Well, when we went to the cardiologist today. We expected to know the exact surgery that they would be doing on Frankie's heart and a pretty good idea of when. Here's what happened:
-Weight: 15lbs. 1 oz.
-Length: 26 3/4in.
-Blood pressure: No clue. I just know it was good.
-Oxygen saturation: 96%.
-Heart echo was done.
-Dr. Grady came in and said that the echo looks good. Nothing is worsening and the hole is still there, obviously. His pressures in his heart and lungs look good, too. This is good to know because he hasn't had an echo since he's been off of oxygen. It's good to know that things are stable and pressures are looking better.
-The three different kinds of surgery are still the same:
1. In the cath lab through the vessels in the leg. This would be the best thing for him because it's out patient and easy recovery. The likely-hood of this happening.... Slim. He's too small.
2. Small incision and slight opening of the sternum to try and place the device (disc like device to close hole) around the hole.
3. Larger incision and complete opening of the sternum along with stopping the heart, putting him on a heart and lung machine so that they can physically sew the hole shut.
The hope? Number 2! It's definitely possible. If that's the route we have to go, they will try that first and if it doesn't work they will go ahead and do number 3. It will be during the same day. They won't sew him up and try later, it's all right then and there. The REAL hope?! Number 1! It just isn't too likely. He's just too small which leads me to his growth.
-The doctors haven't been to thrilled recently with Frankie's growth. It is definitely growing, in length but, not in weight so much. In the beginning of May we reduced his NG feedings by 40% (okay by dietician) to promote oral feeding. Frankie didn't give two shits. He just lost 1lb. Which is a lot for him considering he doesn't have anything to loose. So, I returned all of his calories. I have also increased his calorie intake within the last week. So, for his height and weight he should be getting 640 calories a day. Frankie has a new dietician that sucks balls, to say the least. She doesn't take into account that for one, he's really active and two, he is working harder because he has an ASD and PPHN. That being sad, he needs more calories due to that two factors. Initially I just added an extra feeding overnight that was an extra 137 calories a day. He definitely gained weight but after a few days he was gagging in the morning because it seemed like too much. I've reduced it a little so that he's getting an extra 104 calories a day and I will slowly increase every few days so that it's not just a big jump. Fingers crossed this works and he can fatten up!
What's next?
-Dr. Grady is going to speak with his colleagues within the next couple weeks. Every Wednesday they speak about their patients together to see what is best for them and bounce ideas off of each other. Tomorrow is too soon for them to talk about him but within the next couple weeks, they will talk about Frankie. Then, Dr. Grady will call me and let me know what they have decided and schedule another appointment from there. Dr. Grady himself will not be doing the surgery. It will be one of his partners Dr. Ballser (I am probably spelling that wrong).
That's all for now. If I think of anything else, I will post. Much love and a HUGE thank you for all your thoughts and prayers. We love you all very much!
Tuesday, June 26, 2012
Thursday, June 14, 2012
It's so nice...
To hear wonderful things about our baby!
Today, we went to the neonatologist for a little visit. Frankie weighs in around 14lbs 8oz. While yes, this is small, and no, he is not on the growth charts, he has had a steady gain for himself! They just expect their patients to have tripled their birth weight by 12 months. Frankie was 5lbs 15oz at birth so he needs to be roughly 18lbs by his first birthday. I do believe this is doable! Fingers crossed! We did have a set back at the beginning of May because we had cut his ng tube feeds by 40% to encourage more oral feedings. Not only was he still uninterested, he lost some weight. So, we had to increase his feeds back to normal and he had to gain that weight back. If he wouldn't have lost that weight he would be roughly 15lbs. 8oz currently. Bummer!
The doctors we super impressed with Frankie today! Here's what they had to say:
-He looks amazing! <insert cheek pinching> :)
-He's getting so big!
-They expected him to sit up independently at 6 months, he did.
-They expect him to crawl by 10 months, he's trying.
-He is advanced in the fact that he plays with food and brings it to his mouth (yet doesn't manage to eat much).
-He's advance in his social/emotional/personal skills.
-They were very impressed with all his little "tricks" and couldn't believe the things he could do!
-Loved that he was trying to stand and crawl.
-He's a charmer! ;)
-Overall very happy and impressed with how he is doing!
It was so great to hear these things today! We didn't really know what we would be facing today (you never know from each appointment with an O baby).
