A Wal-Mart Fit

Eli is a crazy boy. So much spirit and spunk! He is always up for wrestling, running, jumping, playing peek-a-boo, you name it. I'm actually kinda surprised with how well he is doing. 2 years ago, when we found out in utero that he had a congenital heart disease, I was expecting to have a little boy who wanted to sit and be sad all the time. That is not the case! I am so grateful for that.

But I have to say, with so much energy, comes really big fits.  He is very willing to let you know when he is not happy.  Crying and screaming most likely will ensue. This causes him to be sweaty, and now I am starting to really notice a color change.

A few weeks ago we were in Wal-Mart, checking out, and Eli wanted a drink. He kept pointing at the Pepsi products, and I kept saying we will get a drink when we went home. Well 19 month olds don't quite understand patience.  He cried and screamed and flung him self all over the place in the seat of the cart. Then I started to notice his color change.  He became a purple-grayish color. Head to toe. To be honest, it scared me.  

Alright, Eli, lesson learned. I will always carry water with us. Even if the trip is a total of 15 minutes long, a water bottle will be in the diaper bag. 

Grateful

We are grateful for our son.  We are grateful for the modern medicine that has saved him.  Eli would have passed away around 6 weeks of age if not for open heart surgery.  Too much blood pressure in the lungs would have destroyed them.  

We are grateful for these experiences. They have taught us what love and hope and faith truly mean.  We have grown in ways never known to us before. 

We are grateful for Eli's health and his strength. 

Found this blog today. Their daughter died a year ago, she was missing her left side.  Eli is missing his right side... 

http://thegledhillfamily.blogspot.com/

The Scar

Eli's scar. Summer of 2010. 

A year after two surgeries this is what his scar looks like. 

Change of Plans

Eli will not be having the Fontan surgery in May. Because he is doing so well, the surgeon wants to wait till he is bigger so that an adult size... something... can be used. Not sure when the surgery will be. He check up appointment will be in May, and we will go from there. I know he needs a cardiac catheterization done after that. Probably sometime in the summer. If he continues to gain weight and have higher oxygen saturation levels, then they may wait till he is even three years of age. 

Not sure how I feel. Watching him struggle and get tired after long play is hard. He's sweaty, blue-ish tint. I just want him to feel well and be able to keep up with his brothers. But what is best, is best. I'm just grateful we have the modern medicine to take care of him! 

Check Up, Check In

Eli's check up appointment was today. Easy and hard. Easy and hard. He slept well, so he was actually in a good mood at the appointment. Typically he doesn't trust a soul at a doctor's office. Typically he cries the whole time.

Today he let the nurse take the blood pressure, oxygen saturation, his weight and length with no problem. Wow! 

Oxygen saturation: 83% 

Weight: 25 pounds

Length: 31 inches 

We brought a movie for the heart echo (ultra sound of the heart). This was his first heart echo since he was a newborn where he was not sedated. Well... I knew he would eventually be a hand full. Heart echos can be up to an hour long...

First 20 to 30 minutes, he laid there pretty well. Watched the video, drank a bottle. But began to fidget. We try bubbles. We try Gold Fish crackers. He starts to whine and cry hard. Well the Doc looks at the pictures and video and says that is probably good enough. 

Heres what we learned:

- Eli is doing fantastic! The saturation levels may seem low, but they are actually pretty high for his circumstance.

- His blood flow looks good. His heart is strong. There seems to be no turbulence in the heart. 

- His next surgery (and hopefully last--the Fontan) will most likely be next May. 

Can you believe that? His next surgery is like 6 to 8 months away. Weird. 

A Pain in the Aspirin

Eli is on aspirin. Has been for over a year. A half baby aspirin, every night. 

We feel like an apothecary. We half the aspirin. We crush the aspirin. We dissolve the aspirin in water. We then use a small syringe to get the aspirin/water mixture to Eli. And sometimes Eli spits it out...

BUT we are proud to say that those days are over!! We now just half the aspirin, and Eli chews on it and eats it by himself. It is so wonderful and freeing!!

