I have learned that flexibility is essential to our survival with this kiddo. I'm sure it's essential with any new baby but I feel it is especially with mine. This past week I put into practice this valuable lesson. Last Friday, Holt was scheduled to be circumcised in Dallas at a pediatric urology clinic. We have had the hardest time getting this done in Tyler because he was not born here and they won't touch him until he is at least 1 years old. Even then he would have to be admitted to the hospital and put to sleep to have the procedure. I would like to avoid the hospital as much as possible so I was not to keen on that idea. Holly (the cardio NP) told me that they have many heart/NICU babies that this happens to and gave me name of this group. So I called them up and scheduled the procedure while it can still be done in the office. They do this in the office while he is under 10 pounds. Which is perfect for us because at the time Holt was weighing in at 8 pounds 11 ounces.
Thursday afternoon I packed the car up and we headed to Dallas to spend the night with a dear friend of mine from college. Before I left I had noticed that Holt was sounding a little congested and wheezing a little bit but I just chalked it up to my paranoia and trucked on down the road. When we got to my friends house that afternoon I feed this lil guy and he threw up the whole bottle. Then of course I started to get worried! He was feeling warm and still breathing funny, but again I just thought I was being paranoid. We had a wonderful afternoon just catching up and letting our boys meet each other. That evening he threw up his 6 o'clock bottle and then again at 9 o'clock. He was feeling very warm so I took his temperature and it was 99.6. Which to any normal baby that is not that bad of a fever, but for a kiddo who just 2 weeks before started out with a low grade fever and with in 24 hours was hospitalized due to fever, well let's just say it had his mommy concerned. He was also showing some symptoms that they had told me to watch for, so I did as instructed and called the on call cardiologist. After explaining what was going on my instructions were to give him Tylenol and keep checking his temperature. If it went to 101.0 or greater then it was off to the emergency room at Medical City for us. Dr. Laird told us to call him in the morning and let him know how he was doing. That night was a long night for us, because my sweet baby just did not feel good. He slept very well all and most of the night until about 3 am. After feeding him I rocked him back to sleep and tried to put him in the pack-n-play, but he just did not want to be put down. So I held him for the remainder of the night.
The next morning I called Dr. Laird as soon as the office opened and told him not much had changed. I was told to come in as soon as I could get there to be checked out. So off to the dr. office we went. On the way I cancelled the appointment with the urologist, which is why we originally came down there. At that moment I realized that there is never going to be a dull moment with this child, and that's ok because I've never been one to take the easy road and I'm afraid my child is following suit. At the cardiologists we had an EKG and an Echo to rule out this was a heart problem. Praise the Lord it was just "normal baby stuff". We were given an excellent report! His heart function has improved more from the last echo we had done at the office on Aug. 1st and though his heart is still enlarged it is smaller in size. Praise the Lord for some good news! I will take a sick kid any day of the week as long as his heart is functioning properly. We were asked to stay in town for the weekend just in case we needed to be hospitalized if his fever got higher or his breathing worsened. On a funny side note, Holt was wheezing and grunting and coughing all evening, night and morning but as soon as we got to the Dr's office, he was perfectly fine! I just laughed, because it would happen like that. I'm sure Dr. Laird thinks I need to spend a few days in the loony bin, or at least I felt that way. Sweet Holly (the NP) came into check on us before we left the office and she reassured me that they don't think I'm loony. I will forever be grateful for what she said to me. She told me that being a new mom in itself will make you feel like you're a little crazy but add something to it like a heart problem and it for sure make you feel like you're going insane. She reassured me that I am doing a great job and they are so very impressed with his progress and extremely pleased with where we are today. I am so thankful for her! I felt a little less loony after talking to her.
Before we left the office we were given symptoms to watch for and asked to hang around the metroplex for a couple of days to make sure he gets better before he head back to Tyler. And that is exactly what we did. Josh came in town after work on Friday and we stayed with our friends for the weekend. Though Holt did not feel good we had such a wonderful weekend! There is nothing like spending time with wonderful friends, it does wonders for the soul. Sunday afternoon we came back to Tyler. Holt hasn't run fever since Saturday evening and he is just a happy, healthy for now baby. My prayer now is that we can make it 3 weeks without getting sick. I've decided to take it one week at a time and consider it a small victory that 1. we weren't hospitalized again for the fever and 2. that we made it two weeks before we got sick again. So here's to making it 3 weeks.
As far as the circumcision, well my sweet boy weighs 9 pounds 1 ounce and if he keeps putting on the weight like he has been then he will be too big for the procedure in the office. I have rescheduled the appointment for September 4, when we go back to Dallas for another check up with the cardiologist. If he is over 10 pounds then we will just have a consult at the urologist and wait until he is 4-6 months to have the procedure. And of course, we will have to be hospitalized for this procedure. If he is under 10 pounds then we can have the procedure done that day. I am not holding my breath that we will be under 10 pounds and I am not looking forward to another hospital stay, I keep reminding myself that it could be worse. I am thankful we are where we are today. I know it is only by the grace of a mighty God that Holt is where he is today!
I have a motto that I try to live by and it applies so well for our tomorrows: "Blessed are the flexible for the will not break" So here's to flexibility!
Consider it pure joy, my brother and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. James 1: 2&3
Tuesday, August 28, 2012
Wednesday, August 22, 2012
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.
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.
Wednesday, August 8, 2012
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.
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.
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