Home Sweet Home-- or so I thought

Well we have made it through our first week at home and were just starting to get adjusting to life at home. Last Monday we went and met our pediatrician and on Wednesday we went back to Dallas for an appointment with the cardiologist. We had such a great report from that visit. Holt's heart is still stable and they are pleased with his progress. The rest of the week was lots of sleeping and enjoying our time at home. We were given a 2 week follow up with the cardiologist and are just watching until they feel like it is time for another intervention.

Our adjusting and enjoyment of home came to a screeching stop yesterday morning. On Monday I had noticed that we were becoming a little more fussier then normal. I just chalked it up to what I thought was acid reflux. We were given a medication to help with that and thought everything was just grand. At 3 am on Tuesday morning we awoke for feeding time and I noticed that Holt was feeling a little warm. I changed him from the jammies he was wearing to a onsie in hopes that would cool him off. I took his temperature and it was 98.9. I was glad there was no fever and went on about my business. Holt never really went back to sleep, just fussed  until 6 when it was time for more food. At 6 I noticed that he had not cooled off any and in fact felt much warmer. I took his temp. again, this time it was 100.1. And that's how are crummy day started. I called and got an appt. with the pedi dr. thinking we'd get some meds and be send on our merry way home. Boy was i mistaken. I am so glad that our doctor airs on the side of caution. While in the office we had labs drawn, blood cultures were done to rule out infection in the blood, chest x-ray to make sure he didn't have pneumonia and last but not least a lumbar puncture (otherwise known as a spinal tap).

When you're going on a very small amount of sleep the world seems much harder to deal with and add hunger to the mix and you have a recipe for disaster. While all this was going on I just sat in the office with tears streaming down my face. My sister-in-laws sister is the nurse for our pediatrician and I must say it was so nice to have a familiar face when all this is going on. She came over and gave me a hug and said "I know you thought you were finished with all of this". I must say, some part of me did think that. The selfish part of me hoped and wished that we would be able to enjoy the remained of his newborn stage without any more big dramatic scenes. Boy was I mistaken! After the x-ray and labs were done I was advised to have Josh come to the office for some moral support. So I put down my "superwomen" mask and called in reinforcements. It's amazing what the presence of my sweet husband will do for me, that and a granola bar I found in the diaper bag dried those tears right up. It amazes me this post partum business is like nothing I've ever experienced before.  I know that this to shall pass but man I wish someone could have given a little warning about this part! Ok, enough about me back to the crummy day. While the lumbar puncture was being preformed we were asked to take a walk. I am so glad we were given those orders. I don't know of a more helpless feeling then having your kiddo handed back to you after such a yucky procedure and he looks at you with tears in his big eyes that seem to say "why'd you let them do that to me". It' s enough to rip your heart out. I'd give anything to make this all go away for him, but God must think all of us are stronger then I give us credit for.

After what seemed like an eternity we were instructed to go straight to the hospital, do not pass go or collect $200. That seems to be a repeated theme with us. So we gathered our items and headed to the hospital. Luckily we were admitted to the hospital in Tyler. It's so much easier on us then being in Dallas. I must confess, after getting settled in our room here I felt out of place.  "That's not how they do it a Medical City" seemed to be a repeated theme as we were getting checked in and settled. I told Josh that I wanted to go "home" (yes, don't worry I was referring to Medical City- after all we did reside there for 12 weeks). We have decided for now to keep Holt here in Tyler. If our stay becomes long term then we will transfer over to Dallas, back "home".  We are very hopeful that this stay will very short and won't need to go back to Medical City.

"Now what?' I know is the question on every one's mind. Today we are resting. Yesterday Holt was stuck more times then I can count. He has a band-aid and scar from being poked from head to toe, literally. They tried probably 8 times to get an IV started and failed. They finally had to go to the last resort and put the IV in his head. I must admit I have never seen or even heard of that being done but it can be and has been. I was relieved that they finally got the IV in but they have taped a cup to his head to protect the IV. I can't help but this how painful it is going to be when they remove all the tape they have stuck on his hair. I have already been warned that he will be bald on that side once all the tape is removed. I'm not so much worried about the hair as I am the act of him becoming bald. This kiddo will be one month old tomorrow and I feel has already been through more then most go though in a life time. But he is such a trouper.

We still don't know exactly what is causing the fever. Last night we had a very rough night. Around 2 am he spiked a fever to 101.0. Fever puts extra stress on the heart which then has a domino effect on so may other things. So we worked to get the fever down and then around 3 he was placed on oxygen to help give his body a break and allow him to get some rest. It's amazing what a little oxygen will do to his mood. He feel asleep and allow me and my mom (who so wonderfully volunteered to stay with me so I could get some kind of rest and allow Josh to go home and sleep so he could work.) to get a small amount of rest. For now we just wait and watch to make sure he don't get another high fever, we still don't know what is causing his breathing problems or his fevers. Please be in pray that the doctors will find the issue and Holt will be restored back to health. We did have an echo preformed yesterday and our cardiologist in Dallas read it and gave us a good report. His heart function has not changed from last week and they are ok with where he is. We have been told that if we feel like we need to be transferred to Dallas then they will not hesitate but all the doctors are in agreement that we are ok here in Tyler for now. I feel that if this is going to be long term or he worsens again tonight then we will consider traning over to "home", but for now we are again playing the waiting game. Lots of sitting around.

I rest assured that this is just part of this sweet kiddo's story but I can't help and wonder when is enough enough? I know that God is good and has everything under control. So I leave him again in the best place that I know of. In the hands of our mighty and wonderful creator and maker who spoke us into being and loves us more then we can comprehend. It's so reassuring knowing that I don't have to worry about our tomorrows.