an MRI to have a baseline for future comparison should the need ever arise and to see which areas of his brain were affected so we know what to keep an eye out for. Anthony will have the MRI in the next couple of weeks. The doctor reiterated that PT and OT will continue to be important as his brain continues to develop. He also mentioned the power of prayer, which we agreed with wholeheartedly of course! He said that he would be praying for Anthony and asked that we pray for wisdom for him and the other doctors - so cool! We also had a discussion about speaking in tongues and the King James version of the Bible, but that's a whole different topic for a blog post! We left pretty amazed with our little guy (we already were, but it's nice to hear a doctor say how impressed he is with Anthony's progress). We were also reminded once again how good God is - things could have been so much worse for Anthony, but he is truly a testimony to the power of prayer.
Craniofacial Surgeon
The last time we were at the pediatrician she also recommended that we see a craniofacial surgeon for the twins' plagiocephaly (flattening of their heads). (Side note - half the stuff I'm writing about isn't even recognized by spell check. It says pulmonologist, craniofacial, and plagiocephaly are spelled wrong - but they're not!) Anyway, preemies are prone to getting flat heads for various reasons - their skulls are softer when they're born, they're left in the same position for hours at a time in the NICU so as not to overstimulate them. If they're on a ventilator they can't move around much and in Anthony's case, the right side of his neck is weaker, so that puts pressure on certain parts of his head as well. The craniofacial surgeon will decide if they need helmets to help round out their heads or if he thinks they will round out on their own. (Don't be fooled by the name - we're not looking at surgery, just helmets!) This appointment will be in mid-May.
Feedings
Feedings have been okay. Aryanna eats pretty well most of the time and she's been gaining about a 1/2 an ounce a day. They like them to gain between 1/2 an ounce and an ounce a day so she's doing pretty well. Anthony still fights the bottle quite a bit, but likes his sippy cup and LOVES to eat baby food. He didn't gain last weigh-in so I'm anxious to see how he does tomorrow. Please continue to pray that they would eat well and gain weight.
RSV Isolation is Almost Over!
As many of you know we have stayed away from public places other than the doctors' office all winter to protect the twins from RSV. It has been a long winter, but well worth it because neither baby ended up with any serious illness - praise God! Our pulmonologist recommended keeping them out of public places through the end of April. The end of RSV isolation is just around the corner and we are so excited to get out and about as a family next week! We're also looking forward to introducing the twins to all of you!
Aryanna is officially done with oxygen!!! Whoo hoo! The twins had their sleep studies about a week and a half ago and we got the call from the pulmonologist's office yesterday that she doesn't need it anymore when she sleeps. So exciting! So, you may be wondering about Anthony's sleep study...well...we're still wondering, too. Over the past couple of months any time we've checked Anthony's saturation without oxygen while he sleeps overnight, it's around 97 or 98 (the pulmonologist likes it to be above 95). So, we were pretty confident going into the sleep study that he would get to come off of oxygen. The morning after the study the sleep tech told us that she'd had to keep him on about 1/8 of a liter of oxygen most of the night and that his saturation had been around 92 before putting him on the oxygen. We were very surprised since that was such a big difference from what we usually see. We knew that being uncomfortable had to be part of it (I don't think I could sleep hooked up to all those wires either). When we got home and were ready to give Anthony a bath we noticed a bright red line running the length of his throat. That line stayed there for 5 days, so we're thinking that probably had something to do his low saturation. We think one of the cords from his chest was pulling on his throat and the poor baby couldn't breathe! When the nurse called yesterday and told us we need to keep Anthony on oxygen at night I explained all of this to her. She said she would talk to the doctor and call me back, but I never heard from her today so I guess I'll be calling again tomorrow. We're hoping he will let us do another sleep study with just oxygen and not all the extra stuff. We hate to put him through all of that again when we see him do just fine at home. We appreciate your prayers that we would be able to get all of this resolved.
Neurologist
At our appointment with our pediatrician about a month ago we decided it was probably time for Anthony to see a neurologist due to his brain bleed. Since the bleed was more severe on the left side of his brain (grade 4, which is the most severe), we have been seeing weakness on the right side of his body. He struggles a lot more to use his right hand and his head tilts to the left. We had the appointment with the neurologist yesterday and it sounds like he is really impressed with how Anthony is doing. He was really glad to hear (maybe even a little surprised) that he's never had any seizures. His right arm isn't very tight - PT and OT since early on have been key in that! He also seemed pretty confident that the bleed hadn't affected his cognition and intelligence. He interacts with us and is aware of what's going on around him. The neurologist wants to do an MRI to have a baseline for future comparison should the need ever arise and to see which areas of his brain were affected so we know what to keep an eye out for. Anthony will have the MRI in the next couple of weeks. The doctor reiterated that PT and OT will continue to be important as his brain continues to develop. He also mentioned the power of prayer, which we agreed with wholeheartedly of course! He said that he would be praying for Anthony and asked that we pray for wisdom for him and the other doctors - so cool! We also had a discussion about speaking in tongues and the King James version of the Bible, but that's a whole different topic for a blog post! We left pretty amazed with our little guy (we already were, but it's nice to hear a doctor say how impressed he is with Anthony's progress). We were also reminded once again how good God is - things could have been so much worse for Anthony, but he is truly a testimony to the power of prayer.