We took a visit up to the NICU to see his girlfriends. We were happy to see them all! We don't go back to see them until OCTOBER! And, when we do it will be for development testing (Frankie will see it as playing).
What's next? Frankie goes to see the cardiologist on June 26th to talk about his heart surgery: how they will do it and when they will do it, probably do an echo on his heart as well.
Much love to you all! I will keep updating as much as I can!
Today, we went to the neonatologist for a little visit. Frankie weighs in around 14lbs 8oz. While yes, this is small, and no, he is not on the growth charts, he has had a steady gain for himself! They just expect their patients to have tripled their birth weight by 12 months. Frankie was 5lbs 15oz at birth so he needs to be roughly 18lbs by his first birthday. I do believe this is doable! Fingers crossed! We did have a set back at the beginning of May because we had cut his ng tube feeds by 40% to encourage more oral feedings. Not only was he still uninterested, he lost some weight. So, we had to increase his feeds back to normal and he had to gain that weight back. If he wouldn't have lost that weight he would be roughly 15lbs. 8oz currently. Bummer!
The doctors we super impressed with Frankie today! Here's what they had to say:
-He looks amazing! <insert cheek pinching> :)
-He's getting so big!
-They expected him to sit up independently at 6 months, he did.
-They expect him to crawl by 10 months, he's trying.
-He is advanced in the fact that he plays with food and brings it to his mouth (yet doesn't manage to eat much).
-He's advance in his social/emotional/personal skills.
-They were very impressed with all his little "tricks" and couldn't believe the things he could do!
-Loved that he was trying to stand and crawl.
-He's a charmer! ;)
-Overall very happy and impressed with how he is doing!
It was so great to hear these things today! We didn't really know what we would be facing today (you never know from each appointment with an O baby).
We took a visit up to the NICU to see his girlfriends. We were happy to see them all! We don't go back to see them until OCTOBER! And, when we do it will be for development testing (Frankie will see it as playing).
What's next? Frankie goes to see the cardiologist on June 26th to talk about his heart surgery: how they will do it and when they will do it, probably do an echo on his heart as well.
Wednesday, May 30, 2012
One more thing to add to the list, eh?
Let me just start by saying how lucky we are to have Frankie as our son! He is the toughest kid I know! Each and everyday is like Christmas in our house because we wake up to him daily and he does something new everyday!
Frankie's hernia surgery went so well! E healed and recovered so quickly! Like light speed, I'm not kidding! We went to the surgeons on Thursday just for a follow up on his hernia repairs. He's doing wonderful! They were all talking about how quickly he's moving along for a kid with an O. Most babies aren't where he is! Wow! That was AMAZING to hear that! He's been through so much thus far and knowing he's kicking ass and taking names along the way, that makes it even better! TANK, TANK, TANK!
So you're probably asking what's the newest thing we can add to the list of Frankie? Well, a milk allergy. I had given Frankie some Ted Drewes (I know, I know. Of all the things to be allergic to... This sucks! Who doesn't love ice cream?!) and he got somelittle hives on his face. I didn't think too much of it because it wasn't a lot. I just thought maybe it was so cold that it irritated his skin. Well, while on our way home from a camping trip we stopped at Culver's. Again, vein he fat kid at heart, I got some ice cream and gave him a bite. BAD idea! Hives were ten fold what they were previously, his eyes started to swell and he was uncomfortable. Needless to say, I sat in the back seat of the car with him the rest of the way home and made sure he was okay. We then went to the pediatrician who obviously referred us to an allergist who confirmed my suspicion. Good thing he still likes me breast milk! Anywho, this is just one more thing that Frankie will have to conquer which I know he will. The doctor said, of all the things to be allergic to, this is the best and it's the easiest for him to grow out of. One more thing for the Tank to out grow.
Other than that, he's his usual Tank self! Chatting up a storm. Saying mama, dada, haha, ba's and vowel noises, along with all sorts of other cute things! He will pick up his feet and walk if you hold his hand, try and crawl if you put him on his hands and knees, pivot on his booty. So many things I can't list them all!
Thanks for all your support! We love you all!
Frankie's hernia surgery went so well! E healed and recovered so quickly! Like light speed, I'm not kidding! We went to the surgeons on Thursday just for a follow up on his hernia repairs. He's doing wonderful! They were all talking about how quickly he's moving along for a kid with an O. Most babies aren't where he is! Wow! That was AMAZING to hear that! He's been through so much thus far and knowing he's kicking ass and taking names along the way, that makes it even better! TANK, TANK, TANK!
