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!!

Day 8: let's go for a ride (5/3)

This morning we made sure to be at the hospital early. Ronda night nurse, had said that the cath lab might call for Shea to be brought down sooner than 8:30. So she recommended that we be there before the NICU opened just in case. We were walking through the doors of NICU literally on the dot at 7:30. Suited up and headed in. So glad we did, he was already in isolate for traveling. We were able to love him through the little holes. He looked so snuggly in there!!

Ronda and Ashlie (our day nurse) let us walk with them down to the cath lab.  There we met the anesthesiologist  and his nurse. We were able to say goodbye to him and then watch him wheel back there. I didn't lose it, but I definitely teared up. The nurses talked about random things and I focused on their words. I know it's okay to cry, but I knew that if I started I wouldn't stop.

We hung out in the waiting room for the next 3 hours with my parents. I colored, talked, played on Facebook. The time went quicker than I thought it would. Through the heart momma network, I was able to help introduce Darryl to my parents. This man is a very experienced heart grandpa. My parents have had their own network of support now.  We had a little surprise as he showed up to sit with us!  It was great to meet him in person and so kind of him to show up. 

At 8:50 Shea was finished his pre-op and Dr. P started his magic. We got notification that procedure went well and Shea was doing well. They wheeled him up to NICU and took out his breathing tube before we even got back to see him. Dr. P came to see us before we went in. Technically the procedure went well. The pulse in the leg was nice and strong too!  Now we just wait and see how it goes.

Before we went back Darryl prayed with us.  That man is an experienced prayer-er!  There wasn't a dry eye among us! Then we went and saw our baby! 

Sweet baby Shea...he was coming off the anesthesia and was not liking it, he was so fidgety and couldn't get comfortable. His numbers were in 80's which is where we expected and wanted  them to be. (We were told this yesterday ) We did love on him a little bit but we couldn't pick him up and hold..which of course is all we wanted to do!!  Paul went down to call his parents and my mom came back with me. He was going down into the 70's and it was making me nervous. Some of it was Shea, but we learned most of it was the blood pressure cuff. I didn't realize it was taking his BP every 15 min automatically.

After a bit of sitting back there with him, I realized my blood pressure was getting pretty low.  Paul and I went to lunch and my parents back with Shea so he wasn't alone. Their first babysitting gig...LOL!

When Paul and I got back, my parents headed home and we sat with Shea for about an hour. His oxygen had been increased from 25% to 35% but he still was trying to come put of his anesthesia.  Ashlie encouraged us to go get a nap in and let her take care of Shea. We went back to RMH and man oh man that hour nap was glorious!  We did get a call from Ashlie that they had taken Shea off all oxygen and he was just breathing room air.

We had breakfast for dinner and it was so yummy. So very thankful for this place. It's really hard for us to decide what to eat l, especially dinner because we are so exhausted by the tens of each day.

Our dear friend Emily came by with some random grocery items we had asked for and we just hung out and talked. We were going to go to NICU but they were closed for admission. After a while the three of us were able to go over and we each got a little time with Shea before they closed for another admission. 

During the short time we were over there nurse Haley (we have had her before and love her) told us that they had to put the oxygen back on him. And it was up to 55%...yes that seemed like a lot to us too. But he had drank 20 ml from bottle. Great sign from our warrior!!  He was definitely sleeping peacefully, not all fidgety. We knew that the meds they gave him down in the cath lab were still in Shea. I mean he was so passed out his mouth was open and he was drooling!! It was really cute. Unfortunately we had to leave because another admission was coming. (Please be praying for our NICU nurses..they got 5 admissions yesterday that I know of. ..it was slammed pack)

Emily brought us back to RMH and we got ready for bed. We knew Haley would call us after rounds with the neotalogist suggestions about Sheas oxygen levels, puffiness and some other things. We got the call about 12:30am.

So they had to turn up his oxygen to 80% for about an hour. But he destat during his 11pm feeding. After talking to neotoalogist they decided not to have him feed anymore tonight. They called cardio and then turned back on the prostaglandin. He has been able to weaned down to 50% oxygen since turning that back on. It's looking like the ductus is closing and there may not be enough flow as we had hoped. They will do echo as planned in the morning and know more. The cardio team will advise on what to do next. I know Haley had talked about giving Shea Lasix to help him pee out the fluids he is retaining. His weight has increased because of it.  But they will wait to see what his heart is looking like.

Family, friends and prayer warriors. Please keep praying for our Sweet Baby Shea. This ride is a crazy one and even though the procedure went well. We knew that it not working was a real possibility. As we find out more information and are ready to share we will. 

Day 7: The New Plan, Stan. (5/2)

This morning we packed up and left the hospitality house.  We got a room at the Ronald McDonald House (RMH)  We had already toured there so we knew it would be nice..but just amazing!  Our room is amazing. It will be a wonderful home away from home for us in these coming weeks.

Sweet Baby Shea is still eating and growing and pooping!  Man he loves to poop. :)  He drank 36 our of 40 ml for me this am.  Poor little guy, I had to really wake him up and still he kept falling asleep on me. After feeding him we headed over to the RMH and got settled in. It's great to get settled in some where, unpack, and finally feel like we can breathe on this issue of housing.

