As I mentioned before in a previous post, Dr. Nesslein was going to have to leave us and go to another hospital. Well that day has finally come. Monday was her last day with us so we tried to get her something so she would remember how special she was to us. I had the black and white photo of Miranda and Brayden blown up, inscribed and framed. When we gave it to her Sunday night she looked like she was on the verge of tears. It means alot to us to know that Brayden had such an impact on her. Dr. Nesslein told us that earlier that day she had gone into Pod 8 just to hold him for a little while. Awhile back I spoke with Dr. Nesslein about the possibility of wheeling Brayden over to the main door and letting Payton look at him through the windows. They have changed the visitation policy so that people can now come and visit, however siblings under the age of 13 are still not allowed. Dr. Nesslein had spoken to several people to find out if it was ok and when she got the okay, we had already left for the day so we didn't find out until just a couple of days ago. She asked what Payton thought about seeing Brayden and we were lost, then she told us it was ok to bring him up there so we did on Monday.
Monday we took turns visiting because we had Payton with us. Firs thing we did was get Brayden ready and over to the window for Payton to see. He was so excited he just kept saying he was so cute and he was so adorable. He stared at him through the window for about 2 minutes. When we went to sit back down in the waiting room, I swear he was tearing up a little. He wants to play with him so bad.
Miranda got to talk to Dr. Nesslein for a little bit about what she thought about Brayden and how soon he might be coming home. She told Miranda that it would not surprise her to see him home this weekend. Can you believe it?? Miranda told me about a conversation that Dr. Nesslein had with Dr. Worsley (Payton's Pediatrician) and I just had to share it with everyone. First a little history on Dr. Worsley. He has been Payton's doctor ever since he left the NICU and has seen many of the struggles we have gone through and continue to go through with Payton. That being said, here is my understanding of how the conversation went. I may be a little off on the exact words that were said, but this is what I believe was said.
Dr. N "Hi Dr. Worsley, this is Dr. Nesslein calling. Do you know a patient by the name of Payton Leija?"
Dr. W "Yes I do why?"
Dr. N "Well he has a little brother now."
Dr. W "OH NO!!, you are calling me from the NICU aren't you?"
Dr. N "Yes I am."
Dr. W "Oh crap...how early was he?"
Dr. N "30 weeks"
Dr. W "Good!!! 30 is a lot better than 23"
Dr. N "True but he has had 3 pneumos and 5 chest tubes. So he has had his ups and downs..."
and that is when Dr. Nesslein filled him in on all of Brayden's history. I'm sorry I just thought that this was funny. Maybe you have to be Miranda and I to get it, but it was funny.
Dr. Maio has been placed as Brayden's primary now that Dr. Nesslein has left us. When I spoke to Dr. Maio yesterday afternoon, he told me that he was very please with Bryaden's progress and thought that Bryaden would be able to come home Thursday. I said whoa, whoa, WHOA, do what? We are not ready his room is not complete, we don't have a mattress for him to sleep on. He kind of laughed at me and asked me how long would it take to get finished. I told him we should be done by Thursday and that we could room in on Friday, and bring him home Saturday. He told me we would talk Wed. morning and assess the situation then.
I want him to come home so much, but this all kind of snuck up on us. We don't have the important things we need for him yet. Keep an eye out for more information on Bryaden's homecoming and pictures of his final days in the NICU.
Wednesday, December 30, 2009
Saturday, December 26, 2009
Merry Christmas
Merry Christmas to all!!! Brayden is doing so well these days. He is now up to 4 lbs 9 oz and eating almost all of feeds by bottle and breast feeding. The nurse told us today that if he continues to take all of his feeds by breast and bottle they will be able to pull his NG tube out of nose. It seems like a small thing but it is a huge step towards getting to come home. Currently he is still requiring a little bit of oxygen support but we are hoping that in the next few days he will be able to come of of it completely. Once he is off his oxygen, it will be just a matter of a few days till he can come home.
Enjoy the pics of our boys enjoying Christmas.
Tuesday, December 22, 2009
New Pictures
A picture can say it all
feeding time
You are on my List!!!!
Brayden's new home. The big boy bed.
Moving On Up
Well we have finally finished moving into the new house, man what a hassle. Trying to work, visit Brayden, spend time with Payton and move is killing us. Here lately we haven't been getting to bed till 2 a.m. and then getting up at 8. I guess this is getting us ready for when Brayden comes home.
Speaking of which, he is doing so well. A few day ago they began feeding him with a bottle as well as letting Miranda continue to breastfeed. In the beginning he only took a little bit from the bottle but he just took off and started eating all of his feed from the bottle. Yesterday I tried to feed him, it didn't go so well, but today was much better. We have started tag teaming him when it comes to feeding time. Miranda tried to breast feed first, then I get him and finish it off with a bottle. He has kind of slowed down and isn't taking all of his feed from the bottle but the nurses and doctor assure us this is normal. In the beginning he was only getting two or three feeds from the bottle and the rest were through his NG tube. Now he is getting all of his feeds from the bottle, so basically we are asking him to eat alot and expend al0t of energy for such a little baby.
The doctor was gone for a few days and when she came back she told us that she was absolutely beaming with pride. She said he wasn't even hers and yet she was just so proud of him. She said that he was exceeding her expectations with his feeds. He is still on oxygen but has been taken off the high flow cannula and put on a low flow cannula. This is the same thing Payton was on until he was 2 but she expects him to ween off of it within a week or so. She still expects him to be coming home in a couple of weeks.
Now the sad news. Dr. Nesslein is leaving us to go to Cook Children's. A month ago when Brayden was at his worst, she came to us and told us that they were making her move hospitals and that she would have to put Brayden under another doctor. We pleaded with her and she was able to make arrangements to stay with us for another month. With Brayden on the upswing now she is being asked to move. While we will miss her calling and bragging on him we understand she is needed elsewhere. She told us that she put us under Dr. Maio who is also a great doctor and someone we feel very comfortable with. She told us that she didn't want to put him under the doctor that was taking her place because Dr. Nesslein thought she was one of the doctors we had problems with when Payton was in the NICU. I asked the doctors name and when she told us, Miranda's exact comment was," she is not coming near my child!!!". Dr. Nesslein heard her through the phone and kind of chuckled.
Currently Brayden is weighing in about 4lb 5oz and getting stronger. He definitely has his own personality. He will let you know when something displeases him. Sorry this was so long but it had been a while since I updated the site so I had alot to tell. In closing, I would once again like to ask for prayers for the little baby in POD 3 who is fighting the hard fight. We don't know anything about the baby other than he/she is on some of the most critical machines. I would like to thank all of you for your thoughts and prayers and hope you can share some of those with the other families in the NICU. The NICU is not a place you ever want to be. Life inside the NICU can be both beautiful and heart wrenching at the same time. My hope is that one day there won't be a need for the NICU.
Speaking of which, he is doing so well. A few day ago they began feeding him with a bottle as well as letting Miranda continue to breastfeed. In the beginning he only took a little bit from the bottle but he just took off and started eating all of his feed from the bottle. Yesterday I tried to feed him, it didn't go so well, but today was much better. We have started tag teaming him when it comes to feeding time. Miranda tried to breast feed first, then I get him and finish it off with a bottle. He has kind of slowed down and isn't taking all of his feed from the bottle but the nurses and doctor assure us this is normal. In the beginning he was only getting two or three feeds from the bottle and the rest were through his NG tube. Now he is getting all of his feeds from the bottle, so basically we are asking him to eat alot and expend al0t of energy for such a little baby.
The doctor was gone for a few days and when she came back she told us that she was absolutely beaming with pride. She said he wasn't even hers and yet she was just so proud of him. She said that he was exceeding her expectations with his feeds. He is still on oxygen but has been taken off the high flow cannula and put on a low flow cannula. This is the same thing Payton was on until he was 2 but she expects him to ween off of it within a week or so. She still expects him to be coming home in a couple of weeks.
Now the sad news. Dr. Nesslein is leaving us to go to Cook Children's. A month ago when Brayden was at his worst, she came to us and told us that they were making her move hospitals and that she would have to put Brayden under another doctor. We pleaded with her and she was able to make arrangements to stay with us for another month. With Brayden on the upswing now she is being asked to move. While we will miss her calling and bragging on him we understand she is needed elsewhere. She told us that she put us under Dr. Maio who is also a great doctor and someone we feel very comfortable with. She told us that she didn't want to put him under the doctor that was taking her place because Dr. Nesslein thought she was one of the doctors we had problems with when Payton was in the NICU. I asked the doctors name and when she told us, Miranda's exact comment was," she is not coming near my child!!!". Dr. Nesslein heard her through the phone and kind of chuckled.
