WE'RE HOME!!!!!
Saturday, May 31, 2008
Friday, May 30, 2008
They say we go home tomorrow!
Dr Siedl came in this afternoon and said that are letting us out tomorrow! Now as I said, I'm not holding my breath; but they did give us all our dismissal papers and prescriptions and put us in the "transition room". The transition room is a room that you can stay in the night before you go home to make sure you don't need anything or have any problems. It's just down the hall from Matthew's room and Matthew, Steve and I are all in here. It's a super nice way to "test the waters". So hopefully tomorrow we can post- We're home!, but we'll see!
Thursday, May 29, 2008
Our terrible, horrible, no good, very bad day
We're on the roller coaster again. I thought we had jumped off it, but guess not. Now let me start by saying Saturday, Sunday, Monday and Tuesday night I didn't get more than 4 hours of sleep per night. Monday and Tuesday I had stayed at the hospital all night in a recliner. So sleep deprivation plays a huge part of my bad day. I was not prepared to handle anything bad. The nurses and doctor had told us that if he could eat good for a couple of days, we could go home. So, I made it my personal mission to get him eating; even if it meant sacrificing huge amounts of sleep. Well Wednesday when the neonatologist came in, he was talking about sending us home on Friday. While he was assessing him, he saw some jerking movements that Matthew was doing. He has been doing these since he was born and I've had multiple people look at him including the nurse practitioner. When he does these movements, we can put our hand on his arm or leg or whatever's moving and he'll stop doing it, which everyone has said that they weren't worried and it was probably just an exaggerated reflex. Well when the neonatologist saw this he wasn't super concerned but wanted to get and EEG (this test looks at brain activity) just to make sure that they weren't seizures. The EEG was done and I didn't think much more of it. I was more excited to get to go home.
Around 5:30 Dr. Minderman came in. Dr. Minderman(Dave) is one of the neonatologists and just happens to also be married to my cousin. So he's family. They've been on vacation and just got back today. I figured he was stopping in to say hi. But he sat down and began to tell us the results of our EEG. It showed that he was having abnormal brain activity, most likely seizures. I felt as if the floor had just dropped out from underneath me. Seizures, what does that mean for him. I couldn't even think straight. Dave was so good with us and I felt so bad for him. We had talked early on that he wouldn't get to involved with Matthew and let his partners take care of him unless he happened to be on call. Now I see why. How hard is that to have to give news like that to family.
So last night they started him on phenobarbital; a medicine to help with this "abnormal brain activity." I called Steve and he came from Lincoln right away. That made it a lot easier to have him here. He immediately took me out of the NICU and we went and got something to eat. We were able to sit and talk and visit. Steve also has a great sense of humor. He had me laughing by the end of the evening. Exactly what I needed; especially since I tend to be a very serious person. Now don't get me wrong, he is equally as worried as I am, but he balances me out so well. I guess God knew what he was doing when he put us together.
We also decided it was best for my emotional health to stay at the Rainbow house and get some much needed sleep.
Fast forward to this morning. I feel so much better. The neurologist came and visited with us, reassured us and gave us more information. She isn't so sure these jerking movements are "seizures", but does know that he is having abnormal brain activity even when he isn't having these jerking movement. The medicine should help this and we'll follow up with our pediatrician as he'll have to have levels checked frequently. We'll also follow up with the neurologist in 3 months to see what she thinks. The neonatologist thinks that this won't delay our dismissal more than a couple of days, but I'm not going to even think about it until they put him in his car seat and tell us we can go home. I got my hopes dashed and I don't want to have that happen again.
Of some note: you may wonder about his results of the VCUG from yesterday. It does show his kidneys have some reflux but it's not too bad. He'll need to be on a low dose of antibiotic for 1 year and we'll recheck his kidneys after 1 year. The kidney doctor says he has a "greater than 50 % chance of out growing it" by the time he's 8 years old. With everything else that happened yesterday, I'm not even mildly concerned.
Now one final thing. I think I could've handled this much better had I had even some quality sleep; but I was a wreck!! I've decided to give myself permission to go to the Rainbow house each night and let the nurses bottle him while I'm gone. I'm not going to try and kill myself over feeding him and then not be able to cope if another bad piece of news comes my way. And let me tell you, just when it seems that they can't find anything more, they do-so I'm not even banking on this being the last time we jump on the roller coaster.
Around 5:30 Dr. Minderman came in. Dr. Minderman(Dave) is one of the neonatologists and just happens to also be married to my cousin. So he's family. They've been on vacation and just got back today. I figured he was stopping in to say hi. But he sat down and began to tell us the results of our EEG. It showed that he was having abnormal brain activity, most likely seizures. I felt as if the floor had just dropped out from underneath me. Seizures, what does that mean for him. I couldn't even think straight. Dave was so good with us and I felt so bad for him. We had talked early on that he wouldn't get to involved with Matthew and let his partners take care of him unless he happened to be on call. Now I see why. How hard is that to have to give news like that to family.