So you're probably asking what's the newest thing we can add to the list of Frankie? Well, a milk allergy.
Other than that, he's his usual Tank self! Chatting up a storm. Saying mama, dada, haha, ba's and vowel noises, along with all sorts of other cute things! He will pick up his feet and walk if you hold his hand, try and crawl if you put him on his hands and knees, pivot on his booty. So many things I can't list them all!
Thanks for all your support! We love you all!
Tuesday, May 1, 2012
Operation testicles.... complete!
As you are all aware, Frankie had a bilateral inguinal hernia. We arrived here at Stl Children's Hospital at a very lovely 5:45am! We registered, played the waiting game, spoke with all the doctors and then at 7:35am, they took Frankie- cue tears! At 8:30am, the anesthesiologist came in and told us that they JUST started the surgery, 5 minutes prior. Sheesh.
When we initially spoke with the anesthesiologists they said that it would be okay to do a spinal and not intubate him. When the "good drugs" doctor came in to speak with us this morning he told us that it really wasn't the best idea to do that and told us his reasons and they made sense AND he gets paid the big bucks for a reason. So, they ended up doing what they typically do on babies with hernia repairs. They knocked him out with gas, put an IV in, intubated him, and gave him a caudal block. Thankfully, the surgery is short and they extubated him in recovery with no issues. Thank God! They did turn his oxygen up to 1 liter, just to be cautious but they are already weaning him back down to his baseline with no issues.
Dr. Keller (surgeon) came in after the surgery was complete and said the left side was a large hernia and the right was small. It was a simple fix for him to do, not a complicated hernia repair, thankfully. He said they can get messy!
As of right now he is a little irritable and tired but he's doing well. He just needs some good, solid sleep and he will be okay. At first he was irritable because he blew out his IV (they didn't have to re-stick him thank goodness) then he fell asleep and woke up fussy because he was hungry so I decided to just start up his feeds! :) Solved that issue. Now he's just super tired and needs some rest. Hopefully he can get some this evening.
The plan is to be discharged tomorrow morning if things keep going smoothly! I'm ready to get back home and be in our own space!
Thank you all so much for all the prayers and support today! Even though this isn't considered an extreme surgery, there are always so many other risks with Tank and we are beyond thankful for all of you because these days are stressful and scary and having you all is certainly help! Much love!
When we initially spoke with the anesthesiologists they said that it would be okay to do a spinal and not intubate him. When the "good drugs" doctor came in to speak with us this morning he told us that it really wasn't the best idea to do that and told us his reasons and they made sense AND he gets paid the big bucks for a reason. So, they ended up doing what they typically do on babies with hernia repairs. They knocked him out with gas, put an IV in, intubated him, and gave him a caudal block. Thankfully, the surgery is short and they extubated him in recovery with no issues. Thank God! They did turn his oxygen up to 1 liter, just to be cautious but they are already weaning him back down to his baseline with no issues.
Dr. Keller (surgeon) came in after the surgery was complete and said the left side was a large hernia and the right was small. It was a simple fix for him to do, not a complicated hernia repair, thankfully. He said they can get messy!
As of right now he is a little irritable and tired but he's doing well. He just needs some good, solid sleep and he will be okay. At first he was irritable because he blew out his IV (they didn't have to re-stick him thank goodness) then he fell asleep and woke up fussy because he was hungry so I decided to just start up his feeds! :) Solved that issue. Now he's just super tired and needs some rest. Hopefully he can get some this evening.
The plan is to be discharged tomorrow morning if things keep going smoothly! I'm ready to get back home and be in our own space!
Thank you all so much for all the prayers and support today! Even though this isn't considered an extreme surgery, there are always so many other risks with Tank and we are beyond thankful for all of you because these days are stressful and scary and having you all is certainly help! Much love!
Bright and early this morning before surgery.
Patiently waiting for surgery to end.
In recovery, still not awake from the good drugs.
Just waking up. Sweet, sleepy face.
Playing with toys in recovery.
Playing in 7 west (where we're staying over night. Cardiology floor.) after a nap!
Monday, April 30, 2012
Family Vacay & March for Babies!
