Saturday, December 29, 2012

Tummy Update

Well, we haven't even really talked about Frankie's tummy too much recently! It has been on the back burner for so long now! There isn't any new info that needs to be said but I figured we would post some pictures of his tummy so that everyone can see how it has progressed. When I took him to the surgeons a couple months ago, Dr. Keller said that he is still far too small to start any repairs. I am taking him back in February, just for another check up, and I'm sure they will say the same thing. He said he wouldn't consider a repair until he is AT LEAST two. I can see it being longer just because Frankie is so small. But, who knows! As normal, we are on Frankie time! And we have to do what is best for him! Shoving everything back in when he's not ready is the worst thing we can do for him. I don't want him to be hospitalized for a long time again and come across more complications. Anyhow... Here's some pictures. Ps- Yes, I was slacking at the crack of dawn this morning and my cloth diapers were in the other room so I grabbed a disposable!
 Completely unwrapped, hanging down because he's standing up.

 Wrapped in Xeroform and then gauze.

Complete! Last step is to compression wrap with an Ace Bandage. 

We are so thankful that Frankie has been doing so incredibly well! And that his O has reduced in size! He is SUCH a miracle! And we are thankful for all of you each and everyday for praying for him, continuously! Much love!

Thursday, December 20, 2012

Food, food, food!

If only Frankie loved it as much as I did! Hopefully someday soon!

Over the last several days, Frankie has taken to eating a little better. Well, for him, it's a huge step. I'm very hopeful that this is a step in the right direction! About a month before his asd repair, I took Frankie to Children's for a feeding evaluation and was not happy with the outcome. It just wasn't what I had anticipated and I was not impressed with the staff. I must say, I was pretty heart broken because we do everything through Children's and I was pretty bummed that this is one thing I'd have to find elsewhere.

Today, I took Frankie to Cardinal Glennon (another children's hospital in Stl). I felt like I was cheating on Children's, but hey! You gotta do what you gotta do! I was super happy with how things went today! The ladies were so very nice and offered some great suggestions and also reinforced all the great things we already do for Frankie! It's so nice to hear sometimes that you are doing this right! This is going to be a slow moving process for Frankie but he is finally showing signs of interest and this is a window of opportunity that we have been waiting for and we HAVE to take advantage of it! We made a couple small changes to Frankie's feeding schedule. I'm going to implement them daily and we have a follow up appointment on Jan. 3rd to check his weight and see how this is working for him and make adjustments as needed.

Tonight, I sent out an email to Frankie's wonderful First Steps team. These are the gals that come out to the house and help with Frankie. Ellen is Frankie's occupational therapist who comes weekly. Angela is Frankie's physical therapist who comes twice a month and Nancy is Frankie's dietitian who comes monthly but I speak to frequently through email, text, phone. In the email I addressed how Frankie has been lately (his Ot has seen it and agrees!) and my concern. My concern being the amount of time we see Ellen. Since we are in the "now or never" stage, I think it is best that Frankie gets bumped up to twice a week with Ellen until he gets the hang of things. Once I get an initial email reply, I will also suggest reducing pt down once a month since Frankie is doing so well. That may not happen until March but I think his ot visits need to be increased asap.

Overall, I was impressed with Cardinal Glennon's feeding team today and I'm praying HARD that Frankie is making his first big steps to oral eating! He's taken to a few foods recently:
-club cracker
-peanut butter
-thin sliced turkey

He eats these in small amounts but they are amounts!

Thanks for all the positive thoughts, love, support and prayers! FRANKIE CAN DO THIS! We can't wait for the day that we say GOODBYE to the ng tube!

Tuesday, December 18, 2012

15 month update!

Frankie DiFranco is 15 months old! I can not believe it! He has changed so much since he turned 1! What's new with Frankie... Let me name a few things:
-He's looking much more like a little toddler boy! It's freaking me out!
-The toddler attitude is in full affect! And, I wouldn't have it any other way. It's part of development and there are some hilarious moments that come pouring out of this bambino now! I can't get enough of him!
-HE'S WALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (He actually accomplished this at 14 months to be exact!)
-He's starting to stand, without help, in the middle of the floor (he did it twice now today!).
-His vocab is expanding rapidly! The kid says a ton! Here are a couple of my favorites:
     -I did it!
     -Love you!
-He has taken to a few books that I must read over and over and over and over and over and over. God love him. He's lucky I'm all about reading to kids. I will seriously sit here and read it as many times as he would like. It's so good for him! Favorite books:
     -Barnyard Dance by Sandra Boynton
     -One, Two, Three by Sandra Boynton (She's one of our favorite authors. She rocks.)
     -Tractor, a Touch and Feel Book
     -Elmo:Balls! (newest obsession)
-He's become more affectionate and lovely/cuddly. Really likes to give us kisses and hugs.
-He's sleeping with his little booty popped up in the air! Which means he's on his belly. Super cool for an O kid.
-He's more interested in "snacks" and "num nums". The last two days especially. He's liking to try more and more new things where he would typically stick with plain and or Honey Nut Cheerios. Hoping we are making a turn here!
-Teeth... HELLO molars! Frankie has 10 teeth now! That's right! 10! Now we just have to get him to use them more.... we are getting there!
-Singing songs! Oh yes! And doing the hand motions! Some favorites:
     -Patty Cake
     -Itsy Bitsy Spider
     -Wheels on the Bus
-Touching the Christmas tree while shaking his head and saying, "No, no, no". He actually gets himself in trouble a lot because he says "No, no" as he is going to do it. Like pull the books off the shelf. :)
-Whenever he wants to see the Christmas lights or he does see them he says, "Ights, ights!" The joy on his face is priceless!
-I love this one! He says "Co, Co" for uncle Cody. ADORABLE!
-Whenever he is stuck or in a situation he doesn't like or it's not going his way he says "Tuck!" to get my attention. I've taught him I don't respond to the whining. Mama's ears can't handle it. But, when you use your words, I'll be there in a split second!
-He is hiding behind walls to play hide and seek! Not just us hiding anymore, HE is hiding now, too! And he loves it!
-This will melt your heart.... Reaching up to you when he wants to be picked up.... How could you EVER say no?! Oh, that's right I don't (I may regret this one day but until then, I'm soaking it up!) Those big, blue, sweet eyes! Ugh... Gotta pick that baby up!
-If you aren't paying attention to Frankie and he wants it, lets start counting how many times he will say "Hi!" and bat those pretty eyes at you! He is so good at salutations I tell ya!

