Rhys Man,
*Let me apologize in advance that Cameron has started calling you "Rhys Man Police Man" and now it is rubbing off on me and Daddy!
You made it to Wednesday's doctor's appointment on time at 8:00, but only because Daddy left Mommy and Cameron behind! I dropped her off at school and met him there as fast as I could. Of course there was tons of paperwork to fill out anyway.... We met with Dr. B, your GI doctor, and she was pleased to see that you weighed a full 7 pounds. The lighting in our exam room was a little dark and made you look even more jaundiced, but we assured her that your color was getting better and that you seem to be doing great. She got all caught up on our time at home and encouraged us on some easy things to try to make your feedings better. We have now switched to Dr. Brown's bottles after using the generic ones from the hospital, our new Tommy Tippee bottles (too fast of a flow for you) and our old Avent bottles (gave you too much gas). Hopefully you will stick with these and be happy!
We also started you on an acid reflux medicine just in case that was part of the problem. Sometimes you would fuss and arch your back while eating, but you don't spit up a whole lot. Now you have three different medicines that you are taking at all hours of the day. You still eat every four hours, which makes for a long day. For some reason, the 4:00 am feeding is the worst! You eat well but never seem to want to go back to sleep. I think when I do finally go back to work, I just might be a zombie until at least 10:00 or when I get some serious caffeine.
Then Thursday, we headed to the Methodist Hospital to do a swallow study based on Dr. B's recommendation. She wanted to make sure that everything was going down the right way and to see exactly how you are eating. It was very interesting to watch, but the appointment was a little stressful for Mommy. Since you have eat well for the test, Mommy had to hold off on feeding you ahead of time. We got there close to 8:00 (who makes it anywhere on time with a new baby?!?) and waited to get you registered. Around 8:45 when all our paperwork was done, the receptionist tells me that our appointment time was listed as 11:00 in their system. Of course, their system also had all of our address and insurance information wrong too, so I think there was a big mix-up. I told them there was no way we were going to last until 11:00, so they found a way to work us in at 9:30. Which meant that we sat in the waiting room for almost 90 minutes and you barely made a sound. You were so good!
The test was pretty quick. They put barium in your bottle which shows up black on an x-ray. You were using two tongue movements to get one good swallow, which means that you were working too hard to get your food down. That is why you get tired and take a long time to finish, but it also means that you start to burn calories before you even finish eating them. We are going to get a thickener for your formula to see if it will help you take one big swallow at a time.
Then Friday, we went for your one month checkup at our regular pediatrician. We came with an entire folder full of your discharge records from the hospital and all your recent lab results. We were pleased to hear that your bilirubin is down to 3.9 and your liver enzymes were either holding steady or improving. Your platelet count is completely healthy and you had even grown another 3/4 of an inch and gained 2 oz. The doctor got all caught up on your status and said we have plenty of great doctors on your case, so we just need to come back every two weeks to have your weight checked if we haven't already done so at the GI doc.
This Monday, we head to Houston to see the liver specialist at the clinic at Texas Children's Hospital. We are very thankful to have friends helping us with Cameron so she can stay here at go to school as usual. We pray that it will be a short visit and that they confirm you are on the right track to everything getting 100% better. It's your first road trip! Hopefully the next one will be for a fun reason...
Love,
Mama
Saturday, August 25, 2012
Wednesday, August 22, 2012
Sunday, August 19, 2012
Saturday, August 18, 2012
Only your Grammy...
"I bet he is so glad that he made it home in time for Shark Week!"
Discharge Day
Yesterday when I got the call from your doctor at 12:00, they told me that your bilirubin was down to 5.3 and that you were going to go home! I was hanging around the house since I wasn't sure what our plans should be, but I had to get busy packing up all your things. We had barely gotten your car seat installed the night before. But yet again, you never seem to do things the ordinary way, so we didn't exactly follow my imaginary schedule.
The one hurdle that I wish we would have taken care of earlier was your circumcision. We had to wait to have it done when your blood counts were back in a high range, so we were told that a doctor would come by and take care of you on her regular rounds, probably in the late afternoon. She apparently covers five hospitals, so we had to just wait. I got to listen to a horrific list of possible side effects and found out more than I ever wanted to know about it.
So here's how our day progressed:
12:00 Got the call, texted Daddy with the good news! He was stuck at a meeting for school and was so excited. Started gathering up all our stuff just in case we were there for a little while.
1:00 Got a call from our favorite nurse Laura that they were working on getting all your prescriptions set up and that I needed to go find a special baby vitamin for you. Apparently it is over the counter, but the three places I tried all had to special order it. It was quite an ordeal that eventually required the hospital to have some delivered for us.
2:00 Got a heavenly message from Aunt Kara saying she would take care of your big sister and pick her up from school so we didn't have to worry about making it there by 6:00. Boy was that a huge help! Dropped off her car seat at their house and kept going.
2:30 Got a call from the coordinator for the doctor in Houston so we could set up your appointment. We didn't have much choice in the time, so we have to be there on Monday the 27th at 8:00 am! That should be a fun morning of traffic with school starting then too.
3:00 Finally made it to the hospital and started a long process of paperwork and phone calls to other doctors. In just a few hours, you had five doctors appointments scheduled for the next five weeks. We will be seeing our pediatrician, the GI doctor, the hematologist, the liver specialist, and a developmental pediatrician just to get you registered in their system for any future needs. Your social calendar is already very busy, my man!
4:00 Dr. Ahmad headed out for the day and came to wish us well and give me a hug. He said he wanted us to email and follow up so he would know how you were doing, but that he hoped he didn't see us again. I told him how much we appreciated all he had done but that we felt the same!
5:00 Dad arrived and wondered why you still hadn't "had your pencil sharpened" as Nurse Laura called it. He also was surprised to see that they had moved your bed into a tiny corner so they could make room for a set of twins, so we were up close and personal with another little boy that was born the day before. We got more lessons on the special measurements we need to use to mix your formula/milk concoction and all your medicines. It seems less daunting looking back on it, but at the time I was a bit overwhelmed!
