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!

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.

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!

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!

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!

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!

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!