15 month pediatrician appointment today:
Dr. Terrill is impressed with Frankie! She said he looks fantastic! :) This makes me oh-so very happy! She loves that he is walking around and how well he is doing it! He is in the 30th percentile for height! CAN YOU BELIEVE IT?!  We hit the charts on something! Woohooo! His weight on the other hand is low. 18lbs 5oz. But, his height has continuously increased which is what is best! This means that he is getting enough calories to grow and isn't malnourished. She said children who are, do not grow in length. His head size is smaller too, but it matches his body! We don't want a little baby with a big old head! How funny would that be?! Haha! He's just perfect! It's hard to fatten him because he's so busy but I will at least work more towards some what of a gain in the next month-three months when we see her again. Frankie has two 15 month shots to get and his second flu shot. I will be getting him those within the next 2 weeks. His lungs and heart sounded great today, too. It was such a nice appointment! To go, do the normal and leave with no extra instructions and complications was really nice!

Next appointments: Thursday 12-20-12 we are going to Cardinal Glennon (So weird not to be at Children's but we need to try this) and are getting a feeding evaluation from their feeding team there. It will be interesting and I will keep everyone posted.

Umm... at some point in the next couple months we will see surgery again to check up on the the old hydrocele in the testicle. But, I think that's it! Until his 18 month appointment with the pediatrician! Praying all stays as well as it has been! We have been so blessed to be going down a good road for awhile! This will be our FIRST Christmas at home and we are beyong excited! I will definitely have a post after that for sure and after the feed eval on Thursday.
Thank you all for your everyday support, love and prayers! They mean everything to us!

Gettin' down on that french fry! Hell yes!
Pudding, peanut butter and cracker, OH MY! :) So much fun!
Yup, that's my son!

Tuesday, November 27, 2012

Tis' the season... For colds that is!

Yes, this is a repetitive, protective mama bear post, but someone's gotta do it.

Trust me. I know how adorable little Frankie bear is. All I want to do is kiss and kiss and kiss on him. And squeeze him! And I do, but I'm his mama. Lucky me! :) But, after going through Thanksgiving and with Christmas just around the corner, I can not stress enough how important it is for Frankie to remain healthy this cold/flu season. If we are to make it to all of the family events this season, everyone and I mean EVERYONE must help us out. That being said, please, please, PLEASE....
- Wash your hands! And often. It's not only good for Frankie but for you, too! And everyone else around you. Good hygiene isn't a bad thing folks! Especially after using the restroom. Come on now, do I really need to be telling people this? Apparently.
-Kisses. This is tough. Frankie is so sweet and will throw out a kick to just about anyone who asks but, I think we need to be a little more careful with all the people we have been exposed to lately and who they've been exposed to and so on. It's endless.
-If you feel a little puny, we will see ya next time! ;) No worries. Tomorrow is always another day.
-If you have been around someone who's sick or not feeling well, we will see ya next time. Tomorrow is always another day.

I know I may sound crazy to some folks but you have to understand. My child isn't the "typical" child and I have to do what's best for him. As the cardiologist stated himself, "His lungs aren't in the clear yet." That means we still need to be careful so that we don't end up hospitalized again. That's not fun and can be very serious. That's why Frankie gets the RSV shots again this season which cost $5,000 a pop (1 a month for 5-6 months). Thank God for health insurance. But, they only give these shots to the children who are truly, truly in need.

Yes, he needs to be exposed to some things on order to build his system. He has been exposed. Over and over. That's why I write this.

So please, say what you will about this mama, just help me keep my child healthy so that we can see you through the holidays and everyday. Thanks a bunch! I sincerely mean that! Much love!

Thursday, November 22, 2012

Frankie's Appointments on 11-15-12

Hey all! Sorry I am just now getting out this update on Frankie's two appointments he had on Thursday last week! Overall, everything went PERFECT! Our first appointment was with pediatric surgery...