Currently Brayden is weighing in about 4lb 5oz and getting stronger. He definitely has his own personality. He will let you know when something displeases him. Sorry this was so long but it had been a while since I updated the site so I had alot to tell. In closing, I would once again like to ask for prayers for the little baby in POD 3 who is fighting the hard fight. We don't know anything about the baby other than he/she is on some of the most critical machines. I would like to thank all of you for your thoughts and prayers and hope you can share some of those with the other families in the NICU. The NICU is not a place you ever want to be. Life inside the NICU can be both beautiful and heart wrenching at the same time. My hope is that one day there won't be a need for the NICU.
Thursday, December 17, 2009
Payton's Surgery
Today Payton had surgery at Cook Children's. For those who didn't know, he had to have surgery to remove a potentially cancerous spot on his leg and in his lower abdomen. The surgery was supposed to be done November 20th, but with Brayden being born early and Miranda still in the hospital at the time, we had to move it. Payton has had many surgeries as you know but as he gets older, he is getting more aware of what is going on. Before he would walk in and do what the nurses said and not ask questions. Today he walked in and when they told me to wait in another room while Miranda went with him so they could get his vitals, he began to cry. The nurse asked which one of us was going to into the room with him and I said I would wait for them in the prep room. Miranda told me when they went in he began crying and told the nurse he said both of us. She said he kept saying both of us.
After thee met up with me in the prep room he would look at us and begin to cry, just a few tears would streak down his face, tears of fear. He kept saying he didn't want us to leave him. When it was time for him to go into the preop room they told us again that only one of us could stay with him. So I kissed him on the forehead and told him I loved him. After about 15 minutes, Miranda came out and we began to wait. When you sit in the waiting room while your child is going under, time seems to creep by. The surgery was only supposed to take an hour. At the 1.5 hour mark we began to get worried. Then the doctor came out and said everything went well, the spot in his abdomen took a little digging to get too. After Payton got out of recovery, Miranda dropped me off at the NICU so I could spend some time with Brayden. I waited till shift change to leave and come home and that's when Miranda told me about Payton.
While driving home in Ft. Worth traffic Payton was sleeping in the back seat, Miranda would talk to him every few minutes to make sure he was doing ok. Then while sitting in traffic he didn't respond. She yelled his name and he still didn't answer. She turned around to look at him and his face was pale and his lips were blue, he had quit breathing. She reached back and grabbed his hand and shook it, raised it up and it fell limp on the seat of the car. She began to panic and scream his name hysterically. She grabbed his arm and began shaking it vigorously all the while yelling his name at the top of her lungs. After what I'm sure felt like minutes he opened his eyes and said," what mommy" like nothing had happened. After that she began talking to him every minute or two trying not to let him go to sleep again. She told me that after her heart quit racing he began sobbing and shaking. You think that after your kids get older they are safer, but you can never let your guard down, anything can happen in an instant. As I sit here writing this I can't help but tear up as thought of what might have happened if Miranda had not been paying attention and keeping an eye on him. Sometimes I pick on her about being over protective but the truth is I don't know what I would do without her. She is an excellent mother and a wonderful wife. She has saved that little boys life more than once.
She is amazing!!
After I got home, she jumped back in the car and is now back at the NICU with Brayden while I keep watch over our first little miracle. Who by the is supposed to be resting and taking it easy because of the hole in his leg and the stitches in his stomach, just managed to climb down off his bunk bed without telling me he was getting down. A parent's worry never ends.
Payton after his surgery. Right before this video he told me his surgery made him feel like an old man. I ran and grabed the camera to try and catch this. He was trying to climb in his bed earlier and I tried to help him but he told me NO, he was a big boy and he didn't need help.
After thee met up with me in the prep room he would look at us and begin to cry, just a few tears would streak down his face, tears of fear. He kept saying he didn't want us to leave him. When it was time for him to go into the preop room they told us again that only one of us could stay with him. So I kissed him on the forehead and told him I loved him. After about 15 minutes, Miranda came out and we began to wait. When you sit in the waiting room while your child is going under, time seems to creep by. The surgery was only supposed to take an hour. At the 1.5 hour mark we began to get worried. Then the doctor came out and said everything went well, the spot in his abdomen took a little digging to get too. After Payton got out of recovery, Miranda dropped me off at the NICU so I could spend some time with Brayden. I waited till shift change to leave and come home and that's when Miranda told me about Payton.
While driving home in Ft. Worth traffic Payton was sleeping in the back seat, Miranda would talk to him every few minutes to make sure he was doing ok. Then while sitting in traffic he didn't respond. She yelled his name and he still didn't answer. She turned around to look at him and his face was pale and his lips were blue, he had quit breathing. She reached back and grabbed his hand and shook it, raised it up and it fell limp on the seat of the car. She began to panic and scream his name hysterically. She grabbed his arm and began shaking it vigorously all the while yelling his name at the top of her lungs. After what I'm sure felt like minutes he opened his eyes and said," what mommy" like nothing had happened. After that she began talking to him every minute or two trying not to let him go to sleep again. She told me that after her heart quit racing he began sobbing and shaking. You think that after your kids get older they are safer, but you can never let your guard down, anything can happen in an instant. As I sit here writing this I can't help but tear up as thought of what might have happened if Miranda had not been paying attention and keeping an eye on him. Sometimes I pick on her about being over protective but the truth is I don't know what I would do without her. She is an excellent mother and a wonderful wife. She has saved that little boys life more than once.
She is amazing!!
After I got home, she jumped back in the car and is now back at the NICU with Brayden while I keep watch over our first little miracle. Who by the is supposed to be resting and taking it easy because of the hole in his leg and the stitches in his stomach, just managed to climb down off his bunk bed without telling me he was getting down. A parent's worry never ends.
Payton after his surgery. Right before this video he told me his surgery made him feel like an old man. I ran and grabed the camera to try and catch this. He was trying to climb in his bed earlier and I tried to help him but he told me NO, he was a big boy and he didn't need help.
One Month Birthday!!!
I know this is a little late, but yesterday Brayden turned one month old. Yeah!!!!!!!!!!!! And on top of hitting the one month mark, he also hit the 4lb mark and got moved from the POD 1 down to POD 8. This is a huge step towards getting to come home. He is no longer considered critical.
Yesterday was a crazy day with me having to go to work and us trying to visit Brayden. Miranda went down to the NICU early to speak with Dr. Nesslein about Brayden's progress. Dr. Nesslein wound up sitting and talking with Miranda for about 3 hours. They discussed everything from Brayden, to Payton to husbands. She has really taken a liking to us, Miranda in particular, which is good. That means she really does care about us and Brayden. She is a genuinely nice person, the kind of person you could see being good friends with if it weren't for the NICU.
Brayden is just continuing to do so well and is progressing faster then even the doctor expected. Miranda asked her point blank, "now that we are past all of this, exactly how critical was he?" Dr. Nesslein said that he was very critical, but always seemed to stay on the upper side of critical in each of his trials. She said that even though he was very sick, the thought of him not making never crossed her mind. I would like to say that in my heart I knew that he would be ok, but the mind is very powerful. The first time he crashed All that happened to Payton came back to me and as I lay crying on Miranda's lap my mind told me that he might not make it. I had the doubt that he might be ok, but after the first week I knew he was a fighter and that he would be ok.
Now we are three weeks away from leaving the NICU. Those first few weeks seem like a year ago, and yet they don't. In the NICU time is an irrelevant thing.
Yesterday was a crazy day with me having to go to work and us trying to visit Brayden. Miranda went down to the NICU early to speak with Dr. Nesslein about Brayden's progress. Dr. Nesslein wound up sitting and talking with Miranda for about 3 hours. They discussed everything from Brayden, to Payton to husbands. She has really taken a liking to us, Miranda in particular, which is good. That means she really does care about us and Brayden. She is a genuinely nice person, the kind of person you could see being good friends with if it weren't for the NICU.
Brayden is just continuing to do so well and is progressing faster then even the doctor expected. Miranda asked her point blank, "now that we are past all of this, exactly how critical was he?" Dr. Nesslein said that he was very critical, but always seemed to stay on the upper side of critical in each of his trials. She said that even though he was very sick, the thought of him not making never crossed her mind. I would like to say that in my heart I knew that he would be ok, but the mind is very powerful. The first time he crashed All that happened to Payton came back to me and as I lay crying on Miranda's lap my mind told me that he might not make it. I had the doubt that he might be ok, but after the first week I knew he was a fighter and that he would be ok.
Now we are three weeks away from leaving the NICU. Those first few weeks seem like a year ago, and yet they don't. In the NICU time is an irrelevant thing.
Tuesday, December 15, 2009
Out of the Oven
Well today was a busy day, it started off with a Neurologist appointment for Payton and then Miranda and I taking turns visiting Brayden. Neuro said he wants to get an MRI on Payton and send him to a therapist for further in depth testing. Won't know any results for a while.
Miranda went first so Payton and I sat outside and ate and watched movies in the waiting room. Miranda said she got to try and breastfeed him again but since they were feeding him through his tube he didn't really try. I mean why work for your food when it is being pumped into you and all you have to do is lay back and let it fill your tummy. Since he didn't do well she said she was going to go back later and try it again.