6:00 Still no doctor, so we left to grab something to eat and pick up a few supplies that we would need at home. I wanted to make sure we got to tell Nurse Laura goodbye, and we were hoping you would be finished with your procedure when we made it back at....
7:00 But you weren't. She finally arrived to do the circumcision at 7:30 and said that she had no idea we were waiting on her to be discharged, so she apologized for not coming there first. (Nice, but not much help to us now!) So we waited some more.
8:00 You were done and were due to eat, but you screamed more than I have ever heard you scream in your whole life. Maybe combined. It was such a surprise since they told us you would have lots of numbing meds and might not feel much until hours later. You fussed and wouldn't eat your bottle, so it took over an hour and a half before we gave up. The nurse told us that as soon as you had successfully peed that we could go home....
But that didn't happen at 9:00.
Or 10:00. We joked about buying you a clean urine sample so you could pass this one test... We talked with the new parents that we were still cramping. We were practically falling asleep in our chairs as we held you and prayed that you would just go!
Finally at 11:00, we whooped and hollered in victory as the nurse confirmed you had a wet diaper. All my thoughts of us posing for a nice picture on our way out of the hospital were tossed out. We just wanted to pack up all your stuff and get out! But we were surprised by how tiny you looked in your car seat and Daddy was so nervous about making sure you were buckled in tight.
And then we got home and it was time for you eat again....
Still loving you,
Your tired Mama
The one hurdle that I wish we would have taken care of earlier was your circumcision. We had to wait to have it done when your blood counts were back in a high range, so we were told that a doctor would come by and take care of you on her regular rounds, probably in the late afternoon. She apparently covers five hospitals, so we had to just wait. I got to listen to a horrific list of possible side effects and found out more than I ever wanted to know about it.
So here's how our day progressed:
12:00 Got the call, texted Daddy with the good news! He was stuck at a meeting for school and was so excited. Started gathering up all our stuff just in case we were there for a little while.
1:00 Got a call from our favorite nurse Laura that they were working on getting all your prescriptions set up and that I needed to go find a special baby vitamin for you. Apparently it is over the counter, but the three places I tried all had to special order it. It was quite an ordeal that eventually required the hospital to have some delivered for us.
2:00 Got a heavenly message from Aunt Kara saying she would take care of your big sister and pick her up from school so we didn't have to worry about making it there by 6:00. Boy was that a huge help! Dropped off her car seat at their house and kept going.
2:30 Got a call from the coordinator for the doctor in Houston so we could set up your appointment. We didn't have much choice in the time, so we have to be there on Monday the 27th at 8:00 am! That should be a fun morning of traffic with school starting then too.
3:00 Finally made it to the hospital and started a long process of paperwork and phone calls to other doctors. In just a few hours, you had five doctors appointments scheduled for the next five weeks. We will be seeing our pediatrician, the GI doctor, the hematologist, the liver specialist, and a developmental pediatrician just to get you registered in their system for any future needs. Your social calendar is already very busy, my man!
4:00 Dr. Ahmad headed out for the day and came to wish us well and give me a hug. He said he wanted us to email and follow up so he would know how you were doing, but that he hoped he didn't see us again. I told him how much we appreciated all he had done but that we felt the same!
5:00 Dad arrived and wondered why you still hadn't "had your pencil sharpened" as Nurse Laura called it. He also was surprised to see that they had moved your bed into a tiny corner so they could make room for a set of twins, so we were up close and personal with another little boy that was born the day before. We got more lessons on the special measurements we need to use to mix your formula/milk concoction and all your medicines. It seems less daunting looking back on it, but at the time I was a bit overwhelmed!
6:00 Still no doctor, so we left to grab something to eat and pick up a few supplies that we would need at home. I wanted to make sure we got to tell Nurse Laura goodbye, and we were hoping you would be finished with your procedure when we made it back at....
7:00 But you weren't. She finally arrived to do the circumcision at 7:30 and said that she had no idea we were waiting on her to be discharged, so she apologized for not coming there first. (Nice, but not much help to us now!) So we waited some more.
8:00 You were done and were due to eat, but you screamed more than I have ever heard you scream in your whole life. Maybe combined. It was such a surprise since they told us you would have lots of numbing meds and might not feel much until hours later. You fussed and wouldn't eat your bottle, so it took over an hour and a half before we gave up. The nurse told us that as soon as you had successfully peed that we could go home....
But that didn't happen at 9:00.
Or 10:00. We joked about buying you a clean urine sample so you could pass this one test... We talked with the new parents that we were still cramping. We were practically falling asleep in our chairs as we held you and prayed that you would just go!
Finally at 11:00, we whooped and hollered in victory as the nurse confirmed you had a wet diaper. All my thoughts of us posing for a nice picture on our way out of the hospital were tossed out. We just wanted to pack up all your stuff and get out! But we were surprised by how tiny you looked in your car seat and Daddy was so nervous about making sure you were buckled in tight.
And then we got home and it was time for you eat again....
Still loving you,
Your tired Mama
Friday, August 17, 2012
With Baited Breath
Little Lamb,
We are trying not to get too excited and hang all our hopes on tomorrow, but your doctors have mentioned that if your bilirubin continues to go down as it has this week, then there is a chance that you might get to come home. Like to our house. And your own room, where there are no beeping machines and other crying babies. After almost a month of life in the NICU, we are waiting with baited breath to see if you get to come home.
Tonight we went out to dinner since I didn't feel like cooking and your daddy said that we might not be a threesome again after tonight. :) We probably won't be going many places after you are here, so it was a nice casual night out before we hunker down in "baby jail" as your Uncle Chad likes to call it. We have had lots of friends offer to bring us dinners and we will happily take them up on the offer soon. With all the chaos of going back and forth to the hospital, we thought it would be easier to wait until we were home for good to start the meals, but they will be greatly appreciated.
