Sons and Daughters of the King

This morning we all got dolled up (even Christopher) and attended a Royal Princess Tea. The girls were so excited about it that they were going crazy all morning. (and they even left the preeties in their hair for more than 10 minutes)

This event was part of a MOPS group activity and my neighbor and good friend invited us to go along. How could I resist? We all had such a great time and it was a treat to get out of the house and play with all things pretty. They put a lot of hard work into it and the girls got to have a little fun. My mom and sister and Sarah were able to come along too.

We had a little tea time with treats, a story and a craft :o) None of the girls really were able to sit and listen to the entire story... hopefully they have better attention spans in school! It was a neat story about being a princess of the Lord... I think I'll have to find out what the name of the book was. 

A few people have asked me about Christopher so I wanted to just let everyone know that he is indeed home with us, not in the hospital. Honestly, looking at him you might never really know that he even had a thing going on. Believe me, I had no idea... even taking him into the cardiology clinic I figured they would just think it was an innocent murmur. He is taking Lasix twice a day to help ease the burden on his heart. Right now is the watch and wait phase. We watch his weight, his breathing, his heart. If he does well this month, we'll watch it next month. There is a possibility of surgery but right now we don't want to think much about that... and hope that he will close it on his own. :o)


And really most of the symptoms of his heart issue you wouldn't notice unless you were me, and I thought it was a cold. He had just been struggling to eat, having to take more breaks and getting more tired. And he would sleep and sleep. When we came home from his appointment the other day he slept almost the entire afternoon and night... only up for brief periods. We just had worn him out completely. 


The not so visual signs of his heart failure are the enlarged left side of his heart. 


To everyone who has volunteered to bring us meals... Thank You. We cannot express how touched we are by the generosity of our friends and family for your prayers, thoughts and kind actions. Knowing we are not alone in this has brought a great deal of comfort to us. 

I heard this song when I was pregnant with Christopher and it would bring me tears. (Matt Hammit wrote it regarding his son that had heart issues when he was born) I always felt this song was meaningful about all of my children because I love them with all my heart. After my cousin Justin died I had a difficult time wanting to connect with people again because I was afraid of how much it hurt to lose someone I loved... eventually I realized I was only hurting myself in a different way. I can't imagine the pain of losing a child, and I pray I won't find out with any of my precious ones.

This song means even more now...(All Of Me) <---- I encourage you to listen to it and be touched too. 

Day after

I think today I have wavered more between tears, anger and laughter... probably just adjusting to things. Part of me is the little angel on my shoulder saying "This is fine! Nothing is really that wrong, you are just over thinking things" then there is the little devil dude saying "This is awful! He could have surgery and even die!"

So the truth is probably somewhere in between. I suppose after a few days I will adjust to all of this and life will feel back to a more normal. The waiting is still hard... but I'm trying not to look at it that way. Because with this... we could wait for 9-10 more months... or who knows how long. I'm enjoying his little hands, fingers, eyes, nose... I enjoy his snuggles and his coos.

It will be important to see how he does with the Lasix. I called into the clinic this morning and Barb reeasured me on how safe the medication is to give him, that this was helping him. I have a feeling I will end up talking to them quite a bit in the next few months... sorry guys.

Oh and I forgot. His weight at the clinic was 10lb 6oz. 

Something unexpected

Grab a cup of coffee, soda, lemonaid or whatever wets your whistle and sit down. This will probably be a long and wordy post. I've got my coffee after the morning I've had!


Ok first update is dealing with his MRSA... this is an easy one. It's not an active infection therefore we can just watch it and just need to be careful if he would ever get sick.


Second update, remember that murmur we found last Friday? Well here we go.


Chris and I came into the clinic at about 9am this morning to meet with Dr. A (the cardiologist). The nurse did a thorough workup/interview, EKG and blood pressures. We moved into another room where we started on the Echo (an ultrasound of the heart)


I guess I figured out pretty quick that things weren't normal because instead of a quick 10-15 minute scan... we were in there for an hour. My second clue that things weren't quite right... the doctor came in during the test and had them check something again. He did really really well during all this fussing about, he had a few moments where he got upset because he wanted to go to sleep but we put a little sweeties (sugar water) on his pacifier and he finally went to sleep.