When I got to see him, the first thing I noticed was he was out of his incubator, the second thing I noticed was Miranda had dressed him. He has now reached the point where he can wear clothes. We bought him a couple of little outfits to wear for now. I got to spend about two hours just holding him and rocking with him in my arms. It was great to just sit there and stare at his little face without all the tubes in the way. He does still have his little cannula but it is pretty small and his feeding tube is now running down his nose instead of through his mouth.
Miranda talked to Dr. Nesslein while she was in there and the doctor told her that there were no guarantees but she feels that if he keeps doing this good, he will be able to come home in the next 3 weeks. Can you believe it???? We may have our little boy home shortly after New Years. I guess I better get cracking on the baby room!!! More pictures to come.
Miranda went first so Payton and I sat outside and ate and watched movies in the waiting room. Miranda said she got to try and breastfeed him again but since they were feeding him through his tube he didn't really try. I mean why work for your food when it is being pumped into you and all you have to do is lay back and let it fill your tummy. Since he didn't do well she said she was going to go back later and try it again.
When I got to see him, the first thing I noticed was he was out of his incubator, the second thing I noticed was Miranda had dressed him. He has now reached the point where he can wear clothes. We bought him a couple of little outfits to wear for now. I got to spend about two hours just holding him and rocking with him in my arms. It was great to just sit there and stare at his little face without all the tubes in the way. He does still have his little cannula but it is pretty small and his feeding tube is now running down his nose instead of through his mouth.
Miranda talked to Dr. Nesslein while she was in there and the doctor told her that there were no guarantees but she feels that if he keeps doing this good, he will be able to come home in the next 3 weeks. Can you believe it???? We may have our little boy home shortly after New Years. I guess I better get cracking on the baby room!!! More pictures to come.
Feeding Time
Last night Brayden got to try and breastfeed for the first time, and no there are no pictures of that particular event. Yesterday Dr. Nesslein called and told me that because Brayden had been doing so well on his trial off the CPAP that she was going to pull him off of it completely. She said instead he was going to be on a high flow nasal cannula. Basically this is a smaller CPAP but it just uses and oxygen/air mix to give him a little bit of extra pressure. Since he was no longer on the CPAP the doctor said she went to try breastfeeding. It started out pretty good, he latched on and tried nursing but when he did, he apparently got a mouth full of milk and it surprised him. He made the funniest frown when it happened.
He also hit 4lbs last night. He is getting bigger and stronger every day. They said he should be able to go into a big boy bed soon. They are going to try putting him in a bassinet first to see if he can maintain his body temp. Everyday we are getting closer to the door!
He also hit 4lbs last night. He is getting bigger and stronger every day. They said he should be able to go into a big boy bed soon. They are going to try putting him in a bassinet first to see if he can maintain his body temp. Everyday we are getting closer to the door!
Monday, December 14, 2009
Latest News!!!
Sorry for the lack of updates but with moving and work and visiting Brayden I just can't seem to find enough hours in the day. Brayden has continued to grow and is doing really well. They have stopped the antibiotics for the bladder infection and have begun trying to take him off his CPAP for 4 hours twice a day. As of last night he is weighing in at about 3lbs 14 oz. And today marks his one Month Birthday!!!! Officially he is 34 weeks which means he is close to graduating to a big boy bed and being able to wear clothes.
Yesterday Miranda and I went to the NICU early because they told us we could give him his first real bath. It was quite an ordeal. It started off with Miranda getting to hold him for about an hour and then the nurse helped us give him a bath in a small tub. While Miranda was holding him he kept grunting and bearing down like he was working on a "present" however it wasn't delivered until bath time. I won't say any more than that but I hope you get the idea. Here are some pics of Brayden's first bath as well as a couple of funny videos we shot the other day.
Someone wasn't Happy after their bath.
Yesterday Miranda and I went to the NICU early because they told us we could give him his first real bath. It was quite an ordeal. It started off with Miranda getting to hold him for about an hour and then the nurse helped us give him a bath in a small tub. While Miranda was holding him he kept grunting and bearing down like he was working on a "present" however it wasn't delivered until bath time. I won't say any more than that but I hope you get the idea. Here are some pics of Brayden's first bath as well as a couple of funny videos we shot the other day.
Someone wasn't Happy after their bath.
Wednesday, December 9, 2009
A Family in Mourning
If you remember the other day I mentioned the little baby who shared the POD with Brayden was struggling. Sunday when we went to visit Brayden the family was all in there around the Isolette and the curtains were drawn to give them privacy. A couple of times I saw the mom and dad and I wanted to give them some comforting words but you never know what to say or how to say it in a situation like that. When Miranda and I went into the NICU on Monday afternoon the spot where the baby had been, was empty. No one could say what happened but having been in the NICU before we know how things can go very wrong very quickly. I would like to ask those of you who follow this site to please give your thoughts and prayers to the family who have suffered an enormous loss.
Tuesday, December 8, 2009
Birthday Fun
Today was my Birthday and for a gift, I got to sit and hold Brayden for about an hour and half. It was great to just sit there and rock back and forth feeling his little hear beat against my chest. That is until he got mad and yanked on a handful of my chest hairs. Miranda got a good laugh out of it, while I tried hard not to yell out. She laughed...I cried...Brayden just kept pulling.
We spoke with Dr. Hamilton, the doctor who saved his life the first night his lungs collapsed, on the phone on our way into the NICU. She told us that Brayden's blood culture had so far come back negative but his morning urine sample had come back with more white blood cells in it. The number was reduced a little bit from yesterday but still a little on the high side. The doctor said that the antibiotics seem to be working and that Brayden is looking better. Tomorrow his normal doctor, Dr. Nesslein will be back and we will see what her next course of action is, thus far the doctors have just left him on CPAP to try and get a little stronger. Yesterday they tried taking him off for a couple of hours while Miranda held him but he began to desat again. We are both kind of afraid that he is becoming dependent on the extra pressure. Hopefully Dr. Nesslein has a good plan for moving forward and we can get him off the CPAP soon.
Sorry there are no recent pictures, i have bee falling behind on my picture taking. I promise some new pics tomorrow.
We spoke with Dr. Hamilton, the doctor who saved his life the first night his lungs collapsed, on the phone on our way into the NICU. She told us that Brayden's blood culture had so far come back negative but his morning urine sample had come back with more white blood cells in it. The number was reduced a little bit from yesterday but still a little on the high side. The doctor said that the antibiotics seem to be working and that Brayden is looking better. Tomorrow his normal doctor, Dr. Nesslein will be back and we will see what her next course of action is, thus far the doctors have just left him on CPAP to try and get a little stronger. Yesterday they tried taking him off for a couple of hours while Miranda held him but he began to desat again. We are both kind of afraid that he is becoming dependent on the extra pressure. Hopefully Dr. Nesslein has a good plan for moving forward and we can get him off the CPAP soon.
Sorry there are no recent pictures, i have bee falling behind on my picture taking. I promise some new pics tomorrow.
Sunday, December 6, 2009
Another Hurdle
Today Miranda I slept in a little before going to see Brayden in the NICU. When we got there, Linda the receptionist told us that the little baby I mentioned before was not doing well, his name is baby Joos (last name). She told us that we could go back but that they may ask us to leave. When you hear things like that and then see all the curtains drawn in a room it is never a good sign. I can' even begin to explain the mood in the room. On one hand you want to be happy and talk to your baby, but less than 20 feet away a family is saying goodbye to theirs. It is a position Miranda and I were in several times with Payton, but bye the grace of GOD he always pulled through. I hope that the Joos family has the same luck we did.
Last night was a little scary for us because the nurse told us that she could not get him to cool down. When we were there yesterday morning, Brayden was running a pretty high fever. At one point Miranda was taking his temperature and the thermometer started at 99.5 and kept going up. The nurse was standing there and said,"Ok that's enough, we need to cool him down." When we spoke with the nurse that night and she told us that he was still hot, we began to get really worried. She told us that she would change out his Isolette because I felt there was a problem with the heating element or the temp sensor. She also took his little CPAP hat and turned it into a bandanna by cutting the top off so he could release some heat through his head.
Today we got there and like I said there was an eerie tension in the room, but the nurse told us that she wanted us to hold him, so we did. Miranda did the Kangaroo Care, which is skin to skin contact with your baby. He loved it and so did Miranda. She looked down at him and just under the brim of his hat she saw something black so she pulled his hat up and he was just staring up at her. His big eyes just pointed up staring at the source of warmth and love. We sat there and looked at him, a couple of times while we were talking to him he looked at us and smiled. A true little baby smile that showed he was happy where he was. While holding him his CPAP popped out of his nose twice and he began to desat so we had to put him back in his bed. We left to go to the family room so Miranda could pump.