We also have been cautiously trying to make sure that things will be ready for you if tomorrow is the big day. Daddy fought valiantly with the car seat base to get it installed in my little SUV (sorry to any future passengers, the seat is almost all the way up!) and will probably add the extra base to his tomorrow too. I stocked up on groceries tonight after everyone else went to bed because I figured I couldn't sleep anyway. I even took a special outfit to the hospital tonight so you can wear it home. It's a onesie that says "little brother" and a tiny pair of navy pants. It is funny to me that you are almost a month old and you have never worn anything other than a simple onesie!
On the logistical side of things with your doctors, we have had to think ahead about getting a few things for you, including prescriptions. You are now on a very special (meaning very expensive) formula called Elecare which has a unique way of breaking down the fats in the bloodstream rather than going through your liver, so it is supposed to give your overworked liver a bit of a break. Unfortunately, you are not crazy about taste even though they are mixing it 2/3 formula and 1/3 milk. Apparently today they brought in the vanilla version of the formula and you seem to be doing a bit better with it. I hope it does its job because it is over $50 a can and we had to have a prescription just to get it. We are praying our insurance will cover at least some of the cost since you may be on it for a while.
I also had a worrisome thought about when you are home. You have only eaten out of the hospital's bottles, so I figured I would take the ones I have and let you try them out just in case. The nurses will be feeding you with them tonight and we will see how you do. I just didn't want you to get home and decide that you hate them and then we are frantically rushing to get something else. Maybe you will be easygoing like your sister was when she was a baby... Just go with it, Rhys!
It's an odd feeling bringing home a baby from the NICU. I imagined before you were born that we would be confident in bringing you home right away because we are no longer those nervous first-time parents. But I still think of you as tiny and fragile, and I feel like we are back at square one, just as nervous and unsure of myself as I was almost four years ago with Cameron. It will be a strange new thing just to walk around with you since you have been hooked up to monitors this entire time!
We have been waiting for these past three weeks to bring you home and now the thought of it is equally exciting and nervewracking. We will have a lot to manage with your doctor appointments and medicines and special mixtures for every bottle. But we are so thankful that you are still fighting, still growing, still so tender and sweet each day. We cannot wait to shower you with snuggles and kisses in our own house. So we will see tomorrow.
Mama needs to go to bed! Love you.
We are trying not to get too excited and hang all our hopes on tomorrow, but your doctors have mentioned that if your bilirubin continues to go down as it has this week, then there is a chance that you might get to come home. Like to our house. And your own room, where there are no beeping machines and other crying babies. After almost a month of life in the NICU, we are waiting with baited breath to see if you get to come home.
Tonight we went out to dinner since I didn't feel like cooking and your daddy said that we might not be a threesome again after tonight. :) We probably won't be going many places after you are here, so it was a nice casual night out before we hunker down in "baby jail" as your Uncle Chad likes to call it. We have had lots of friends offer to bring us dinners and we will happily take them up on the offer soon. With all the chaos of going back and forth to the hospital, we thought it would be easier to wait until we were home for good to start the meals, but they will be greatly appreciated.
We also have been cautiously trying to make sure that things will be ready for you if tomorrow is the big day. Daddy fought valiantly with the car seat base to get it installed in my little SUV (sorry to any future passengers, the seat is almost all the way up!) and will probably add the extra base to his tomorrow too. I stocked up on groceries tonight after everyone else went to bed because I figured I couldn't sleep anyway. I even took a special outfit to the hospital tonight so you can wear it home. It's a onesie that says "little brother" and a tiny pair of navy pants. It is funny to me that you are almost a month old and you have never worn anything other than a simple onesie!
On the logistical side of things with your doctors, we have had to think ahead about getting a few things for you, including prescriptions. You are now on a very special (meaning very expensive) formula called Elecare which has a unique way of breaking down the fats in the bloodstream rather than going through your liver, so it is supposed to give your overworked liver a bit of a break. Unfortunately, you are not crazy about taste even though they are mixing it 2/3 formula and 1/3 milk. Apparently today they brought in the vanilla version of the formula and you seem to be doing a bit better with it. I hope it does its job because it is over $50 a can and we had to have a prescription just to get it. We are praying our insurance will cover at least some of the cost since you may be on it for a while.
I also had a worrisome thought about when you are home. You have only eaten out of the hospital's bottles, so I figured I would take the ones I have and let you try them out just in case. The nurses will be feeding you with them tonight and we will see how you do. I just didn't want you to get home and decide that you hate them and then we are frantically rushing to get something else. Maybe you will be easygoing like your sister was when she was a baby... Just go with it, Rhys!
It's an odd feeling bringing home a baby from the NICU. I imagined before you were born that we would be confident in bringing you home right away because we are no longer those nervous first-time parents. But I still think of you as tiny and fragile, and I feel like we are back at square one, just as nervous and unsure of myself as I was almost four years ago with Cameron. It will be a strange new thing just to walk around with you since you have been hooked up to monitors this entire time!
We have been waiting for these past three weeks to bring you home and now the thought of it is equally exciting and nervewracking. We will have a lot to manage with your doctor appointments and medicines and special mixtures for every bottle. But we are so thankful that you are still fighting, still growing, still so tender and sweet each day. We cannot wait to shower you with snuggles and kisses in our own house. So we will see tomorrow.
Mama needs to go to bed! Love you.
Tuesday, August 14, 2012
Wait, what?
My Little Bear,
Yesterday was the day. We met with your doctor around 10:30 and there were not many results from the weekend to discuss. Overnight, they did the big panel of tests to see your blood counts, your liver enzymes and all the normal stuff. So when we talked with your regular doctor, we got the info from him that most everything had just stayed put. No big changes but a few small victories and certainly we can be excited that nothing went in the opposite direction.
We discussed that the pediatric GI doctor had a local surgeon that she would recommend, Dr. K. He has experience with doing the combo surgery that we would need to consider for you - a liver biopsy as well as a different dye test that would show any malformations within your network of bile ducts leaving your liver since they still cannot rule out biliary atresia. They could also do the procedure to correct any problem that they found at the same time. It could be a very simple surgery or it could turn into something really complicated.