The reason we went to this appointment is because we were concerned that Frankie's hernia had returned in his right testicle. Joe, the pediatrician and I had all tried to reduce it with no luck (we didn't try too much because it obviously doesn't feel well to have someone squeezing your jewels). The pediatrician just said to go see surgery unless it starts to change colors then go to the ER. Dr. Keller (surgeon) tried reducing it as well with no luck. He was actually pretty bummed about the entire situation. He said, and I quote, "If there is a loop of bowel in there, someone is going to have to wipe tears from my eyes because I don't know what to do with this kid." Eeek. That was hard to hear. Dr. Keller doesn't feel comfortable doing any sort of surgery on Frankie at this time. Also, if he was to go back in and fix that hernia, there is a pretty good risk of damaging his ball.... We were sent off to get an ultrasound of the family jewels to make sure they looked good. THANK GOD, THEY LOOKED GOOD! Frankie has a hydrocele in his right testicle (fluid) and it should go away on its own. We will return to see Dr. Keller in 3 months to check up on it. Where does the fluid come from? Since Frankie has recently had an ear infection and a runny nose, a lot of times they retain fluid down there from being sick and it will eventually go away.

Neonatology: We went for Frankie's one year developmental testing. The Baylee test is what they did. Frankie is not delayed at all! It's so amazing! His doctors were impressed! He has been through so much this last year and has spent an awful lot of time in the hospital and I am just so happy and impressed with Frankie that he isn't behind in any area! He is very close to walking! He needs a big boost in confidence but he is SO close! Joe and I have gotten him to take 4 steps at the most at a time. He does a couple here or there. Of course, Frankie is small and they would like him to be larger but I think his doctors are starting to realize that he is just a little (but mighty) guy! I will be speaking to a cardiac dietician hopefully Monday about the amount of calories Frankie should really be getting.

I do believe that is it! HAPPY THANKSGIVING! We love you all so much!
Frankie was passed out when we arrived at the hospital for his appointments! We arrived at 1030am, I had to carry him in and push his stroller. This is in the waiting room. He didn't wake up until they weighed him! And, we didn't get home from our appointments until 4pm-ish. LONG day! He did great!

Tuesday, November 13, 2012


Today, my mom and I took Frankie to see Dr. Grady (cardiologist) for his final follow up on his asd repair.

First, the fellow came in, asked lots of questions, took a listen to him and said he looked and sounded great. Dr. Grady came in and then agreed. We were then sent off to get an echo to actually get a picture of how things are looking.

Frankie did great during his echo! He usually doesn't enjoy them but this time he laid in my lap and we watched a couple of his favorite music videos on my phone. When the doc came back with results I was extremely impressed with my child! I just couldn't believe it! Frankie's heart looks fantastic and his lung pressures do, too! We are not in the clear of the pphn yet but his pressures were certainly low enough that they couldn't measure them through the echo. This is tremendous! I mean, just 1 1/2 months ago Frankie was on oxygen, extra doses of meds and was having a hard time breathing! Now he is off of oxygen and they actually eliminated a medication today and dropped one of his doses of Sildenafil!GO FRANKIE, GO FRANKIE, GO FRANKIE! This kid is a freaking all star! I can't wait to see what his life entails!

I asked about his pphn and since it is getting better, the only real way to get a good look at it at this point would be to do another cardiac cath. They do not have a plan to do this, at least not for now. I'm sure we will in the future. We don't have to see cardiology for 6 months! That's right, 6 MONTHS! I almost peed my pants! Love this kid.

Frankie does have two other appointments this week, too. On Thursday morning I am taking him to see pediatric surgery because, unfortunately, his hernia has returned on one side. Joe and I are totally bummed... one more damn surgery. Ugh. So, Dr. Keller (surgeon) will be taking a look at that on Thursday morning and give us his opinion. Also on Thursday in the afternoon, Frankie will be having his one year appointment with neonatology. This appointment will take awhile. They do all of his screenings to see where his development is. He is doing this one a couple months late due to his asd repair but it's okay! Needless to say, Thursday is going to be a long day! Not sure how we are going to fit a nap in, but I will work it out!

That's all for now! Much love to you all!

Tuesday, October 16, 2012

ASD Repair Follow Up

Last week, Frankie went and saw cardiology. They just took his height, weight, blood pressure, a quick listen to his heart and a look at his incision. All of that went well! We talked about how he has a lot more energy and a bit more interest in food, too. Now is the time for us to be aggressive with his feeding plan. Around Thanksgiving, I will take Frankie back to cardiology so that they can do his echo and EKG. They wanted to make sure he was completely healed before doing this. Healing time is 6-8 weeks. He's currently 3 weeks post op!

Today, Frankie saw his pediatrician. She was impressed as well with how great Frankie is doing and looking and how good and different his heart sounded. Frankie is on the smaller side for his age but he is still growing really well. He's a little over 18lbs now. She too, told us to be aggressive with his feeding now and do our best to get him off of the dreaded feeding tube. Of course it's easier to feed him this way but it causes so many other issues and annoyances. Frankie does have his first ear infection in his right ear. I'm very bummed and unhappy about this. I'm 99.9% sure it came from his Little Gym experience last week. It was nasty and I was very displeased with it and am even more so now. He's on antibiotics and doing well. You never would've known he had one! Just a stuffy/runny nose and a watery eye.

