Monday, January 30, 2012

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!

Saturday, January 28, 2012

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!

Tuesday, January 17, 2012

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!

Saturday, January 14, 2012

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.

Tuesday, January 10, 2012

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!

Monday, January 9, 2012

Almost home! Again.

We were scheduled to bring Tank home tomorrow but it is going to be just a couple more days. Currently Frankie's oxygen is on .7. This morning it was at 1 liter. I just don't feel comfortable bringing him home on 1 liter of oxygen because our machine at home only goes up that high. So, if Frankie has a huge fit or a crisis, we wouldn't be able to go up any further on his oxygen. We could go up to 2 liters on his portable tank, but those are so small and it would only last a short time. Probably just enough time to get to the hospital. Hopefully, we will never have to do that though!

What are the goals before we head out again?
- Get Tanks oxygen down to a better amount, like .5. That way we have some wiggle room.
- Get his Broviac taken out (was supposed to be done today but there were communication errors). Can't wait for this to come out (even though it'll be a small, uncomfy procedure).
That's it!

Feeding: Figuring out Frankie's feeding schedule used to be an absolute nightmare! Well, thankfully, he is keeping ALL of his food down! He hasn't spit up since we came in with all this madness! We did have to switch his fortifier though. He was getting Pregestimil and it gave him diarrhea and was "dumping" nutrients. He is now on Neocate and is handling that much, much better! I figured he would because Neocate is for mega sensitive, allergenic children. He is gaining weight well now, too. Hopefully we will have a chunky baby soon! He just keeps getting longer and the only visit spotting getting chubby are his cheeks and hands! So cute! He still has his skinny bird legs (that are constantly in motion if not sleeping!). Frankie still doesn't want anything to do with a bottle (don't blame him) but he will take sips out of a little med cup! It's adorable. So, I'm hoping we can get him to drink out of a cup and get rid of this ng... Someday....

Sleeping: No issues in this department. Frankie is up more during the day. He loves to play! He enjoys playing on his back and cooing up a storm! His legs are constantly in motion and he loves the sound of his own voice. He also enjoys sitting in his bumbo seat because he can sit up like a big boy!

I do think that's it for now. Overall, he's doing swell! The kid is truly a TANK! Oh, I did start a March of Dimes, March for Babies team called Frank the Tank! I would love for you all to join me during this march! It's in April. I will give the link to our team webpage below. March of Dimes is so great! They primarily advertise helping preemies but they also help babies with birth defects as well. While being here in the Nicu they have done lots for us! They have taken pictures, given us snacks, drinks, even catered in dinners and such! They're great and I would LOVE to support them and rally as many people as we can to help babies, especially ones like my Frankie bear with O's. Toughest kids I know! Thanks all! Love to each and every one of you! Here's the link to the team page and some super cute pictures of Tank himself!

Wednesday, January 4, 2012

Frankie talks a lot!

Frankie has discovered two major things recently.... His voice and his tongue! And the best part? It's so damn cute! He just coos away and makes funny faces sticking out his tongue!

Frankie had a good day today! When I got here we worked on drinking breast milk. He still doesn't dig the bottle so we are trying cups. The cup we have found to work best thus far is a med cup! The actual cup for drinking is still a bit too big for him. He took 5ml from the med cup today! Gotta start somewhere! The speech therapist did suggest that we probably wait until 5 months to give him cereal just because he lacks experience with stuff in his mouth.

Frankie did a great time with tummy time today, too! Cutting a hole in foam had turned out to be a super idea! He tolerated it so well today and actually spent a fair amount of time doing it! He then continued to lay on the mat and attract every passer by with his big beautiful eyes and sweet raspy voice! He played a ton with ALL the nurses! He's such a stud.

He is still going strong on the 32ml/hr- on 3 hours off 1. We will continue this for awhile and watch him grow! And eventually keep increasing, too!

His air was down to .4 but we just tuned it back up to .6 because he seemed irritable and couldn't get comfy and sleep well. He's now resting great. We may have weened a little too much today but we don't know if we don't try!

There is talk of us going back home next week he if keeps up all the good work. So, keep the prayers rolling it!

I talked to Dr. Keller (surgeon) today and he said Frankie and his O look great! He said he just needs to "stay out of trouble" and hopefully we can start compression wrapping him as he gets bigger and grows out of his pphn. He did say that it would probably take a few surgeries to close him back up but we shall see. Time will tell!

That's all for now. Love you all!

Tuesday, January 3, 2012

Going strong!

Frankie is doing fabulous! Each day he is getting closer and closer to the old Frankie we brought home on November 30th.

Feeding: when we were home, Frankie's feeding schedule was 32ml/hr- on for 3 hours, off for 1. Currently we are at 30ml/hr- on for 3 hours, off for 1. By tomorrow morning we will be back at full feeds! Then he can hopefully start gaining weight more quickly. As he gains weight, we will increase his feeds as well. I'm also really hoping that once he is around 4 months old, that we can try cereal and work our way to food.

Oxygen: Frankie was taken off of high humidity today! He is on 1 liter, off the wall (home type of oxygen). His saturation was at a steady 100. Tomorrow we will start weening more and see if we can get him to .6-.5. At home we were on .2!

Lasixs: Frankie is now only on them once a day versus twice a day. This is also something they want to try and ween him off of before we go home, unless he absolutely needs it, then we can go home one it. It's not something we were previously on at home.

Sildenifil: He's still on this. Same amount. Same number of times a day. This is a medicine he will be on steadily for quiet some time.

He's pooping well, not afraid of his bottle today (that's nice but he still didn't take any of it), smiling and cooing a lot more! He likes to hear himself "talk" and he has found his tongue... Hilarious! He's such a happy little fella! We are very lucky! We are also lucky to have all his nurses! WOW! They're amazing and so many are becoming such great friends. So blessed!

I have made a March of Dimes team for the tank! Join it! Or donate! Whatever your heart desires. Do it 'cause it makes you feel good! Here's the link to his team.

Love to you all!!!