When we came back and stopped at the front desk for some labels the nurse told us that the doctor was coming to talk to us. Miranda said well we can go back there and meet her, again the nurse said no she is coming up here just wait a minute. Miranda was starting to get worried, then she said you don't want us going back there and the nurse said yeah there's something going on back there. The doctor came up and told us that she ordered a chest xray and some blood and urine test run on Brayden. She said that he looked like he was tugging a little bit to hard when he was breathing and that the nurse had said his urine was smelling really bad. The doctor said that she was not overly concerned but she would rather be overly cautious.
As we were driving home she called and said that the chest xray came back beautifully but that his urine sample showed white blood cells in it. She went on to explain that this could be a Urinary tract Infection or something more serious like a Kidney Infection and that she was going to start him on broad spectrum antibiotics and then try and grow the urine culture to see exactly what they are dealing with. From our point of view right now, we are glad to hear his chest xray looks so good but as we get one piece of good news, we have something else to worry about. As we learn more about this new development, I will update the blog.
Last night was a little scary for us because the nurse told us that she could not get him to cool down. When we were there yesterday morning, Brayden was running a pretty high fever. At one point Miranda was taking his temperature and the thermometer started at 99.5 and kept going up. The nurse was standing there and said,"Ok that's enough, we need to cool him down." When we spoke with the nurse that night and she told us that he was still hot, we began to get really worried. She told us that she would change out his Isolette because I felt there was a problem with the heating element or the temp sensor. She also took his little CPAP hat and turned it into a bandanna by cutting the top off so he could release some heat through his head.
Today we got there and like I said there was an eerie tension in the room, but the nurse told us that she wanted us to hold him, so we did. Miranda did the Kangaroo Care, which is skin to skin contact with your baby. He loved it and so did Miranda. She looked down at him and just under the brim of his hat she saw something black so she pulled his hat up and he was just staring up at her. His big eyes just pointed up staring at the source of warmth and love. We sat there and looked at him, a couple of times while we were talking to him he looked at us and smiled. A true little baby smile that showed he was happy where he was. While holding him his CPAP popped out of his nose twice and he began to desat so we had to put him back in his bed. We left to go to the family room so Miranda could pump.
When we came back and stopped at the front desk for some labels the nurse told us that the doctor was coming to talk to us. Miranda said well we can go back there and meet her, again the nurse said no she is coming up here just wait a minute. Miranda was starting to get worried, then she said you don't want us going back there and the nurse said yeah there's something going on back there. The doctor came up and told us that she ordered a chest xray and some blood and urine test run on Brayden. She said that he looked like he was tugging a little bit to hard when he was breathing and that the nurse had said his urine was smelling really bad. The doctor said that she was not overly concerned but she would rather be overly cautious.
As we were driving home she called and said that the chest xray came back beautifully but that his urine sample showed white blood cells in it. She went on to explain that this could be a Urinary tract Infection or something more serious like a Kidney Infection and that she was going to start him on broad spectrum antibiotics and then try and grow the urine culture to see exactly what they are dealing with. From our point of view right now, we are glad to hear his chest xray looks so good but as we get one piece of good news, we have something else to worry about. As we learn more about this new development, I will update the blog.
Saturday, December 5, 2009
My Big Boy's
Brayden is continuing to do well and growing in leaps and bounds. He now weighs 3.4lbs and is doing well on his CPAP. Miranda and I had to take turns visiting him yesterday because Payton wanted to go to the hospital with us. Miranda went first while I sat outside with Payton in the main waiting room. The hospital has a huge 20 foot tall Christmas tree in the atrium. He asked me what was my favorite part of Christmas, when I told him it was opening presents he told me no that was his favorite and I had to guess again. So I told him my second favorite was wrapping presents and he asked me if I was going to wrap one for him. Then he turned around and looked at me and asked me if Santa was going to visit Brayden and bring him presents too. It's funny how sometimes he can just floor me by showing such concern for the little brother he has never met. He really loves him and can't wait till he gets to see him.
I made the mistake the other day of telling him the doctor was going to see if she could bend the rules just once and let him come into the NICU and see Brayden through a window. We explained to him that was she was trying to do was kind of like breaking the rules just once, now everyday he asks if the doctor has broken the rules for him. I should have never told him that.
We are trying to move into a little bigger house this week so the posts may be a little sparse due to the busy schedule of work, hospital visits and moving but I will try and keep this updated.
I made the mistake the other day of telling him the doctor was going to see if she could bend the rules just once and let him come into the NICU and see Brayden through a window. We explained to him that was she was trying to do was kind of like breaking the rules just once, now everyday he asks if the doctor has broken the rules for him. I should have never told him that.
We are trying to move into a little bigger house this week so the posts may be a little sparse due to the busy schedule of work, hospital visits and moving but I will try and keep this updated.
Thursday, December 3, 2009
The BIG 3 0 !!!!!
Brayden hit the BIG 30 today!!!( 3.0 pounds that is)
We got to the NICU early today to talk to Dr. Nesslein. After we scrubbed in and walked around the corner guess who we ran into looking at an xray, yep the doctor. She greeted us with a smile and showed us his xray. She was glad, as were we, that he had no pneumo just some of his lingering lung collapse. She said that he needed to remain on the CPAP for a while to help open up his lungs. It is not good news but she told us that for a child as small as Brayden to go from the vent and then to no oxygen and then no CPAP in only a week is asking too much. She said that most babies his size are still on the CPAP requiring at least 35% oxygen. It makes us feel a little better knowing that he is not requiring oxygen but we hate the fact that they are still having to pump pressure into his fragile lungs.
we walked with her to the bedside where she started her morning assessment of him. She said he sounded good and that he looked really good. While doing her morning check Miranda asked her if she knew that the nurse that took care of him last night was sick and had just gotten over a fever. her normally cheery face turned to a frown, almost a scowl and she said," NO I DID NOT!!! I WILL BE HAVING A TALK WITH THE NURSING SUPERVISOR SHORTLY"! I was shocked to see her so angry but also glad to see the concern and sincerity in her face.
After the doctor finished her assessment we took turns holding Brayden, Miranda went first then while she went to pump I got my turn. When the nurse put him in my arms, he began to SAT better than when Miranda was holding him. The doctor walked over and told Brayden it was not nice to SAT higher for daddy then mommy. It was mommy who carried him and he needed to remember that. She told him to be good and she walked away to finish her rounds.
During my turn to hold him he began to DeSAT again. I wasn't overly worried because his color still looked good but he wasn't comfortable. the doctor came by shortly after Miranda came back and told us that she was leaving because her baby (her 14 month old son) had just drank Dawn Dish soap and she had to go meet them in the ER. I thought I was the only one that had bad luck. We finally had to put Brayden back in his isolette to try and help him recover. We had three nurses and two respiratory therapists trying to figure out why the CPAP machine was not helping him. Finally one of the RT's discovered his tubing had been crushed under the wheel of the isolette and and melted a hole in it. The tubing has a heating element in it to help warm the air before it gets to Brayden. After replacing the tubing Brayden recovered quickly. We sat with him for a while and when we felt he was comfortable we headed back home.
P.S.
to everyone that follows this Blog please say a special prayer for the baby in the room with Brayden. I'm sorry I don't know the name but they are very strict about giving out information. While we were struggling with Brayden the baby across from him was, from what I gathered, in a fight for his life. I didn't hear everything that was going on but there were several nurses and doctors rushing around trying to help him. Please say a prayer for the little one in POD1.
We got to the NICU early today to talk to Dr. Nesslein. After we scrubbed in and walked around the corner guess who we ran into looking at an xray, yep the doctor. She greeted us with a smile and showed us his xray. She was glad, as were we, that he had no pneumo just some of his lingering lung collapse. She said that he needed to remain on the CPAP for a while to help open up his lungs. It is not good news but she told us that for a child as small as Brayden to go from the vent and then to no oxygen and then no CPAP in only a week is asking too much. She said that most babies his size are still on the CPAP requiring at least 35% oxygen. It makes us feel a little better knowing that he is not requiring oxygen but we hate the fact that they are still having to pump pressure into his fragile lungs.
we walked with her to the bedside where she started her morning assessment of him. She said he sounded good and that he looked really good. While doing her morning check Miranda asked her if she knew that the nurse that took care of him last night was sick and had just gotten over a fever. her normally cheery face turned to a frown, almost a scowl and she said," NO I DID NOT!!! I WILL BE HAVING A TALK WITH THE NURSING SUPERVISOR SHORTLY"! I was shocked to see her so angry but also glad to see the concern and sincerity in her face.
After the doctor finished her assessment we took turns holding Brayden, Miranda went first then while she went to pump I got my turn. When the nurse put him in my arms, he began to SAT better than when Miranda was holding him. The doctor walked over and told Brayden it was not nice to SAT higher for daddy then mommy. It was mommy who carried him and he needed to remember that. She told him to be good and she walked away to finish her rounds.
