2013. What can I say about 2013? Well, just in the month of January we visited the pediatricians office 7 times, made 3 trips to the ER, had 2 routine lab appointments, got 1 X-ray, and was admitted to the hospital for an overnight stay. But who's counting?
It started around Christmas with a monstrous bug that plagued both boys and left Brody wheezing and coughing and in need of breathing treatments for several weeks. It turned into pneumonia and about the time he started feeling better his nephrostomy tube decided to abort ship. That's been a fun ride. The surgeon does not want to replace the tube because of the large amount of scar tissue in his kidney. Keep in mind this is the only way urine can leave his body. So we are using catheters/feeding tubes that we have to place in his side ourselves and replace every few days until further notice. And even though he went through a really weird few weeks of refusing his bottle (he would only drink on avg. 1.5oz at a time) and throwing up a lot (when your kidneys don't perform normally you can feel nauseous because your body is not eliminating waste product like it should), Brody's lab work has actually looked really good lately. He's been struggling with the weight gain since November...actually lost a little weight...but *knock on wood* *fingers crossed* *praying on bent knees* he actually seems hungry and eager for food the past few days. This is something very new and very exciting. Brody is also starting to become mobile - army crawling and rolling around everywhere. He'll make you dizzy! It is so cute and also so encouraging to see him progressing. He has been in physical therapy for a few months now and the therapist is quite impressed with his improvement.
...I'm often reminded that life is sometimes 2 steps forward, 1 step back. *sigh*
In other news, I now have a 3 year old! Ryder, he is something else. I honestly cannot say enough about how funny this kid is. He is curious, cuddly, and all around BOY. Seriously. I don't even know what to write because my mind is just flooded with things he's done and said and I want to write it all down so I don't forget but there is just sooo much! ...my kid is just the best kid, all around, hands down. I'll leave it at that. Anyways, with Christmas, the sickies, and everything else going on I almost forgot to plan his birthday party.
But that's our little secret ;)
With mommy brain in full gear, we celebrated in style at Chick-Fil-A in Monroe. They were excellent and took care of us from start to finish. I highly recommend having your kid's party there, especially if you don't have time to plan anything more than the time & date. He enjoyed it and it was fun to watch him interacting with all his friends from school, and his cousins. ...He is currently obsessed with tools, trucks, cars, trains, guns, knives (Lord, help), Batman, Spiderman, Superman, and loves to watch Curious George and Max & Ruby. If you spend more than 5 minutes with him, he'll probably ask you why you have bones and who makes the sun come up, even though I've answered these very questions hundreds of times. He also likes to hunt for bears, deer, and wolves...they are everywhere!! He takes pride in working with his daddy and is the only person who can make Brody laugh instantly, no matter what.
Adam and I have both been crazy busy. And if we're not busy we're crazy tired. I look forward to things slowing down a bit and maybe going on a date or two with my husband. When you have someone babysit your child all day, every day while at work, it's kind of hard to find a babysitter on a Friday or Saturday night...it's also hard to not feel an enormous amount of guilt when you choose not to spend every waking second with them when nights and weekends are all you have. I know one day I will miss my kids, annoy my husband because we're always together, and look back at this and laugh.
And now I am reminded I must start to plan a FIRST BIRTHDAY PARTY!!! lol. Sometimes I feel like I'm just trying to stay afloat. :)
Wednesday, February 6, 2013
Monday, December 31, 2012
Reflection
WOW. Is it really December 31, 2012?
I realize it has been 6 months since my last post and I feel like such a failure! I promised myself if I was going to write a blog that I was going to keep at it and not get this far behind! Oh man...what have I done?! LOL. I could try and get everyone up to speed with where Brody's at but 6 months is a lot to write about. So, I'd like to take this time and opportunity to reflect back on the past year. Makes sense, right?
January started the year started off with a bang as we learned about Brody. I am thankful that I was able to grieve before the birth of my sweet baby, even though it made for a difficult pregnancy. And although I couldn't fully know what was to come at least I was prepared so it didn't come as a shock when I was left all alone, with empty arms, in a hospital room that was once filled with doctors and nurses immediately after giving birth.
