Who wants a shot?!

Remember when shots used to be fun? Shots of Tequila, Jager Bombs..... My how things change when you have a baby! Now shots include D-Tap, Rotovirus, etc. Not exactly the kind of shot that is so much fun! I think our fun shot taking days are over, for now.

Today, Frankie went to the pediatrician. He weighed in at 12lbs 5 oz, but that was with clothes on and a wet diaper, so we are thinking he's around 12 lbs or a little over. I will weigh him on my scale tomorrow. Didn't find it necessary to weigh him twice today. Since December Frankie has grown 4 inches in length. He's finally on the growth chart for length! And, since last month he has gained almost 2 lbs! The doctor is VERY pleased! This means his food is doing the trick and he's handling it well which is even better! Frankie is currenlty getting 117ml over 4 hours. That's 3 ml shy of 4 oz. And, it's still fortified. For the longest time we had his food go in over 3 hours and then he was off for an hour. Now we are getting the food in in 2.5 hours and he's off for an hour and a half! We're making progress, slowly, but it's progress! Joe and I believe this will be a slow process because he's spitting up just a tiny bit now with the change. It will just take time. We can handle that!

After leaving the pediatrician we had to take Frankie to get his 4 month shots (1 month late). We can't get them at the doctors office because of the state health care. We had to go to the South County Health Center to get them. Yuck! It's better than the city locations but it's still gross! Frankie recovered quickly from the shots but he cried. And it hurt my feelings! I felt terrible for him. Poor baby!

Over all, Frankie is doing SUPER! He's growing very well! We qualified for First Steps so now Frankie will have all the therapy he needs until he is 3 or catches up and gets his O taken care of before then! This is very exciting! I've been working hard with him everyday! Physical therapy exercises, speech stimulation exercises! Tons of stuff! And he's doing well!

Hopefully after Frankie's hernia surgery in April (not scheduled just yet) we can get him off the oxygen. They are leaving him on it until after the surgery in case he needs it. Also, when we go back to the neonatologist in April we are going to talk about his meds and see if we can get him off of some of them. Tuesday next week, we go to the cardiologist to check on his PPHN. Praying for nothing but good news! Of course, I will let you all know how that goes!

If you'd like a Frank the Tank shirt let me know and I will get one ordered for you. They're super cute! And they are $20. A majority of the $20 goes towards the March of Dimes and the rest covers the shirt.

That's all for now! Love to you all! Oh and we finally have some new pics of his O!

The amazing Frankie!

On Thursday last week we went to see the neonatologist. Overall, Frankie is doing swell! He is weighing in around 11lbs 8oz. He's steadily gaining! Here's the rundown...

Oxygen: We will be on this until after his hernia surgery in April. They are in no rush to get rid of this because it's simple and helpful. Once he has his hernia surgery and we are free and clear of anything breathing concerns, then hopefully we can say good bye to it!

NG tube: We hate it. So, we tried the sink or swim method and Frankie floated..... We ended up putting it back in because he wasn't taking enough by the bottle to not get dehydrated but he can take a bottle! So, we are just going to keep offering him a bottle each day and start to shorten the amount of time that his feeds are on so that he eventually gets all of his food over an hour and then his belly is used to having all of that volume at once and then we can give him a bottle and hopefully say adios to the NG!

Baby food: The pediatrician told me to wait until his 5 month appointment (which is Feb, 21st) to reevaluate the baby food situation. Well, I didn't see any harm in giving the little guy some rice cereal. So, every morning he has been getting some. He does well with it! He obviously isn't eating a ton but he opens up his mouth and accepts it. He may make a funny face but with each passing day he will grow to like it more and eat more!

Meds: All his meds are still the same. The plan is to let him out grow the doses of Lasixs and Sildenafil.

Development: Frankie is a little bit delayed due to his belly but not by a ton! He's doing so much now and his personality is really starting to shine through! He's such a sweet, good baby, truly. The main things we are working on are tummy time. He hates it but it's crucial for his development so it's another thing I just keep working on everyday. He has a speech therapist and a physical therapist that are supposed to come weekly but that doesn't ever happen! Lame! Good thing he has me! :)

I do believe that's all for now. He is doing wonderful! We still continue to wrap his O daily with a little bit of compression since it's still not the size it was before surgery. It'll get there again! It looks great though! It's all skinned over (with new reddish skin) except one small spot. The things this kid has done thus far in his life amazes me everyday! Toughest kid I know! LOVE HIM!

Love to you all and thanks for the continuous love, support and prayers!

Super excited!

He's so darn cute when he sleeps!

Frankie chews on his arm like it's a piece of fried chicken!

Can you hear me now?