Craniofacial Surgeon
The last time we were at the pediatrician she also recommended that we see a craniofacial surgeon for the twins' plagiocephaly (flattening of their heads). (Side note - half the stuff I'm writing about isn't even recognized by spell check. It says pulmonologist, craniofacial, and plagiocephaly are spelled wrong - but they're not!) Anyway, preemies are prone to getting flat heads for various reasons - their skulls are softer when they're born, they're left in the same position for hours at a time in the NICU so as not to overstimulate them. If they're on a ventilator they can't move around much and in Anthony's case, the right side of his neck is weaker, so that puts pressure on certain parts of his head as well. The craniofacial surgeon will decide if they need helmets to help round out their heads or if he thinks they will round out on their own. (Don't be fooled by the name - we're not looking at surgery, just helmets!) This appointment will be in mid-May.
Feedings
Feedings have been okay. Aryanna eats pretty well most of the time and she's been gaining about a 1/2 an ounce a day. They like them to gain between 1/2 an ounce and an ounce a day so she's doing pretty well. Anthony still fights the bottle quite a bit, but likes his sippy cup and LOVES to eat baby food. He didn't gain last weigh-in so I'm anxious to see how he does tomorrow. Please continue to pray that they would eat well and gain weight.
RSV Isolation is Almost Over!
As many of you know we have stayed away from public places other than the doctors' office all winter to protect the twins from RSV. It has been a long winter, but well worth it because neither baby ended up with any serious illness - praise God! Our pulmonologist recommended keeping them out of public places through the end of April. The end of RSV isolation is just around the corner and we are so excited to get out and about as a family next week! We're also looking forward to introducing the twins to all of you!
Saturday, April 13, 2013
March for Babies
In honor of Anthony and Aryanna, we're walking in the March of Dimes "March for Babies" on May 11th. The mission of March of Dimes is "to improve the health of babies by preventing birth defects, premature birth and infant mortality. Funds raised in March for Babies support research and programs that help moms have full-term pregnancies and babies begin healthy lives. And they will be used to bring comfort and information to families with a baby in newborn intensive care."
This is obviously a cause that is near and dear to our hearts after experiencing prematurity firsthand. We hope that funds raised through the March for Babies will lead to more research that improves the outcome for premature babies, and prevents premature birth so that others don't have to face the struggles of prematurity.
We would love to have you join us in the March for Babies in any way that you are able. You could join our team and walk with us on May 11th, or you could make a donation in honor of our preemies Anthony and Aryanna.
Below is the link to our team page where you can read our story, join our team, or make a donation. If you'd like to walk with us, the walk is May 11th at 9:30 am at the DMACC Ankeny Campus and you can sign up at this link:
Thank you for all of your love, support, and prayers for our family!
Friday, March 29, 2013
Truly a Good Friday
Good Friday, Reason #1: Christ died that we might have eternal life - thank you Jesus for making the ultimate sacrifice for us!
Good Friday, Reason #2: The twins had a weight check with our home health care nurse today. Drumroll please...Anthony gained 14 oz in the last 2.5 weeks and now weighs 17 lbs and Aryanna gained 12 oz and now weighs 15 lbs 8 oz! For months now they've either lost weight, maintained, or only gained a couple of ounces. God is good!
Good Friday, Reason #2: The twins had a weight check with our home health care nurse today. Drumroll please...Anthony gained 14 oz in the last 2.5 weeks and now weighs 17 lbs and Aryanna gained 12 oz and now weighs 15 lbs 8 oz! For months now they've either lost weight, maintained, or only gained a couple of ounces. God is good!
Tuesday, March 12, 2013
Praises
We have praises to report - whoo hoo!
Praise #1 - The twins got the stomach flu last weekend. Yeah, that's right - that has turned out to be a praise. Since recovering, they have been eating SO MUCH BETTER. It's like them getting sick hit some sort of reset button. They were on a diet of Pedialyte for days. Normally we make their formula about half Similac Sensitive for Spit Up and half Similac Neosure (a special formula for preemies). As they started recovering we started adding just the spit up formula to their bottles because we thought that would stay down a little better. And they started wanting to eat - no fussing, no arching, no refusing to eat. So we kept making their bottles with just the spit up formula and for the past several days they have eaten more than ever before!!! I called our pediatrician's office to see if it was okay to forego the Neosure and just give them the spit up formula since they're actually wanting to eat and eating so much more and she gave us the go ahead. I'm wondering if they just don't like the flavor of the Neosure. Maybe when they hit that 4 month adjusted age, sucking-is-no-longer-a-reflex-I-get-to-choose-if-I-eat-now stage they decided they didn't like that formula? (I also think it's a huge help that they're on the proper dose of reflux meds now as well). At any rate, I don't care why, we're just so glad they're eating better. God is so good! On Ash Wednesday we went to church because Jose was leading worship with the youth. One of the things we did during the service was write down something tangible we were praying for during lent. I wrote down that I was praying that Anthony and Aryanna would be completely healed of their feeding issues and I truly believe God used them getting sick to bring healing. Praise Jesus!
Praise #2 - Anthony's oral aversion is so much better that he started taking a pacifier again!