February was filled with non-stress tests, bio physical profiles and ultrasounds. I learned to trust as God does not make mistakes. God created this perfect baby for our family. I admit, I did cry a few times feeling like I was robbed of a perfect pregnancy and a perfect baby. I had no idea that I was just defining the word "perfect" incorrectly.
In March we welcomed sweet Brody. Adam and I grew a lot during this time. Basically, March, April, and May were all about finding the delicate balance it took to spend time with Brody, with Ryder, and with each other. I have never so desperately wanted to just have my family together for one day. One hour. One minute. Brody needed a lot of machines and medications just to keep him alive and if Adam and I weren't at the hospital we were calling and speaking to his doctors and nurses.
I learned how to change a diaper with all sorts of wires and tubes in the way. I learned how to take his vitals, place a feeding tube, and give a shot. I knew how to read his monitors and which wires were safe to unplug to pick him up. Day after day I left him in the care of the hospital only to go home empty handed. It wasn't easy trying to explain to a 2 year old about his little brother, whom he had never met but somehow I believe Ryder got it. He has a love for Brody that is beyond words. They have such a special bond and it's so amazing to witness.
Brody surprised everybody and came off dialysis after just 6 weeks! He eventually got weaned off the oxygen and has been breathing completely unassisted since the end of April. Both of which I am so beyond thankful for. Every day with out dialysis is a miracle and I continue to ask God to bless us and keep him off of dialysis until he can get a transplant. His doctor even talked to us several times about a trach and that he may never breath on his own. I love how my little boy has proven doctors wrong time and time again. :)
Our family was finally together for the first time at the end of May. I will never forget the look on Ryder's face when he came running down the sidewalk to see his little brother.
Brody was hospitalized in June and twice in July for infections. He got rid of his feeding tube mid-July and we had the Brody Johnson Benefit to raise money for his medical expenses. I cannot say thank you enough to everybody who had a hand in putting together that benefit. It was amazing. Thank you to those that came and supported us. Thank you to those that could not be there but prayed for us. Thank you. I had to take a lot of unpaid time from work and God has provided for our every need.
Brody had his 7th surgery in August and a nephrostomy bag was put in place. It is cumbersome to say the least but we are learning to live with it.
September and October were low key. Just a LOT of doctor appointments and blood testing. Through it all I still have the happiest baby in the whole world. The ultimate challenge of these two months were simply trying to get Brody to gain weight. We took a weekend trip to Nashville for a wedding and of course had to make a trip to the ER there too. But this time it was for Ryder. Not 30 minutes after arriving at the hotel he knocked out his front tooth! He might be the most accident prone child ever. The highlight of the year however (second to Brody being born, of course) is that Ryder is finally diaper free! Hallelujah!! :)
I started back to work mid-November which comes as a huge blessing. It means Brody is well enough that I can return to work. Brody also started physical therapy through Babies Can't Wait. He was evaluated and found to have "mild delays" and I can really tell the therapy is helping. I can't say enough good things about Babies Can't Wait.
Brody had his latest surgery at the beginning of December and has continued to pack on the pounds. He is in the less than 2 percentile for both height and weight but his doctor is happy with his own growth curve. He is currently around the 14 pound mark and can sit up on his own pretty well. He's finally starting to bear weight on his feet too. He has a contagious, heart-melting smile and loves the sound of his own voice. Oh, and Ryder chipped his other front tooth. ;)
Eight surgeries, 2 blood transfusions, hundreds of blood tests, ultrasounds, x-rays and doctor appointments, I'm happy 2012 is coming to a close. I'm looking forward to 2013, knowing it's going to be a crazy ride, because God is good all the time. He has gotten us through this year, making each one of us stronger, and I know he will take care of us through it all. Ryder and Brody are the best boys any mother could ask for. I thank God every day for both of them. I know they will both continue to surprise and amaze me. Adam has stuck by my side, even during my darkest days, and I hope we can take more time for ourselves this coming year. A few more date nights maybe. I'm hoping Brody gets his transplant in early 2013 and I'm hoping Ryder doesn't hurt himself too bad!
I feel the need to write out my new years resolutions too. Maybe this will help me stick with them?? So here they are in no particular order:
1. Be kind, especially to my incorrigible, yet adorable, 3 year old.
2. Spend more time with Adam. (we will celebrate our 5 year anniv. in June)
3. Use my CFA coupons (haha)
4. Drink more water, take the stairs, and eat breakfast.
5. Run ...{shutter}
...I'm sure I'll come up with more, as I always do.