So last night they started him on phenobarbital; a medicine to help with this "abnormal brain activity." I called Steve and he came from Lincoln right away. That made it a lot easier to have him here. He immediately took me out of the NICU and we went and got something to eat. We were able to sit and talk and visit. Steve also has a great sense of humor. He had me laughing by the end of the evening. Exactly what I needed; especially since I tend to be a very serious person. Now don't get me wrong, he is equally as worried as I am, but he balances me out so well. I guess God knew what he was doing when he put us together.
We also decided it was best for my emotional health to stay at the Rainbow house and get some much needed sleep.
Fast forward to this morning. I feel so much better. The neurologist came and visited with us, reassured us and gave us more information. She isn't so sure these jerking movements are "seizures", but does know that he is having abnormal brain activity even when he isn't having these jerking movement. The medicine should help this and we'll follow up with our pediatrician as he'll have to have levels checked frequently. We'll also follow up with the neurologist in 3 months to see what she thinks. The neonatologist thinks that this won't delay our dismissal more than a couple of days, but I'm not going to even think about it until they put him in his car seat and tell us we can go home. I got my hopes dashed and I don't want to have that happen again.
Of some note: you may wonder about his results of the VCUG from yesterday. It does show his kidneys have some reflux but it's not too bad. He'll need to be on a low dose of antibiotic for 1 year and we'll recheck his kidneys after 1 year. The kidney doctor says he has a "greater than 50 % chance of out growing it" by the time he's 8 years old. With everything else that happened yesterday, I'm not even mildly concerned.
Now one final thing. I think I could've handled this much better had I had even some quality sleep; but I was a wreck!! I've decided to give myself permission to go to the Rainbow house each night and let the nurses bottle him while I'm gone. I'm not going to try and kill myself over feeding him and then not be able to cope if another bad piece of news comes my way. And let me tell you, just when it seems that they can't find anything more, they do-so I'm not even banking on this being the last time we jump on the roller coaster.
Wednesday, May 28, 2008
Pictures
I guess I didn't have as many pictures as I thought I did. Heres just a few from the last couple days
My brother Curtis with Megan and Mason over the weekend
Big brother Micah holding Matthew for the first time on sunday
We're finally tube free on Tuesday!!
My brother Curtis with Megan and Mason over the weekend
Big brother Micah holding Matthew for the first time on sunday
We're finally tube free on Tuesday!!
We're very ready to come home!!! Update more soon
Tuesday, May 27, 2008
Today's visits
Today has been the day of doctor visits. I'm going to just give a quick update on today's happenings as Mr. Matthew is taking more of mommy's time as he's eating SO well. We are very encouraged. Here is a quick run down of todays happenings;
- Genetics councelor came today to get a family history on Steve and I
- Matthew had his CT scan done
- Dr Siedel (neonatologist) rouned, nothing new except they are letting me just breastfeed him and if he doesn't feed for 5 hours, then visit with nurse practitioner about how much to feed in his NG
- Orthopedic doctor rounded; stated that he isn't worried about any of the skeletal abnormalities, and that we shouldn't be either. Told us what a special baby we have!
- Dr Puccioni (he put Matthew's shunt in) came through and said CT scan looks good. The neonatologist had origially said that he was worried about a spot in his brain that looked like it wasn't developed, but Dr. Puccioni said that this wasn't even an important structure for kids who have hydrocephalus, that "it's not even needed". He said "nothing to worry about".
- I accidently pulled Matthew's NG tube (the tube in his nose) out today when I picked him up. At this point we're going to leave it out as we haven't had to use it since 4 am. We're officially tube free!
Tomorrow he'll have his VCUG; which was previously mentioned in the last post. We'll continue to work on feeding and hope they'll let us go soon! I have some pictures to post, but Matthew thinks he needs to eat now, so I'll try and get them on the blog tomorrow.
Monday, May 26, 2008
Another good day
Today has been another productive day for Matthew. My mom and the kids came up to see the baby this morning as they were taking off for South Dakota. My mom has to go back to work, but the kids are going to stay with my parents in the evening and my aunt Delores is going to watch them for us during the day. She is a teacher and has the summer off. Steve had headed back home last evening with my mom so he could have the suburban and be able to leave me a car, so he came up at the same time too to see us.