Last week, our little DiFranco family took their first family vacation! We invested some money into a camper that pulls behind Joe's big diesel truck. I'm not typically one for camping but when I have my own bed, bathroom, shower, kitchen, AC/heat, I'm ALL over it! I do enjoy being out there, just not in a tent with the bugs and bears! So, we ended up driving 3 hours northwest of here to Arrow Rock, Missouri. Arrow Rock is a very, very small town (population 56) with a little main street. As our luck would have it, not a dang thing was open because the "season" didn't start until THIS WEEK! Oh well! We still had a good time hiking, taking walks, just hanging out together, peacefully! This summer, we are hoping to take a couple weeks and head to the east coast! If anyone has any suggestions, we'd love to here them!
March of Dimes, March for Babies! Wow! This event just about renders me speechless! Our friends and family are insanely amazing! We had a huge team at the actual event, not to mention all the t-shirts we sold! If we would have had everyone there that bought a shirt, we would have had 105 people! So cool! Frankie's team raised a whopping $1,300 for the March of Dimes! We had so much fun and can not wait until next year!
So, tomorrow is Frankie's hernia surgery. We have to be there at 5:45 am (ahhhh!) and the surgery is at 7:45 am. Joe and I have faith that all will go well, it's just still nerve wracking thinking about what he has to go through. They will be giving him a spinal instead of knocking him out completely and intubating him. Tomorrow we will be sure to keep everyone updated on his status and such. We will be coming back home on Wednesday.
Thanks so, so much for all that donated, bought t-shirts and showed your support for the March! Also, a big thanks for the thoughts and prayers for Frankie's surgery tomorrow. We love you all!
March of Dimes, March for Babies! Wow! This event just about renders me speechless! Our friends and family are insanely amazing! We had a huge team at the actual event, not to mention all the t-shirts we sold! If we would have had everyone there that bought a shirt, we would have had 105 people! So cool! Frankie's team raised a whopping $1,300 for the March of Dimes! We had so much fun and can not wait until next year!
So, tomorrow is Frankie's hernia surgery. We have to be there at 5:45 am (ahhhh!) and the surgery is at 7:45 am. Joe and I have faith that all will go well, it's just still nerve wracking thinking about what he has to go through. They will be giving him a spinal instead of knocking him out completely and intubating him. Tomorrow we will be sure to keep everyone updated on his status and such. We will be coming back home on Wednesday.
Thanks so, so much for all that donated, bought t-shirts and showed your support for the March! Also, a big thanks for the thoughts and prayers for Frankie's surgery tomorrow. We love you all!
Thursday, April 19, 2012
The appointment marathon!
Let me start by saying all went well today! Let me break each appointment down...
Heart echo: This was the quickest echo we have ever done! Frankie is such a good boy and this gal had done and echo on him before and knew the position to get the best shot of his ticker. We don't know the results of the echo yet as we didn't meet with the cardiologist. He will look over it and call us with any information. I am actually going to call in the morning to let them know I am anticipating a call no matter what the results may be. I'm sure they will be great!
Neonatologist: The plan is for Frankie to get his hernia surgery and heal. Once he fully recovered we go back and visit Dr. Phil (seriously, that's his name and we love him so much! Well, his first name is Phil at least!) in June and we start developing a plan to wean his oxygen! Yay! Fingers crossed it all goes well. This is something we have to work along side the cardiologist with because of his PPHN and ASD. Frankie is gaining weight, not as much as they'd like, but it's some. They'd prefer he'd gain an ounce a day but that's not happening. At least not at the moment. I'm trying my best to figure out the best feeding plan with him, along with the nutritionist.
Xray: We went and had an xray of Frankie's abdomen just to make sure that all looks well since he's spitting up more. He's still pooping but they just wanted to make sure all was well in his O and thankfully, it is!
Surgery: Frankie's O is looking great and is drastically shrinking. Little did we know, until today, that it has shrunk so much. The surgeons are much more used to this kind of thing and know how hard they can push on it and manipulate it. He has a lot of "give" and/or extra skin on his O now because a lot has gone into his abdomen. Very cool! Now that we can this we can wrap him tighter knowing that he'll be okay! Also while there, we discussed his double hernia surgery. This will take place on May 1st. We aren't sure of the time yet. We won't know that until the day before. Once we do we will let everyone know. Typically, this is an out patient procedure but because Frankie writes his own book on everything medical, we are staying over night, just in case.