Praise #3 - Anthony has taken his last two bottles sitting up like a big boy (rather than side-lying). This is great news since he's getting so big and it will help him even more with other feeding skills.
Praise #3 - Aryanna is sitting up by herself like a champ! She loves to sit up, look around and see what's going on. She's just such a happy girl!
Praise #4 - Aryanna hasn't had one of her awful reflux pukes in days! (Again, maybe the change in formula / increased dose of reflux meds / divine intervention?)
Praise #5 - Anthony's swallow study went well today. (Had I even mentioned that he was having one? At their 9 month appointment our pediatrician was appalled that the GIs hadn't done more to help us so she ordered a swallow study for Anthony to make sure he isn't aspirating when he eats. We're going back to see her next week to follow up and come up with a plan - though we may not need one with how well they've been eating!) Anyway, he had a swallow study today and he doesn't aspirate when taking his bottle. He did aspirate a little with his sippy cup, but it was water which is thinner than formula and he coughed so he at least deals with it when it happens. The fear was that he was having silent aspiration and not showing any signs that he had aspirated - but that's not the case - thank goodness. She did stress how important PT will continue to be. He needs to be able to bear weight on his arms when on his tummy to help all the muscles in his chest, arms, neck, etc develop so that he can move to more textured foods. Right now he's just not there yet and it won't be safe for him to eat anything but pureed foods until he can. Please pray that he would continue to gain strength in this area.
Praise #1 - The twins got the stomach flu last weekend. Yeah, that's right - that has turned out to be a praise. Since recovering, they have been eating SO MUCH BETTER. It's like them getting sick hit some sort of reset button. They were on a diet of Pedialyte for days. Normally we make their formula about half Similac Sensitive for Spit Up and half Similac Neosure (a special formula for preemies). As they started recovering we started adding just the spit up formula to their bottles because we thought that would stay down a little better. And they started wanting to eat - no fussing, no arching, no refusing to eat. So we kept making their bottles with just the spit up formula and for the past several days they have eaten more than ever before!!! I called our pediatrician's office to see if it was okay to forego the Neosure and just give them the spit up formula since they're actually wanting to eat and eating so much more and she gave us the go ahead. I'm wondering if they just don't like the flavor of the Neosure. Maybe when they hit that 4 month adjusted age, sucking-is-no-longer-a-reflex-I-get-to-choose-if-I-eat-now stage they decided they didn't like that formula? (I also think it's a huge help that they're on the proper dose of reflux meds now as well). At any rate, I don't care why, we're just so glad they're eating better. God is so good! On Ash Wednesday we went to church because Jose was leading worship with the youth. One of the things we did during the service was write down something tangible we were praying for during lent. I wrote down that I was praying that Anthony and Aryanna would be completely healed of their feeding issues and I truly believe God used them getting sick to bring healing. Praise Jesus!
Praise #2 - Anthony's oral aversion is so much better that he started taking a pacifier again!
Praise #4 - Aryanna hasn't had one of her awful reflux pukes in days! (Again, maybe the change in formula / increased dose of reflux meds / divine intervention?)
Praise #5 - Anthony's swallow study went well today. (Had I even mentioned that he was having one? At their 9 month appointment our pediatrician was appalled that the GIs hadn't done more to help us so she ordered a swallow study for Anthony to make sure he isn't aspirating when he eats. We're going back to see her next week to follow up and come up with a plan - though we may not need one with how well they've been eating!) Anyway, he had a swallow study today and he doesn't aspirate when taking his bottle. He did aspirate a little with his sippy cup, but it was water which is thinner than formula and he coughed so he at least deals with it when it happens. The fear was that he was having silent aspiration and not showing any signs that he had aspirated - but that's not the case - thank goodness. She did stress how important PT will continue to be. He needs to be able to bear weight on his arms when on his tummy to help all the muscles in his chest, arms, neck, etc develop so that he can move to more textured foods. Right now he's just not there yet and it won't be safe for him to eat anything but pureed foods until he can. Please pray that he would continue to gain strength in this area.
Wednesday, February 20, 2013
8 Months/Aryanna's Upper GI Results
8 months! (Back on January 25th - better late than never, right?!)
This month Aryanna has joined Anthony in the rolling club. Anthony can go from tummy to back and from back to tummy, but so far Aryanna has just mastered tummy to back. She's oh so close to going from back to tummy though. She also sat up by herself for about 10 seconds by herself for PT yesterday! They both love to grab their feet and put their socks/feet in their mouth. (PT actually works on them putting their toes in their mouth! It helps develop their ab muscles I guess!) They've started "talking" to each other and giggling together - cutest thing ever - see the video below. And in true twin fashion, they both got their first tooth on the same day a couple of days ago.
We took them to the NICU developmental follow-up clinic at Mercy on Monday. We just love the nurse practitioner who does the clinic. She always has great suggestions for helping them with their development and she really takes the time to listen to our concerns. We spent a great deal of time taking about the twins' feedings and she actually listened to what we were telling her and agreed that eating should be a happy time - so refreshing! Once we cover all our bases physically with Aryanna's feedings she suggested a feeding clinic in Johnston for both babies. It sounds like they might have some suggestions on the oral aversion side of things. Overall they're doing really well developmentally. Jose and I have noticed that Anthony doesn't use his right hand nearly as much as his left and just has to work a lot harder to use it. He's still pretty little so it could just be that he prefers his left hand, but it could also be a result of his brain bleed. We're going to ask our pediatrician about maybe seeing a neurologist when we go to their 9 month appointment next Monday, but we also pointed it out to the nurse practitioner. She agreed that he has a harder time using his right hand and that it would be a good idea to have a neurologist on board as he continues to develop. Keep praying for that as well.