That's pretty much it! He's doing really, really well! Definitely a Tank! He's close to walking, too! He just needs a bit more confidence! Almost there!

Next appointment: 3 weeks to see the pediatrician again about his ear. After that, it won't be until we go to cardiology around Thanksgiving.

Much love and thanks!!!!!

Tuesday, October 2, 2012

Mended heart maniac!

We've been home now for three nights. When we brought Frankie home on Saturday afternoon, he was really excited! We let him play for awhile before lying him down for a nap. Let me tell you a little something about Frankie's sleeping habits...
Typically, Frankie is a great sleeper. When you lay him down for a nap he will play until he falls asleep, no issues. He also sleeps through the night, no issues.
Saturday, I had to rock Frankie to sleep for a nap, drive him in the car to fall asleep in the evening (he just kept crying and crying in his bed) and he woke for several hours crying. Sunday was a repeat. Very short naps, waking a lot at night. Joe and I feel so awful. We tried any and everything possible. As soon as we would lay him down he would cry. Like he was afraid they would do something to him or wake him to poke at him. It's heartbreaking. All we could do is reassure Frankie that we were home and we were here for him. Yesterday, he fell right asleep for a nap and talked himself to sleep at night and slept! He slept GOOD! He woke one time at 115am for a split second. I put his blanket on him and he went back to sleep. I'm praying for his sake, that we are getting through the sleeping troubles and that he's no longer afraid. I mean, he did just go through a traumatic event.

Frankie has been even busier than he used to be, if you can believe that! He's pulling up on EVERYTHING! Scaling the walls! He's extremely close to walking. He has more energy, stamina and less fear of doing new things! Frankie has also been more in to eating by mouth! Joe and I are so excited! He will try anything and put food in his mouth! Yay! Praying this stays this way and we are on our way to saying goodbye to the ng tube! HOPE, HOPE, HOPE!

Frankie still has bruising from his Iv's and central line. His incision is looking great! By next week we won't have to bandage it up anymore.

On October 11th, we have Frankie's follow up appointment with cardiology and the 16th we go see his pediatrician.

Overall, he's doing amazing. I just can't believe it. He's an absolute inspiration and is incredibly strong and resilient.

Joe, Frankie and I are beyond thankful for all of you. We wouldn't be able to get through any of this without all of your love, prayers and support. From the bottom of our hearts, THANK YOU!

I will keep everyone posted with anything new and most certainly after his follow up appointments.

Much love!

Wednesday, September 26, 2012

Emotion: A state of feeling.

If only we could turn emotions off. If only it were that easy. Where do I begin?

The two nights before Frankie's heart surgery, I cried and cried. Almost uncontrollably. Thinking about what was to be done to my sweet baby was absolutely gut wrenching. Made me want to vomit. Took my breath away. Made me wish it were me instead of him. I tried and tried to take things one day at a time but what was to happen on the 25th was inevitable and I couldn't ignore it, even if I tried.

Tuesday morning, day of surgery, the 25th: We woke Frankie up about 530am. Little buddy did not want to wake up! I can't say I blame him. But he is hard to wake when he isn't ready. Once he was awake, we bathed him with this special hospital soap they had given us. It was just a quick bath. We then packed everything up and headed out the door. Upon arriving in the parking garage, Frankie had fallen back to sleep and was a little peeved that the car stopped moving. Of course, as soon as he saw other people in the hospital he was his bright and smoky, flirty self. He was actually in a great mood! We checked him in to surgery and sat in his room while the docs floated in and out and prepared to take him to the OR. They gave him some versed so that he would be loopy when they took him from us. He played like a mad man in the pre-op room! Cruising all over! Eventually, the anesthesiologist asked for us to give hugs and kisses... This was extremely, extremely hard. Poor little guy didn't know what he was getting himself in to. I handed him off to her and he helped push his own be down the hallway, waving bye bye as tears streamed down my face. I walked out in to the waiting room and lost it, completely. My mom had just walked up and ran back to see him real quick. He was excited, as usual, to see her and gave her kisses. Once I collected myself, I went in to his waiting room to wait on the first call. They took Frankie back at 8am.

First call, 930am: The OR nurse called and said that he did well going to sleep. He didn't get upset until they out the gas mask on him and at that point, he got loopy. She also said they had just made the incision and all was going well thus far and he would call me back in 1.5 hours.

Second call, 1130am: Essentially, the repair was complete. They closed Frankie's asd with his pericardium. This is the sack that is around your hear that isn't needed. They took it off and used it to close the hole instead of using a man made gortex patch. Frankie's entire atrial wall was about 12mm. His hole was 8-10mm. Almost his entire atrial wall. They ended up leaving a small 3-4mm hole as a pop off valve for his extra blood to go. His body is used to having that and if they would've closed it completely, his lung pressures would be extremely high. Also when she called she said that he was coming off of bypass (heart and lung machine since they had to stop his heart). The next step was for the cardiology team to come down and take "pictures" of his heart and make sure that everything looked good and was doing what it was supposed to be doing. Then, they closed his chest back up.

