Home

We finally made it home. We are so blessed we could come home so early. 

Let me update.

So Harper had some blood in his stool the nurses and doctors were concerned about. They were afraid he had an infection or worse pneumatosis. He had to have abdomen x-rays after a feed 2 times a day. They weren't able to find anything unusual in his stomach. He wasn't able to eat for 36 hours from Friday to Saturday. He was miserable to say the least. So were we. It's so hard to see your baby starving. The doctors decided to let him have breastmilk again and see if the blood appeared again. It did. So then we had to assume he had an allergy to something in my milk. Because the x-rays didn't show swelling or air in his tummy we had to assume my milk was the issue. We started him on an allergy free formula and the blood went away. 

Guess what that means? No dairy whatsoever for me. 

Since then he has been so good. He is in a little bit of pain every once in awhile, but over all he is perfect. I couldn't be luckier to have such a warrior.

Because his diapers were clean, he was gaining weight, his follow-up echogram of his heart looked good, and his incision is healing they were able to send us home yesterday. We were thrilled. Only 6 days after surgery he gets to come home. (I think Andrew and I are pretty excited to not have to stay at the hospital over night with him anymore, we were pretty worn out)! 

Once we got home we were able to get him all set up with oxygen. Not going to lie the oxygen scares me just a little bit, but I'm getting use to it. 

Harper came home with his feeding tube and oxygen. He needs his feeding tube until he can eat all of his bottle by mouth consistently and still gain weight. Once he can do that, we can take it out. We are hoping he is feeling a little better with his new procedure to eat better. He needs the oxygen to help the blood flow smoothly after his surgery. We will see the doctors in 2 weeks to check if he can go off of the oxygen. 

He is doing so good at home. Other than pain every once in awhile, he is a pretty happy boy.

First feed after starvation

Showing off my scar

He got a mobile in his crib and loved it

Cute new outfit to go home in

No more wires all over him

He loved the wagon ride to the car

On our way

Ups and Downs

Today was a roller coaster for us. Harper had a good day of rest. We were able to get on top of his pain meds to ease the pain. But the down parts begin.... Harper wasn't able to get those awful tubes out that are painful for him. We also had some trouble with blood in his stool. We are unsure what's causing the blood, but we aren't able to feed the poor little guy. He hasn't eaten since 10 this morning and he even threw that feed up. He's hungry to say the least. And he lets us know. I try to disguise his binky with water just until he falls asleep to forget about being hungry. They ran a few x-rays on his abdomen and weren't able to find any signs of something wrong in there. He had an x-ray after the diaper at 11 and one tonight at 8. Still no signs of anything. They will continue to not feed him throughout the night, hoping to clear out whatever was bothering his tummy. The doctors will review everything in the morning. Once again, he's the boss and the doctors have to go off him. We are hoping for the best in the morning. 

On the brighter side of things, Harper was able to show off like his ol' self today. We got a few coos and laughs. Maybe it was the drugs talking but I'll take it. It made my day to know he is feeling a little bit better and starting to get back to himself again.

We also enjoyed having Auntie Amber in town. We are sad she had to get back.

We were able to have Grandma Bev, Aunt Nicole, and Great Grandma Hurst come and visit today. I think Harper enjoyed some new faces. I think he might get tired of my funny faces sometimes.

 He also loved playing with Mr. Lion again. Can't leave him home for sure. It's his favorite.

Update

It was a rough day for the little man yesterday. Always hard to see him in pain and struggle, so it was tough. He is doing really good with everything from surgery, it is just his pain and comfort we are working on now. They were able to get some of the lines out, his central line and RA line. He is still on a bit of oxygen and still has the two chest tubes in to help drain. His face is still really swollen from this type of surgery. He is getting extra blood flow to his upper extremities, so we are told his face and head will be swollen for some time. He doesn't look like my sweet little boy anymore, he looks like he's in pain and uncomfortable. It's so hard to look at my poor baby, in pain and all swollen. He's so precious though, and I love him just the same.