Aryanna had her upper GI yesterday. She was supposed to drink this liquid (like barium but for kiddos) while they took x-rays to make sure everything looked okay with her stomach. I was skeptical going into it because she won't even drink her formula let alone that nasty stuff. So when it came time for the test she of course wanted nothing to do with it. They decided to use an ng tube (a small feeding tube through her nose) to get the 10 mls of liquid in her tummy that they needed. I had seen them put an ng tube in while she was in the NICU, but this was a whole different experience with an 8 month old baby. It took them 3 tries with lots of crying and gagging to get it in place, but they were able to get the test done and the good news is, her stomach is doing what it should and is in the right place. The doctor who did the test was super nice and understanding. He said he knows that the GIs all say that they'll grow out of the reflux stuff by a year or so, but that's a long time to wait when your baby puts up a battle every feeding. I so appreciated his compassion for the situation we're in.
On a positive note, Aryanna's feedings have gone quite well today (we can only attribute that to all the prayers - thank you!) We also found a sippy cup today that Anthony likes! He only took about an ounce because he doesn't have it 100% figured out yet, but he pulled the cup to his mouth because he wanted more!!! He NEVER does that with the bottle. I'm really hopeful we can just get him transitioned over to the sippy cup.
Here are our little cuties at 8 + months!
Sure wish we knew what they were saying - so cute!
This month Aryanna has joined Anthony in the rolling club. Anthony can go from tummy to back and from back to tummy, but so far Aryanna has just mastered tummy to back. She's oh so close to going from back to tummy though. She also sat up by herself for about 10 seconds by herself for PT yesterday! They both love to grab their feet and put their socks/feet in their mouth. (PT actually works on them putting their toes in their mouth! It helps develop their ab muscles I guess!) They've started "talking" to each other and giggling together - cutest thing ever - see the video below. And in true twin fashion, they both got their first tooth on the same day a couple of days ago.
We took them to the NICU developmental follow-up clinic at Mercy on Monday. We just love the nurse practitioner who does the clinic. She always has great suggestions for helping them with their development and she really takes the time to listen to our concerns. We spent a great deal of time taking about the twins' feedings and she actually listened to what we were telling her and agreed that eating should be a happy time - so refreshing! Once we cover all our bases physically with Aryanna's feedings she suggested a feeding clinic in Johnston for both babies. It sounds like they might have some suggestions on the oral aversion side of things. Overall they're doing really well developmentally. Jose and I have noticed that Anthony doesn't use his right hand nearly as much as his left and just has to work a lot harder to use it. He's still pretty little so it could just be that he prefers his left hand, but it could also be a result of his brain bleed. We're going to ask our pediatrician about maybe seeing a neurologist when we go to their 9 month appointment next Monday, but we also pointed it out to the nurse practitioner. She agreed that he has a harder time using his right hand and that it would be a good idea to have a neurologist on board as he continues to develop. Keep praying for that as well.
Aryanna had her upper GI yesterday. She was supposed to drink this liquid (like barium but for kiddos) while they took x-rays to make sure everything looked okay with her stomach. I was skeptical going into it because she won't even drink her formula let alone that nasty stuff. So when it came time for the test she of course wanted nothing to do with it. They decided to use an ng tube (a small feeding tube through her nose) to get the 10 mls of liquid in her tummy that they needed. I had seen them put an ng tube in while she was in the NICU, but this was a whole different experience with an 8 month old baby. It took them 3 tries with lots of crying and gagging to get it in place, but they were able to get the test done and the good news is, her stomach is doing what it should and is in the right place. The doctor who did the test was super nice and understanding. He said he knows that the GIs all say that they'll grow out of the reflux stuff by a year or so, but that's a long time to wait when your baby puts up a battle every feeding. I so appreciated his compassion for the situation we're in.
On a positive note, Aryanna's feedings have gone quite well today (we can only attribute that to all the prayers - thank you!) We also found a sippy cup today that Anthony likes! He only took about an ounce because he doesn't have it 100% figured out yet, but he pulled the cup to his mouth because he wanted more!!! He NEVER does that with the bottle. I'm really hopeful we can just get him transitioned over to the sippy cup.
Here are our little cuties at 8 + months!
Haha Daddy! You're so funny!
Yum - toes!
Happy girl!
I have spiky hair, just like Daddy.
Everything goes in the mouth these days.
"Don't leave me Aryanna!"
Yup, they love each other!
Sure wish we knew what they were saying - so cute!
Sunday, February 17, 2013
GI - Round 2
Things have been crazy around here and I never got around to updating the blog regarding all of Anthony's tests. Everything came back normal. The doctor didn't see anything alarming during the endoscopy, and his biopsies and pH monitor were fine as well. So no allergic condition and no reflux. We're grateful that he doesn't have any major problems, but it's frustrating to not have any answers. So we just continue to plug along and do the best we can. Sometimes he eats fine, but many times he puts up a fight when it's time to eat. He does awesome with cereal and baby food, so here's to hoping he outgrows all of this eventually.