So here's to a wonderful 2013!
...Peace out '12.
I realize it has been 6 months since my last post and I feel like such a failure! I promised myself if I was going to write a blog that I was going to keep at it and not get this far behind! Oh man...what have I done?! LOL. I could try and get everyone up to speed with where Brody's at but 6 months is a lot to write about. So, I'd like to take this time and opportunity to reflect back on the past year. Makes sense, right?
January started the year started off with a bang as we learned about Brody. I am thankful that I was able to grieve before the birth of my sweet baby, even though it made for a difficult pregnancy. And although I couldn't fully know what was to come at least I was prepared so it didn't come as a shock when I was left all alone, with empty arms, in a hospital room that was once filled with doctors and nurses immediately after giving birth.
February was filled with non-stress tests, bio physical profiles and ultrasounds. I learned to trust as God does not make mistakes. God created this perfect baby for our family. I admit, I did cry a few times feeling like I was robbed of a perfect pregnancy and a perfect baby. I had no idea that I was just defining the word "perfect" incorrectly.
In March we welcomed sweet Brody. Adam and I grew a lot during this time. Basically, March, April, and May were all about finding the delicate balance it took to spend time with Brody, with Ryder, and with each other. I have never so desperately wanted to just have my family together for one day. One hour. One minute. Brody needed a lot of machines and medications just to keep him alive and if Adam and I weren't at the hospital we were calling and speaking to his doctors and nurses.
I learned how to change a diaper with all sorts of wires and tubes in the way. I learned how to take his vitals, place a feeding tube, and give a shot. I knew how to read his monitors and which wires were safe to unplug to pick him up. Day after day I left him in the care of the hospital only to go home empty handed. It wasn't easy trying to explain to a 2 year old about his little brother, whom he had never met but somehow I believe Ryder got it. He has a love for Brody that is beyond words. They have such a special bond and it's so amazing to witness.
Brody surprised everybody and came off dialysis after just 6 weeks! He eventually got weaned off the oxygen and has been breathing completely unassisted since the end of April. Both of which I am so beyond thankful for. Every day with out dialysis is a miracle and I continue to ask God to bless us and keep him off of dialysis until he can get a transplant. His doctor even talked to us several times about a trach and that he may never breath on his own. I love how my little boy has proven doctors wrong time and time again. :)
Our family was finally together for the first time at the end of May. I will never forget the look on Ryder's face when he came running down the sidewalk to see his little brother.
Brody was hospitalized in June and twice in July for infections. He got rid of his feeding tube mid-July and we had the Brody Johnson Benefit to raise money for his medical expenses. I cannot say thank you enough to everybody who had a hand in putting together that benefit. It was amazing. Thank you to those that came and supported us. Thank you to those that could not be there but prayed for us. Thank you. I had to take a lot of unpaid time from work and God has provided for our every need.
Brody had his 7th surgery in August and a nephrostomy bag was put in place. It is cumbersome to say the least but we are learning to live with it.
September and October were low key. Just a LOT of doctor appointments and blood testing. Through it all I still have the happiest baby in the whole world. The ultimate challenge of these two months were simply trying to get Brody to gain weight. We took a weekend trip to Nashville for a wedding and of course had to make a trip to the ER there too. But this time it was for Ryder. Not 30 minutes after arriving at the hotel he knocked out his front tooth! He might be the most accident prone child ever. The highlight of the year however (second to Brody being born, of course) is that Ryder is finally diaper free! Hallelujah!! :)
I started back to work mid-November which comes as a huge blessing. It means Brody is well enough that I can return to work. Brody also started physical therapy through Babies Can't Wait. He was evaluated and found to have "mild delays" and I can really tell the therapy is helping. I can't say enough good things about Babies Can't Wait.