During my turn to hold him he began to DeSAT again. I wasn't overly worried because his color still looked good but he wasn't comfortable. the doctor came by shortly after Miranda came back and told us that she was leaving because her baby (her 14 month old son) had just drank Dawn Dish soap and she had to go meet them in the ER. I thought I was the only one that had bad luck. We finally had to put Brayden back in his isolette to try and help him recover. We had three nurses and two respiratory therapists trying to figure out why the CPAP machine was not helping him. Finally one of the RT's discovered his tubing had been crushed under the wheel of the isolette and and melted a hole in it. The tubing has a heating element in it to help warm the air before it gets to Brayden. After replacing the tubing Brayden recovered quickly. We sat with him for a while and when we felt he was comfortable we headed back home.
P.S.
to everyone that follows this Blog please say a special prayer for the baby in the room with Brayden. I'm sorry I don't know the name but they are very strict about giving out information. While we were struggling with Brayden the baby across from him was, from what I gathered, in a fight for his life. I didn't hear everything that was going on but there were several nurses and doctors rushing around trying to help him. Please say a prayer for the little one in POD1.
The Drama never ends!!!
First let me start with our visit last night. After the doctor told us that he would be on CPAP for 6 hours and then off, we thought we would go back in the evening and hold him without all of the stuff on him. When we arrived we found that one of the nurses that has had him the most that we liked had him again. It is a great comfort to see the same faces because you know they know your child and what they act like in times of distress. We sat down to hold him and she swaddled him up and handed him to Miranda. She got comfortable in the chair and then the problems began.
Brayden began to Desat which can happen sometimes but he was having a hard time recovering. Usually he can recover on his own but he was struggling to breathe last night. At first we thought maybe he was bundled too tight and tried to unwrap him. It still didn't help. After about 15 minutes of trying to get his O2 levels back up he started to change colors so we had to put him back in his bed. Even after being in his bed, he still was unable to recover by himself. While the nurse was helping us try and get his sats back up she was talking to us and let slip that she had been sick and had run a fever the day before. Imagine the horror that went through our heads when the woman charged with taking care of our immune compromised, respiratory distressed child is sick. Not only was she sick, but she said she didn't go to the doctor to see what she had. Who the HELL thought that was a good idea????
We asked to speak to the doctor on call because Brayden was still not recovering from his episode and his Sat's were getting lower. When the doctor arrived Miranda tried to explain to her that our fear was that he had popped another pnuemo. She was rather cold and crass and said that she didn't see anything wrong with him. It wasn't until he desatted to the 60's in front of her that she decided to do something. She put him back on the CPAP and said he needed to stay on it through the night and that Dr. Nesslein would assess him in the morning. We sat by his bed side till 10:30 waiting to see if he was going to recover. When we felt he was stable we finally decided to leave and go home to Payton who was anxiously awaiting us. We called back several time throughout the night to check on him.
Brayden began to Desat which can happen sometimes but he was having a hard time recovering. Usually he can recover on his own but he was struggling to breathe last night. At first we thought maybe he was bundled too tight and tried to unwrap him. It still didn't help. After about 15 minutes of trying to get his O2 levels back up he started to change colors so we had to put him back in his bed. Even after being in his bed, he still was unable to recover by himself. While the nurse was helping us try and get his sats back up she was talking to us and let slip that she had been sick and had run a fever the day before. Imagine the horror that went through our heads when the woman charged with taking care of our immune compromised, respiratory distressed child is sick. Not only was she sick, but she said she didn't go to the doctor to see what she had. Who the HELL thought that was a good idea????
We asked to speak to the doctor on call because Brayden was still not recovering from his episode and his Sat's were getting lower. When the doctor arrived Miranda tried to explain to her that our fear was that he had popped another pnuemo. She was rather cold and crass and said that she didn't see anything wrong with him. It wasn't until he desatted to the 60's in front of her that she decided to do something. She put him back on the CPAP and said he needed to stay on it through the night and that Dr. Nesslein would assess him in the morning. We sat by his bed side till 10:30 waiting to see if he was going to recover. When we felt he was stable we finally decided to leave and go home to Payton who was anxiously awaiting us. We called back several time throughout the night to check on him.
Wednesday, December 2, 2009
The doctor's call
We decided to go to the hospital early today to talk to the doctor face to face. I couldn't believe it when we were getting ready to leave and there was snow all over the car. I know its winter but we are in Texas here people. I mean what the heck!! As we walked in the door of the hospital my phone rang, it was the doctor, she said hi in her usual cheery voice but I could tell there was bad news coming. She said that through the night he was desatting and she felt it was in his best interest if he went back on the CPAP machine. However the little bit of relief is that she is putting him on it in cycles of 6 hours on and 6 hours off. I told her we were walking through the door and would like to talk to her.
When we walked into the unit we discovered that Brayden had been moved to another POD. As we walked into POD 1 the nurse and RT were in beginning to try and set up the CPAP. He was crying and screaming, Miranda was trying to console him as they were shoving the tubes up his nose and trying to connect the tubes. I could see the pain in her eyes as she tried to comfort him, all she wanted to do was grab him and tell them to stop touching her son. I could see the words bubbling up in her. After they got him hooked up they sat her down in a chair and let her hold him. As the nurses handed brayden to her the doctor walked in and the first words out of Miranda mouth were not, "Hi", but rather,"do we really have to do this to him" as tears ran down her face. She told the doctor that her biggest fear was Brayden developing another pneumo and that if she didn't fight for him and stop them from doing it that she would never forgive herself. The doctor told us that she wrestled with this decision and discussed it with several of her partners. She said that for Brayden's long term health it is better for him to go on the CPAP to help promote his lung growth. She said that there is a window between 30 and 34 weeks where the lungs need to be allowed to grow and that if he was not on the CPAP to help open his lungs, we would miss the window. Dr. Nesslein also said that if she did not do this for him she would feel that she was not doing her best for him but also said that if he blew another pneumo that it would be her fault. She told us that to try and help him but keep from blowing a pneumo she would cycle his time on the CPAP every 6 hours and that if his x-ray came back good in the morning then she would change it to 3 hours on and 9 hours off.
Here is a cute video of Brayden laying in mommy's arms and looking around. Today was the most active i have seen him as far as his curiosity. After he finished crying and mommy was comforting him he was looking around at everything making the funniest faces. The expressions he can make with his eyes and forehead are hilarious.
When we walked into the unit we discovered that Brayden had been moved to another POD. As we walked into POD 1 the nurse and RT were in beginning to try and set up the CPAP. He was crying and screaming, Miranda was trying to console him as they were shoving the tubes up his nose and trying to connect the tubes. I could see the pain in her eyes as she tried to comfort him, all she wanted to do was grab him and tell them to stop touching her son. I could see the words bubbling up in her. After they got him hooked up they sat her down in a chair and let her hold him. As the nurses handed brayden to her the doctor walked in and the first words out of Miranda mouth were not, "Hi", but rather,"do we really have to do this to him" as tears ran down her face. She told the doctor that her biggest fear was Brayden developing another pneumo and that if she didn't fight for him and stop them from doing it that she would never forgive herself. The doctor told us that she wrestled with this decision and discussed it with several of her partners. She said that for Brayden's long term health it is better for him to go on the CPAP to help promote his lung growth. She said that there is a window between 30 and 34 weeks where the lungs need to be allowed to grow and that if he was not on the CPAP to help open his lungs, we would miss the window. Dr. Nesslein also said that if she did not do this for him she would feel that she was not doing her best for him but also said that if he blew another pneumo that it would be her fault. She told us that to try and help him but keep from blowing a pneumo she would cycle his time on the CPAP every 6 hours and that if his x-ray came back good in the morning then she would change it to 3 hours on and 9 hours off.
Here is a cute video of Brayden laying in mommy's arms and looking around. Today was the most active i have seen him as far as his curiosity. After he finished crying and mommy was comforting him he was looking around at everything making the funniest faces. The expressions he can make with his eyes and forehead are hilarious.
Off the Oxygen
Yesterday when we went to see Brayden, we were surprised when we walked in and found that they had pulled his oxygen hood off. He laying there in his isolette breathing room air with nothing extra for assistance and he was doing great. When Miranda got to hold him it was like holding a real baby, we still had to be careful with him because of his size but there was nothing in the way of us seeing his little face.
The doctor told us that if he continued to do well then she would leave him alone however, if he started to struggle then she would put him back on CPAP. For both of us this was worrisome because both times he has had a pneumo it was when he was on the CPAP machine. We both talked about this for a while discussing whether we should allow him to go back on the CPAP. The decisions you have to make in this kind of situation make you crazy. On the one hand, the doctor says it will promote lung growth and make him stronger in the long run but on the other hand you run the risk of popping another hole in his lungs and causing him to regress.
When we left he was doing pretty good but he looked like he tugging a little bit when he inhaled. A sight that was a little concerning but we hope it's just because he is tired.
Monday, November 30, 2009
Back to Work
Today was my first day back in the office since October 28. Not to say I haven't been working but being in the office is different. It makes me feel disconnected from what is going on at home and in the hospital.