The title of this post is GI - Round 2, because Aryanna, not wanting to be left out, has decided to join the put-up-a-fight-to-eat club too. For about the past month she has started vomiting (of the projectile, through the nose, massive amount, freak out variety) more again. It has been at least once every day or every other day. Sometimes she just spits up a little and it doesn't bother her, but when it's a big one she is totally traumatized. About a month ago she started freaking out whenever it was time to eat. We made a couple of adjustments that helped some, but the last couple of times the nurse has come (she comes every 2 weeks) she has only gained an ounce or two over a 2 week period (they're supposed to gain half an ounce a day). So we decided it was time to get her into the GI as well. We decided to go to a different doctor since we weren't thrilled with Anthony's GI's bedside manner ("His oral aversion doesn't seem that bad. He will suck my finger." "Uh, glad it's not horrible, but I'm pretty sure he can't drink any milk from your finger.") So Friday we took Aryanna to her GI and he gave us what I think will be some good solutions, but we also weren't impressed with his bedside manner. He doubled her dose of Prilosec and apparently Prilosec doesn't work with spit-up formula so we're trying just 26 calorie Neosure now. Really wish our pediatrician would have caught that one when she prescribed it. Anyway, hopefully the increased dosage will help. He also ordered an upper GI study for this Tuesday to make sure her stomach is in the right place - apparently that can cause vomiting as well. So hopefully we have some solutions for her, but we left disappointed with how we were treated again. We tell the doctors how much they eat in a day, and they say "Oh, that's decent. Not wonderful, but not awful either - no big deal." What they don't realize is the battles we go through to get them to eat at all. We tell them about the crying, batting the bottle, refusing to eat but it just feels like it's all about the numbers for them. If they're not losing weight then it's fine. The same goes for the vomiting. Aryanna's doctor told us "All babies spit up." I know that. When she spits up it's not a big deal, when she vomits up an entire feeding almost every day and totally freaks out, that's a bigger deal. He basically told us the only way he would believe that it's a lot is if we catch her vomit in a towel and weigh it (seriously?!) or if she vomits after every feeding. (Again, we explained we do a lot of things to prevent her from vomiting - holding her upright after her feedings and never laying her flat until it's been at least 3 hours since she ate. I can about guarantee she would vomit after every feeding if we didn't take those precautions). I understand that after we rule out any bigger issues there may not be a lot they can do for the reflux besides upping her dosage or trying a different med, but having our concerns heard and at least being treated like a parent that knows their child would be nice.
So, as you can tell, we're frustrated, we're tired and we hate seeing our kiddos go through this. Through this lenten season we're praying for complete healing for Anthony and Aryanna and their feeding issues - would you join us in that prayer as well?
The title of this post is GI - Round 2, because Aryanna, not wanting to be left out, has decided to join the put-up-a-fight-to-eat club too. For about the past month she has started vomiting (of the projectile, through the nose, massive amount, freak out variety) more again. It has been at least once every day or every other day. Sometimes she just spits up a little and it doesn't bother her, but when it's a big one she is totally traumatized. About a month ago she started freaking out whenever it was time to eat. We made a couple of adjustments that helped some, but the last couple of times the nurse has come (she comes every 2 weeks) she has only gained an ounce or two over a 2 week period (they're supposed to gain half an ounce a day). So we decided it was time to get her into the GI as well. We decided to go to a different doctor since we weren't thrilled with Anthony's GI's bedside manner ("His oral aversion doesn't seem that bad. He will suck my finger." "Uh, glad it's not horrible, but I'm pretty sure he can't drink any milk from your finger.") So Friday we took Aryanna to her GI and he gave us what I think will be some good solutions, but we also weren't impressed with his bedside manner. He doubled her dose of Prilosec and apparently Prilosec doesn't work with spit-up formula so we're trying just 26 calorie Neosure now. Really wish our pediatrician would have caught that one when she prescribed it. Anyway, hopefully the increased dosage will help. He also ordered an upper GI study for this Tuesday to make sure her stomach is in the right place - apparently that can cause vomiting as well. So hopefully we have some solutions for her, but we left disappointed with how we were treated again. We tell the doctors how much they eat in a day, and they say "Oh, that's decent. Not wonderful, but not awful either - no big deal." What they don't realize is the battles we go through to get them to eat at all. We tell them about the crying, batting the bottle, refusing to eat but it just feels like it's all about the numbers for them. If they're not losing weight then it's fine. The same goes for the vomiting. Aryanna's doctor told us "All babies spit up." I know that. When she spits up it's not a big deal, when she vomits up an entire feeding almost every day and totally freaks out, that's a bigger deal. He basically told us the only way he would believe that it's a lot is if we catch her vomit in a towel and weigh it (seriously?!) or if she vomits after every feeding. (Again, we explained we do a lot of things to prevent her from vomiting - holding her upright after her feedings and never laying her flat until it's been at least 3 hours since she ate. I can about guarantee she would vomit after every feeding if we didn't take those precautions). I understand that after we rule out any bigger issues there may not be a lot they can do for the reflux besides upping her dosage or trying a different med, but having our concerns heard and at least being treated like a parent that knows their child would be nice.
