Medical week here we come!

This morning I shared on Sweet Baby Shea that we have a big week starting. Tomorrow am we have a doctors appointment with our pediatrician. In addition to the 4 month shots (ug!) We have some concerns we need help with.  I'm hoping they are normal baby things, like the random rashes and the cradle cap. But I am concerned about his screaming in pain due to gas. Also the weight seems to be staying the same and even going down some. #allthemommyworries

Last week we met with an ENT and we got a confirmed diagnosis that Shea is tongue tied. So there are two types of fixes, one where they cut it with scissors in the office. Another option is lasering it, which is done by pediatric dentist.  I talked with the Sanger clinic in detail about which would be better for Shea. We are going the old school method...clipping occurs Monday. The hope is that his latch with nursing and his ability to eat by bottle will be much easier. Poor kid works so hard to eat, he is burning way too many calories. My biggest regret is not getting it looked at sooner, but honestly I had no idea. Two friends were listening to my frustrations and immediately voiced their concerns of Shea being tongue tied. I'm so thankful for them!

Next Friday we go to the cardiologist. I feel like we are there all the time but we love them, so I guess it's a good thing! This appointment we will be having an echo done and hopefully talking about the Glenn. My gut feeling is that Shea's VSD is either closed or close to being closed. We had already talked about having the surgery done in September to keep Shea healthy during cold/flu/RSV/virus season. I think after the echo, Dr. Ohmstede will talk with Dr. P and Dr. Maxey and we will have a cat scheduled soon.

We are still waiting to hear back from Medicaid for Shea. It's a frustrating process, but in the end will be worth it.  We are also still in a waiting pattern for getting Shea physical therapy. Hopefully in two weeks they will be able to come out and qualify him. We are grateful for the social worker who  helped us in getting a home visit!  

Tomorrow Shea will officially be 4 months old!  Can't wait for our photo session :) We are going to try to do before shots...but you never know if that's going to happen!

16 weeks old-almost

We have had an interesting past week here, so I thought I would do a "quick" update...you know I am wordy, so hence the quotation marks. :)

Last Tuesday we went to the iCAN clinic where they evaluated Shea. After her exam she noticed some things and asked the Physical Therapist to come in and evaluate Shea. The testing was pretty similar to the one we had in the hospital. It was pretty cool to see how Shea had grown in some of those areas (tracking, noticing different sounds, holding objects)  Shea is right at 3 months (in ability ) for cognition and fine motor skills. But his big delay is in gross motor skills. He is super tight in his legs. He won't attempt to stand when you hold him, and he can't stretch his legs up above him.  So basically Shea has super tight hamstrings. The PT showed us some things to do with him and how to actually teach him how to roll as well. We did tummy time and different ways to keep him entertained while there. We are being referred to Baby Net which is this amazing company that has differentered kinds of therapies and guess what yall....IT'S FREE!  One more reason why living in SC was a good decision for us. So we will be having someone come to the house for some PT not sure how often just yet. 

On Wednesday, Shea slept alot! And didn't really have many wet diapers, mostly because he was too busy sleeping to eat. Oh yeah and maybe that virus was making him sleepy too. Wednesday evening, we weighed Shea as usual. He had lost 5 oz.  That seemed like a lot to me for just two days. I texted our head nurse and nurse navigator asking if I should call the cardiologist, they both said yes. Momma did not get much sleep that night. 

Thursday am: Called the cardiologist and they wanted to see him.  I was glad because Shea just wasn't right. I mean he was smiling but I could tell his personality was off, eating was off, and my gut was screaming at me. Luckily Paul was able to come home early from work and go with us. I won't say I was a wreck...on the outside, but I definitely was thinking we were headed to the hospital. Cardiologist said it wasn't his heart or lungs, which was wonderful news but I still didn't feel relieved. He did suggest we see our pediatrician just to make sure there wasn't anything going on there. 

Thursday pm: We were able to see Dr. Cook at 6pm. I am very glad we followed up with him. Shea did had a fever and viral infection.  The poor kiddo had to give blood and he was sooooooo unhappy. That may be the longest and hardest we have heard him cry. As soon as It was over, I tried to nurse him. It went like this scream/cry, suck suck suck, scream/cry, suck suck suck. After awhile he did calm down, but it was just pitiful.  He gets so clamy and sweaty and red/purple. :( 

I stayed home from work on Friday to snuggle with Shea. He was definitely feeling much better and we got in our excersizes and more tummy time. Aunt Emma came over too! We have not seen that lady in forever and Shea pulled out all the giggles for her. By weighing time, he had gained back 2 ounces. Whew!  So we are goin back up and now are at 12 lbs and 5oz. 