Upper GI: Dr. Keller (surgeon) had us go back down to radiology just to check the placement of Frankie's NG tube. If it was too far down into stomach and into his small intestines it could cause a lot of issues. If it was in his stomach, things were fine. We came to find out that it's in his stomach and all is fine! If it had been in his duodenum (beginning section of small intestine) we just would have had to pull the NG back a little bit until it was in the stomach. Also, the other night Joe and I checked the placement and such of his NG and it actually wasn't in far enough. This is a big reason why he was spitting up more. He still spit up today but not as much as usual, now that it's in the correct spot.
Anesthesiology: We went and paid a visit to the drug doctors to see what we could do for Frankie during his hernia repair surgery. Typically, they intubate a child during this surgery and then extubate them shortly after during recovery. Since Frankie has PPHN, if possible, we would rather not do this to him. They did it during his belly surgery in December but that is an entirely different scenario. Thankfully, it is possible for them to just give him a spinal during the surgery and he will just be numb like I was for his delivery. Obviously if they run into complications (not likely) and such, they can always knock him out completely and intubate him.
So, everything went well and Frankie will have his hernia surgery on May 1st. I am nervous as ever about it just because I hate for him to have to go through anything more but it will be nice to cross one thing off the Frankie "to do" list.
We appreciate everyone's support, love and prayers through all of this. It honestly is very helpful and we are thankful for each and every one of you! If I missed anything or anyone has any questions, please don't hesitate to ask!
Also, March for Babies is April 28th! We hope to see everyone there! And, a HUGE thank you to all who donated and bought a Team Frankie shirt! You all rock!!!!!!!!!!!!!
LOVE TO YOU ALL!!!!!!!!! Now for some pics!
Heart echo: This was the quickest echo we have ever done! Frankie is such a good boy and this gal had done and echo on him before and knew the position to get the best shot of his ticker. We don't know the results of the echo yet as we didn't meet with the cardiologist. He will look over it and call us with any information. I am actually going to call in the morning to let them know I am anticipating a call no matter what the results may be. I'm sure they will be great!
Neonatologist: The plan is for Frankie to get his hernia surgery and heal. Once he fully recovered we go back and visit Dr. Phil (seriously, that's his name and we love him so much! Well, his first name is Phil at least!) in June and we start developing a plan to wean his oxygen! Yay! Fingers crossed it all goes well. This is something we have to work along side the cardiologist with because of his PPHN and ASD. Frankie is gaining weight, not as much as they'd like, but it's some. They'd prefer he'd gain an ounce a day but that's not happening. At least not at the moment. I'm trying my best to figure out the best feeding plan with him, along with the nutritionist.
Xray: We went and had an xray of Frankie's abdomen just to make sure that all looks well since he's spitting up more. He's still pooping but they just wanted to make sure all was well in his O and thankfully, it is!
Surgery: Frankie's O is looking great and is drastically shrinking. Little did we know, until today, that it has shrunk so much. The surgeons are much more used to this kind of thing and know how hard they can push on it and manipulate it. He has a lot of "give" and/or extra skin on his O now because a lot has gone into his abdomen. Very cool! Now that we can this we can wrap him tighter knowing that he'll be okay! Also while there, we discussed his double hernia surgery. This will take place on May 1st. We aren't sure of the time yet. We won't know that until the day before. Once we do we will let everyone know. Typically, this is an out patient procedure but because Frankie writes his own book on everything medical, we are staying over night, just in case.
Upper GI: Dr. Keller (surgeon) had us go back down to radiology just to check the placement of Frankie's NG tube. If it was too far down into stomach and into his small intestines it could cause a lot of issues. If it was in his stomach, things were fine. We came to find out that it's in his stomach and all is fine! If it had been in his duodenum (beginning section of small intestine) we just would have had to pull the NG back a little bit until it was in the stomach. Also, the other night Joe and I checked the placement and such of his NG and it actually wasn't in far enough. This is a big reason why he was spitting up more. He still spit up today but not as much as usual, now that it's in the correct spot.
Anesthesiology: We went and paid a visit to the drug doctors to see what we could do for Frankie during his hernia repair surgery. Typically, they intubate a child during this surgery and then extubate them shortly after during recovery. Since Frankie has PPHN, if possible, we would rather not do this to him. They did it during his belly surgery in December but that is an entirely different scenario. Thankfully, it is possible for them to just give him a spinal during the surgery and he will just be numb like I was for his delivery. Obviously if they run into complications (not likely) and such, they can always knock him out completely and intubate him.