Brody had his latest surgery at the beginning of December and has continued to pack on the pounds. He is in the less than 2 percentile for both height and weight but his doctor is happy with his own growth curve. He is currently around the 14 pound mark and can sit up on his own pretty well. He's finally starting to bear weight on his feet too. He has a contagious, heart-melting smile and loves the sound of his own voice. Oh, and Ryder chipped his other front tooth. ;)
Eight surgeries, 2 blood transfusions, hundreds of blood tests, ultrasounds, x-rays and doctor appointments, I'm happy 2012 is coming to a close. I'm looking forward to 2013, knowing it's going to be a crazy ride, because God is good all the time. He has gotten us through this year, making each one of us stronger, and I know he will take care of us through it all. Ryder and Brody are the best boys any mother could ask for. I thank God every day for both of them. I know they will both continue to surprise and amaze me. Adam has stuck by my side, even during my darkest days, and I hope we can take more time for ourselves this coming year. A few more date nights maybe. I'm hoping Brody gets his transplant in early 2013 and I'm hoping Ryder doesn't hurt himself too bad!
I feel the need to write out my new years resolutions too. Maybe this will help me stick with them?? So here they are in no particular order:
1. Be kind, especially to my incorrigible, yet adorable, 3 year old.
2. Spend more time with Adam. (we will celebrate our 5 year anniv. in June)
3. Use my CFA coupons (haha)
4. Drink more water, take the stairs, and eat breakfast.
5. Run ...{shutter}
...I'm sure I'll come up with more, as I always do.
So here's to a wonderful 2013!
...Peace out '12.
Wednesday, June 20, 2012
The Road Home
Ever had writer's block even when you've known exactly what you want to write about? Or feel like you're so behind it would just take forever to catch up so you just keep procrastinating over and over? Yeah, that's me. There are so many things I want to say but I just don't know how to write it all without sounding like a manic depressive chick with ADD. ...But I'll try...I only have a whole month of updates to write about.
The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...
The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.
During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.
But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).
The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...
The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.
During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.
But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).
Tuesday, May 8, 2012
Awaiting Surgery #4
Brody is becoming quite the snuggle bunny. Both Saturday and Sunday when we walked into the NICU, Brody was hanging out at the nurses' station getting loved on by some awesome nurses. I can't even begin to describe the feeling I had when I saw that. The best word that my delirious brain can come up with is "joy". It was just a few weeks ago that he was on a ventilator and receiving dialysis for several hours a day with multiple tubes hanging off his little body...and wasn't able to be held. Maybe he's making up for lost time ;) He loves being held and looking around the room. I went and bought a Moby wrap so when when he comes home I can hold him all the time! lol. Seriously though, I am very excited about the Moby. I wanted one with Ryder but just never got one. Brody has also really started to take his pacifier pretty well and it is so cute to watch him drift off to sleep with it.
Brody still hasn't taken his milk from a bottle except for just a few times and it was only a few milliliters each time. On Thursday he had an upper GI test just kind of routinely to see if anything was going on. I didn't get to go with Brody to get the test done because I was learning how to use the home apnea monitor and feeding pump that was delivered to the hospital for us to take home but I'm kind of glad I didn't get to see it. The nurse said Brody did very well with it but when Ryder was about a year old he had an upper GI done and it was traumatizing to say the least. Ryder wouldn't drink the barium from a sippy cup so they literally squirted it down his throat with a bulb syringe and then he vomited for several hours afterwards and was very lethargic. Not pretty. Anyways, Brody's upper GI showed that he might have Pyloric Stenosis and then Friday they did an ultrasound that confirm it. Pyloric Stenosis is where the Pylorus (muscle in the stomach) is too large and doesn't allow food in the stomach to pass into the intestines. This explains why he's had such mucussy spit ups even though he's doesn't have food in his stomach, and when he does, he vomits. The nurse practitioner said she was going to contact the surgeon and schedule surgery. Later that day, someone from surgery (a resident, I think) came to talk to me and said they were going to hold off on surgery because it could just be irritation from the TP tube in which case it would resolve on it's own. This kind of frustrated me. No, I don't WANT Brody to have to have surgery again but to me it sounded like the right thing and this way we'd go ahead and fix the problem and maybe we could really get him on a bottle. The doctors and nurses talked and decided to wait a few days and do another ultrasound to see if it's getting better or worse. The follow up ultrasound from this morning (5/8) showed the pylorus was significantly larger than on Thursday and confirmed that it's definitely pyloric stenosis. Surgery is scheduled for tomorrow (5/9)afternoon. The surgeon will go in and cut the muscle fibers allowing it to open up. The surgeon is going to try to keep the TP tube in place but if it comes out Brody will have to go about a week without feeds (just IV nutrition) to let it heal. I'm praying that doesn't happen. We just started to get on a nice upward trend with his weight and I would hate to see those numbers slide backwards.