Saturday was a fun day! Mommy got to buy some new pjs! #momlife. We randomly stopped by at Aunt Darcis. She had a huge box for Shea and an audiobook for mommy! (Also a beautiful vase..LOL)  Then Grams and Gramps came over. They had been gone for a week and boy did we miss them. They brought some super cute clothes for Shea!  After hanging out for awhile, Paul had to go to his volleyball tournament and my parents stayed. I was able to do some baking (I am still nervous to do that alone with Shea) and then we got hungry!   The four of us headed out to dinner. We had some super yummy seafood and Shea had a good nap!  The kid ate 150ml twice! That's two 5 ounce feedings in one day!!! The most his has taken. Our boy is growing! We are so excited to be working up to that amount :)  

Some new things for Shea: being ticklish, his new word "eh", finding his feet (this is so cute to watch..he picks up his legs and just focuses on those feet. I have found him doing it in the rock and play, on the flook and in the car seat)  We also found and installed a new mobile in his crib. He loves it!  

Our sweet baby Shea just gives us so much joy. This picture below is him hanging out in bed with daddy watching the Olympics. How sweet is he?!  

3 months old!

Whew this post is a long time coming!!  It's amazing how some days I feel like I do nothing but stare at and feed Shea. And other days I feel like a huge whirlwind of things!  I have been trying to keep the sweet baby Shea Facebook page up to date with the day to day things. But I know there are many of you not on Facebook and/or like all the details! 

I can't remember all the details....ha!

Now don't be mad...most of the stuff is just normal baby things and is pretty boring to those not related to Shea.  So let's see what were some big things of July?  

Well big news for me, I am going to be staying home with Shea this fall. It's a huge deal and I'm struggling with not going back to my first graders. But Shea will always come first and he just isn't healthy enough for daycare. In fact some won't even take him because of how sick he is. We looked at private (in our home) care, but we need someone experienced with heart kiddos and realistically we can't afford them even if I am working. My whole paycheck would just go to them. It just doesn't make sense.  So I am staying home with Shea until he is healthy enough (and we are out of RSV, flu and cold season!) for daycare.

Another huge thing in our lives was a fundraiser put together by Lancaster County Sheriff's Office.  In just a few hours, of selling hot dog plates (any donation amount) and raffle tickets, they raised over $13,000 for us and another child needing serious medical assistance. I meant to take pictures of us and of the event but totally forgot. We got there early, but by noon that place was packed. The hot dog line was intertwined with the raffle ticket line. And the to-go line was mixed in there too. It was crazy packed!  We are so thankful for all the people who helped out at the event, donated money, and bought raffle tickets.  It was more than we ever could have expected!!

Okay I guess I should put a little something in here about Shea right?! I mean this is his blog...LOL!  Our sweet baby is chunking up!!  We are so close to 12 lbs I can taste it :)  He still isn't a fan of tummy time but loves to nap on his belly. Go figure!  Our feeding is about the same, a little more at times and then sometimes just too dang tired to eat. (This is normal for heart  babies.   But as long as they keep gaining weight the doctors don't worry)  Shea continues to work on those vocal cords. We haven't heard a hearty laugh but we get some giggles sporadically and even some screams.

At our last cardiologist appointment, Dr. Ohmstede stated again that he was still thinking September for our next open heart surgery (Glenn)  not because Shea is doing worse, he is in the low 80's for oxygen saturation levels, but more because of RSV season. I have had friends and neighbors tell me stories about their heart healthy kiddos getting it...and a man it sounds just horrible!!  The shunt that is keeping Shea alive right now is a serious bacteria sponge. So if we can have the Glenn before the season starts, he will have less of a chance of catching it. And we won't be in the hospital when it's floating around.

So what's coming up for us now?  Next week we go to the iCAN clinic. This is a neurology  appointment. Shea will be evaluated in several ways and we will be able to start working on his delays. Because he wasn't on the ECMO (heart/lung) machine during the first surgery, we don't think there are many.  But he will have to be on the ECMO for sure in this next surgery. We are hoping to get on top of the delays before then.   In a month we will go back to the cardiologist and he will determine if Shea should be scheduled for his surgery. Until then we keep watching his O2 saturation levels. Of course we watch his color too. It's not fun seeing him turn blue and purple! 
I will leave you with some pictures of our amazing kiddo!