The impression we got was that this surgery would need to be done within the next week to 10 days if possible, and that if the surgeon she recommended was not available here in San Antonio, then she would probably recommend that we go on to Texas Children's Hospital. The only downside is that when you are transferred from another place, they typically want to rerun all the labs and maybe even a few of the tests just to confirm with their own results, which could mean we would spend a whole other week just sitting around waiting before any progress is made.
So we finished that discussion and were thrilled to have the distraction of your Grandpa making a super fast visit. When he and Gigi met you the first time, it was a quick trip and he was a bit nervous to hold you since you were so small and had wires hooked up to you. He wanted to make sure that he got to hold you this time, and he got to help Daddy feed you a good lunch too.
We had a few hours of time to kill in the afternoon and then had to be back up at the hospital around 6:00 to meet Dr. B (the GI doctor) for the first time. We were very blessed that the Warshaks graciously offered to let your big sister come hang out for a few hours and play with all their kiddos so we could talk with just us grownups. (Still amazes me that people who have three children of their own always say "What's one more? Bring Cameron over!")
And the conversation with Dr. B went exactly the opposite direction of where I thought it was going.
Bo and I both agreed that we really like her and that if you did have to do follow up later in your life, she would be great to work with. We assumed that she was going to tell us the same thing about the local surgeon and the timeframe that everything would need to happen in. But instead, she told us there was no hurry. No rush to put you through the biopsy until we absolutely have to. She said you seem like you are doing great and eating well, and that she honestly doesn't think you have to have lab tests run from the hospital every day. She even said that if your numbers don't go in the wrong direction, she doesn't see why you couldn't be DISCHARGED and just go home, with us bringing you in a few times a week to be monitored and run blood work. This Mama's ears thought it all sounded too good to be true.
We were sort of stunned. I certainly don't want you to have any surgery until it is the absolute best thing. But I will admit that my heart was getting ready for some action. For us to be doing something, rather than just circling from home to the hospital every day with a feeling of helplessness. And now to hear her say "wait one more week" was just confusing. I thought that is what we just did! Which made me feel guilty for not being more thankful. I should be thrilled that the answer was wait!
Even this morning, I am a little confused over whose advice we are following now. I guess we will talk with your regular doctor again as soon as we see him and make sure that he is on board with all the things that Dr. B suggested. Which means you have another week to keep working and growing. If Dr. B is right, then your blood antibodies are the root cause of the liver getting backed up, and that means there is still the possibility that once those antibodies die off (could be between 6 weeks and three months) that your body will be better able to regulate all the things you need to process out. We know you can do it!
So here is the verse that I will be thinking on today. Psalm 37:7 Be still in the presence of the Lord and wait patiently for him to act. Waiting has never been my strong suit. I want to feel like I am in control, and waiting forces me to realize that I am powerless and dependent even more on God's grace. But what good is my help when God made you and knows you? I will keep reminding myself that we are thankful, we are humbled, and we are in awe of his power and mercy.
Loving you,
Mama
Yesterday was the day. We met with your doctor around 10:30 and there were not many results from the weekend to discuss. Overnight, they did the big panel of tests to see your blood counts, your liver enzymes and all the normal stuff. So when we talked with your regular doctor, we got the info from him that most everything had just stayed put. No big changes but a few small victories and certainly we can be excited that nothing went in the opposite direction.
We discussed that the pediatric GI doctor had a local surgeon that she would recommend, Dr. K. He has experience with doing the combo surgery that we would need to consider for you - a liver biopsy as well as a different dye test that would show any malformations within your network of bile ducts leaving your liver since they still cannot rule out biliary atresia. They could also do the procedure to correct any problem that they found at the same time. It could be a very simple surgery or it could turn into something really complicated.
The impression we got was that this surgery would need to be done within the next week to 10 days if possible, and that if the surgeon she recommended was not available here in San Antonio, then she would probably recommend that we go on to Texas Children's Hospital. The only downside is that when you are transferred from another place, they typically want to rerun all the labs and maybe even a few of the tests just to confirm with their own results, which could mean we would spend a whole other week just sitting around waiting before any progress is made.
So we finished that discussion and were thrilled to have the distraction of your Grandpa making a super fast visit. When he and Gigi met you the first time, it was a quick trip and he was a bit nervous to hold you since you were so small and had wires hooked up to you. He wanted to make sure that he got to hold you this time, and he got to help Daddy feed you a good lunch too.
We had a few hours of time to kill in the afternoon and then had to be back up at the hospital around 6:00 to meet Dr. B (the GI doctor) for the first time. We were very blessed that the Warshaks graciously offered to let your big sister come hang out for a few hours and play with all their kiddos so we could talk with just us grownups. (Still amazes me that people who have three children of their own always say "What's one more? Bring Cameron over!")
And the conversation with Dr. B went exactly the opposite direction of where I thought it was going.
Bo and I both agreed that we really like her and that if you did have to do follow up later in your life, she would be great to work with. We assumed that she was going to tell us the same thing about the local surgeon and the timeframe that everything would need to happen in. But instead, she told us there was no hurry. No rush to put you through the biopsy until we absolutely have to. She said you seem like you are doing great and eating well, and that she honestly doesn't think you have to have lab tests run from the hospital every day. She even said that if your numbers don't go in the wrong direction, she doesn't see why you couldn't be DISCHARGED and just go home, with us bringing you in a few times a week to be monitored and run blood work. This Mama's ears thought it all sounded too good to be true.
We were sort of stunned. I certainly don't want you to have any surgery until it is the absolute best thing. But I will admit that my heart was getting ready for some action. For us to be doing something, rather than just circling from home to the hospital every day with a feeling of helplessness. And now to hear her say "wait one more week" was just confusing. I thought that is what we just did! Which made me feel guilty for not being more thankful. I should be thrilled that the answer was wait!