The nephrologist has been so pleased with his lab work and thinks that he will actually be able to go several more weeks without dialysis, so she decided we need to take out the dialysis catheter! They will remove it while he is in surgery tomorrow. Dr. Jernigan said it is too risky to keep the catheter in and not use it. This is amazing and scary all at the same time. I'm truly amazed that he has gone 2 whole weeks without needing dialysis and probably going to go several more weeks without it. I'm scared that I'm going to wake up one day and BAM! back to 16 hours of dialysis with a puffy little baby that's having difficulty breathing. I'm scared they're going to take out the catheter and just a few days later decide to put it back in. I'm trying not to think about any of that though... Just thankful his kidney is working as well as it is...Brody truly is a little miracle.
...There is so much more I want to write about...I've been sitting here staring at my computer for over an hour trying to figure out what else to write. But I'm tired. I almost fell asleep driving in bumper-to-bumper traffic on I-285 during a thunderstorm today. (shh...don't tell my mom!) So I think I'll save those thoughts for another post and go to bed now. But first, here's the weekly run down:
Monday (4/30):
-Weight: 2.95kg
-No PD. BUN still ok and Creatinine starting to stabilize...it is the same as yesterday.
-Potassium is high. Dr. Warshaw ordered K to be checked venously and not by heel pricks anymore (for more accuracy). Kayexalate ordered to lower potassium. At 4pm they rechecked K and it was fine. No need for Kayexalate yet.
-MCT oil increased to 3ml.
-Took 12ml of milk by bottle and then spit up almost immediately afterwards.
Tuesday (5/1):
-Weight: 2.97kg
-Labs good. BUN & Creatinine up slightly.
-Withholding Beneprotein b/c it has K in it.
-Took 6ml of milk from bottle.
-Spoke to discharging caseworker about starting to get things together to go home!
Wednesday (5/2):
-Weight: 3.005kg.
-Sodium low, Potassium high. EBM & formula to be decanted with Kayexalate. Creatinine the same, BUN good.
-GI doctor came on board to try to figure out what's going on with feeding.
-CVL Picc line removed (permanent cuff under skin).
-Blood is acidic. Given Bicitra as a buffer.
Thursday (5/3):
-Weight: 3.06kg
-Ordered hearing screen.
-Upper GI test at 1:30pm
-Potassium good (went from 6.1 to 4.8) after decanting milk.
-Creatinine the same, BUN up slightly. Still anemic. Dr. Warshaw increased EPO dose.
-Learned how to use home apnea monitor and food pump.
Friday (5/4):
-Weight: 3.05kg
-Upper GI test showed Brody might have Pyloric Stenosis. Confirmed by Ultrasound. Spoke to surgeon, will not do surgery right now. Re-check on Tuesday.
-Gave Brody a bath for the first time (our first time, not his).
-Learned how to place a NG tube
-Watched PURPLE Crying video
Saturday (5/5):
-Weight: 3.13kg
-Phosphorus is high. Adding Calcium Carbonate to milk to bind to phosphorus and keep him from absorbing it.
-Potassium normal at 4.3 (still decanting milk)
-Learned how to fortify and decant milk.
Sunday (5/6):
-8 weeks old today!
-Weight: 3.21kg (7 lbs, 2 oz)
-No labs today (to be ordered every other day from now on instead of every day)
Monday (5/7):
-Weight: 3.27kg
-Potassium normal. Phosphorus normal. Sodium low.
-Creatinine same as Saturday and BUN down a little (great news!)
-I gave Brody his EPO shot, canola oil (switched to this from MCT oil), and clipped his nails for the first time.
-Dr. Jernigan is really impressed with his labs and wants to take out PD catheter.
-Klonopin weaned to just once/day.
-Fussy at night.
Tuesday (5/8):
-Weight: 3.3kg
-No labs today
-Ultrasound showed Pylorus is significantly larger than last Thursday Scheduled surgery for tomorrow. Surgeon will also remove PD catheter.