1230pm: Dr. Boston (surgeon) came in to tell us that Frankie's repair was complete, all went well and that he was in recovery where they would extubate him and take him up to the CICU (cardiac intensive care unit). Once he was settled, we could see him.

1:30pm: We FINALLY got to see Frankie! It was, once again, emotional for me (I wonder how I would've taken this if I weren't pregnant?!). I washed my hands and quickly walked up to his bed. He opened his eyes, saw me and started to cry. Joe and I quickly comforted him and he was asleep again. When we arrived try had NO pain management schedule for Frankie. It was morphine "as needed". Are you flipping serious?! I quickly said this wasn't going to work. The kid just had his sternum opened up, heart stopped, repaired and started back up again and then wired back together! What the fuck?! Dr. Boston came in shortly afterward and was asking why he wasn't on numerous things and then they started things up. But at this point, he was already behind, thrashing and attempting to cry. He couldn't exactly get a cry out and ended up holding his breath so long he would turn blue. No shit, full one blue. It was terrifying. Needless to say, we ended up playing catch up for HOURS.

What's he hooked up to?
Frankie has an art line in his wrist that measures his blood pressure constantly. At first it was elevated as his body had to adjust to the new blood flow. They put him on meds to lower it. Currently, it's great. He has an IV in each arm, just in case. He has a central line in his neck that they can draw blood from (no sticking!) and it gets meds into his system faster if necessary. He also has a small chest tube that is draining fluid away from his chest cavity. The output of that has been good. He's on a mild sedative drip, morphine occasionally now (it was hourly) and toradol for pain. They couldn't give this at first because its similar to ibuprofen and would mess with clotting and increase bleeding from his chest tube. He had a catheter for a bit but no longer does. And he's on his usual oxygen. As each day progresses, we will get rid of some of this junk! Hopefully SOON! He isn't digging it!

7pm: The wonderful nurse Tammy comes on for the evening! We are so thankful for her! She got things under control and was extremely sweet to our little Frankie. We would keep her forever if we could!

Joe and I slept in 2-3 hour shifts on the fold out chair in the room. We knew the first night would be tough and that Buddha would need us to be on top of things for him. So, we both stayed (one of us is always here, we both just cant sleep in here. There's no room. One of us, usually Joe, has to sleep in the parent lounge.... Bleh) and comforted him as much as possible.

As of now, he is resting well. He isn't moaning, groaning or crying out. Thank God. We are going to put his ng tube (feeding tube) back in and start him on pedialyte. Why they didn't put it back in when he was still asleep after surgery is beyond me. This is just going to piss him off. Hopefully not too bad. But, he needs to eat. It's been 32 hours since he's had anything to eat. Which could cause some of his discomfort, I'm sure.

I'd like to thank you all from the bottom of our hearts for all of the love, prayers and support. It has been far beyond all that we ever expected. We are truly, truly blessed to have such amazing support in our lives! Our support group is larger than I can ever imagine! THANK YOU!

Here's a couple pictures:

Saturday, September 8, 2012

Let me remind you....

Hey everyone!

Since Frankie's heart surgery is just around the corner (Sept. 25th), I wanted to just send out a couple reminders about Mr. Frank and how important it is to keep him healthy.

Frankie has a lung disease, PPHN. When he gets sick, it is ten fold for him what it is for the "typical" child. That being said... It is EXTREMELY important to remember to wash your hands around Frankie. And, if you have been exposed to someone who is sick or you aren't sure if you're fighting allergies or a cold, it's best to steer clear until you are all better!

Second thing.... smoking.
Second and third hand smoke: People smoke, I get that. Here's my thing... if you do it and your clothes reek in smell of it, please do not hold my child. It affects him and my biggest concern is the affect on his respiratory system.
Third-hand smoke can remain indoors even long after the smoking has stopped. Similar to low-level lead exposure, low levels of tobacco particulates have been associated with a higher prevalence of ear infections and respiratory symptoms, as well as cognitive deficits among children.

In short, the same chemicals that leave a stale cigarette odor on clothes and upholstery also can be swallowed, inhaled or absorbed through the skin of non-smokers. Smoke residue may linger for hours, days or months, depending on the ventilation and the level of contamination.

If you want to smoke, wear a jacket while smoking outside so that you can take if off before playing Frankie and please be sure to wash your hands. THANK YOU!

We appreciate this more than anyone will ever know! Frankie just doesn't have the strongest of lungs. Someday he should! But until then, we need to take all necessary precautions to keep him as healthy as possible. Thanks for understanding and much love! 

Thursday, August 23, 2012

"O" Thank Heavens!