The kids were able to see Matthew for a little bit and then Steve took them over to the Rainbow house to play on the playground and then he took them out-to-eat for lunch. That freed mom and I up to visit and for mom to get some snuggle time in with Matthew before she left. Dr Siedl (the neonatologist) was in and visited with us about what he thought the next week would hold. He scheduled a CAT scan for tomorrow (I can't remember the significance, but know that Dr Puccioni-the doctor who placed his shunt-wanted this test done) and then he also scheduled a test on Wednesday that the urologist wanted. This test is called a VCUG (for those who want to know what that stands for- its voiding cystourethrogram). This test will show if he has any problems with "reflux" in his kidneys. Since his kidneys are fused and both on one side, they want to make sure that they are both working properly. Both these tests will not take very long and the worst part of the VCUG is that they will temporarily place a catheter in him while they do the test.
Next Dr. Siedl talked about his feedings. At that point, he was only breastfeeding for 3-5 minutes typically. That isn't enough to get the nutrition he needs, so that is why he was also getting feedings in the NG tube. He said we would be patient and try to get him to eat more, but if we were unable to after another week, we had a couple options. He could send him home with the tube in his nose, but there were some risks to that. Or, we could put in what is called a G-tube. This is a tube that is placed straight into the belly by and incision and then he would get his feeding through that. Now, I don't want to have a G tube unless absolutely necessary!!!!! It's another surgical procedure AND another thing to take care of. I visited with the nurse practitioner and she changed his tube feeding schedule to every 4 hours instead of every 3 hours to give him a chance to get hungry. She still wanted him to get the same amount of milk in 24 hours so she upped the amount he got per feeding.
THEN Matthew and I had a talk. I told him he heard what the doctor said and that it wouldn't be very fun to have a G-tube, so we needed to work on this eating business. Well at 1:30, he woke up right before daddy was going to leave and acted hungry. So I tried to breastfeed him. He ate for a couple minutes and then went to sleep. I told him that that wouldn't cut it. I woke him up again and tried again. This time he stayed on for 13 minutes, yeah!!!! I even made the nurse come in and see. He fell asleep till 4pm and woke up hungry. This time he nursed 14 minutes! Yeah Matthew! The nurses consider a "full feeding" when they breastfeed at least 10 minutes, so he had gotten 2 full feedings! It was time for his tube feeding, so I asked the nurse if we still had to give him his tube feeding since he had just eaten so well. She didn't know, so she called the nurse practitioner and she said that as long as he feeds for at least 10 minutes, he doesn't need his tube feedings. Yeah again!!! At 7 pm he woke up and ate very heartily for 15 minutes, so I do believe we're making some good strides! Now, he just has to keep this up for a couple of days and we can GO HOME!!! I'm not holding my breath though yet, as we've just begun; but this is wonderful progress!
The kids were able to see Matthew for a little bit and then Steve took them over to the Rainbow house to play on the playground and then he took them out-to-eat for lunch. That freed mom and I up to visit and for mom to get some snuggle time in with Matthew before she left. Dr Siedl (the neonatologist) was in and visited with us about what he thought the next week would hold. He scheduled a CAT scan for tomorrow (I can't remember the significance, but know that Dr Puccioni-the doctor who placed his shunt-wanted this test done) and then he also scheduled a test on Wednesday that the urologist wanted. This test is called a VCUG (for those who want to know what that stands for- its voiding cystourethrogram). This test will show if he has any problems with "reflux" in his kidneys. Since his kidneys are fused and both on one side, they want to make sure that they are both working properly. Both these tests will not take very long and the worst part of the VCUG is that they will temporarily place a catheter in him while they do the test.
Next Dr. Siedl talked about his feedings. At that point, he was only breastfeeding for 3-5 minutes typically. That isn't enough to get the nutrition he needs, so that is why he was also getting feedings in the NG tube. He said we would be patient and try to get him to eat more, but if we were unable to after another week, we had a couple options. He could send him home with the tube in his nose, but there were some risks to that. Or, we could put in what is called a G-tube. This is a tube that is placed straight into the belly by and incision and then he would get his feeding through that. Now, I don't want to have a G tube unless absolutely necessary!!!!! It's another surgical procedure AND another thing to take care of. I visited with the nurse practitioner and she changed his tube feeding schedule to every 4 hours instead of every 3 hours to give him a chance to get hungry. She still wanted him to get the same amount of milk in 24 hours so she upped the amount he got per feeding.