Sweaty Summer

Eli is sweaty. All the time. There could be a number of factors to this.

1) It is summer, and it is hot. 

2) Having a CHD his body has to work extra hard to do typical one year old tasks. Such as learning how to walk, crawling after a big bother, and unrolling all the toilet paper. 

And 3) As he is growing it is making his heart work harder to supply the blood flow to his body. 

Being sweaty. Just one of those things that comes with the territory. 

The Stats are In!

Eli had his one year check up a few days ago, and here are the stats:

weight: 21 1/2 lbs 30th percentile 

height: 29 3/5 inches 50th percentile 

Not bad for a heart baby, eh?

One Year Later

I have been thinking a lot about last year. Wow, what a time. Eli was born, had his first open heart surgery (the PA band), came home, and started the 6 weeks of recovery. When I look at the photos I get really, really weepy. I think I am feeling part heart break, part relief. Heart break because Eli was so small and so sick/in pain. Relief because we have made it this far, and this time last year I had no idea where we'd be at this point... 

Eli's birthday. 

He was brought to us after being seen in the NICU and before being transported to PICU

His bed.

Where he chilled, was held, and lived for 4 days before surgery.

Surgery day.

The surgeon (amazing!) coming to check on him.

Eli had a really, really hard time that night. He wasn't breathing well on his own so he couldn't have the full dose of pain medicine. Probably the worst night of my life.

In recovery! 

But still in lots of pain. We were fortunate enough to be able to leave 4 days after the surgery. So 8 days total at the hospital.

Hiccups.

Hiccups are the worst! The worst. Eli got them all the time. Just killed him. He got them a lot because he wasn't able to burp well, because his chest hurt. The only thing we could do was let him cry it out. This happened 5 or 6 times a day. 

Newborn nights.

Newborn nights are always hard. But his seemed harder. He liked the lights on, and did not want to be in the bassinet. Liked wide open spaces. Which fits to what he was used to in the hospital. 

Home recovery.

Recovery is typically 6 weeks long. In Eli's case he needed to come home with oxygen. Some need it up to 3 months afterward, but Eli only needed it for two weeks. 

This is where he chilled most of the time:

Oxygen gone, thankfully! 

Oxygen really does get in the way. 

And this is what is chest looked like 2 weeks after surgery:

I could go on and on. If you have any question feel free to email me at shandud@gmail.com

But for now, THE END.

Coloring

Eli has a lower blood oxygen saturation. A typical person has a blood saturation of 95 to 99 per cent, but Eli's blood saturation ranges between 78 and 84 per cent. This lower saturation is due to the mixing of the pink and blue blood because of the holes in his heart. Well this dubs him as "blue baby." The coloring of his skin isn't really blue, but off a bit. One can really tell in photographs.

Eli at 9 months old--Christmas '09

Eli on the left and his big brother Isaac on the right 

When Eli has his last surgery next year all the holes in his heart will be mended and his blood oxygen saturation will within normal range. No more "blue baby!"

Oh, this lower blood oxygen saturation makes Eli become tired and cranky very easily. I just got to remember in those moments of excessive whining, that, "he does not feel well, he does not feel well." Despite this he is one happy, crazy baby!

Eli's EKG Review

Well yesterday Eli had his second EKG within the week. Everything is looking pretty good. Last week when he had the EKG he also had a high fever, which made his heart beat close to 140 beats per minute. An EKG is very VERY sensitive to every beat, pulse, and rhythm. So his rapid heart beat probably caused some irregular heart rhythms, or made the EKG think that there was some irregular heart rhythms. Yesterday Eli's heart beat was around 117 beats per minute, and the heart rhythm seems perfectly normal... 

Another note, love being able to see a pediatric cardiologist that is just down the street! When we lived in Rexburg all our heart appointments were in Salt Lake City... 3 1/2 hours away. The cardiologist here is wonderful and has a great communication system with Primary Children's Medical Center (SLC), including a great professional relationship with Eli's surgeon there. All of the procedures will still be held at Primary Children's, but Boise will be able to meet the day to day needs. 

