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!

7 weeks old

It's like the 7th inning in baseball or the supposed "7 year itch" in a relationship. 7 weeks old, and Shea decides it's time to make Mommy worry.

It all started last Monday when Daddy was doing a dinner feeding and noticed that Shea's neck was stiff. Like seriously not moving at all to right. He could turn his neck and look both ways but the ear to shoulder thing wasn't happening, not even close. Our head nurse/clinical manager has texted asking how we were doing.  I, of course, had to be honest and tell her.  I also mentioned that he hadn't gained any weight since last week.  She called our pediatrician and they both agreed it was most likely nothing. Well Tuesday am I called our cardiologist  just to make sure (plus those specific directions were in our discharge paperwork)  they seemed a bit concerned and wanted us to call back Thursday am and let them know how the Wednesday weight gain went. 

By Thursday he had gained 0.02 kg in 6 days...not great. So Thursday am not only did we call but we went in for a visit. Because nothing else was super concerning (breathing, color of skin, diapers,  feedings) we were sent home to watch. Of course Friday night he had gained more weight! Whew...7 week scare was over!

(Picture: sometimes we do tummy time on mommy while we are still waking up!)

6 weeks old!

I can't believe Shea is already 6 weeks old!  This means we have been home for 3 weeks...though it seems longer:)  Shea continues to eat and grow. He has been wanting to eat about every two hours, sometimes we make it to three hours though. We are lucky enough that he sleeps for a longer time at night.  I am having to wake him up at about 2 am to do a feeding. Paul gets up about 6 to feed him. Several times this week, Shea has woke us up wanting to eat!  Shea has also surpassed 9 lbs.  Last night he was a whopping 9lbs 6oz. I can't believe he still fits in the newborn clothes. We didn't have but like 3 outfits. Thank goodness to Grams who took us shopping when we were still in the hospital. Also to my sweet friends who were pregnant with me. (Their boys are about a month older than us)  I am glad they were willing to share their newborn clothes with us for a little bit.

We had a cardiologist appointment this week. He listened to his heart and lungs and he said he sounded good. We were able to go back down to 2 doses of Lasix and no more potassium!  Shea really is happy about no more potassium. :)  Afterwards we went to dinner, mostly to wait out the traffic. There was only two other customers in the place, we were very thankful for that. Shea did great, he sat in his carrier and drank his bottle while mommy and daddy ate. Well for the most part, he was held some too.

We have been so blessed with wonderful friends. This week our fridge has been full of food, super yummy food!  Big thanks to those who have been bringing and sending food to us. :) Mommy has even been trying to  venture out of the house when help is here. She made it out on Wednesday and Thursday!  Big deal people, big deal!!!

This next week brings in more support people. Hopefully with their help I can figure out my life a little better. I need more sleep, do some chores and get together some father's day gifts.

How is Shea doing?

We get that question all the time! And we have made the mistake in saying "He is doing well."  It's not that he is doing bad...but he is doing well for his condition. He still has half a heart. He still needs medications daily (and thoughout the day)  He will still need at least two more open heart surgeries to keep him alive. Who knows what other procedures and medications will be in his future. So Shea is doing well, and we call him a Rockstar because he is doing great in this situation. But please don't think he is out of the woods. We still need all the prayers, support and love.

I've included a picture of our last echo (last week)  You can see by the labels that his right ventricle is barely there. The top left chamber is larger than it should be. So we have added another dose of Lasix and some Potassium. There is also a "flash" in his mitrovalve. At this time there is no concern, but needs to be monitored. We will be seen in a few weeks to check everything and make sure it's getting better and not worse.

As far as growth, Shea is gaining weight! He is 8 lbs and 10 ounces at the time of this post. He is increasing his feeds. The largest being 95ml (just once) and the smallest 50ml. Mostly we average 73ml every 3 hours. Our home schedule is pretty much as follows: change diaper, feed Shea and pump at same time, change diaper again and put cute clothes on, mommy cleans supplies and makes coffee, stares at Shea, changes diaper, feeds/pumps, cleans supplies stares into amazing eyes...and so on. Of course I am getting other things done too. But not really :)  I am really enjoying cuddling my little man. He definitely knows who his mommy is!

And now for a little PSA. (I say this all with love!) We are so thankful for so much support from our family and friends. We've been advised by Shea's pediatrician and cardiologist that it is best that we limit his exposure to visits. At this time we ask that you love us from afar. Please join our journey through our texts, emails, Facebook posts, blog posts, and phone calls, but not by asking to visit with Shea. While we are so very excited to share him with our family and friends, we must keep him healthy so that he can heal from this surgery and be strong enough for his next two.

Day 13: Mothers day (5/8)

Happy mothers day to all! I didn't have very high hopes for my first .others day but that's really just because I had no idea what to expect. And being in the hospital doesn't help either.

I woke up in the wee hours of the night to put my milk in the mining ridge they have on my floor at RMH. When I opened the door, all the rooms had a large tote bag filled with things outside. I grabbed it but didn't go through it. When Paul came later in the morning we did. Lots of pampering items for me in there!!  It was wonderful.