Today we went to the ENT. When Frankie was still in the NICU, the first time, they were unable to do his newborn hearing screening. This is because he was 3 months old and knew what was going on. As soon as the lady tried to hook things up to his head while he was sleeping (you don't mess with Frankie when he's sleeping, he's like his mama) he screamed! So, that didn't work. While we were there they did a couple hearing tests on him so that we didn't have to do the ABR and sedate him. I wasn't down for the sedation for a damn hearing test when we know he can hear! They did have us worried just for a minute. They kept saying there was fluid in his left ear that may mean that he has a middle ear problem and he may have mild hearing loss in his left ear. Really?! Like he needs one more issue! Well, turns out, there is no problem. He passed his hearing tests! They do want to see him again when he is 10 months old. They say a lot of children have a small amount of fluid in their ear and it eventually goes away. If it doesn't then it may cause issues but they said they couldn't even see the fluid there was such a small amount, they could just tell there was some there because the inside of his ear wasn't as "shiny" as the other side and the way his eardrum moved. We're just thankful he's got good ears! It was the LONGEST APPOINTMENT EVER! They were so slow! Our appointment was at 2:30 and we didn't walk out until 4:45! They were just so slow!

Our next appointment is with newborn medicine and it's on Thursday next week. I will update then unless something else comes up!

Frankie is doing so great! We are so happy! I pray each day that he continues down this great path and that he grows stronger and larger each day! He's pooping well (big deal for an O baby!), keeping his food down, doing well with his physical therapy goals and he's a happy, flirty little baby! Thank you all for your continuous love, support and prayers! We can't do it without you! Much love!

Yesterday's Surgery Appointment

Hey everyone! So, we took Frankie to his pediatric surgery appointment with Dr. Keller (literally, a lifesaver) today. Here's how it went:
-The hernia's: They're obviously still there and need to be taken care of so that they do not become incarcerated and cause more issues that are unnecessary. The plan? To tackle them in 3 months if Frankie doesn't throw us anymore curve balls (no pun intended!). Our next surgery appointment then isn't until April 19th. At this appointment Dr. Keller will assess Frankie and we will also speak with an anesthesiologist about how they will drug the poor baby. Since Frankie has icky lungs and a hole in his heart he has to have clearance from cardiology (Dr. Grady) to be put under. My hopes? They can give the little fella a spinal (it's been done for this procedure before) instead of knocking him out completely and putting him on a ventilator. Dr. Keller just wasn't sure if they could do the spinal because of his O. So, we shall see. I'm hopeful they can do it! :)

-The O: It's looking great. It's still larger than when we first brought him home, but it's smaller than it was right after surgery. It's just going to take time so shrink up again since we had to start all over after surgery. We hope to start compression wrapping the O after his hernia surgery if his breathing is still doing well and getting better. We will be compression wrapping it with an Ace Bandage and this will start pushing things back into his abdomen. The reason we are waiting until after the hernia surgery? Because if we start pushing down on the intestines and such, they are just going to be forced down into the hernia making it worse and possibly incarcerating it. Damaging intestines is not the way to go here. That just makes for another surgery that is very serious. As for surgery for the O itself, the surgeon doesn't think that he will be doing Frankie's first closure surgery until he is 2. This is fine. This gives Frankie time to really grow, grow out of his pphn and for us to aggressively wrap his O. He also thinks it will take a couple surgeries to close him up. We are hopeful that one does the trick. Obviously things could change and we could do it sooner or later but this is just his idea. I believe in his idea because he gets paid the big bucks for a reason and has seen many of these!

-The feedings: Frankie is still uninterested in taking a bottle. He will latch onto it better but doesn't like it when anything comes out of it. Therefore, he's still on an NG tube. I'm very hopeful that we can start cereal and baby foods next month and that someday he will be best friends with his sippy cup.

-PPHN- We do not actually see the cardiologist until Feb., 28th. When we see him he will do an echo to see how things are looking. The plan for the moment is to leave Frankie's dose of Sildenafil (Viagra) where it is at and let him grow out of it. The same goes for his Lasixs (diuretic). As for the oxygen, hopefully by this Spring he will be off of it. That is our and the newborn medicine doctors hopes. As we all know very well, Frankie is on his own schedule and does things at his own pace. We call this, "Frankie Time". As Dr. Keller so well put it, "Frankie is writing his own chapter in the omphalocele book."

Frankie is getting physical and speech therapy once a week from the therapists and daily from me. He's not a huge fan of the tummy time but it will get better. He's got great head control, loves sitting in his Bumbo seat, and we are working on reaching out to grab toys. He's doing well! He really enjoys his books, too!

Don't forget to sign up to walk and donate for Frankie's March of Dimes team! I have posted the link to my Facebook page. A BIG thank you to those of you who have already donated to this fantastic cause! That's all for now. Much love!

Pediatrician Appointment today

First off, Tank is 4 months old today!!!!!
Today we took Frankie to see his lovely pediatrician, Dr. Terrill. She's such a great lady! He had lots of smiles for her! Let me just summarize what we're going to do/what we talked about:

