Tuesday, November 29, 2011

Day 73: Our emotions: Extreme joy!

It was a crazy day here in 519 at the Nicu! It started off with a heart echo. Let me tell you about that.... When Frankie first was getting his heart echos they said that there was a possibility of him having an ASD or a PFO. They kept looking and weren't sure. Well there was a hole and since he is 10.5 weeks now if it were a PFO it would've closed. So, it is definitely an ASD said his nurse practitioner today. This is okay. No need to freak out. There is nothing that they can do about it right now. He just needs to grow. There is still a possibility of it closing up on its own. It's not a major concern right now because his blood is still flowing correctly. If it doesn't close up, he will later have surgery to close it up. It's not an invasive surgery. They go in in a similar way as they would do to a cardiac cath. Once it is closed, that's it. No more issues, no more surgeries and he is good to go. And it is not the cause of his PPHN. That is in his lungs.

Frankie just got done with his 2 hour car seat test. He did well up until the last minute of being in there. He got pissed! He's out now, sweaty from being all bundled up but he's hanging out with daddy and hopefully mellowing out soon. Poor guy!

They also tried to do his hearing test today. He was so not having that! They usually do it on the babies when they are much younger but since he was here forever they were just trying to do it now. The babies must be asleep when they do it because put two electrodes on their head and then they play noises and watch the way the brain reacts to it. Well, since Frankie is a "big boy" (especially compared to most of the babies here) he woke up and screamed! As soon as she left, he fell asleep and was silent again. He just does not enjoy being messed with! Can't say I blame the kid! We will have to do his hearing test at one of his follow up appointments and they will have to sedate him a little to do it (wish they didn't have to sedate him). We know that he can hear because he responds when talked to and if you slam something he jumps and such but they still have to do it.

We got all of his prescriptions from the pharmacy and we have surgical supplies for his O until they can deliver the rest of them. Tomorrow morning, sometime before noon, they will be delivering his oxygen tank to the house. This will be the large one that we will keep up in his room that we can fill the portable tanks off of. Sometime after noon, the therapists from the Home Care Co., will be delivering the portable tanks, the feeding pump and his monitor to the hospital and show us how to use them. They are similar to what we use now so it will be a quick learning process.

We will have follow up appointments frequently with cardiology, neonatology, and surgery.

Yesterday we met with two amazing people! Lauren and Lance. They will be having a baby within the next week and a half that has a giant O! It was so nice to meet other people, in this area that truly know exactly what we are going through! Lauren had to go through all the testing that I did and it was awesome to talk to her and meet her since we both knew how it felt to ride on the O roller coaster! We will be keeping in touch with them on their journey and we can all support each other!  Frankie also met his great grandma Hogan yesterday! Very cool!


Love to you all!
The video below is crazy legs DiFranco! He loves to kick and coo at his mobile!

Monday, November 28, 2011

Day 72: Nervous: Anxious or apprehensive

We have been told that Frankie will be going to "the zoo" on Wednesday! That's if all goes well (all equipment is delivered in a timely manner) and Frankie behaves his cute self! Joe and I are beyond excited for this! Not only am I super excited but I am super nervous! I seriously thought I was going to throw up earlier! I was totally overwhelmed and scared there for a minute (or few hours)! I know that we will do great and everything will be just fine but this is a MAJOR step! This journey for us is still just beginning, too! We will still have to come up here for follow up appointments with the cardiologists, surgery and the neonatologists. At least we know that when we walk in, we will be walking back out with our baby.

My biggest fear.... Frankie getting sick. This is the fear that makes me the most sick to my stomach. Frankie getting an upper respiratory infection is very serious. Any cold for that matter could turn into something much worse for our little baby. So please, please PLEASE wait to come around Frankie if you have/had or have been exposed to something. I am dead serious about this matter and I will be that psycho, crazy mom about his germ exposure for awhile so please prepare yourself for it. PLEASE wash your hands before touching him and PLEASE call us before you come to visit because sometimes we are really busy with him, have had a bad day or just want time to ourselves. Especially when we first get home we are going to want to be alone with him, to get into a routine and to lay on the couch and watch t.v that we haven't done in 10 weeks. It's going to be so nice to start getting our lives back to "normal". We really truly, more than you'll ever know, thank you for understanding all of this!!!!