I spoke with the doctor this morning and she said that Brayden had a really good night and even though part of his left lung is still collapsed his blood gases keep coming back really good. She said she was going to leave him in the oxygen hood and that she was not going to do anything to him unless he made her do it.
I met Miranda at Baby's R Us after work and we went straight to the hospital. When I met Miranda, Payton and Doa at the store Payton told Miranda to be sure and not drop Brayden. We both got a good laugh out of it. When we got to the hospital the nurse told us that Brayden had pulled his feeding tube out of his mouth twice. It's not a big deal to pull out the feeding tube, but it does still have to go back in. It was great sitting there holding him without having to worry about pulling something out of his chest or nose. To just sit there and hold my son and feel his little movements and whimpers. While I was holding him he also got the hiccups, it was the funniest thing to hear, he sounded like a little puppy whimpering. After about an hour he started getting hungry so we put him back in his bed and the nurse began his feeding. Here is a video of Brayden laying in his bubble sucking on his Binky while getting fed. Watch how mad he gets when he looses his Binky. That boy loves to eat and by george he will let you know it is feeding time. In that respect he is the complete opposite of Payton. We can't make Payton eat and I have a feeling that Brayden is going to eat us out of house and home.
I spoke with the doctor this morning and she said that Brayden had a really good night and even though part of his left lung is still collapsed his blood gases keep coming back really good. She said she was going to leave him in the oxygen hood and that she was not going to do anything to him unless he made her do it.
I met Miranda at Baby's R Us after work and we went straight to the hospital. When I met Miranda, Payton and Doa at the store Payton told Miranda to be sure and not drop Brayden. We both got a good laugh out of it. When we got to the hospital the nurse told us that Brayden had pulled his feeding tube out of his mouth twice. It's not a big deal to pull out the feeding tube, but it does still have to go back in. It was great sitting there holding him without having to worry about pulling something out of his chest or nose. To just sit there and hold my son and feel his little movements and whimpers. While I was holding him he also got the hiccups, it was the funniest thing to hear, he sounded like a little puppy whimpering. After about an hour he started getting hungry so we put him back in his bed and the nurse began his feeding. Here is a video of Brayden laying in his bubble sucking on his Binky while getting fed. Watch how mad he gets when he looses his Binky. That boy loves to eat and by george he will let you know it is feeding time. In that respect he is the complete opposite of Payton. We can't make Payton eat and I have a feeling that Brayden is going to eat us out of house and home.
Sunday, November 29, 2009
The road has another bump
This morning I called the nurse and she said that Brayden was doing ok, he was still on about the same amount of oxygen and the air in his chest was still there. It was some what good news that he had not gotten worse but a little disheartening that he had not gotten any better. Later the doctor called and said pretty much the same thing but she was optimistic about his xray saying that she thought it looked better. After hearing that news we decided not to go into the hospital till later.
45 minutes later the doctor called back and told me that our extremely feisty child had decided to pull the tube out of his chest. She also told us that she had decided to pull him off the CPAP and place him in a Oxygen hood. An Oxygen hood is pretty much what it sounds like, it is a plastic bubble that lays over his head and has Oxygen pumped into it. She said his xray showed he still had a small amount of air in his chest and the bottom part of his left lung was still collapsed but he seemed to be so much more comfortable she didn't want to mess with him. She is hoping that leaving him off the CPAP will help his lungs heal. Our hope is that he won't have to go back on the CPAP at all. Here is a pic of Brayden and his bubble.
The doctor came and spoke with us while we were visiting and gave us some really good news. She was able to switch with another doctor and will remain Brayden's primary doctor during the rest of his stay in the NICU. Miranda almost started crying she was so happy and told the doctor she would hug here but she was afraid she would get her all germy. Here is a pic of Brayden and his doctor. 
Payton's Christmas Pic
After the drama of this morning, Payton asked if he could go see Santa. We were shocked because every year in the past Payton has asked to go see Santa but as soon as we get there he backs out. He told us he was BRAVE and that he wanted to tell Santa what he wanted for Christmas...For those wondering, He wants a Thomas the Tank Engine Lionel Train. Here is Payton and Santa.
After seeing Santa and spending some time at Bass Pro Shop with Payton, Miranda and I went back to the hospital. It is so hard trying to choose which child to spend time with. Brayden needs us there with him to give him support but then again Payton has been left with Doa for the better part of a month. We talk to him on the phone often but he always tells us he misses us. I think he knows there is something going on with Brayden, he is a very intuitive little boy. This morning he asked me, out of no where and before I had told Doa about Brayden's pneumo, if Brayden was doing ok. I think he knows Brayden is struggling. It breaks my heart to have to leave him behind and not include him in what is going on with is little brother. He love shim so much and wants nothing more than for him to come home. Payton asked me today if he could come to the hospital with us so he could spend time with us. I love that little boy. He is going to be a great big brother.
Saturday, November 28, 2009
A bump in the night
This morning when I woke up I called the NICU to check on Brayden like I always do, when I got the nurse she said Brayden had a relatively quiet night but was up on his oxygen a little bit. I asked her if he would be okay with us holding him for about an hour and she said an hour would be fine. Then she told me to hold on the doctor was standing there and she wanted to talk to me. Thinking it was just her morning update I gladly said ok.
the doctor began as she always does in her nice chipper voice by saying good morning. Then she dropped the hammer! She told me that when she was examining Brayden this morning he just seemed more agitated than normal and didn't look himself so she took a blood gas and an xray. She said the blood gas came back,"Stone cold normal" but when she saw his xray, she told me she said a bad curse word in her head. Her next words made my heart drop..."Brayden has another hole in his left lung and we need to put in another chest tube".
I dreaded having to tell Miranda about it but i had no choice. the only bright spot about it was that Dr. Nesslein was there and she is a great comfort to Miranda. She is a very caring and compassionate person who takes the time to listen to us and explain everything to us as well as listen to our stories about Payton. Dr. Nesslein told me that while she did want to put in a chest tube to relieve the pressure around his lungs, she told me that she was going to do it with an IV catheter rather than a full blown sewn in chest tube like he had before. We were told by another doctor that Nesslein is the lung expert of the group, apparently she spent 6 years doing her fellowship and working at some sort of a respiratory institute. With Brayden having so many lung issues, it is a huge comfort to us to know she is so knowledgeable.
We had planned on going to the hospital early today but after hearing the update about Brayden we rushed to get ready and leave. We wanted to get there as soon as possible to be with him and talk to the doctor face to face. It was hard to see him laying there with another tube in his chest. We were sure we had gotten past this point after he came off the JET. While speaking with the doctor she told us that while having a pneumo in the second week of life is rare, it is not uncommon in preemies like Brayden who have lung disease. She spoke with us for a while and told us that she is still not overly concerned about Brayden's status and that he should only have the chest tube in for a couple of days. However while we were standing there talking to her Brayden stopped breathing for a minute or two, it felt like an eternity. I was looking at him through his isollette when he had his episode and I saw him stop moving. My heart began to sink all I could do was stare at him and will him to breathe again. His O2 saturation and his heart rate began to drop. Dr. Nesslein immediately reached in and began to try and stimulate him to make him breathe. After a few minutes his heart rate and saturation came back up. If there had not been a chair right there, I think I would have had to pick Miranda up off the floor. We both would have freaked if the doctor had not been standing there.
After sitting there with him for a while after the episode, Miranda and I had to leave because they had another baby coming into the POD. After some sighs and a long good bye we left to come home but planned to return later to check on him again later this evening.
the doctor began as she always does in her nice chipper voice by saying good morning. Then she dropped the hammer! She told me that when she was examining Brayden this morning he just seemed more agitated than normal and didn't look himself so she took a blood gas and an xray. She said the blood gas came back,"Stone cold normal" but when she saw his xray, she told me she said a bad curse word in her head. Her next words made my heart drop..."Brayden has another hole in his left lung and we need to put in another chest tube".
I dreaded having to tell Miranda about it but i had no choice. the only bright spot about it was that Dr. Nesslein was there and she is a great comfort to Miranda. She is a very caring and compassionate person who takes the time to listen to us and explain everything to us as well as listen to our stories about Payton. Dr. Nesslein told me that while she did want to put in a chest tube to relieve the pressure around his lungs, she told me that she was going to do it with an IV catheter rather than a full blown sewn in chest tube like he had before. We were told by another doctor that Nesslein is the lung expert of the group, apparently she spent 6 years doing her fellowship and working at some sort of a respiratory institute. With Brayden having so many lung issues, it is a huge comfort to us to know she is so knowledgeable.