-Feedings: The dreaded feedings.... Today, Frankie's feeds went up to 102ml over 4 hours. He is getting 34ml/hr for 3 hours and then a 1 hour break. 30ml = 1 oz. So, he is getting a little more than an ounce an hour, but his breast milk is still fortified so that he is getting accurate calories to grow. What we need to start doing is get his feeds to more of a bolus feed. A bolus feed would be the entire feed over a 30-60 minute period, as if he were taking a bottle. Joe and I are going to work on this slowly, very slowly, so that he doesn't get too much volume too quickly. We have to slowly stretch his tummy. As for baby food, not just yet. I am totally bummed about this. I wanted to try so bad! More than anything, I want this child off this damn NG tube. Spoon feeding is just one step closer to that. I know we still have a ways, but I really wanted to give it a go. We will reevaluate next month when we see her on the baby food situation. I am still trying to give him a bottle. Yesterday, I switched back to the Born Free bottle instead of the Dr. Brown's. He latched on great and took a tiny bit. It's just when he gets the milk in his mouth he kind of panics like, what the hell is this?! I am also doing "tastings' with his binkie where I dip his binkie in breast milk and then he sucks on it. I also am still giving him tastings from a cup. On Sunday, I bought him a sippy cup. I have been giving it to him empty so that he can become familiar to it and also chew on it! He's been chewing on his thumbs and fists a ton, which leads me to the next topic!

-Teeth: Frankie has been gnawing on his thumbs and fists lately and has been a bit cranky. Dr. Terrill took a look at his gums and sure enough, on the bottom you can see the two little slits where teeth will one day pop out. He may have these slits for a few months or a few weeks before teeth come out. Each child is different, but there's definitely something going on in there!

-Weight: Frankie now weighs in at a whopping 10lbs 14.5oz! Go Frankie! He is still small for his age and doesn't even make it on the growth chart with all the other babies :( but for him, he's doing swell! I'm excited that he's packing on the pounds (more like ounces)! Grow Frankie, grow!

-Sleep: Frankie sleeps GREAT, at night. So not complaining about that! But, during the day, he doesn't get adequate sleep. He should be taking 4-5 naps a day and they should be at least 45 minutes. If it's less than 45 minutes it's not "good rest". Frankie usually takes one good nap for about an hour or so, but that's it. Otherwise they're little cat naps. I am going to start getting him on a routine and laying him down before he's just too exhausted. Dr. Terrill made a good point... if he's yawning, we've already waited too long to put him down and he may be over tired and we missed our window of opportunity for a good nap. The key is to lay him down before he's overly tired. I'm making a schedule now! It's hard because usually the nap schedule coincides with the feeding schedule.... well, he's not on a bottle, so it's tougher. We'll make it work!

-Overall: Frankie looks great! He's a strong boy who is otherwise developing normally besides his cute belly! We go back to see her next month and reevaluate everything again!

Next appointments:
Tuesday Jan. 24th- ENT: we are going to the ENT for the first visit before his hearing test. That's all this is. No ear, nose or throat issues. Just need a newborn (well, not so newborn anymore) hearing test.
Thursday Jan. 26th- Surgery: Checking up on his O and hernias.
Thursday Feb. 9th- Newborn medicine: This doctor (Dr.Phil, no joke) rocks! He took care of Frankie while in the NICU and we will go see him to follow up on feedings and oxygen and such.
Tuesday Feb. 21st- Pediatrician
Tuesday Feb, 28th- Cardiology- Check on PPHN and ASD.

That's all for now! I will update whenever I can and definitely will after each appointment. Thanks for all your love, prayers and support! It's very helpful to us three! Love to you all! Now for some cuteness...

Oh yeah! Bustin' some moves!

Frankie moves so much in his sleep! He was wedged in between his bumpers before Joe moved him!

Sleeping on dad, too cute!

I don't even have a caption for this, besides, HAHAHA! Too sweet.

Sleepy face, just waking up.

Short nap after a fit.

Starring at the tv like it's nobodies business! LOVE this picture!

The good life.

The past 2 nights (almost 3) have been so great! Frankie is the best baby ever! Sleeps 12 hours at night and wakes for about 5 minutes to get a diaper change, then back out. He's amazing. Enough said.

Frankie is still handling his feeds well and is on all the same medicine. We are going to the pediatrician on Tuesday and we have surgery, ent, cardiology and newborn meds later this month into early February.

Frankie's oxygen still sits at .5. His saturation sits at 100 all the time which means we can probably ween him down once we get the okay from the doctors.

Frankie has started to giggle! It's the best sound in the entire world!! I tried to capture a video but when I got my phone out it was distracting him. Hopefully I can get one soon.

Don't forget.... If you come to visit PLEASE:
- wash your hands upon entering the house with soap and water. After that you may use hand sanitizer. Soap and water is just what's best.
- if you have been exposed to ANYONE that has been sick, even though you are not, please be kind and stay away. You may be carrying it. We can not risk the tank getting any upper respiratory infection or anything else for that matter.
- if you have been sick, please make sure you feel well for a couple days before coming by.
We just want what's best for Frankie and being healthy is what's best. Seeing him as sick as he was once was terrifying. I don't want to do that again!

Thank you all so much for your support and prayers! Here's some cute new pics of tank.

Thursday is the day!

If things keep going as well as they have been, we will be bringing Frankie home again on Thursday! :)

His oxygen is currently at .6 and his saturation is 100%!

We already know how to administer his Sildenifil and Prevacid, now they just need to show us how to give him Lasixs and his potassium. They will be given through his ng tube just like the other meds, it's just the amount give and with or without food.

Broviac comes out tomorrow!

Let's pray all keeps going well and when we get home, we stay home! Love to you all!