Even this morning, I am a little confused over whose advice we are following now. I guess we will talk with your regular doctor again as soon as we see him and make sure that he is on board with all the things that Dr. B suggested. Which means you have another week to keep working and growing. If Dr. B is right, then your blood antibodies are the root cause of the liver getting backed up, and that means there is still the possibility that once those antibodies die off (could be between 6 weeks and three months) that your body will be better able to regulate all the things you need to process out. We know you can do it!
So here is the verse that I will be thinking on today. Psalm 37:7 Be still in the presence of the Lord and wait patiently for him to act. Waiting has never been my strong suit. I want to feel like I am in control, and waiting forces me to realize that I am powerless and dependent even more on God's grace. But what good is my help when God made you and knows you? I will keep reminding myself that we are thankful, we are humbled, and we are in awe of his power and mercy.
Loving you,
Mama
Thursday, August 9, 2012
We're Coming to the Crossroads
My sweetheart,
You seem so unfazed by all of this. Yesterday, your daddy was at the hospital three separate times and never even saw your eyes open. (Grammy didn't want to rub it in that she was there late in the evening and you were wide awake...) I don't really know what day it is anymore, but I will try to recap what this week has been like.
Our doctor has run your bilirubin test every morning to see where you stand. A long time ago, we asked what the goal was for that number, and they said it needs to go to almost zero in order for you to go home. Your liver is just working so hard to process it out, but you are still eating great, almost 100 ml each time, which is about 5 oz. It has helped with your coloring a lot, even though you still seem to have a bit of a golden bronze coloring in contrast to the rest of our very white-as-a-bedsheet family.
Monday's hida scan was supposed to tell us if your liver was processing out all the things it is supposed to be, but the GI doctor warned us that he would not be surprised if the results came back abnormal. And they did. None of the dye made it out. Your tiny little liver is working hard to get out all the bilirubin and the excess iron in your system, so the dye just had to wait in line. The doctor said that if your numbers continued to trend down that it might be more conclusive to run the test again, but your bilirubin would have to be below a 4. Yesterday it was down to 7.0 and then today it suddenly went back up to 7.5.
The good news is that our doctor knows that we shouldn't go on like this forever. He was optimistically waiting and monitoring you to see if your body could keep fighting and bring the levels down gradually. However, if your numbers start to trend up, he knows that we should consider going to Houston. Any kind of surgical procedures need to be done before you are six weeks old, and you are approaching three, my love.
The bad news is that there are still possibilities that you have a malformation called biliary atresia that would require surgical correction to the duct that leaves your liver, and they may still need to do a liver biopsy. Fortunately, I believe both of these procedures can be done at the same time if necessary, which would minimize your exposure to anesthesiology and infection. A liver transplant is still not off the table, but we are trying not to worry too far in advance.
Monday will be another round of testing, and our doctor has decided that those results will be the final factor in whether or not we go elsewhere. I am feeling more at peace about it, but there are still lots of questions regarding what it will mean for our family since Daddy is already back at work and Cameron certainly can't sit around a hospital all day. We may be praying a lot in the next few days for God to make the next step clear. I think God wanted me to see this scripture today:
Isaiah 30:21 "Whether you turn to the right or to the left, your ears will hear a voice behind you saying, "This is the way, walk in it.""
We are so grateful to have many friends and family tell us that they are praying for you, ready to help us in any way that they can. You are very loved, Rhys Man!
Hugs and Kisses,
Mama
P.S. Sorry that I didn't see you much yesterday. My doctor confirmed that I have mastitis (Yeouch!!!!) and the fever and chills were just dreadful. It makes you feel like you have the flu and just can't function. I was feeling better this morning after a few rounds of antibiotics, but I only made it to lunch time before I was feverish again and had to come home for a nap. You are still a very happy eater and are the nurses' favorite for sure.
You seem so unfazed by all of this. Yesterday, your daddy was at the hospital three separate times and never even saw your eyes open. (Grammy didn't want to rub it in that she was there late in the evening and you were wide awake...) I don't really know what day it is anymore, but I will try to recap what this week has been like.
Our doctor has run your bilirubin test every morning to see where you stand. A long time ago, we asked what the goal was for that number, and they said it needs to go to almost zero in order for you to go home. Your liver is just working so hard to process it out, but you are still eating great, almost 100 ml each time, which is about 5 oz. It has helped with your coloring a lot, even though you still seem to have a bit of a golden bronze coloring in contrast to the rest of our very white-as-a-bedsheet family.
Monday's hida scan was supposed to tell us if your liver was processing out all the things it is supposed to be, but the GI doctor warned us that he would not be surprised if the results came back abnormal. And they did. None of the dye made it out. Your tiny little liver is working hard to get out all the bilirubin and the excess iron in your system, so the dye just had to wait in line. The doctor said that if your numbers continued to trend down that it might be more conclusive to run the test again, but your bilirubin would have to be below a 4. Yesterday it was down to 7.0 and then today it suddenly went back up to 7.5.
The good news is that our doctor knows that we shouldn't go on like this forever. He was optimistically waiting and monitoring you to see if your body could keep fighting and bring the levels down gradually. However, if your numbers start to trend up, he knows that we should consider going to Houston. Any kind of surgical procedures need to be done before you are six weeks old, and you are approaching three, my love.
The bad news is that there are still possibilities that you have a malformation called biliary atresia that would require surgical correction to the duct that leaves your liver, and they may still need to do a liver biopsy. Fortunately, I believe both of these procedures can be done at the same time if necessary, which would minimize your exposure to anesthesiology and infection. A liver transplant is still not off the table, but we are trying not to worry too far in advance.
Monday will be another round of testing, and our doctor has decided that those results will be the final factor in whether or not we go elsewhere. I am feeling more at peace about it, but there are still lots of questions regarding what it will mean for our family since Daddy is already back at work and Cameron certainly can't sit around a hospital all day. We may be praying a lot in the next few days for God to make the next step clear. I think God wanted me to see this scripture today:
Isaiah 30:21 "Whether you turn to the right or to the left, your ears will hear a voice behind you saying, "This is the way, walk in it.""