We had planned on going to the hospital early today but after hearing the update about Brayden we rushed to get ready and leave. We wanted to get there as soon as possible to be with him and talk to the doctor face to face. It was hard to see him laying there with another tube in his chest. We were sure we had gotten past this point after he came off the JET. While speaking with the doctor she told us that while having a pneumo in the second week of life is rare, it is not uncommon in preemies like Brayden who have lung disease. She spoke with us for a while and told us that she is still not overly concerned about Brayden's status and that he should only have the chest tube in for a couple of days. However while we were standing there talking to her Brayden stopped breathing for a minute or two, it felt like an eternity. I was looking at him through his isollette when he had his episode and I saw him stop moving. My heart began to sink all I could do was stare at him and will him to breathe again. His O2 saturation and his heart rate began to drop. Dr. Nesslein immediately reached in and began to try and stimulate him to make him breathe. After a few minutes his heart rate and saturation came back up. If there had not been a chair right there, I think I would have had to pick Miranda up off the floor. We both would have freaked if the doctor had not been standing there.
After sitting there with him for a while after the episode, Miranda and I had to leave because they had another baby coming into the POD. After some sighs and a long good bye we left to come home but planned to return later to check on him again later this evening.
Day after Turkey
Sorry for the late update but with yesterday being Black Friday we were busy as I'm sure many of you were. We did not partake in the shopping madness but we opted to spend some quiet time with Brayden. As Thanksgiving was my day to hold Brayden today was Miranda's however, Brayden was being a little fussy and we decided not to upset him more by pulling him out of the incubator. There was also a new admission into the NICU in the same POD as Brayden so our time with him was cut short. He was a little agitated and was requiring more O2 than usual. Miranda was worried about him as any mother would be. All in all a quiet day.
Friday, November 27, 2009
Daddy's Big Boy
After a nice Thanksgiving lunch at Doa's house, Miranda and I headed to the NICU to spend some time with Brayden. Since Miranda got to hold him yesterday, it was my turn today. When we got there, the nurse had him all bundled up so all you could see was a head. She told us that he was doing great but was quite feisty when she tried to change his diaper. They all keep telling us that! (I think we are going to have our hands full with this one).
When I got to hold him it was scary. He is so tiny, the pictures do not do him justice, and it feels like if you squeeze to hard he will break. But the feeling of holding your child for the first time is something that just can't be beat. For those who have kids you know what I mean. In the case of holding both Payton and Brayden, imagine picking up a little cornish game hen and trying to hold it close to you.
My time holding him was cut short because he managed to get the CPAP machine off his nose and he started to de saturate, which means his blood oxygen level began to drop to a dangerous level. For the most part they want his O2 levels to be between 85% and 95%, most of us stay above 97%. While trying to get him back on the bed and hooked back up his O2 levels dropped to the 60's which with prolonged oxygen deprivation can lead to brain damage and other complications. Here is a video of how feisty he is. I took this while the nurse was trying to get his CPAP machine back on his nose. Look how mad he is.
Wednesday, November 25, 2009
Kangaroo Care
Well last night Brayden was in a bit of a mood and we didn't want to stress him out too much so we didn't hold him but we did spend a couple of hours touching him and playing with his little hands.
Today when we went to the NICU early so we could hold him and speak to the doctor directly. When we got there, the nurses were busy and we couldn't hold him right away so they asked us if we would change his diaper and take his temp. It was kind of weird changing his diaper with all the wires and stuff still attached but I did it. Here is what he looks like now back on the CPAP and without all of the arterial lines.
Miranda was the first to hold him today. It was great seeing him nuzzled up close to her. I took some video of her holding him.
Today when we went to the NICU early so we could hold him and speak to the doctor directly. When we got there, the nurses were busy and we couldn't hold him right away so they asked us if we would change his diaper and take his temp. It was kind of weird changing his diaper with all the wires and stuff still attached but I did it. Here is what he looks like now back on the CPAP and without all of the arterial lines.
Miranda was the first to hold him today. It was great seeing him nuzzled up close to her. I took some video of her holding him.
The doctor spent about 20 minutes or more sitting there talking to us while Miranda was holding Brayden. She was telling us how proud she was of him as well as how moody he is. Apparently he likes to take swings at people who mess with him when he is trying to sleep. She told us that his x-rays and blood gases have looked so good that they are not going to do any more unless he gives them a reason to think he is under duress. The most heart braking news she gave us is that she is being moved over to Cook Children's on December 1st and that she will no longer be his primary doctor. This shocked both of us but Miranda took it hard. She really likes Dr. Nesslein because she not only cares about Brayden but she has a great calming presence about her. We will definitely miss her.
Everything went great when Miranda was holding Brayden until he got hungry. It was funny watching him sit there and make sucking motions when she held him up to her chest. The comfort and smell of being near Miranda's chest really kicked in those nursing instinct and he just kept on making sucking noises. The doctor told us it will be a few weeks before she can try and breastfeed him, he has to be off the CPAP machine and holding his own temperature.
Tomorrow is my turn to hold him. Check back for pictures of that.
Tuesday, November 24, 2009
A breath of fresh air
Just got off the phone with the doctor and she says they have pulled the breathing tube out and he is on CPAP and doing great!!!! They have already pulled one of the arterial lines out of his stomach and will pull the other one out this evening around 5. She told us that if we go up to the NICU after 7:30 then we will be able to hold him for the first time. I am so excited, I can't wait. Of course I will let Miranda hold him first. Stay tuned for pictures of our first Kangaroo Care session.
Most Importantly, I can't believe I forgot, the Ultrasound on his head to see if he had any bleeding on his brain came back clear. They said his head is perfect!!!
Most Importantly, I can't believe I forgot, the Ultrasound on his head to see if he had any bleeding on his brain came back clear. They said his head is perfect!!!
The tubes come out
Yesterday was a really good day for Brayden, his x-rays and blood gases came back so good that they were able to pull the chest tube out of his left side. They upped his feeds to over 11mls every three hours to try and get him growing.
Before we went to the NICU Miranda had to go to a her doctor for a check up. Not knowing it was going to take 3 hours she told me to go ahead and go see Brayden, so I left her and Payton siting there. I hated leaving them there but I was bale to spend a good couple of hours holding Brayden's hand and caressing his little head. While I was in there I spoke with the doctor on call and she told me that because he has been doing so good, they were going to take him from the JET to the conventional Ventilator. This raised some fears in our minds because this was how Payton's lungs collapsed. After talking it over with the Doctor, they convinced us that this was the next step down to completely being off the ventilator and going back on the CPAP machine. They do this step down because they need to see if the baby is going to be able to breathe on its own and if not how much support does it need. If the baby is not able to breathe on it's own and they went straight from the JET to CPAP then it would be more traumatic to reintibate the baby.
When we called back last night the nurse said he was doing great and that they had taken a couple of x-rays to make sure there was no more air collecting in his chest. This is a great step forward in his getting better. They said that if he did good on the vent over night, that they would put him on CPAP and start to remove the arterial lines in his tummy. Once they pull these lines out we will be able to hold him.
Before we went to the NICU Miranda had to go to a her doctor for a check up. Not knowing it was going to take 3 hours she told me to go ahead and go see Brayden, so I left her and Payton siting there. I hated leaving them there but I was bale to spend a good couple of hours holding Brayden's hand and caressing his little head. While I was in there I spoke with the doctor on call and she told me that because he has been doing so good, they were going to take him from the JET to the conventional Ventilator. This raised some fears in our minds because this was how Payton's lungs collapsed. After talking it over with the Doctor, they convinced us that this was the next step down to completely being off the ventilator and going back on the CPAP machine. They do this step down because they need to see if the baby is going to be able to breathe on its own and if not how much support does it need. If the baby is not able to breathe on it's own and they went straight from the JET to CPAP then it would be more traumatic to reintibate the baby.
When we called back last night the nurse said he was doing great and that they had taken a couple of x-rays to make sure there was no more air collecting in his chest. This is a great step forward in his getting better. They said that if he did good on the vent over night, that they would put him on CPAP and start to remove the arterial lines in his tummy. Once they pull these lines out we will be able to hold him.
Monday, November 23, 2009
Brayden's Eating Again
Yesterday we went and spent a few hours sitting with Brayden and holding his little hands. He is doing great. His blood gases have been coming back so good that they have weened him down on the JET to its lowest settings. He is still on the JET and will probably remain on it for several more days but sitting there watching him, you can see him breathing on his own over the machine.
His xrays have been coming back better and better so they put the chest tube on his left side on what they call water seal. Which means it is still in his chest but it is not actively sucking out air. This is the stage they put the chest tubes when they are getting ready to pull it out. Last night when the nurse was telling us about the xray she said that the pnuemo on the left was still there and getting better but she said that if he did not have a chest tube in right now, they would not put one in for a pneumo of this size. That really made Miranda feel at ease.
If his morning xray comes back good then they will probably pull his chest tube out today. He is such a strong little man. They have also upped his feedings to almost 1/4 of an oz every three hours. They weighed him two days ago and he was 2.9 lbs but when they weighed him yesterday he was 2.7lbs. The 2.7 is probably more realistic, all the tubes and IV add some extra weight. Here are some pics I took of us visiting last night. Enjoy.