On our way into the hospital we talked to our cardiologist, Dr Ohmstede.  He seemed very confident in the procedure that was presented to us. He talked to us for about 20 minutes.  He also feels confident in what Dr. P. can do and that he won't try to be a "cowboy"  What a great team we have!

Daddy gets Shea to down the 40ml like nothing at the 11am feeding. Our nurse Brandy today was awesome. We loved talking and hanging out with her. Again the small world catches up with us. She used to date a guy from Seaford, DE close to where Paul used to live...crazy!

We got a call that Dr. Maxey was able to come talk to us...so we had that conversation. Man, I love our surgeon!  For someone who works with babies and kids all day, he is super personable and can relate to adults wonderfully.( I guess my sterotypes come from Grey's Anatomy)  We talked through the pulmonary artery balloon procedure....more on this later in the post. He also thought this procedure was worth a try. He shared with us the normal oxygen levels for Shea will be 80iah. You and me live at 100 and if we went below that we would be hospitalized because there is an issue of a blockage of some sort.

So then came in Dr. P himself. We have met him informally but not with Shea being a patient of his. This man definitely loves what he does. He explained the procedure in some of the things that we still didn't understand or things we were concerned about. After a lot of talking, question answering and truths we have decided to go ahead with the pulmonary artery valve balloon procedure.

What is that exactly?  Well we have been using the picture below (drawn by the cardiologist on call last week) to talk thru it all. So we will be doing a cath through the top of the pulmonary artery (near the ductus) down into the valve.  He will inflate a balloon near the bottom to see if he can expand the artery. (Right now it's too thin and it won't allow the blood to flow correctly)  We will not know if the procedure is successful until they wean him of the medicine that he has been on the past week. (That medicine has kept his ductus open and letting the blood flow) 

It's possible that they won't be able to open the artery with the balloon. It's possible that they will be able to open it but it still won't be enough. (Then we get the first open heart surgery called a BT shunt )  It's possible the balloon works but the ductus doesn't close on its own. (Then we have another cath to close the ductus)  They may also have to go in and put a stent in the  ductus. 

Basically the variables are numerous. However this procedure won't hinder or affect his chance at getting the BT Shunt. So if this doesn't work, we will have the BT shunt. It was pretty much a lot of information. But if we do nothing our Sweet Baby Shea won't get better on his own. We have to do something. I'm too in love with him to let him go!

One of my parents this year, the same wonderful one who threw me a baby shower, started a go fund me page for Shea. So thoughtful and helpful...thank you Jennifer!!

Big thanks to Darci for visiting and bringing us dinner!! It was so wonderful to see you :)  and we know Shea loved showing off for you!

Super big thanks to my parents for bringing the dogs up to see us. Even though they weren't too thrilled it warmed our hearts.

Ginormous thanks to Sheila for taking our dogs to her house for the rest of this week!! 4 dogs is a lot and you are super brave to take this on for us.

Tomorrow at 8:30 am Shea will go down for this procedure please keep him, Dr. P, and all the staff in your prayers and thoughts.  

Day 6: Sweet Gestures from Sweet Friends (5/1)

(Just so you know, I started this blog at 10:40am!!)

It's May Day and even though we woke up to a dreary rainy day, I am full of energy and happiness!  It might have to do with how much sleep I got, or being at the Hospitality house which is like a hotel room. I don't really care..I just love that I'm feeling good!

We got to the hospital for 8am feeding which Paul did....Shea rocked it out! Took all 35 ml. Afterwards we traded and I just got to snuggle. Oh it was glorious. Kinda like what it would be like at home minus these gorgeous blue aprons and wires.

After feeding Shea we have to feed mommy. We ate at the cafeteria and I was stoked. :) They had those french toast sticks, you know the ones we had as kids.....yum!!  Then we kind just hung out in lobby. They are having a community blood drive here sponsored by the Panthers!  Lots of freebies and cool raffles. Wish I could donate but pretty sure no one wants me re-admitted to the hospital. :)

11am feeding I tried different positions and was able to get most of the 35 ml but we did have to use ng tube for last few ml.  My brother was leaving today so we let him come back with Paul to get some cuddles in. My brother has been taking care of our fur babies this week. We are so blessed that we haven't had to worry about them at all this week.

My good friends, and tutoring buddy, came by to see me and Paul today. Sweet girl wanted to see Shea but of course we couldn't, but we showed her and her parents lots of photos. They bought me lunch and brought us the most adorable cupcake flower pot!!  Tons of people stopped us on the way out of Levines asking about it!  Bobbie you could have a second job if you wanted it!:) 

At the 2pm feeding, Sheas temperature was a little too cool for us to feed him by bottle. So we ng tub fed him. Paul and I decided it was a great time to go back to the Hospitality House and rest. I put my feet up as the swollen feet/ankles have finally come. #justcallmebettyflintstone

We went back for the 5pm feeding and he took 36ml out of 40ml!  Another sweet friend brought us dinner from Bad Daddys. And I totally got a milkshake. Yummy in my tummy. This same friend was our taxi!  We got into the Ronald McDonald House!! So she took us over their to check in and then brought us back. We will officially  move in tomorrow morning. Gretchen you are a great friend and super supportive. :) 

Another sweet friend and I have known each other for only a short time. But she is so kind. She is a LulaRoe