Paul came and got me to take me back to the hospital for our 8am feeding. He. Rough me some.comforts of home and a QT coffee:)  He had also picked out some wonderful Mothers day cards for me! Shea was very awake for his 8am feeding, lots of open eyes and "talking".  We decided to come back to RMH after for some brunch. And I walked back!  It was nice to do some walking but it was a big step for me 

Brunch at RMH didn't disappoint!!  Victoria's Secret was the crew, and they made us mom's feel very special. In addition to the yummy food they had for us, they also had made swag bags.  These were no joke! One of ours had a $10gift card as well as other products! They also had asked friends to come and do hair and make up. Now if you knowe, make up and I just don't happen. But hey, it was mothers day!!  I had my face and hair did! And I felt great!!  :)  I also met some other heart mommas who are staying at RMH. Made me feel connected and blessed. Both their daughters are in a worse place than Shea, grant it, they have been here longer and both have had surgery already. But it made me feel lucky to have had these 12 days with Shea being so "healthy".

Paul and I decided to let my mom have some alone time with Shea. So we sent her over to the hospital for the 11am feeding while we relaxed some. She had a great time feeding and snuggling Shea. He even ate 35 out of 45ml for her!!

We headed back (I walked again!) to the hospital for some lunch and Shea time!  We loved lots on our little boy and we tagged teamed the 2pmnfeeding. Little man passes out during his eating!   We were also able to Skype with Paul's parents. They loved seeing Shea and we were so happy that Shea was awake and giving them lots of eyes:)  What a sweet little boy.

Day 9: Bump in the road (5/4)

After our call at 12:30ish am it's amazing we got any sleep. As my friend Glennon Doyle Melton says " Jesus loves me this I know, for He gave me Lexapro" (and Perecocet)  We got to the hospital early again and went back at 7:30 on the dot.  

Our primary nurse, Lauren, was not happy.  Which made us worried. We got back there and Shea was very agitated and uncomfortable . We have not seen this side of him and it was just pitiful. He was so fidgety and crying. We felt just helpless as parents. We held his hands, kissed his forehead, and held his paci in his mouth for him. He was on 100% oxygen and 4 liters of flow...not good. And Shea's feet were so puffy.  they also had turned on the prostaglandin again. This is the med he had before the cath to keep the ductus open.

Overnight they had put him on Lasix to help empty the fluids from his system. When we changed the diaper. It was clear that it had worked. Y'all, I have changed a million diapers and never seen anything like that! When Lauren weighed it, it was 140mg, he has been averaging 40mg a diaper.

Paul and I spent most of the day in NICU by his bedside. Throughout the day Shea had an echo and xray right there in his "room".  I was able to comfort him during the echo and help with wires and positions. I think Shea liked the massage he got with the ultrasound wand.  So let's go through the results of all the tests he had:
1. Blood work: showed that his hemoglobin was great aka he has enough oxygen in his blood...WIN!
2. X-ray: clear as a whistle. No infection or fluffiness...WIN!
3. Echo: the ductus was starting to close and the pulmonary artery valve was still thin (even after procedure) and disrupt the flow of blood in the heart.

After talking with the neonatologist and the cardiologist there were two options on the table. The BT shunt (first open heart surgery we had already planned for) or trying beta blockers. The thought is that the muscle below the valve is constricted and the beta blockers would slow the heart rate down, allow the muscle to relax and the heart to fill up with blood. There is a 50/50% chance of it working and there are no risks to trying it. So after talking with both doctors we decided to go ahead and try to beta blockers. We will know in the morning after the echo if it helped.

I will admit yesterday was very hard for us. We were in the NICU for most of the day (7:30-5:30)  My parents did come up and spent an hour or so with Shea so we could go to lunch. After we fed Shea at 5pm he was super mad (we only gave him 15ml) and started getting angry colors. In normal babies you don't worry so much about that, with heart babies, you try to make them breathe. For now it seems like giving Shea a paci reminds him to breathe normally. He also likes lying on his side cuddling up to a blanket.

My parents took us out to dinner. It was the first meal I've had that wasn't at the hospital or RMH. I kept staring at my phone. I also enjoyed a glass of wine. Not going to lie there was a little buzz going on. Food was great and my parents really tried to keep my mind off my tiny little world. So thankful for my parents and Paul. They truly are my rocks right now.

We did the 8pm cares- diaper changing, temp, weighing (he lost some of the fluid weight!), Paul even got to help with ng tube feeding.   Shea was more awake during this time. And we were really happy to see our little one getting back to himself. Before we left the respiratory therapist came in and turned him down to 2 liters..less flow..yeah!!! I called during my midnight pumping session and Shea continued to do well. Beta blockers were started at 11pm and he was doing well.

Paul and I are so thankful for your understanding of us holding back. We are getting new information all the time and trying to process it. We love you for your support and constant prayers!!