Today I took Frankie to see Dr. Keller (pediatric surgery) about his O. It was so nice to zip in and out of the doctor with nothing but good news! We've just been dealing with so much because of his heart and lungs recently that I was afraid there would be just one more thing to add to the list. His O looks great! There's a lot of good skin growing up and around it. We no longer need to use silvadine unless a spot becomes raw from him scratching at it (when we unwrap it, he scratches like crazy from the gauze itching him!). Here's what the doc said:
-Once Frankie is 100% healed from his heart surgery, they will bring him in and consider his first repair surgery.
-Frankie has to have the "okay" from cardiology before any repair work can be done. Once his heart is fixed, that's out of the equation but his lungs will need to be very, very strong. When they start to put things back in, it will feel like he's had three Thanksgiving dinners and it will make him breath harder at first, until he's used to it.
-When will this be? Not until he's AT LEAST 2. We must remember, we are on Frankie time. And he needs a good amount of time to recover from his heart surgery.
-After Frankie's heart surgery, he should be able to grow much better since his heart wont be working over time. Frankie still needs to be larger to put things back in. He's still a little guy.
-It will take most likely 2 surgeries for him to be closed up. Definitely not just 1.
-Most likely have to use a "patch" to help close up his abdominal muscles.

All of this is good news. Let's get Frankie through this heart surgery, give him time to GROW LIKE A WEED! And then we can start working on his tummy! Which is knows now and will pat it when asked and it's extremely cute. That's it for now! Love you all! Here's a picture of him doing his usual.... Hamming it up!

Thursday, August 16, 2012

Welp, it's been scheduled....

I just finished speaking to the gal in Dr. Boston's (heart surgeon) office and have scheduled Frankie's ASD repair. I think I might just have a stroke now..... Sept. 25th, 2012 is going to be the most terrifying day of my life. Lots of prayers, extra strength and all that good stuff for baby Frankie. Much love!

Below is a normal heart and that Frankie has. 

Who doesn't love extra parts on their heart?!

Hey everyone!

So, Frankie did really well during his cardiac cath! They gave him some versed before they took him back into the cath lab hoping he would be all chill when they tried to start sticking him. Well, not so much. They quickly learned that Frankie is an extremely feisty SOB and we like it that way! They also learned he's STRONG! That's what they get for messin' with Frank! Anyhow, once they were in there it took about 3 hours in total for them to do everything they needed. They placed Frankie in the CICU (cardiac intensive care unit) just for the night. Not because they thought there was a problem but just because he is awfully complicated! Wouldn't have it any other way. When we got to see Frankie he was sedated. He had to stay flat on his back and his leg straight for 6 hours! Well, we all know how busy the tank is and this was almost impossible! About an hour and a half into it, someone decided to try and wake up and party! They gave him more meds to sedate him and Joe and I gently held in him place for about 45 minutes until the meds did their thing. He wasn't upset or anything, he just sleeps on his sides and kept trying to roll over.

Extra parts you say?! Yeah, we were shocked, too! In a typical heart you have ONE svc (superior vena cava). The svc is a large but short vein that carries de-oxygenated blood from the upper half of your body to the heart's right atrium. Well, Frankie has TWO! Does this cause any issues? No, not in his case. His second svc does the same thing has the first. His blood still ends up in the correct place and is correctly oxygenated it just goes a special path to get there! They both work. Thankfully they noticed this (quiet frankly, I'm not sure how no one has ever noticed previously since we have had a million echos of his heart not to mention several fetal heart echos while I was pregnant) because when they go to do his ASD repair and put him on the bypass machine he just would have been squirting blood all over until they quickly found the problem. It wouldn't be life threatening, the surgeons would just have their panties in a bunch because they didn't know about it and didn't plug it up and it made a mess. But, fortunately, we know now.

Cath results: Frankie's pressures in the right side of his heart are moderately elevated. Typically the pressures are around 30 and his are 50-60. The right side is just working over time. They also tested his lungs to see if they would react to the gases they help lower the pressures in the lungs and he didn't respond at all. Not too sure what the means from here. Most likely that some of the medications they would use for pphn would not work, the inhalants. The cardiologist says that we need to schedule his ASD repair asap. I am awaiting a return phone call on the scheduled date. I asked if I could wait until after his first birthday and they said yes. So, I'm going to try and schedule it the day after his birthday, if possible. Once I have it scheduled, I will let everyone know. When speaking the the heart surgeon, he said that it is okay for them to go through with his ASD repair and that it will help his pphn, not make it any worse. Frankie's hole in his heart is approximately 8-9mm which is giant. His entire atrium wall is only roughly 11-12mm. When they close his ASD, they will be leaving a "pop off valve" (a small hole) that will be 2-3mm. The reason they do this is because his lungs are used to having that extra flow and need to relieve pressure. A lot of times in kids with pphn, they make a small hole. Currently Frankie's lungs receive 2.4 times the amount of blood that a typical child does. So, Frankie's repair will definitely have to be ohs (open heart surgery). They will put him on the bypass machine and his heart will not be beating for about 30 minutes. It's impossible for me not to tear up and get short winded while typing this or even thinking it. He will most definitely have to be intubated for this procedure but they plan to extubate while still in the OR. I pray that they can. Typically, a child is at the hospital for 3-5 days when they have an ASD repair. We were told to plan for 7-10 days. Anything sooner would be a plus! They don't anticipate his body rejecting the repair but there is always a small chance that it will and they will have to open it back up. Since they are leaving a pop off valve, I don't foresee this being a concern. During our stay, we will be in the CICU, at least for a few days and then possibly moved to 7 west (cardiac floor) until we go home. Just depends. I think that's it. If I think of anything else, I will update. Or if anyone has questions, by all means ask away. It was a lot to take in and I'm trying to explain it to the best of my ability.