-Off feeds and back on IV nutrition.
-Increased Klonopin back to twice/day but very small dose.
-Medications for home were delivered to NICU and checked by pharmacy.
-Spoke to nutritionist about going home.
 |
| 5-6-12 cuddles with Mommy |
Brody still hasn't taken his milk from a bottle except for just a few times and it was only a few milliliters each time. On Thursday he had an upper GI test just kind of routinely to see if anything was going on. I didn't get to go with Brody to get the test done because I was learning how to use the home apnea monitor and feeding pump that was delivered to the hospital for us to take home but I'm kind of glad I didn't get to see it. The nurse said Brody did very well with it but when Ryder was about a year old he had an upper GI done and it was traumatizing to say the least. Ryder wouldn't drink the barium from a sippy cup so they literally squirted it down his throat with a bulb syringe and then he vomited for several hours afterwards and was very lethargic. Not pretty. Anyways, Brody's upper GI showed that he might have Pyloric Stenosis and then Friday they did an ultrasound that confirm it. Pyloric Stenosis is where the Pylorus (muscle in the stomach) is too large and doesn't allow food in the stomach to pass into the intestines. This explains why he's had such mucussy spit ups even though he's doesn't have food in his stomach, and when he does, he vomits. The nurse practitioner said she was going to contact the surgeon and schedule surgery. Later that day, someone from surgery (a resident, I think) came to talk to me and said they were going to hold off on surgery because it could just be irritation from the TP tube in which case it would resolve on it's own. This kind of frustrated me. No, I don't WANT Brody to have to have surgery again but to me it sounded like the right thing and this way we'd go ahead and fix the problem and maybe we could really get him on a bottle. The doctors and nurses talked and decided to wait a few days and do another ultrasound to see if it's getting better or worse. The follow up ultrasound from this morning (5/8) showed the pylorus was significantly larger than on Thursday and confirmed that it's definitely pyloric stenosis. Surgery is scheduled for tomorrow (5/9)afternoon. The surgeon will go in and cut the muscle fibers allowing it to open up. The surgeon is going to try to keep the TP tube in place but if it comes out Brody will have to go about a week without feeds (just IV nutrition) to let it heal. I'm praying that doesn't happen. We just started to get on a nice upward trend with his weight and I would hate to see those numbers slide backwards.
 |
| 5-8-12 |
The nephrologist has been so pleased with his lab work and thinks that he will actually be able to go several more weeks without dialysis, so she decided we need to take out the dialysis catheter! They will remove it while he is in surgery tomorrow. Dr. Jernigan said it is too risky to keep the catheter in and not use it. This is amazing and scary all at the same time. I'm truly amazed that he has gone 2 whole weeks without needing dialysis and probably going to go several more weeks without it. I'm scared that I'm going to wake up one day and BAM! back to 16 hours of dialysis with a puffy little baby that's having difficulty breathing. I'm scared they're going to take out the catheter and just a few days later decide to put it back in. I'm trying not to think about any of that though... Just thankful his kidney is working as well as it is...Brody truly is a little miracle.
...There is so much more I want to write about...I've been sitting here staring at my computer for over an hour trying to figure out what else to write. But I'm tired. I almost fell asleep driving in bumper-to-bumper traffic on I-285 during a thunderstorm today. (shh...don't tell my mom!) So I think I'll save those thoughts for another post and go to bed now. But first, here's the weekly run down:
Monday (4/30):
-Weight: 2.95kg
-No PD. BUN still ok and Creatinine starting to stabilize...it is the same as yesterday.
-Potassium is high. Dr. Warshaw ordered K to be checked venously and not by heel pricks anymore (for more accuracy). Kayexalate ordered to lower potassium. At 4pm they rechecked K and it was fine. No need for Kayexalate yet.
-MCT oil increased to 3ml.
-Took 12ml of milk by bottle and then spit up almost immediately afterwards.
Tuesday (5/1):
-Weight: 2.97kg
-Labs good. BUN & Creatinine up slightly.
-Withholding Beneprotein b/c it has K in it.
-Took 6ml of milk from bottle.
-Spoke to discharging caseworker about starting to get things together to go home!