So, everything went well and Frankie will have his hernia surgery on May 1st. I am nervous as ever about it just because I hate for him to have to go through anything more but it will be nice to cross one thing off the Frankie "to do" list.
We appreciate everyone's support, love and prayers through all of this. It honestly is very helpful and we are thankful for each and every one of you! If I missed anything or anyone has any questions, please don't hesitate to ask!
Also, March for Babies is April 28th! We hope to see everyone there! And, a HUGE thank you to all who donated and bought a Team Frankie shirt! You all rock!!!!!!!!!!!!!
LOVE TO YOU ALL!!!!!!!!! Now for some pics!
Cute little baby hand doing art!
Getting his echo done.
Waiting to see the drug doctors.
Passed out during the last appointment. He wore himself out flirting with all the pretty nurses!
Popeye face! No, really, he's feeling his two bottom teeth because they're coming in!
Chilling at home after a much needed nap after today's marathon!
Monday, April 9, 2012
Just shy of 7 months!
It's so hard to believe but Frankie is almost 7 months old! He's really growing! He has such a personality now and I LOVE every second of it! Frankie can now sit up on his own and is working on standing up as well as clapping his hands and babbling! He talks a ton now! He is also doing great! He now weighs in at 13 lbs 10 oz! He's gaining very well! Let me break things down for an overview of it all...
Feeding: Frankie is still on his NG tube, unfortunately. Remember he used to have his food go in over 3 hours and then he was off for 1 hour? Well, now he's on for 1 hour and is off for 3 hours! Yay! I've been working hard on this. He is now getting a chance to start feeling hungry! Twice a day, before his feeds go back on, I am offering him his delicious home made baby food! I taste test it all first to make sure that it's good. I don't want to feed him it if it's nasty! If I won't eat it, I'm not offering it to him! We will keep working towards reducing the time the feeds go in in hopes that he will be able to tolerate an entire feeding at once and we can pull the tube for good! A nutritionist came by the house on Friday and we talked about the best way to do this. I look forward to start taking those steps on Monday! Why wait until Monday? Frankie will be finished with his steroids. Why is he on steroids? That leads me to the next topic...
PPHN: On March 13th Joe and I noticed that Frankie was acting a little strange and eventually his coloring didn't look too well. His face was grey and around his lips was purpleish blue. We kept increasing his oxygen and his coloring wouldn't return to normal. What else sucks is that his pulse ox machine wasn't working either and hadn't been for a few days so we didn't know how low his saturation really was! We packed him up and took him to the ER. When we leave the house we always put him on a small, portable tank of air. When we put him on this his coloring returned to normal and he got more life back into him. When we got the the hospital they did x-rays, ran a few tests and did an echo on his heart. The echo worsened and the cardiologist was concerned. Frankie was admitted to the cardiology floor for the night for observation and was put on a steroid burst. What ended up happening was his oxygen machine at home wasn't working as well as his pulse ox machine. We found this out when we brought him back home from the hospital and hooked him back up to it and he started to look funny again. Needless to say, we have switched home health companies because that was the last f*#%ing straw for me! They have been a nightmare to deal with and this was it! I could've choked someone! Anyhow... The steriods should help improve his PPHN and we do believe that it has. His oxygen saturation levels have been amazing! So good that it doesn't seem like he even needs oxygen! He is hardly on any! He is only on 0.2 liters and the lowest it goes is 0.1 liters. Hopefully he keeps in this direction and we can get him off of oxygen after his hernia surgery. That's the next topic...
Surgery: Our next appointment is Thursday next week, the 19th. During this appointment they will look at his O (no surgery on that for a long time though) and we will discuss the options for his hernia surgery and we will also schedule it. I will definitely post an update about this on Thursday next week because we will also be seeing his neonatologist and cardiology (follow up after steroids have ended). His O is looking great and it is decreasing in size little by little. After hernia surgery, we will start compression wrapping it and hope that his breathing lets us do it! It will just be a slow process, but that's okay!
ASD: The cardiologist will look at the echo we will be getting on the 19th and let us know what he thinks. But, Frankie will definitely be getting heart surgery by the time he is one.... ;(
Frankie qualified for the First Steps Program (YAY!!!!) and is being seen by THE BEST occupational therapist (weekly), physical therapist (monthly) and nutritionist (monthly)! We are so lucky to have qualified. I am so, so thankful for these gals, they are truly amazing! A few therapist still stop by through his insurance when they don't cancel or reschedule literally ten minutes before his appointment!