The aftermath: Frankie is pretty bruised, mostly from them trying to put iv's in. He has a few small scratch looking marks where they went in to his femoral vessel in his thigh and it's also bruised there. But, he has bruises on his foot and hands, wrists from them trying to get iv's. Thankfully he was asleep when they did this, well all but one! 

I've just started rocking and rolling on Frankie's 1st birthday plans today since tomorrow he will be 11 months old! It's hard to believe!

That's all for now! I'm beyond thankful for all the prayers! LOVE YOU ALL!

Saturday, August 11, 2012

Cardiac Cath Scheduled

Hey everyone! Frankie's cath is scheduled for Tuesday at 1130am. We will be staying over night. I will be sure to keep everyone posted on how he's doing and of course the results. Keep him in your prayers. The procedure will take 2.5 hours if all goes accordingly. Unfortunately, he will have to be intubated for the procedure but they plan to extubate immediately. Thanks for all the support for our family! Much love!

Wednesday, August 8, 2012

PPHN is for the birds...

Here's what went down....

In mid June, Frankie and I both got hit with a pretty bad cold. I do not have PPHN so I bounced back from my cold and all is well. Frankie on the other hand takes a big hit. He went back on oxygen in the beginning of July. His cold seemed gone. He had no more symptoms but he needed some support because his saturation was dropping. On July 14th, we wound up in the ER because Frankie's saturation was only 89% (should be 90% or better) and he was on 2.5 liters of oxygen. When we arrived to the ER, they put him on 3 liters, gave him a massive dose of lasixs and did a chest x-ray. His chest x-ray came back fine and the lasixs seemed to help. The did lab work and his white blood cell count was elevated so they said it was due to him still fighting that cold, internally. They did give Frankie a steroid burst for 5 days and we doubled his lasixs for 5 days, too.

Since then we had his oxygen down to .5 liters but over the last few days to a week we have increased his oxygen thinking it would help him since he was breathing so hard. His saturation hadn't dropped but he was breathing very hard. Head bobbing, chest pulling. On Monday night I went to put him to sleep and he started crying very hard (not typical for Frankie). He was screaming like he was in pain, his face turned grey and his lips turned blue. I scooped him up out of bed instantly and he started to calm down. That's when we decided it was time to go to the ER.

We arrived to the ER at 8pm. It was an absolute zoo in there! I've never seen it like that before. People everywhere. It drives me crazy that people don't take their kids to urgent care for things. You don't need to be in the ER because your baby has a diaper rash! Seriously?! Anyhow, after calls to the cardiologist on call and some Nicu friends, we got into an ER room at 1015pm. They took a chest x-ray, things looked like Frankie's normal. The did lab work, all was well there. They decided to keep Frankie for observation because he was breathing very hard and they wanted to do an echo in the morning. at 330am.... yes, 330am! We got up to our room on the 7th floor (cardiac floor where we typically stay), did all the getting set up and went to sleep. Frankie slept off and on for a bit throughout all of this but not much. At 4am, I closed my eyes to attempt and I mean attempt to sleep. Sharing a room isn't exactly the most fun, but hey! What can you do? With frequent wake ups we were finally woken up for the day at 7am. Frankie slept solid the three hours, thankfully. By the time 8am rolled around there were a million damn people in and out of our room it was insane. Sleeping was no longer an option. The attending doctor came in (or it could have been a cardiologist fellow, not sure honestly) and said that Frankie looked good and that he didn't need an echo and we could go home that day. I immediately said that we weren't leaving without an echo. It was the whole reason we stayed over night plus observation. She said okay. The echo was done and Frankie was very upset. He was exhausted because of course, he falls asleep like a half hour before being called down for the echo and didn't stay asleep on the way down.   Echo results: PPHN seemed to have worsened. The right side of his heart was more enlarged, his septum more pancaked. They asked us to stay another night so that they could observe him again and so that the next morning Dr. Grady (cardiologist) and Dr. Boston (cardiac surgeon) could meet and discuss changing his medicine, doing another echo and the next steps in general.

This morning Dr. Grady came in and agreed that the echo showed worsening and that he wanted Frankie to be on a steroid taper for a month starting today. Dr. Grady also suggested that Frankie get a cardiac cath done so that they could accurately measure the pressures in the heart and lungs and to give him medicine and see how he would react to it. We had an appointment to meet with Dr. Boston today at 10am but since we were already there he was going to come up to our room and chat with us about his heart surgery, cath procedure and such. We were informed around 915am that Dr. Boston had an emergency case he was dealing with but we were assured that he would be up to our room at 10am. At 2pm, still no doctor. Another doctor said they paged him and hadn't heard back so she went to check on it to come to tell us that he was heading in to a scheduled surgery. Joe and I were a little annoyed with this. We are now scheduled to meet with him on the 15th at 1230pm.

We were discharged early today on the steroid taper and Frankie is to have his cath procedure within the next 2 weeks. They will be in contact with me soon to put him on the schedule.