THEN Matthew and I had a talk. I told him he heard what the doctor said and that it wouldn't be very fun to have a G-tube, so we needed to work on this eating business. Well at 1:30, he woke up right before daddy was going to leave and acted hungry. So I tried to breastfeed him. He ate for a couple minutes and then went to sleep. I told him that that wouldn't cut it. I woke him up again and tried again. This time he stayed on for 13 minutes, yeah!!!! I even made the nurse come in and see. He fell asleep till 4pm and woke up hungry. This time he nursed 14 minutes! Yeah Matthew! The nurses consider a "full feeding" when they breastfeed at least 10 minutes, so he had gotten 2 full feedings! It was time for his tube feeding, so I asked the nurse if we still had to give him his tube feeding since he had just eaten so well. She didn't know, so she called the nurse practitioner and she said that as long as he feeds for at least 10 minutes, he doesn't need his tube feedings. Yeah again!!! At 7 pm he woke up and ate very heartily for 15 minutes, so I do believe we're making some good strides! Now, he just has to keep this up for a couple of days and we can GO HOME!!! I'm not holding my breath though yet, as we've just begun; but this is wonderful progress!
Sunday, May 25, 2008
Weekend updates
What a busy weekend! There is a lot to update on. Yesterday, after 2 days of attempting to breastfeed with little success, they decided to put the NG tube down so that they could feed Matthew milk and wean him off his IV nutrition. He still really hadn't ever opened his eyes much or really acted that alert. That made me a little concerned. He tolerated his feedings very well. My parents, my brother Curtis, and Megan and Mason also came up to visit. Micah is in Kearney with a good friend of his until today, so he hasn't gotten to see the baby yet. It was nice to see everybody.
Yesterday, I was also dismissed from the hospital. Steve and I will be staying at the Rainbow house, which is a wonderful place for out-of-town families to stay when their children are hospitalized. We went and checked in and then had supper there. All of us then went back to the hospital to see Matthew again. My mom noticed that the thumb on the hand his IV is in was very swollen. We had the nurses look at it, but no one could decide if the IV was actually blown or if he had worked on the tape so much that it was making his thumb swollen. They made the decision to restart his IV. More pokes, yuck! So after they had tried numberous times, they weren't able to get another one in. The nurse practitioner even tried in his head. So they called the neonatologist and he said he would come in and see what he could do. He came in later and said that since he was tolerating his feeds so well from his NG tube that he could leave his IV out, and that they would just continue to bump up his feedings in his NG. Halleluia!! Steve and I were both sick of that IV! We were both so happy!
We both left around midnight for the Rainbow house. We had to stop on the way at Walgreens and pick up my pain medication.
I woke up around 5am pretty uncomfortable. I hadn't slept flat since I'd had the c-section; my bed was always just reclined. So I had Steve just bring me up to the hospital and he went back to bed. I was able to sleep so much better in the recliner at his bedside.
Matthew woke up around 7:45 to eat. He breastfed about 5-10 minutes which was good for him. Then the nurse hooked up his NG tube feeding and while we did that he woke up for about 15 minutes and looked around. He has NEVER done that either! He was so alert. His nurse even said he was a different baby today. I think it's because he doesn't have his IV feedings anymore. So we have made great steps this weekend! We 're hoping this only leads to getting home soon!! We're ready!
Here's some cute pics
Eyes wide open this morning while he was getting his feeding. Isn't he sweet? 
Yesterday, I was also dismissed from the hospital. Steve and I will be staying at the Rainbow house, which is a wonderful place for out-of-town families to stay when their children are hospitalized. We went and checked in and then had supper there. All of us then went back to the hospital to see Matthew again. My mom noticed that the thumb on the hand his IV is in was very swollen. We had the nurses look at it, but no one could decide if the IV was actually blown or if he had worked on the tape so much that it was making his thumb swollen. They made the decision to restart his IV. More pokes, yuck! So after they had tried numberous times, they weren't able to get another one in. The nurse practitioner even tried in his head. So they called the neonatologist and he said he would come in and see what he could do. He came in later and said that since he was tolerating his feeds so well from his NG tube that he could leave his IV out, and that they would just continue to bump up his feedings in his NG. Halleluia!! Steve and I were both sick of that IV! We were both so happy!
We both left around midnight for the Rainbow house. We had to stop on the way at Walgreens and pick up my pain medication.
I woke up around 5am pretty uncomfortable. I hadn't slept flat since I'd had the c-section; my bed was always just reclined. So I had Steve just bring me up to the hospital and he went back to bed. I was able to sleep so much better in the recliner at his bedside.
Matthew woke up around 7:45 to eat. He breastfed about 5-10 minutes which was good for him. Then the nurse hooked up his NG tube feeding and while we did that he woke up for about 15 minutes and looked around. He has NEVER done that either! He was so alert. His nurse even said he was a different baby today. I think it's because he doesn't have his IV feedings anymore. So we have made great steps this weekend! We 're hoping this only leads to getting home soon!! We're ready!
Here's some cute pics
Self portrait
Eyes wide open this morning while he was getting his feeding. Isn't he sweet?
Steve insisted that he take pictures of everyone kissing Matthew!
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