It was hard to see him go through his pain bursts. He knows we are there and I just want to hold him and take all his hurts away. But he is so strong and such a trooper, he amazes me everyday. I love him so much.

After his tough day yesterday, we were able to come back after dinner and spend some good time with him. I was able to finally hold him. He slept for a good while, which he needed. I think he missed me. I'm just glad I can help him out anyway I can. I was so happy to have him in my arms again. I'm so lucky to be his mom. He is such an inspiration and example to me. We were also able to feed him. He is eating really well with the bottle. Better than he ever has. 

Today was a better day with some things and others not so great. He had a better day with pain management. I feel like we finally were able to get on top of that. He seemed to sleep most of the day and recover well. Today they were able to take out one of his chest tubes that help drain some of the extra fluid from surgery. They took the one out that bothers him the least, so he is still really uncomfortable with the chest tubes along the side of his ribs and lungs. They did have to put his feeding tube back in. He just didn't have the strength to eat all his food. He ate quite a bit by mouth, but just couldn't stay awake for all of it. He needs all the strength and calories he can get right now, so it's a good thing that he has the tube. Once he feels better, we might have better luck with the feeds.
They were able to move us up onto the 3rd floor in the recovery section. Good and bad. Good we are on track for recovery. We have our own room. We can sleep by him all night. Bad because the nurses aren't by his side all day and night. We don't have a window in our room. We didn't have a bed, until we asked the night shift for one. 
I am so blessed to have Andrew as a husband and Harper's dad. He is so good to him and takes such good care of both of us. Andrew wants to sleep next to him tonight, so we plan on taking shifts staying next to him. It's hard not having someone by his side at night so we don't dare leave now. When he was younger it was easier to leave because he didn't know the difference as much. Now he knows, so we try to stay here as much as possible.
Overall, it was a good day and it's better to see him more comfortable with the pain medication.

Surgery Day

Andrew's friend from work introduced us to this song and we have officially made it Harper's theme song. 

Car ride over he was still sleepy from being woke up. 

Still such a cutie

 Pre-Operative Work

 To say the least he was a very happy boy for not knowing what was in store for him. He was starving but didn't even fuss. He was a happy, cute little boy just giving us a show before they took him back. As a mom, it's the hardest thing to watch your sweet lil' boy be taken into surgery. He's a trooper though and I knew he would be in good hands with Dr. Burch.

 Surgery

Harper did awesome in surgery. He is so tough. I don't know how these lil' guys are such brave and tough boys already. The procedure went really well. The doctor was confident that Harper will feel so much better. 

They were able to perform the procedure we were planning on and everything turned out. He was able to come off the breathing tube within 2 hours out of surgery. We are so proud of the strong little boy he is. I couldn't be a prouder mom. Slowly Harper will be able to take different tubes out, one by one. He is on a little oxygen but they expect to take that out soon. But like always he is the boss and everyone has to follow his cues. :) He is doing so good though for a heart baby, and everyone is impressed. So are we. We are hoping he will be back to a spunky lil' boy again soon. We can't wait. 

After surgery, there were a lot of tubes and monitors. He is a little swollen from the IVs and anesthesia. They will run a diarrhetic to help rid some of the fluids built up from surgery. 

We were surprised to hear the doctors left a little cushion room to possibly do a full repair when he is older. That is, if his heart grows enough to where they can close the hole in his heart. Once again, he's the boss. 

Picture right after they took the breathing tube out. Looks so much better

He hasn't quite opened his eyes for us tonight, but he hears us and wants to talk. Right now he is just a grunter though. I think he doesn't want to see where he is, so he's trying to keep those eyes closed for now. He loves his lion though. He snugs right up to it. He squeezes our fingers with his little hands. I couldn't ask for a sweeter little boy. Even a grunt from him makes me such a happy momma. He is doing SO good. We are so blessed. 

Thank you for all your thoughts and prayers. We truly have felt all the love and support. 