Look at him staring up at mommy.
Look at those cute little fingers.Saturday, November 21, 2009
Party Thanks
We would like to send out a very heartfelt thank you to everyone for the gifts we received but more for the support you have shown us. It means a lot to us to have such great friends and family to lean on.
Just to let everyone know, after the party Miranda and I went to spend a little time with Brayden in the NICU. As we were walking towards the NICU my phone rang. Immediately Miranda got tense. I got nervous when I saw the number was from the Baylor NICU. When I answered the phone, the doctor told me he was calling to give us an update. I told him we were on our way in and he said he would speak with us then.
He told us that Brayden's morning xray looked really good and that the pneumo on the right side was gone and he was going to pull the chest tube out of his right side. He also told us that his blood gases had been coming back so good that they were able to ween him down on the JET. HE is still on the vent and will be so for a couple of weeks but he is doing so much better.
It was great to see all of you at the shower and I really appreciate everyone taking the time to drive such great distances to be with us, even if it was for only a few short hours. Thank you all and keep watching the blog for more updates and pictures.
Just to let everyone know, after the party Miranda and I went to spend a little time with Brayden in the NICU. As we were walking towards the NICU my phone rang. Immediately Miranda got tense. I got nervous when I saw the number was from the Baylor NICU. When I answered the phone, the doctor told me he was calling to give us an update. I told him we were on our way in and he said he would speak with us then.
He told us that Brayden's morning xray looked really good and that the pneumo on the right side was gone and he was going to pull the chest tube out of his right side. He also told us that his blood gases had been coming back so good that they were able to ween him down on the JET. HE is still on the vent and will be so for a couple of weeks but he is doing so much better.
It was great to see all of you at the shower and I really appreciate everyone taking the time to drive such great distances to be with us, even if it was for only a few short hours. Thank you all and keep watching the blog for more updates and pictures.
Friday, November 20, 2009
Baby Shower Update
Ok event hought Miranda has been discharged, the Baby shower will be held tomorrow at 1:00 at Baylor All Saint Hospital.
The address is 1400 8th Ave.
Ft. Worth, Tx 76104
It will be in the Antepartum Day Room.
For those who are attending please call for directions or assistance when you get to the hospital. It is a pretty big and confusing place. Thanks and I hope to see you tomorrow.
The address is 1400 8th Ave.
Ft. Worth, Tx 76104
It will be in the Antepartum Day Room.
For those who are attending please call for directions or assistance when you get to the hospital. It is a pretty big and confusing place. Thanks and I hope to see you tomorrow.
Brayden Update 11-20-2009
We went and saw Brayden this morning after speaking with the doctor on the phone. She told us that Brayden had a very uneventful and boring night. Which for us is a great relief. He is still on the JET but is close to breathing room air, not using oxygen. She told us that she stopped his Dopamine, which is his Blood pressure medicine, because he was staying pretty stable. They have him on a slow morphine drip to keep him sedated so the JET can do it's job.
When we went to see him, the Doctor smiled at us from across the room and said that she had a talk with him last night and told him that he needed to behave. Last night when we spoke to her she told us that she had a long talk with him and told him he could be her boyfriend and live in the lap of luxury if he would lay still and not cause any more excitement. We had a good laugh about it. We told her that he had been hearing all the stories about Payton and decided that he couldn't be out done by his older brother. One of Miranda's nurses told us before Brayden was born that Payton was our miracle child and Brayden was going to be the normal one. I guess the battle over who is more special has now Begun!!!
Our visit with him this morning was short due to Miranda's still high blood pressure but it was very enjoyable. I love to sit and just stare at him. People always ask me if i want a chair to sit in, but for me all I want is to be as close to him as possible. Since he is too unstable to touch, I cross my arms and place my head on the glass and just stare at him. He is so perfect!! Just for size reference, here is a pic from a couple of days ago with my finger next to his foot. Enjoy!!
When we went to see him, the Doctor smiled at us from across the room and said that she had a talk with him last night and told him that he needed to behave. Last night when we spoke to her she told us that she had a long talk with him and told him he could be her boyfriend and live in the lap of luxury if he would lay still and not cause any more excitement. We had a good laugh about it. We told her that he had been hearing all the stories about Payton and decided that he couldn't be out done by his older brother. One of Miranda's nurses told us before Brayden was born that Payton was our miracle child and Brayden was going to be the normal one. I guess the battle over who is more special has now Begun!!!
Our visit with him this morning was short due to Miranda's still high blood pressure but it was very enjoyable. I love to sit and just stare at him. People always ask me if i want a chair to sit in, but for me all I want is to be as close to him as possible. Since he is too unstable to touch, I cross my arms and place my head on the glass and just stare at him. He is so perfect!! Just for size reference, here is a pic from a couple of days ago with my finger next to his foot. Enjoy!!
Miranda's Going Home
HOOOOORAAYYYYY!!!!
The Doctor came in and said he is releasing Miranda to go home. Not sure what time we are leaving today but we will not be going all the way back to Denton to stay. A social Worker here at the hospital told us about the Ronald McDonald Hose over by Cook Children's and has set us up with a room.
According to the Social Worker we can stay there for 30 - 45 days so we can be close to Brayden. Payton will also be able to stay with us which is great. We have missed being with him the past few weeks.
With us being discharged, I will keep you up to date on the baby shower. We may be able to have it over at the Ronald McDonald house. Stay tuned for more information.
The Doctor came in and said he is releasing Miranda to go home. Not sure what time we are leaving today but we will not be going all the way back to Denton to stay. A social Worker here at the hospital told us about the Ronald McDonald Hose over by Cook Children's and has set us up with a room.
According to the Social Worker we can stay there for 30 - 45 days so we can be close to Brayden. Payton will also be able to stay with us which is great. We have missed being with him the past few weeks.
With us being discharged, I will keep you up to date on the baby shower. We may be able to have it over at the Ronald McDonald house. Stay tuned for more information.
Thursday, November 19, 2009
Baby Shower
To: Friends and Family
Come help us celebrate the arrival of Brayden Riley Leija. For those wondering what to get him, he loves monkeys, lions, giraffes or anything with a jungle theme. His favorite colors are browns, sage and nuetrals.Brayden has registered at Baby's R US, Target and Burlington's Baby Depot and he loves Gift Cards.His party will be heldSaturday November 21st @ 1:00 p.m.at the Baylor All Saints Hospital on 8th Ave in Ft. Worth, Texas Rm W326 (Please call for directions and location of Room)
Come help us celebrate the arrival of Brayden Riley Leija. For those wondering what to get him, he loves monkeys, lions, giraffes or anything with a jungle theme. His favorite colors are browns, sage and nuetrals.Brayden has registered at Baby's R US, Target and Burlington's Baby Depot and he loves Gift Cards.His party will be heldSaturday November 21st @ 1:00 p.m.at the Baylor All Saints Hospital on 8th Ave in Ft. Worth, Texas Rm W326 (Please call for directions and location of Room)
The Dr's calming words
After the phone call last night we were expecting more changes when we got to the NICU this morning. Miranda is still batteling blood pressure issues as well as struggling with the battle Brayden is undergoing. When I got to the NICU we ran into a very familiar face. The receptionist at the front desk, Linda, was the receptionist at Harris when Payton was born. As soon as I walked in she says hey I recognize you. To me it is comforting to have a familiar face in such a stressful place. I went and dropped off the breastmilk form last night and visited Brayden while Miranda was still trying to wake up and get her blood pressure under control. The Dr. spoke with me and told me they were still having issues with his blood pressure. There is an Artery in the heart called a PDA that connects to the umbilical cord while the child is in utero. This artery takes the blood from the mother and bypasses the lungs and the right side of the heart and goes directly to the fetus's body. After birth the PDA is supposed to close off and start shunting blood to the Lungs and the left side of the heart. The doctor explained to me that in Brayden's case, the artery has not completely shut off and he is shunting blood to the wrong part of the heart and lungs. She also explained that his kidneys are not filtering quite like they should and he is having an excess buildup of acid in his blood, which they are treating with medication. As well as the PDA and the kidneys he is also having problems with his liver which is causing him to have to undergo light therapy. Here is a picture I took this morning.
While visiting with the Dr and Brayden Miranda texted me and told me her BP was 176/108. I ran back to the room to try and be with her and to help her get ready to visit Brayden.
When we walked into Pd 2 the nurse greeted us and began a rundown of all the changes that had taken place last night. We got Miranda a chair so she could sit down and rest while visiting Brayden. While dealing with all of the stress from the NICU is tough, Miranda is still struggeling with her own medical issues. Dr. Neissline is Brayden's primary and she is a blessing. She is very calming and very friendly. She sat and talked with us for almost 30 minutes explaining to us how he was doing, what she was going to do. This conversation helped calm Miranda down and give her the piece of mind that he is in good hands. And he is!!!
Here is a pic of Mom and Baby Brayden.
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