So, as you can tell, we're frustrated, we're tired and we hate seeing our kiddos go through this. Through this lenten season we're praying for complete healing for Anthony and Aryanna and their feeding issues - would you join us in that prayer as well?
Monday, January 28, 2013
Upper GI Endoscopy & pH Monitor
Anthony's agenda for tomorrow (Tuesday) morning: go to Methodist for an upper GI endoscopy or EGD (Esophagogastroduodenoscopy) and pH monitor. After our last appointment with the GI we decided to go ahead with these procedures to make sure there's not something else going on with Anthony's eating. During the EGD the doctor will take a look at Anthony's esophagus, stomach, and first part of the small bowel and they'll also do a biopsy. They'll also place a pH probe at this point (through his nose and down his throat like a feeding tube) and that will stay in for 24 hours to detect any reflux he might have. We'll get to bring him home an hour or so after the procedure (yay for no hospital stay!) and then we'll take him back to the doctor Wednesday morning so they can take out the pH probe. Please pray that the procedure would go well, that Anthony wouldn't experience any discomfort, and that we would get some answers to help Anthony's eating.
Sunday, January 20, 2013
3 Professionals - 3 Different Opinions
We've seen 3 different people now about Anthony's eating (or lack there of) and each had a different opinion:
GI Doctor: thinks Anthony has an oral aversion due to all the negative experiences preemies have in/around their mouths. He doesn't think reflux is a main factor because he's not spitting up much anymore.
Speech Therapist: thinks that when Anthony hit the 4 months adjusted age "it's-my-choice-to-eat-now-and-not-just-a-reflex-to-suck" stage that he just decided not to eat much because eating is hard work. She gave us a couple of things to try, but things had already been a little better by this point because of some things that we had already been trying. He's been eating more since we switched back to a level 1 nipple, started pacing him again like the good 'ole NICU days, limiting feedings to half an hour and sticking to feeding him every four hours. He likes to trick us and make us think he's hungry sooner than that when he's actually not! Oh, and we've gone back to feeding him in the middle of the night in order to get another feeding in, which has actually helped quite a bit. He's been eating an okay amount most days, but will only eat when he's drowsy (and maybe isn't as aware of the pain?).
Occupational Therapist who works on feedings from the AEA: thinks the root of the problem is indeed reflux. He exhibits all the signs of reflux, except the spitting up, which could mean he has silent reflux.
So what are we to do with all these different opinions? Trust our instincts I suppose, which are telling us reflux. That's what my gut feeling has been all along. He really does exhibit all the signs and I think he doesn't spit up much for a few reasons: 1) the reflux meds have helped some, 2) we hold him upright for about 20 minutes after we feed him, and 3) we don't lay him flat for at least a couple hours after he's eaten. So, rather than have everyone keep guessing what is wrong, I think we're going to ask about doing the pH monitor when we go back to the GI for a follow-up appointment this Wednesday. If reflux actually is the problem, that would tell us and we could try different meds. I hate to put him through that (it's a lot like a feeding tube that goes through his nose and down to his stomach and will measure how often he has reflux) but will be worth it if it helps us get to the bottom of this.
And what would a post be without some pictures of these two?!
Anthony and Aryanna have started "talking." We caught Aryanna on camera the other night, but Anthony gets camera shy so we haven't caught him yet.
GI Doctor: thinks Anthony has an oral aversion due to all the negative experiences preemies have in/around their mouths. He doesn't think reflux is a main factor because he's not spitting up much anymore.
Speech Therapist: thinks that when Anthony hit the 4 months adjusted age "it's-my-choice-to-eat-now-and-not-just-a-reflex-to-suck" stage that he just decided not to eat much because eating is hard work. She gave us a couple of things to try, but things had already been a little better by this point because of some things that we had already been trying. He's been eating more since we switched back to a level 1 nipple, started pacing him again like the good 'ole NICU days, limiting feedings to half an hour and sticking to feeding him every four hours. He likes to trick us and make us think he's hungry sooner than that when he's actually not! Oh, and we've gone back to feeding him in the middle of the night in order to get another feeding in, which has actually helped quite a bit. He's been eating an okay amount most days, but will only eat when he's drowsy (and maybe isn't as aware of the pain?).
Occupational Therapist who works on feedings from the AEA: thinks the root of the problem is indeed reflux. He exhibits all the signs of reflux, except the spitting up, which could mean he has silent reflux.
So what are we to do with all these different opinions? Trust our instincts I suppose, which are telling us reflux. That's what my gut feeling has been all along. He really does exhibit all the signs and I think he doesn't spit up much for a few reasons: 1) the reflux meds have helped some, 2) we hold him upright for about 20 minutes after we feed him, and 3) we don't lay him flat for at least a couple hours after he's eaten. So, rather than have everyone keep guessing what is wrong, I think we're going to ask about doing the pH monitor when we go back to the GI for a follow-up appointment this Wednesday. If reflux actually is the problem, that would tell us and we could try different meds. I hate to put him through that (it's a lot like a feeding tube that goes through his nose and down to his stomach and will measure how often he has reflux) but will be worth it if it helps us get to the bottom of this.
And what would a post be without some pictures of these two?!
Having some sweet dreams!
Anthony and Aryanna have started "talking." We caught Aryanna on camera the other night, but Anthony gets camera shy so we haven't caught him yet.