So what did we find out?


He has a large VSD and a small PDA.

A quick refresher for you... This is a VSD.

This is a PDA.

His heart is starting to show signs of heart failure. (his left Atria- one of the chambers of his heart) has already started to thicken and his pulmonary pressures are elevated slightly. This is from the VSD, a large amount of blood is rushing through that hole and putting more pressure on the other Ventricle, that it's not supposed to have. 

Dr. A believes that Christopher's small PDA might be because of the large VSD that he has. (Getting sick of Acronyms yet?) Here is a quote about PDAs ... skip it if you don't care, otherwise it's pretty easy to understand.

"Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.

In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries."

(http://www.nhlbi.nih.gov/health/health-topics/topics/pda/)

The Plan?

Dr A is starting Christopher on Lasix, a medication that will help pull off fluid and reduce the work his little heart is doing (also will make him pee more in case you were wondering haha!)

He is going to talk to Dr. Z (our pediatrician) and we will see Dr. Z again on Tuesday. We are going to need to watch his weight carefully as well and may need to supplement him. Does this give me an excuse to eat more so that I can continue to keep him growing?  Pass the pepperoni pizza please!

We come back to see Dr A again in a month to check his heart again. We will know more then. He asked me if I wanted to discuss surgery but I wanted to wait until the one month appt to see where things stand. 

Will his heart hole close? There is a chance yes. Unfortunately for Christopher the hole is not located in the muscular tissue of the ventricle... and it's large.

When do we need to consider surgery? If Christopher starts showing signs of not being able to compensate (faster breathing, more difficulty breathing, lips turning blue, not eating well) or if one of his heart scans shows that the heart is getting thicker. 

Why are they waiting? Why not do surgery now? As long as Christopher remains stable we are ok to wait. If at the end of this surgery is what we do we will make it safer for him by waiting and letting him get a little larger. Plus by waiting we give him a chance to close it on his own. 

But that is where things stand currently. I'm more than happy to answer questions and comforted by your prayers. Please continue to pray for him! I'm so thankful for the staff there that are my co-workers and friends. I'm comforted that they are there to help us through this and that I know I can call any time to ask silly questions or concerns. What a blessing they already are to us....

And now we watch, wait and rest in the Lord. 

Never Dull... pass the salt please

Christopher is trying to catch up with his eldest sister in the number of visits to specialty doctors it seems. At 7:30am I received a call from his pediatrician stating that his culture grew a large amount of MRSA and that he needed to get in to see an Infectious Disease specialist ASAP.

Did I mention that the nurse mom combo sometimes is awful? I've seen MRSA, I've heard about MRSA over and over and over again. Did I ever think that my 6 week old baby would have it? I mean how is it possible? Where did he get it? What does this mean for him? I know there are powerful antibiotics out there that can kick this bug but they can also be pretty tough on your system as well. Will he need to take these?

Needless to say I had a few moments of panic this morning. I'm thankful to all of you that I texted early this morning in panic and the reassuring you granted with offering of prayer. It took a bit for me to relax, it just caught me off guard so much.

Funny. When it's your son or daughter... it is terrifying to get an unexpected phone call. I can only imagine what those parents feel like when they get a cancer diagnosis in that way.

He has an appointment on Wednesday so we will know more then. I cannot even really speculate what any of this means. I don't have a knowledge base to go off of. So until then we wait... But it is some relief to have an idea about what might be going on. Because I guess, it wasn't really the stuffy nose that bothered me... it was the swollen lymph nodes... I knew something was off when they started getting larger.

Hopefully now we can treat this and move on... with nothing more to worry about then when he will start cutting that first tooth.

Thank you as always for your prayer and support... even in the simple things it is greatly appreciated.

(I think his eyes are going to stay blue!)