No medicine changes for the Tank.
I believe that is all for now! The next update will be on the 19th! Feel free to ask any questions if you think I have forgotten something! Love to you all and THANK YOU for your constant love, support and prayers for our Tank!
Feeding: Frankie is still on his NG tube, unfortunately. Remember he used to have his food go in over 3 hours and then he was off for 1 hour? Well, now he's on for 1 hour and is off for 3 hours! Yay! I've been working hard on this. He is now getting a chance to start feeling hungry! Twice a day, before his feeds go back on, I am offering him his delicious home made baby food! I taste test it all first to make sure that it's good. I don't want to feed him it if it's nasty! If I won't eat it, I'm not offering it to him! We will keep working towards reducing the time the feeds go in in hopes that he will be able to tolerate an entire feeding at once and we can pull the tube for good! A nutritionist came by the house on Friday and we talked about the best way to do this. I look forward to start taking those steps on Monday! Why wait until Monday? Frankie will be finished with his steroids. Why is he on steroids? That leads me to the next topic...
PPHN: On March 13th Joe and I noticed that Frankie was acting a little strange and eventually his coloring didn't look too well. His face was grey and around his lips was purpleish blue. We kept increasing his oxygen and his coloring wouldn't return to normal. What else sucks is that his pulse ox machine wasn't working either and hadn't been for a few days so we didn't know how low his saturation really was! We packed him up and took him to the ER. When we leave the house we always put him on a small, portable tank of air. When we put him on this his coloring returned to normal and he got more life back into him. When we got the the hospital they did x-rays, ran a few tests and did an echo on his heart. The echo worsened and the cardiologist was concerned. Frankie was admitted to the cardiology floor for the night for observation and was put on a steroid burst. What ended up happening was his oxygen machine at home wasn't working as well as his pulse ox machine. We found this out when we brought him back home from the hospital and hooked him back up to it and he started to look funny again. Needless to say, we have switched home health companies because that was the last f*#%ing straw for me! They have been a nightmare to deal with and this was it! I could've choked someone! Anyhow... The steriods should help improve his PPHN and we do believe that it has. His oxygen saturation levels have been amazing! So good that it doesn't seem like he even needs oxygen! He is hardly on any! He is only on 0.2 liters and the lowest it goes is 0.1 liters. Hopefully he keeps in this direction and we can get him off of oxygen after his hernia surgery. That's the next topic...
Surgery: Our next appointment is Thursday next week, the 19th. During this appointment they will look at his O (no surgery on that for a long time though) and we will discuss the options for his hernia surgery and we will also schedule it. I will definitely post an update about this on Thursday next week because we will also be seeing his neonatologist and cardiology (follow up after steroids have ended). His O is looking great and it is decreasing in size little by little. After hernia surgery, we will start compression wrapping it and hope that his breathing lets us do it! It will just be a slow process, but that's okay!
ASD: The cardiologist will look at the echo we will be getting on the 19th and let us know what he thinks. But, Frankie will definitely be getting heart surgery by the time he is one.... ;(
Frankie qualified for the First Steps Program (YAY!!!!) and is being seen by THE BEST occupational therapist (weekly), physical therapist (monthly) and nutritionist (monthly)! We are so lucky to have qualified. I am so, so thankful for these gals, they are truly amazing! A few therapist still stop by through his insurance when they don't cancel or reschedule literally ten minutes before his appointment!
No medicine changes for the Tank.
I believe that is all for now! The next update will be on the 19th! Feel free to ask any questions if you think I have forgotten something! Love to you all and THANK YOU for your constant love, support and prayers for our Tank!
Look at the beautiful baby face with no tubes! We can't wait until he's like this 24/7!
Look at that muscle definition! This kiddo never stops moving! He would run if he could!
Playing with his OT, Ellen!
Frankie loves Ellen!
Snuggling with his dada at the restaurant.
Big boy playing with his toys!
Standing!!!!
Down time... finally!
Chillin' in the sink in the RV!
Zonked out while holding his bink!
My little hunk!
A complete mess! A cookie and a sippy with water make one messy baby! And I love it! Messy baby means you had a good time!
Little ham!
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