We are so grateful to have many friends and family tell us that they are praying for you, ready to help us in any way that they can. You are very loved, Rhys Man!
Hugs and Kisses,
Mama
P.S. Sorry that I didn't see you much yesterday. My doctor confirmed that I have mastitis (Yeouch!!!!) and the fever and chills were just dreadful. It makes you feel like you have the flu and just can't function. I was feeling better this morning after a few rounds of antibiotics, but I only made it to lunch time before I was feverish again and had to come home for a nap. You are still a very happy eater and are the nurses' favorite for sure.
Wednesday, August 8, 2012
All the Wrong Noises
Rhys,
Mommy was thinking the other night about what your life has been like so far. You have seen dozens of nurses, mostly in 12 hour spans. You have seen Mommy and Daddy every day, but we wish it was for more than a few hours at a time. You have been moved from one section of the NICU to another, but your view is pretty boring. And you certainly have some noisy neighbors!
There are machines constantly beeping. There are lights on no matter what time of day it is. You have had tubes and needles put in and removed, only to have them brought back a few days later. You have never been held in a sling, a car seat, or even snuggled close for more than a little while. We don't even know if you like to swing or sit in a bouncer. You have never taken a nap with Daddy on the couch. You have never nursed with Mommy in our big bed.
We visit you in the hospital every day and sometimes late at night, but when we come home, there are no noises. There are no hungry cries waking me up, just my alarm angrily beeping when I have to pump your milk again. The door to your room is shut since it is clean and waiting for you, and we are trying to keep the dogs out of there. Your books and toys are probably going to collect dust before you ever come home to see them.
But we are still dreaming big dreams for you. I smile when people tell me that you will grow up to be so handsome. Your birth weight was 6 lbs 2 oz, but I dream that you will be even taller than Daddy and eventually be 6 foot 2 inches! I picture you on the golf course with those same skinny legs that Daddy has, enjoying his patient teaching. I picture us on family vacations where we fit perfectly into a booth for four. We will keep on dreaming big dreams, and ignore all the unwanted noises.
Here are the scriptures that Daddy has read or prayed over you every day, my little angel:
Psalm 139: 13-18 "You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous - how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can't even count them; they outnumber the grains of sand! And when I wake up, you are still with me!"
James 5:13-16 "Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven. Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results."
Mommy was thinking the other night about what your life has been like so far. You have seen dozens of nurses, mostly in 12 hour spans. You have seen Mommy and Daddy every day, but we wish it was for more than a few hours at a time. You have been moved from one section of the NICU to another, but your view is pretty boring. And you certainly have some noisy neighbors!
There are machines constantly beeping. There are lights on no matter what time of day it is. You have had tubes and needles put in and removed, only to have them brought back a few days later. You have never been held in a sling, a car seat, or even snuggled close for more than a little while. We don't even know if you like to swing or sit in a bouncer. You have never taken a nap with Daddy on the couch. You have never nursed with Mommy in our big bed.
We visit you in the hospital every day and sometimes late at night, but when we come home, there are no noises. There are no hungry cries waking me up, just my alarm angrily beeping when I have to pump your milk again. The door to your room is shut since it is clean and waiting for you, and we are trying to keep the dogs out of there. Your books and toys are probably going to collect dust before you ever come home to see them.
But we are still dreaming big dreams for you. I smile when people tell me that you will grow up to be so handsome. Your birth weight was 6 lbs 2 oz, but I dream that you will be even taller than Daddy and eventually be 6 foot 2 inches! I picture you on the golf course with those same skinny legs that Daddy has, enjoying his patient teaching. I picture us on family vacations where we fit perfectly into a booth for four. We will keep on dreaming big dreams, and ignore all the unwanted noises.
Here are the scriptures that Daddy has read or prayed over you every day, my little angel:
Psalm 139: 13-18 "You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous - how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can't even count them; they outnumber the grains of sand! And when I wake up, you are still with me!"
James 5:13-16 "Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven. Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results."
Tuesday, August 7, 2012
The Rollercoaster Continues
Rhys Man,
We have had way more than our share of ups and downs the last few days. I think Daddy and Mommy's blood pressures are happy to take a break! Let's try to do a recap that won't go on and on for hours...
Friday afternoon, we watched you head off for an MRI scan of your brain and abdomen. Your doctor had told us that you were going to undergo quite a few tests and that your blood transfusion the day before would ensure that your body was reloaded and prepared for the stress. Daddy went back to the scan with you and said it was hard to see tiny little you in the big giant MRI machine with little headphones to block out the noise and an air cushion that held you still. They told us they would let us know when the results were in, and they came at a truly dreadful time. Daddy was there with you and Grammy while I was home putting your big sister to bed. It was Friday night around 9:00 I guess.
They said your brain scan looked clear, but that the scan of your abdomen led them to a diagnosis of an extremely rare chronic condition called neonatal hemachromatosis (let's just call it NH). It typically doesn't get diagnosed in men until they are between 40 - 60 years of age! And thought it is manageable in older people, it is very hard on a little body like yours. We were devastated when we began to read up on it online (horrible idea), but we did come across the name of a specialist out of Chicago that was highly recommended and has tons of experience with this condition.
So essentially, they gave us this terrible news and expected us to wait out the weekend and talk to them again on Monday. Not your Daddy! He is a doer, a fixer, a man of action. So he called the American Hemachromatosis Society. On a Saturday afternoon! And actually got a hold of the President and CEO, who miraculously agreed to get us in touch with this fabulous specialist (Dr. Whitington) and start some communication with everyone. We were so excited to feel that there was any kind of forward progress at all.