Frankie is still doing well today. The continuous feeds of 25ml/hr over night did not go over so well! He was way too full and over fed and was throwing up like crazy again. So, as much as it's going to suck, we will have to turn his pump off every three hours and then back on after an hour. I'm totally okay with it. It's about what is best for Frankie, not Joe and me. I'd much rather be sleep deprived than have an undernourished or throwing up kid.

All of his prescriptions and such have been ordered for us to go to "the zoo". I can't believe this is really happening. It's so surreal. Thank you all for all your prayers! They've been working so far and I know they will continue to work as we continue this amazing journey with this little fella. He gets another heart echo tomorrow to take one last look at everything before paroling. Love to you all!
PS- the video below is of Frankie hitting the toys on his mobile. I wish I could've caught him when he first started. He hit it on accident and then he kept doing it and cooing! It was awesome!

Smiling in his sleep. Dreaming of "the zoo" :)

Sunday, November 27, 2011

Day 71: Antsy: Agitated, impatient, or restless.

Joe and I want nothing more than for Frankie to be healthy baby. But, we are so ready to get out of here. Talk about Nicu-itis! We are beyond ready for Frankie to be 100% healthy and not have anything taped to his face!

Frankie now weighs 8lbs 12oz. Thankfully, his weight has been on an overall increase. That's what we have been shooting for! We talked with the NP today and the nurse and figured out his feeding schedule over night. We will only have to get up to refill the breast milk once and I can do that when I am pumping in the middle of the night.

Today was Frankie's first full day without steroids and he is doing well. His breathing and heart rate have remained the same. There are no other new changes or anything.

Short and sweet update. I'm tired. Good night all. Love to you!

Saturday, November 26, 2011

Day 70: Frankie is 10 weeks old!

Yes it's true... Frankie is 10 weeks old today! That means we have been in the NICU for a good old 10 weeks! Sheesh!

Frankie got his last dose of steroids at 8am this morning. I'm so nervous! Please send prayers his way that he doesn't go into a PPHN crisis! Pray that he does just fine without steroids and we can bust out of here! I have faith and a good feeling that all will be well, I am just a mother and worry! I had a worrying issue before I became a mother, now it's ten times worse (thank you grandma Swardson for that)!

Today, Nano came up this morning. Then my amazing Michigan family came by to say goodbye to the little fella. :( They head back north tomorrow morning. We will miss you Beth, Hannah, Ben, and Alan! Love you guys a lot! Frankie will miss you! As will I!

Frankie still spits up every now and then but it is just typical baby spit up. His O looks great. Still looking smaller and smaller each day! He is still on his Viagra (that's long term) and totally disinterested in bottle feeding. He is now 8lbs 9 1/2 oz.

Soap + water + 20 seconds of scrubbing = good clean hands that can touch my baby Frankie!

Frankie passes a lot of gas and sounds like a fart machine! I never thought I would be holding my baby, laughing so hard there's tears rolling down my face at the sounds his rear end makes. It is so funny!

Right now he's having a rough time staying asleep. So, I'm going to sign off and snuggle the little man. Love to you all and thanks for the prayers!

Snuggled up after a bath

Bundle of baby

Do it!

Thank you for letting us borrow this Sophia! :)

He was passed out!

Friday, November 25, 2011

Day 69: Counting down the days

We hope that everyone had a great Thanksgiving!

We're hoping and praying that baby Frankie stays on this path! If so, the zoo is in the very near future! Tomorrow morning at 8am, Frankie gets his last dose of steroids. They will then watch him for a couple of days, just to make sure that he doesn't go into a PPHN crisis and need something we can't provide him with at home. I have a good feeling that he will do just great without his roids!

There are no new changes with him today. He is spitting up much less. Actually at a normal baby rate at this point. Frankie had lots of visitors today and was worn out this evening! Granny Sue, Aunt Beth, Hannah, Asiah, Brad and Amber came for a visit today! Frankie is one popular dude! Tomorrow will be a busy day too, as everyone is saying their goodbyes before heading home early Sunday morning.

Joe and I have watched our videos that we are supposed to watch before heading out. On Tuesday, we are taking the CPR class and we have brought in Frankie's car seat so that he can do his car seat test. They will put Frankie in his car seat and monitor him for an hour to make sure that is stats remain high. They will also figure out the best way to put him in it since he has a big 'ol belly! Other than that, we should be ready to go! We do have the option of staying in the FPU for one night before heading out. This is a room where Joe and I would stay the night with Frankie. It's to see if we can handle it at home but have the nurses here just in case something was to happen. Not sure if we're going to do that or not. We still have to talk about it.