Saturday, January 5, 2013
New Plan
Well, after many phone calls yesterday we now have a new plan for Anthony.
Here's a recap of what happened up to this point: We went to the GI the day after Christmas and he recommended speech therapy. We waited a few days and hadn't heard anything from speech so I called and they informed me there was a 3 month waiting list. Anthony started eating even less so we went back to the GI this Thursday and he recommended that we check him into the hospital on Monday so he could see a speech therapist and get an EGD and pH monitor on Tuesday.
Ok, fast forward to yesterday. I get a call from outpatient speech therapy that they want to schedule him for an evaluation on Tuesday. (I was super confused at this point - apparently this was not the same person that had previously told me there was a 3 month waiting list). I explained to her that he was going to be checked in to the hospital on Monday and Tuesday and asked if it would be her office that did an inpatient evaluation. She said it was and that she wasn't aware that was the plan. So she called the GI's office and talked to the inpatient coordinator who said that we could skip admitting him and just take him to the speech evaluation on Tuesday. Since she didn't talk to the doctor and it was obvious that not everyone was communicating clearly I called the doctor's office myself to make sure it was ok to put off the other tests for now. The nurse called me back after talking to the doctor and said we can just go to the speech appointment on Tuesday and if they see something that they think would require more tests or if things get worse we can admit him on Thursday or the following Tuesday for the tests. We're definitely grateful that Anthony won't have to go through the trauma of those tests. Pray that we would get some good information and strategies to try from speech.
Aaaannnnddd, Anthony just finished an entire bottle at noon today! Don't even know the last time he's done that! Praise God!
Here's a recap of what happened up to this point: We went to the GI the day after Christmas and he recommended speech therapy. We waited a few days and hadn't heard anything from speech so I called and they informed me there was a 3 month waiting list. Anthony started eating even less so we went back to the GI this Thursday and he recommended that we check him into the hospital on Monday so he could see a speech therapist and get an EGD and pH monitor on Tuesday.
Ok, fast forward to yesterday. I get a call from outpatient speech therapy that they want to schedule him for an evaluation on Tuesday. (I was super confused at this point - apparently this was not the same person that had previously told me there was a 3 month waiting list). I explained to her that he was going to be checked in to the hospital on Monday and Tuesday and asked if it would be her office that did an inpatient evaluation. She said it was and that she wasn't aware that was the plan. So she called the GI's office and talked to the inpatient coordinator who said that we could skip admitting him and just take him to the speech evaluation on Tuesday. Since she didn't talk to the doctor and it was obvious that not everyone was communicating clearly I called the doctor's office myself to make sure it was ok to put off the other tests for now. The nurse called me back after talking to the doctor and said we can just go to the speech appointment on Tuesday and if they see something that they think would require more tests or if things get worse we can admit him on Thursday or the following Tuesday for the tests. We're definitely grateful that Anthony won't have to go through the trauma of those tests. Pray that we would get some good information and strategies to try from speech.
Aaaannnnddd, Anthony just finished an entire bottle at noon today! Don't even know the last time he's done that! Praise God!
Thursday, January 3, 2013
The Preemie Journey Continues in 2013
2013 has brought with it more preemie struggles. Christmas break was a mix of emotions. We had lots of sweet moments as a family and thanks to 2 snow days we got to spend 2 weeks together. We had so much fun watching the twins open Christmas presents for the first time and enjoyed lots of smiles and giggles. But Christmas break was also very stressful and frustrating. Anthony had slowly been eating less and less. About a week before Christmas we called the pediatrician and she referred us to a GI doctor. A couple days after that our visiting nurse came and we found out that he had lost weight - not good. The main factor in his lungs healing and getting stronger is weight gain. Our appointment with the GI wasn't for a few more days. Every feeding was becoming a battle. One of us would try to feed him while the other would sing to him or hold a toy with flashing lights and music to distract him. The poor boy wants to eat, but when it comes down to it he arches his back, pushes the bottle away, cries or turns his head away. We tried different schedules, sippy cups, and feeding him with a syringe. The majority of our days have revolved around trying to get him to eat.
We took Anthony to the GI doctor on the 26th and the good news is that he's still on the growth chart. The doctor isn't sure that the reflux is the biggest problem. He thinks that he has just developed an oral aversion because of all the negative experiences preemies have with their mouth and face (ventilator, feeding tube, suction, tender grips, etc). Thankfully, he doesn't have a total oral aversion and still sucks his hands, toys, etc but he definitely is not happy about the bottle. The GI referred us to speech therapy (they help with feeding strategies, swallowing, etc) and had us increase his formula from 24 calorie to 27 calorie. He wanted us to try and get him to take 25-30 oz a day. We waited a couple of days to hear from speech therapy and after hearing nothing I called to find out when they could get us in. There is a THREE MONTH waiting list! A lot of good that does us! And, in the mean time Anthony hadn't eaten any more than 20 oz in a day. Then, a couple of days this week he only ate 10 - 12 oz, even with going back to feeding him in the middle of the night (he usually does the best at this feeding because he's half asleep). So we went back to the GI today and the verdict is that we need to do some tests and find out what's going on. We'll take Anthony to the hospital first thing in the morning on Monday and they'll admit him and we'll actually get to see a speech therapist that way. The speech therapist will observe him eating and decide if he needs a swallow study and maybe recommend some techniques that could help him eat better. Then on Tuesday they'll put him under anesthesia and do an EGD (Esophagogastroduodenoscopy - I see why they abbreviate that!). They'll look at his esophagus, stomach and the first part of the small bowel. They'll also take some biopsies to see if he could have an allergy that's causing pain. They'll also place a tube in his esophagus for a 24 hour pH monitor to detect reflux. Hopefully, after all that we'll have some answers and can find a solution so eating isn't such a horrible experience for Anthony.
