Readjust

So I started this blog last Thursday, needless to say I haven't figured out how updating this blog fits into our route. I promise I will figure it out before Holt is in college ;) just be a little patient with me until I get the hang of this new mom stuff.


We made it home again! Well, we've been home from the hospital for one week tomorrow. I must admit this last hospital stay was much harder then any of the 12 weeks that we were at Medical City.  I know that sounds crazy, I've even thought how bazaar that sounds myself, but the only explanation I have for it is that I could see physically that Holt was sick. While we were at Medical City he was sick but looked like a healthy little baby. Not so much with this stay. I am so thankful for my family. I don't know what I would have done without them. Tuesday night my mom stayed with me and I am so thankful that she did! That was the hardest night for us because Holt was still running fever and not feeling good at all! Then Josh stayed with me the next night and Thursday night my sweet SIL was called in for "Mommy duty" and she stayed the night and let Josh and I go home and get an uninterrupted nights sleep. A good nights rest does wonders for the body and mind! I came back up to the hospital rested and feeling a little more confident that we were going to make it though this hospitalization ok! And that we did.

Friday we were sent home, again! They aren't really sure what caused our little miracle to have a fever because all of the million tests they ran on him came back normal, Praise the Lord- they were testing for some pretty scary stuff, in my opinion. Heart disease I can handle but heart disease and something else- God and I were going to have a little chat. But thankfully we didn't have to go down that road. All they could tell us is they found some bacteria in his urine, but it's a unique kind so they classified it as a UTI but not your normal UTI. The bacteria that was growing is found on the skin so the only thing they could think of is this came from the cath. he had placed in the NICU for the heart cath. procedure. Man was I glad to hear that's all it was!

The weekend was pretty uneventful except for a couple of sleepless nights (but that's nothing new) On Sunday my mom volunteered her babysitting services so that Josh and I could go to church. We gladly excepted the offer because we haven't been able to go to church since before I was hospitalized. Even though we haven't been to church in what has felt like an eternity I feel like I have grown so much closer to the Lord. I  know what you're thinking, well of course silly look what you've just been through!  My music has been my life line these days. I have had better times of worship while in my car then I have ever had in a corporate setting. Which kinda sounds a bit crazy to me, but it reminded me that worship can be anywhere at anytime. It doesn't have to be limited to a church building with a music minister singing hymns. Don't get me wrong that's a great thing and there is something special about worshiping with fellow believers, but it's not limited to just there. Well that's my ramble for the day! All that to say this experiences has opened my eyes and changed my way of how I worship.

This week has been a week of adjustments to say the least. Now that I have been able to catch my breath from the events of the past couple of months I have done a lot of processing. When you're in the middle of a situation "survival" mode kicks in and you do anything you can to make it through. Now that we're home I feel like that mode has shut off and we can relax for a moment. It has given me lots of time to process. Which can be a good or bad thing. This is going to sound strange but I've just started realizing the reality of what all we went through. Call it what you want but I think my mind was in shock for a while and then drugged (which I am thankful for) and now that I am back in my right mind I've had lots of freak-out moments. The verse that is on repeat in my head is "Trust in the Lord with all your heart". This has a whole new meaning to me. I keep telling myself "Trust in the Lord with all his heart" I feel as though I am in constant prayer giving my fears to the Lord. I know that the doctor's wouldn't have let us go from the hospital if they weren't confident that for right now Holt's heart is ok. And in fact the report we got on Tuesday from our visit to the cardiologist was that his heart has improved a little more. It is still enlarged but the ventricul has shown more improvement. Which is music to a mother's ears. I can't help but keep in the back of my mind that is heart is still not perfect. When we were in the hospital in Tyler the doctor that we were seeing came in after the echo was done and said "Man, this kid's heart is a mess!" I'm sorry but there are certain things that I do and don't need to hear and the fact that my child's heart is not perfect and worse a mess is one of them! I understand that we have issues but really to come in and say that it's a mess does nothing productive!

I wanted to walk Holt right out of the hospital right then and there! But after calming myself down and thinking rationally we stayed. Ever since then I haven't been able to get that out of my mind. That is one thing that I realize and am so grateful for this group of cardiologists that are treating my sweet boy. They have given us just enough information to allow Josh and I to feel informed but they have leaving out the details like "your kids heart is a mess". Really it does nothing productive. Just when I thought I couldn't handle this anymore, Holly the wonderful NP with this group called to check on us and allow me to express all my fears. I can't tell how wonderful it is to have her. She gives me the facts in a simple way that I can understand and is always reassuring.

Fast forward today. I am doing much better! I had a "slap in the face moment" this past Sunday at church. I was asked how we are doing and I told them that Holt's ok and I'm a mess. The response i got was harsh but I needed to hear it. "You had such great faith when y'all were in the hospital, what happened to it?" My first response was "You sit in a doctors office and be told that your child might be having heart failure and tell me you wouldn't be a mess!" But I didn't have much to respond back after that. I know it's new mom stuff but I am still trying to figure out what is "normal baby" and what is "heart baby" Here is a good example of what I mean. When we were at his check up with the cardiologist we were given a good report but after that the dr. said he is concerned that Holt is showing signs of heart failure or it could be acid reflux- because naturally they are the same symptoms. He wasn't really concerned because he was breathing normal and wasn't showing signs of distress. So he said "we'll touch base with you on Thursday and see how he's doing. If he hasn't improved any then we would do further testing to see what was going on." Then he ended with: "If everything is ok on Thursday then we'll see him back in a month, have a good day!"

And out the door he went! I was left there holding a kid that might or might not be in heart failure and I'm suppose to just go home?  Needless to say we had a couple of rocky days. I freaked out about the smallest movements. Friday morning I called Lindsey, my wonderful SIL, crying because I thought there was something wrong with his breathing. She dropped everything and come rushing over. Thank goodness her and my brother live only 2 minutes away. After her assessment and my calming down we decided that it was just gas.  I don't know what I would do with out her, I think the cardiologist need to pay her because she has saved them a lot of freaking out phone calls.

Sunday after church I really started digesting what was said to me that morning. I am so guilty of not trusting that Holt's heart is going to be ok. I keep forgetting that the Lord has everything under control and worrying about it does nothing but cause lack of sleep. I would like to blame sleep deprevation for the whole thing but when I am honest with myself I did need to completely give it over to the Lord. So that's what I did. I am happy to say that we are both doing good! Holt is sleeping in his crib and last night he only woke up once. Which makes for a more happier mommy in the morning. We have determined that is acid- reflux that was causing the symptoms and we have been put on medication to help with it. Heart disease can cause acid reflux  and i would take acid reflux anyday of the week over heart failure. I feel like we have taken a turn for the better! I am relaxing more and learning to enjoy every moment I get with this sweet boy. He is growing up way to fast for me!
I must end this now and go feed this kiddo- he's getting grumpy! Thank you for your continued prayers for our family as we adjust to our "normal" home life. I promise I will do much better at updating this blog.