You must wash your hands before touching Frankie! With soap and water. And if you don't feel well or have been exposed to sicknesses, please avoid him for a bit! MUCH appreciated!

The Christmas lights are officially up and running! Frankie is going to LOVE looking at them! He's a fan of lights! Ah, can't wait! So thankful for this little man.... he's such an amazing, amazing gift!!

Love to you all!!!

Day 68: So much to be thankful for!

HAPPY THANKSGIVING! Joe and I could not be more thankful for our baby Frankie and all of our family and friends who have been our backbone of support thorough out this journey! We are beyond thankful for each of you!

Frankie had a good first Thanksgiving! He really missed being at Granny Sue and Gaga's house, but he did wear a super cute Thanksgiving outfit in the NICU!

Hannah and Granny Sue came to visit Frankie today. They hung out for awhile and brought up homemade chocolate chip cookies for the nurses. Thanks gals!

I talked with the doctor today and she said that Frankie is doing well. His last day of steroids is Friday. If he does well off of the steroids and his new feeding plan keeps going well, we should be able to go to "the zoo" mid-week to end of next week. Praying like a mad woman that this happens! We are on Frankie time, but he's been doing so well that I can foresee this happening!

Joe and I hung out with Frankie during the morning and day until we went to my mom's house in the evening for Thanksgiving dinner. It was delicious! We're so used to eating crap cafeteria food! Joe was surprised at how much food I put down, calling me a "machine". That made me feel great! Good thing I'm only 2 lbs from my pre-pregnacny weight or I would've felt like shit!

I hope that everyone enjoyed their Thanksgivings! Love you all!

Thursday, November 24, 2011

Day 67: Forgot to blog

Hey all! Joe and I spent the day with Frankie. We got here early and stay until 7:30pm before heading to my mom's house for dinner to see family.

Frankie is doing well. There were no changes yesterday. He spit up less which is good. We need to get this eating business under control, then we can peace outta there!

Hannah got to meet Frankie today! I'm so happy they finally got to meet. He told me he's been waiting patiently to meet her. Frankie also met Alan today. It was hilarious! Alan is so animated when he talks and Frankie just kept starring at him and taking it all in. Too cute!

So, no news is good news really! Sorry for the lame update. We will write a better one for Thanksgiving before eating turkey dinner. I will also add pictures to this blog once I get to a computer. I'm blogging from my phone.

Love to you all!!!!!

Meeting Uncle Al!

Wednesday, November 23, 2011

Day 66: Holy balls, Batman!

As you all know, we have been on a search for Frankie's family jewels since day 1. We've seen what we thought was one of them but it ended up being a hernia. Well today, my mother was saying to me that she noticed one of his balls yesterday when she changed his diaper! I was like, really?! I must not have been paying attention! So, when I got here today, I checked it out myself and I also told Joe and he took a look because he has much more experience with balls than I do, considering his has a pair of his own. Sure as shit, there's one in there! We know he at least has one now! And, as Frankie's father would say, "That's why the omphalocele has gotten smaller over the last few days! His ball came out of it!"

Frankie is back on continuous feeds. I was so not enthused about this when I walked in today. They were doing a steady 25ml an hour but he was still spitting up, which by the way, is really starting to piss me off. I just feel awful for the baby. Who wants to throw up that many times a day and the look on his face when he does it breaks my heart into a million pieces. Ugghh.... anyhow... Frankie's amazing nurse Amy is going to have him do 33ml and hour for 3 hours and then turn it off for an hour so that he can rest. We shall see how this works. We're bound to find something that works, right? Just so that something else can shift in his O and we can start all over again. It's the name of the game!

Other than that, Frankie has had a good day. He got to meet his cousin Ben today! I have a feeling one day Ben will be teaching Frankie all sorts of great, geeky things! :) I'm truly looking forward to it!

Have a good night everyone. Love to you all!

Me as a baby. No denying Frankie looks like me!

Looks like he's missing part of his finger! Haha! He's not, just to clarify!

Meeting Ben!
Hanging with Great Aunt Beth!