And we're BACK.....

Harper's big surgery day is tomorrow. It is a bitter sweet day. No one likes surgery but Harper needs it. He just works too hard to keep his little heart beating and lungs breathing. 

Today we went in for all his pre-operative work. Harper was such a big boy and did so well. They drew blood, took a urine sample, and did a chest x-ray. 

I think he knows something is about to happen because he is having such a lazy and relaxing day. Sleeping a lot. I couldn't be happier. He needs all the strength he can get for the big day tomorrow.

Yeah, all just taking it easy

The procedure they will be doing tomorrow is called the Glen. Basically, they will re-route the plumbing in his heart to help his breathing. They will switch things around so less blood will go to his lungs and more will go to the body.

Basic diagram of the procedure

Normal heart

I thought it was appropriate to tell our story and keep everyone updated with a blog. I'm so glad to have this finally up (to say the least). Took some work since I'm not too savvy with this setup. 

Harper Dee Rich was born April 28, 2012 in Provo, Utah. He was 9.3 lbs and 23 inches.

We were loving on this precious boy for 12 hours when he started to show signs that he wasn't getting enough oxygen. Doctors did x-rays and it showed a lining of air between his ribs and lungs. Doctors released the air bubble and he was still having a hard time breathing. Before the procedure, Andrew wanted to give our little boy a blessing. We had to decide between the two names we were debating on for his blessing. Andrew chose Harper Dee Rich. Fits him perfectly. Sunday night the doctor called me and they thought he might have Pneumonia. 

Early that morning the doctor called Andrew. We knew something was wrong. The doctor was normally calling my cell phone. 

The doctor informed us they had found a defect in his little heart and he was being flown to Primary Children's Medical Center in Salt Lake City for surgery. 

Andrew and I were broken. How could our little boy that we loved so much be so broken? We didn't know what was in store for us. We packed a few things and raced to the hospital. It was the longest drive to SLC in all my life. 

We were so uneducated about the heart. We didn't know what was in store for us once we reached him at the hospital. We were shocked to say the least.

Harper had a safe and successful ride in the helicopter. He was hooked to all kinds of tubes and machines when we reached him. We were thinking they were taking him right into surgery. Doctors then told us they would all meet on Wednesday and review his case, but his surgery would most likely be on Friday. Wednesday couldn't come soon enough. 

Harper's diagnosis is Transposition of the Greater Arteries (main arteries are switched) and a VSD (hole between his lower to chambers).

Normal Heart

Harper's switched arteries and VSD

Wednesday the doctors discussed his case, Harper's hole is too big to patch. Since the hole is too big to patch, they can't switch the arteries. They planned to put a band around the pulmonary artery that takes the blood to the lungs. This way the heart wouldn't pump so much blood to his lungs and would force it to reach the rest of his little body. 

Friday the surgery was performed. Harper did great through the surgery. The doctors were confident that they were successful. 

About a week later Harper had an e.Coli infection in his bowels which set us back from coming home another 2 weeks.

 As you can tell, Harper was SO excited to finally go home. We were thrilled to introduce him to Lucy and his new home. 

About a month later, Harper was still having a hard time breathing and he was working too hard. Doctors were concerned. They figured the band around his artery wasn't doing its job. They ran a catheter up his vein to test the pressures in his little heart and everything looked okay, meaning they wouldn't need to do surgery right away. There they decided to wait until he is 4 months old to proceed with the surgery.

Since the hospital we have been so happy to hold and have Harper in our home. I love him more than I thought I could ever love anything or anyone in the world. He is so precious and so happy I couldn't be a luckier mom. I am so blessed and I thank my Father in Heaven every day to have this sweet little boy in my life. I love being a mom and he makes every bit of it worthwhile. 

I love his little big feet.

First Shots

Blessing Day

He loves Mr. Lion

Fun bath-time. Squeaky clean

Yep. That's how he keeps his binky in

Big boy