The cardiologist was pretty interested in the fever. (Remember this post?) We told her the symptoms, which was 4 days of high fever easily controlled on Tylenol, then a prickly rash over the neck and chest. She determined that it was probably Roseola. That seems spot on. Click HERE to see full details of Roseola. 

Sedated Heart Echo, etc.

Last week Eli had a sedated heart echo and check up at Primary Children's Medical Center in Salt Lake City. Oh, what a stressful time! Eli had woken up Monday morning with fever, but we had to leave Monday and stay the night in Salt Lake City for the appointment on Tuesday. Taking care of a sick baby on the road... I don't recommend that. Thank goodness my mother and sister were able to come with me. (Matt, my husband, stayed home with our 3 year old and finished packing the house. Oh yeah, we moved last week. Stress.) 

That night in the hotel my mom and I got a combined total of 2 hours of sleep. Eli could not rest because he did not feel well. But up and awake we were at 6am to give Eli his last bottle before the sedated heart echo and to be at the hospital by 7:15am. 

Eli has had one sedated heart echo before. But being so young (3 months old) he was able to take the sedation medicine orally. Not this time! His sedation medicine has to come through an IV.  Understand that he already did not feel well because of fever and was very cranky because of lack of sleep. So when the IV team came in and started touching him, he let them know he was not a happy camper. It took three pokes till they found a good vain. Lots of crying, lots of kicking, and a very stressed me. They finally got a good stick and off to sedation echo at 8:30am. 

Eli was so tired he only took half the sedation medicine alloted through the IV before he conked out! The echo began and Mom saw for the first time what Eli's heart looks like. She calls it an "open mouth bass," and kept wondering what we were looking at. It is pretty weird picture: the two chambers on top are connected, making one big chamber, then there is one big ventricle on the left side. And that is Eli's heart. 

Afterward Eli went to recovery for an hour and a bit to let the sedation medicine ware off. Wondering what an echo is? An echo is an ultrasound of the heart. They like to do this every once in a while to see how the heart is functioning in real time... gives much more info than an x-ray. Children Eli's age are sedated because they need to be very still for 45 min or longer. Make sense?

Met with the doctor after Eli fully recovered. There are concerns, one being the narrowing of the pulmonary artery on the right side where the stitching from the surgery took place. This can be typical in those who have had Glenn Shunts procedures. The worry is that the narrowing will cause a low blood saturation. Eli is already at 80 to 85 percent, so he does not need to go any lower. If this becomes a bigger deal before his next surgery--which is next year--then they will need to fix it before then. That is done through a cardio cath. They will run a line up his groin artery to his heart then expand a balloon to open the narrow pulmonary artery. 

AND I just got a call from Eli's cardiologist at Primary Children's saying that his EKG from last week shows some issues. Great. So tomorrow we are meeting a new cardiologist in Boise (because we moved) and are having another EKG done. Now an EKG is just stickers on the chest and measurements taken that way... not to big of a deal. Goodness, I hope everything is okay. It is okay that I cry a little, right?

Fever.

Eli is feverish today. No other symptoms, just burning up! Tylenol already given. 

I guess this is what I get for bringing him to church for all three hours! Sorry Eli baby, I promise to take better care. 

Shots cont.

Eli had his shot yesterday... but Matt took him, maybe not so bad? Only one more set this winter season! 

Oh, Shots!

Eli has learned to hate doctors' offices. Can you blame him? As soon as the nurse or doctor puts the stethoscope to his chest he cries and does all he can to reach for me. Breaks a mothers heart, I must say. 

Since December he has been receiving Syangis vaccinations. Syangis vaccinations happen once a month up to 6 months long, all through the RSV season. This is to protect a developing baby's lungs. Eli gets these because respiratory aliments can be devastating to heart babies. 

His shot is next week... Not looking forward to this at all.