Monday was a big day. Early that morning, Mommy got a call from Dr. Whitington himself saying he would be happy to consult with our doctors and that they could contact him directly with your lab numbers. We felt that if you were going to be dealing with a lifelong health issue that we would be forceful advocates to get the very best people on your case. We did get to have a brief meeting with your doctor and a gastrointestinal doctor, who said we were looking at all the right things and that your upcoming tests were exactly what he would be interested in seeing.
That afternoon you also had a hida scan done, where they inject a dye that is attracted to liver cells and watch it flush through your liver and small intestines to make sure there are no blockages. We still haven't heard those results, but maybe within the day.
The best news was that Dr. Whitington called back our doctor and said he did not feel that your current stats reflected a diagnosis of neonatal hemachromatosis! We were so relieved since it would mean that there was a possibility that whatever struggles your little body is enduring, that there is a chance for a solution that would be permanent.
We understand that there are still a lot of possibilities. We have discussed being transferred to Texas Children's Hospital in Houston so that they could complete any surgical procedures there. There was discussion of a very distant need for a liver transplant, but we are praying fervently against it! If we still need to do a liver biopsy, we don't know if they can do a needle-based procedure to take a very small sample of tissue or if they will need more. We don't know if we will be admitted to the hospital or if we will be seen in their outpatient clinic. There are lots of variables based on how you progress.
All we know is that we will gladly wait and see. We will love and feed you every day. We will be thankful for every snuggle, every sweet sigh and look from your big eyes. We will pray for God to give us a sense of peace when we can trust the direction he is leading us, and we will pray that he will make our hearts cry out when we need to fight for a different outcome on your behalf. And we will be thankful that our tears of despair and frustration have been turned to smiles of joy for at least another day.
All my love,
Mama
We have had way more than our share of ups and downs the last few days. I think Daddy and Mommy's blood pressures are happy to take a break! Let's try to do a recap that won't go on and on for hours...
Friday afternoon, we watched you head off for an MRI scan of your brain and abdomen. Your doctor had told us that you were going to undergo quite a few tests and that your blood transfusion the day before would ensure that your body was reloaded and prepared for the stress. Daddy went back to the scan with you and said it was hard to see tiny little you in the big giant MRI machine with little headphones to block out the noise and an air cushion that held you still. They told us they would let us know when the results were in, and they came at a truly dreadful time. Daddy was there with you and Grammy while I was home putting your big sister to bed. It was Friday night around 9:00 I guess.
They said your brain scan looked clear, but that the scan of your abdomen led them to a diagnosis of an extremely rare chronic condition called neonatal hemachromatosis (let's just call it NH). It typically doesn't get diagnosed in men until they are between 40 - 60 years of age! And thought it is manageable in older people, it is very hard on a little body like yours. We were devastated when we began to read up on it online (horrible idea), but we did come across the name of a specialist out of Chicago that was highly recommended and has tons of experience with this condition.
So essentially, they gave us this terrible news and expected us to wait out the weekend and talk to them again on Monday. Not your Daddy! He is a doer, a fixer, a man of action. So he called the American Hemachromatosis Society. On a Saturday afternoon! And actually got a hold of the President and CEO, who miraculously agreed to get us in touch with this fabulous specialist (Dr. Whitington) and start some communication with everyone. We were so excited to feel that there was any kind of forward progress at all.
Monday was a big day. Early that morning, Mommy got a call from Dr. Whitington himself saying he would be happy to consult with our doctors and that they could contact him directly with your lab numbers. We felt that if you were going to be dealing with a lifelong health issue that we would be forceful advocates to get the very best people on your case. We did get to have a brief meeting with your doctor and a gastrointestinal doctor, who said we were looking at all the right things and that your upcoming tests were exactly what he would be interested in seeing.
That afternoon you also had a hida scan done, where they inject a dye that is attracted to liver cells and watch it flush through your liver and small intestines to make sure there are no blockages. We still haven't heard those results, but maybe within the day.
The best news was that Dr. Whitington called back our doctor and said he did not feel that your current stats reflected a diagnosis of neonatal hemachromatosis! We were so relieved since it would mean that there was a possibility that whatever struggles your little body is enduring, that there is a chance for a solution that would be permanent.
We understand that there are still a lot of possibilities. We have discussed being transferred to Texas Children's Hospital in Houston so that they could complete any surgical procedures there. There was discussion of a very distant need for a liver transplant, but we are praying fervently against it! If we still need to do a liver biopsy, we don't know if they can do a needle-based procedure to take a very small sample of tissue or if they will need more. We don't know if we will be admitted to the hospital or if we will be seen in their outpatient clinic. There are lots of variables based on how you progress.
All we know is that we will gladly wait and see. We will love and feed you every day. We will be thankful for every snuggle, every sweet sigh and look from your big eyes. We will pray for God to give us a sense of peace when we can trust the direction he is leading us, and we will pray that he will make our hearts cry out when we need to fight for a different outcome on your behalf. And we will be thankful that our tears of despair and frustration have been turned to smiles of joy for at least another day.
All my love,
Mama
Friday, August 3, 2012
Come Home to Me, My Angel
Little Bear,
We have had an emotional past few days and are starting to feel the wear of being pulled in many different directions. Your daddy has been home with me since this is his last week of time off before football starts on Monday, and I am thankful that he has faithfully taken care of shuttling Cameron and I all the places we need to go, while still keeping the house clean and watching over our finances. We have certainly eaten a lot of meals on the go lately, but we have lots of casseroles waiting in the freezer from your sweet Aunt Rachael.