To say that all of this is stressful would be a vast understatement. It's awful to see your child hungry and yet not want to eat. I've been clinging to this verse from my devotional the other day: So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most. - Hebrews 4:16. I've had to remind myself several times to just trust God to take care of my little boy - so hard to do.
Please pray for healing for Anthony and that we would be able to find something to help him.
On a positive note here a few pictures from Christmas - more to come soon!
Wednesday, December 19, 2012
Pulmonologist Update
The
verdict from our pulmonologist appt today: Anthony gets to join Aryanna
in not needing oxygen while he's awake (just barely hung onto 95 with
no O2 for that to happen), we'll wait on a sleep study for both of them
until March and they've gained some more
weight (key for their lung development-pray their reflux gets better),
and we don't have to use the apnea monitors anymore-yay for less chords
and equipment! We're making progress!
Sunday, December 9, 2012
Look How Far We've Come! 6 months old!
The twins are a little over 6 months old now (almost 4 months adjusted) and look how much they've grown! Here is a flashback to the NICU. Can you believe how tiny they were? I mean, I knew they were tiny at the time, but that was all we knew so I don't think we fully grasped just how small they were. When I compare these pictures to how big they are now, it really puts things in perspective! We're so grateful for how far they've come.
Here's proof of how much they've grown! Wow! (And this was when they were 5 months old, so they've grown even more!)
What are they up to now that they're six months old?
What are they up to now that they're six months old?
- Their hands are the most interesting things ever! They spend lots of time looking at their hands and figuring out what they can do with them.
- Holding toys with both hands and bringing toys to their mouths
- Talk, talk, talk!!! Aryanna just loves to make noise and you'd swear Anthony is telling you a story every time he opens his mouth.
- Giggle - Aryanna, especially, gets to laughing so hard when Daddy is being silly. Anthony is just starting to chuckle every once in a while, too.
- Smile - from the moment they open their eyes in the morning and all day long! So blessed to have such happy babies.
- Kicking - both love to kick in their bouncy seats, when they're laying on the floor and each other (see the last picture!)
- Pulling their cannulas out of their noses - ALL.THE.TIME - they think it's pretty funny, but mommy and daddy don't think so - especially at 3 a.m.
- Rocking tummy time - they're getting great at holding their heads up. We were getting a little worried about Anthony's head control and added Physical Therapy to the mix, but then he just started holding his head up. That boy just does things when he's ready to. It's just hard not to worry sometimes when we still don't know the ramifications of his brain bleed.
- They're getting so close to rolling over! They've just about got it and just need a little push getting their leg over.
- Eating cereal - we got the OK from the pediatrician to start cereal at their six month appointment. Anthony LOVES his cereal and will eat a whole serving. Aryanna is not so crazy about it. We've tried rice and oatmeal and we've tried mixing it with formula and with juice and she is just not a fan. We keep trying a little bit every day - I'm sure one of these days she'll decide she likes it.
- Receiving monthly Synagis shots - these help lessen the effects of RSV should they contract it. So far they haven't gotten sick this cold and flu season - Thank you Jesus! Thankfully our visiting nurse can give this to them so we don't have to take them to the germ-filled doctor's office.
- Their reflux has improved some. After a couple of weeks on Zantac (which didn't work) we tried Prilosec and that has helped some. We've still had good days and bad days. Anthony only gained three ounces the last 2 weeks and Aryanna gained 7 ounces (they used to gain about a pound every 2 weeks). Please keep praying that they would be free from pain, that they wouldn't refuse to eat or throw up and that they would continue to gain weight. They did both have record-setting eating yesterday! Hallelujah - Thank you Jesus! Pray for more of that!
- Other prayer requests: Anthony has another head ultrasound tomorrow (Monday). Things have been stable for the last several head ultrasounds, but it hasn't resolved yet (it could still be a long time before that happens). Our pediatrician gave us the choice of doing another head ultrasound now while his soft spot is still open or waiting until later which would mean having an MRI or CT scan. There really aren't any concerns with his head circumference or development at this point so she left it up to us. We decided to go ahead and have another head ultrasound while we still can for peace of mind. We also take them back to the pulmonologist on December 19th so prayers for healthy lungs are appreciated! We are very much looking forward to the day that we will be oxygen-free, but are grateful that they have the equipment they need.
Her favorite place for her hands these days!
(Until she gags herself!)
Proof that she wants to roll so badly!
Love those smiles!
Talking to the camera!
Head control - much improved!
"She did it!"
Anthony loves sucking on those hands, too.
Happiest.Babies.Ever. (In our opinion:))
Huh?
"I love you!" (Not even posed - this was all them!)
And this one, just for fun!
Hi-ya!
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