Frankie is doing well. He's happy, crawling as he pleases! We just need to get that ASD repaired so that we can aggressively treat the PPHN. PPHN and the ASD counteract each other. What's good for the PPHN isn't for the ASD and vice versa. Once the ASD is repaired we can remove it from the situation and that way we know for sure it's the PPHN causing the breathing issues and not the ASD.

The last 2 days have been exhausting and I'm thankful that we are home. We love Children's Hospital but this visit was not the best visit we've had. It was just very unorganized and all over the place. Not the typical Children's Hospital that we are used to.

I think that's all for now. If anyone has questions, feel free to ask away. Thanks for all the continuous love, prayers and support. Much needed and we are so thankful for it! Love to you all!

The video at the bottom is Frankie sleeping in the ER waiting area. His breathing was awful.
Taking a much needed nap yesterday.
Kisses from daddy.

Sunday, July 15, 2012

Saturday in the ER? Why not!

As you all know, Frankie had been off of oxygen since Mother's Day. Well, around the beginning of July his saturations while he was sleeping kept dipping into the high 80's. The doctors want him to be 90 or better. We got new probes for the machine and a new pulse ox machine all together but it was definitely Frankie dipping down. We had started off just putting the oxygen on while he was asleep. As each day progressed he needed it more often and at a greater amount. I had called the doctors right away to let them know what was going on and had spoken to a nurse practitioner of PPHN whom I have never met, ever. We spoke briefly and she said that if things continued to worsen, call back. As things would have it, they worsened. A lot. For more than a week... yes, a WEEK. I tried calling back and speaking to a nurse or the doctor about what was going on. We didn't feel as if it were ER worthy just yet until yesterday morning. After calling and leaving countless messages with no return call, I got extremely upset. You don't fuck with mama's baby! Thanks to an amazing family friend who lit a fire under their asses, I heard back on Friday morning (Thank you Donna!). The cardiologist finally called (Dr. Grady) and I told him I didn't feel as if it was an error on his behalf or his nurses. I believe it was an error on behalf of who answers the phones for not giving my messages. The lack of communication left me dumbfounded! I could not believe it! I seriously was about to just drive down there and walk into the office! Anyhow... Dr. Grady said that if Saturday morning comes and he still isn't doing well, take him to see his pediatrician, have them assessed there. From there, they will call him and discuss the next steps....

Saturday morning:
At 8am I called the pediatricians office. Frankie's primary doctor was out of town so we saw Dr. Madden whom we love as well. He took a look a Frankie, got his saturation level, listened to him breath and then said..... It's not a matter of if you're going to the ER or not it's a matter of.... should I call an ambulance or do I think you guys can make it there quick enough! So, obviously we have a problem here! Frankie's saturation level was sitting at 88 on 2 liters of air! That's a lot of oxygen to be sitting low. Joe and I quickly packed Frankie up as Dr. Madden called Children's and warned them we were coming and as he put a call in to the cardiologist on call this weekend (who happened to be Dr. Grady! Boy, karma knows how to work, eh?!). Down to Children's we went.

ER: The first thing they did (as usual) was listen to Frankie. A couple people said his lungs sounded wet but the cardiologist fellow who has seem him lots (and he LOVES her. She's a pretty lady and he sits quietly while she listens to him breath and he did not do this for ANY other doctors that day!) said that he sounded okay. He also had a low grade temperature of 100.8. We shlepped Frankie over to get a chest x-ray. That came back good, thankfully! Frankie always has a little bit of backed up fluid in his lungs (not a lot just a little. In comes Lasixs for this reason) and his x-ray looked the same as his previous one. Next, they drew labs and inserted and IV. We waited forever for the lab work to come back. Everything looked okay except his white blood cell count was elevated. They swabbed him for 5 major viruses but it came back negative, but there are a million viruses. Since his blood count is elevated they suspect that he is just fighting a bacterial or viral infection. Frankie doesn't have a stuffy nose but he does have a mild cough. Frankie and I were both sick in mid June and they said this could be it lingering. Since he has complications, he will hold onto a cold much, much longer than the typical child. THIS IS WHY I NEED ALL OF YOU TO WASH YOUR DANG HANDS! I'M SERIOUS!

What's next: We increased his Lasixs to twice a day for 5 days and he was put on a short burst of steroids for 5 days as well. We go back and see his primary pediatrician on Tuesday evening and she will take a good look at him and reevaluate.

Today: He's doing so much better! He slept from 5pm yesterday until 6am today! And, is already asleep for his morning nap. He woke up in the best mood he has since this all started! He didn't wake up once last night! He FINALLY got the rest he's needed. He had been working so hard to breath that he wasn't resting well, not to mention he couldn't catch his breath and would frantically wake up screaming in terror. It was awful. But, he's on the mend and is doing much better today. Thank you God.

That is all for now! I will keep everyone posted of anything new with him and I will let you all know how the doctor goes on Tuesday. Much love!

So sleepy. This is just before he fell asleep. He only had one nap yesterday and it was an hour and in the ER.

 Waiting for the lab results to come back. Watching a little TV.

This morning. My happy Buddha is back!

Tuesday, June 26, 2012

Not much new...

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!

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!

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!

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!

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!

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!
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!
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!
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!