Just a few days ago, we were so excited about your progress. Your color certainly looks so much better, and you seemed to be more alert and awake for feedings. You got to meet Mrs. Kim from Mommy's office, and she loved holding you so much that she probably would have stayed all day if we would have let her! Maybe you have a thing for dark hair because you just watched her so intently, like you were taking in our whole conversation. She gushed over how sweet and handsome you are, and I was in complete agreement. :)
Most of your test results have been positive, with your direct bilirubin count down to about an 8, which is half of what it was a week ago. Your doctors keep telling us that your liver is working hard to get it out of your system and that you just need more time. But we were quietly getting excited about the possibility of you coming home soon, even though no doctor had even brought it up. Daddy was determined to have your whole side of the house clean and ready for you, and we even bought an extra cushion to put in your carseat that will fit more snugly around you since you are still so small. Your new crib sheets even arrived yesterday, so your room is all ready for you. Here are a few pics of all your cute things:
Unfortunately, we got a call yesterday (Thursday) from a new doctor that will be assigned to you for the next week or so. He saw you for the first time on Wednesday and called to give us an update on where he thought the next few days were headed. Since he was the first doctor to ever call me, we were a little worried and were only about 5 minutes away from the hospital, so we waited to discuss things in person. He told us that he was starting a whole new round of tests for your liver, your blood counts and that you would be getting another blood transfusion that day. Though you had been progressing in a good way, he wanted to rule out as many things as possible that might be causing your body to still be fighting off bilirubin and destroying red blood cells. They even want to do an MRI of your brain to make sure that the bilirubin didn't cross over the blood-brain barrier (which is a very longshot and the test was ordered in your first days in the NICU and just hasn't been done yet). It was just a big blow when we were secretly hoping to hear good news.
I can tell that your daddy was just devastated, and I just kept trying to tell myself that you were born at just the right time, so we should trust that God has all your days planned in accordance with his purposes. I broke down on on Wednesday night after an exhausting day of running around and worrying over my work maternity policy paperwork. My doctor's office charged me $25 to have a doctor's stamp put on it (not even his real signature since he is on vacation) and initially told me it would take up to 10 days to get it back. Ridiculous. Of course I am anxious to make sure that I get a paycheck sometime soon and had just let myself get too tired and crabby. Your daddy was very thankful that our sweet friend Kara let Cameron hang out at their house for the evening so we could be with you at the hospital and she helped me cry and vent for a little while when we were all back home.
Today, I am resting at home while Daddy took Joe Dog to the vet. He has had a suspicious limp and needed a checkup this month anyway. Your big sister got to have a slumber party with our wonderful friends, the Gilbreaths, and we are greatly looking forward to Grammy coming back to stay with us tonight for a few more days. I am anxious to head up the hospital again to see you soon. We miss you so much and are thankful for every sleepy smile, every tiny finger and toe, and every snuggle we get to share with you.
Love,
Mama
We have had an emotional past few days and are starting to feel the wear of being pulled in many different directions. Your daddy has been home with me since this is his last week of time off before football starts on Monday, and I am thankful that he has faithfully taken care of shuttling Cameron and I all the places we need to go, while still keeping the house clean and watching over our finances. We have certainly eaten a lot of meals on the go lately, but we have lots of casseroles waiting in the freezer from your sweet Aunt Rachael.
Just a few days ago, we were so excited about your progress. Your color certainly looks so much better, and you seemed to be more alert and awake for feedings. You got to meet Mrs. Kim from Mommy's office, and she loved holding you so much that she probably would have stayed all day if we would have let her! Maybe you have a thing for dark hair because you just watched her so intently, like you were taking in our whole conversation. She gushed over how sweet and handsome you are, and I was in complete agreement. :)
Most of your test results have been positive, with your direct bilirubin count down to about an 8, which is half of what it was a week ago. Your doctors keep telling us that your liver is working hard to get it out of your system and that you just need more time. But we were quietly getting excited about the possibility of you coming home soon, even though no doctor had even brought it up. Daddy was determined to have your whole side of the house clean and ready for you, and we even bought an extra cushion to put in your carseat that will fit more snugly around you since you are still so small. Your new crib sheets even arrived yesterday, so your room is all ready for you. Here are a few pics of all your cute things:
 |
| Your special blanket made by Grammy with your cute monogram |
 |
| We just love seeing your name and thinking of you! |
 |
| Lots of books and toys for when you are bigger and ready to play! |
 |
| Your cute whale was painted by my cousin Brittney, and you will hopeful like to swing like Cameron did. |
 |
| Your fun mobile will hopefully distract you during diaper changes, little wiggle worm. |
Unfortunately, we got a call yesterday (Thursday) from a new doctor that will be assigned to you for the next week or so. He saw you for the first time on Wednesday and called to give us an update on where he thought the next few days were headed. Since he was the first doctor to ever call me, we were a little worried and were only about 5 minutes away from the hospital, so we waited to discuss things in person. He told us that he was starting a whole new round of tests for your liver, your blood counts and that you would be getting another blood transfusion that day. Though you had been progressing in a good way, he wanted to rule out as many things as possible that might be causing your body to still be fighting off bilirubin and destroying red blood cells. They even want to do an MRI of your brain to make sure that the bilirubin didn't cross over the blood-brain barrier (which is a very longshot and the test was ordered in your first days in the NICU and just hasn't been done yet). It was just a big blow when we were secretly hoping to hear good news.
I can tell that your daddy was just devastated, and I just kept trying to tell myself that you were born at just the right time, so we should trust that God has all your days planned in accordance with his purposes. I broke down on on Wednesday night after an exhausting day of running around and worrying over my work maternity policy paperwork. My doctor's office charged me $25 to have a doctor's stamp put on it (not even his real signature since he is on vacation) and initially told me it would take up to 10 days to get it back. Ridiculous. Of course I am anxious to make sure that I get a paycheck sometime soon and had just let myself get too tired and crabby. Your daddy was very thankful that our sweet friend Kara let Cameron hang out at their house for the evening so we could be with you at the hospital and she helped me cry and vent for a little while when we were all back home.
Today, I am resting at home while Daddy took Joe Dog to the vet. He has had a suspicious limp and needed a checkup this month anyway. Your big sister got to have a slumber party with our wonderful friends, the Gilbreaths, and we are greatly looking forward to Grammy coming back to stay with us tonight for a few more days. I am anxious to head up the hospital again to see you soon. We miss you so much and are thankful for every sleepy smile, every tiny finger and toe, and every snuggle we get to share with you.
Love,
Mama
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