Wednesday (5/2):
-Weight: 3.005kg.
-Sodium low, Potassium high. EBM & formula to be decanted with Kayexalate. Creatinine the same, BUN good.
-GI doctor came on board to try to figure out what's going on with feeding.
-CVL Picc line removed (permanent cuff under skin).
-Blood is acidic. Given Bicitra as a buffer.
Thursday (5/3):
-Weight: 3.06kg
-Ordered hearing screen.
-Upper GI test at 1:30pm
-Potassium good (went from 6.1 to 4.8) after decanting milk.
-Creatinine the same, BUN up slightly. Still anemic. Dr. Warshaw increased EPO dose.
-Learned how to use home apnea monitor and food pump.
Friday (5/4):
-Weight: 3.05kg
-Upper GI test showed Brody might have Pyloric Stenosis. Confirmed by Ultrasound. Spoke to surgeon, will not do surgery right now. Re-check on Tuesday.
-Gave Brody a bath for the first time (our first time, not his).
-Learned how to place a NG tube
-Watched PURPLE Crying video
Saturday (5/5):
-Weight: 3.13kg
-Phosphorus is high. Adding Calcium Carbonate to milk to bind to phosphorus and keep him from absorbing it.
-Potassium normal at 4.3 (still decanting milk)
-Learned how to fortify and decant milk.
Sunday (5/6):
-8 weeks old today!
-Weight: 3.21kg (7 lbs, 2 oz)
-No labs today (to be ordered every other day from now on instead of every day)
Monday (5/7):
-Weight: 3.27kg
-Potassium normal. Phosphorus normal. Sodium low.
-Creatinine same as Saturday and BUN down a little (great news!)
-I gave Brody his EPO shot, canola oil (switched to this from MCT oil), and clipped his nails for the first time.
-Dr. Jernigan is really impressed with his labs and wants to take out PD catheter.
-Klonopin weaned to just once/day.
-Fussy at night.
Tuesday (5/8):
-Weight: 3.3kg
-No labs today
-Ultrasound showed Pylorus is significantly larger than last Thursday Scheduled surgery for tomorrow. Surgeon will also remove PD catheter.
-Off feeds and back on IV nutrition.
-Increased Klonopin back to twice/day but very small dose.
-Medications for home were delivered to NICU and checked by pharmacy.
-Spoke to nutritionist about going home.
Sunday, April 29, 2012
An amazing week!
Wow, a lot has happened in the past week!...Brody is 7 weeks old today and is now completely breathing on his own!! Hallelujah! They removed the oxygen cannula this morning and he is doing great. We were able to kiss his sweet cheek today for the very first time and I took tons of pictures as this is the most skin and least amount of tape I've ever seen on his face! ...Now if we could just get rid of that feeding tube! Today also marks day 6 without dialysis!! I would have posted about this on day 1 but I didn't want to jump the gun and get too excited before I knew how his body was going to react without the dialysis.
Last Tuesday, Dr. Warshaw decided that Brody's lab work looked so wonderful that he could probably take a break from the dialysis for a while. The pyelostomy was putting out a good bit of fluid and Dr. Warshaw was interested to see how fast his BUN and Creatinine levels would increase. Brody's kidney is extremely abnormal so he will have to go back on dialysis eventually but, best case scenario, Brody could go a couple months with out dialysis. ...Most likely just a few days to weeks. Since they stopped the dialysis, his BUN has increased about one point every day and his Creatinine has increased about a tenth of a point everyday. They are currently still within normal range but there is a definite upward trend. And the fact that he's not retaining fluid is wonderful. Dr. Warshaw explained that everyone's kidneys mature a little bit in the early months of life and now that Brody's kidney is constantly draining and not retaining urine it is less stressed and therefore doing better than it was. He made sure to tell us that it will never function normally. ...Like I haven't heard that a thousand times.
The physical therapist came by on Tuesday but the session seemed to stress Brody out so she kept it short and sweet. The PT explained to me that signs of stress for an infant can be hiccups, multiple sneezes, stretching out the arms or covering the face (Brody started hiccuping and spitting up when she was stretching his legs). She showed me things I could do with Brody to help him grow: tickle his feet one foot at a time (this will help him kick) and stroke the back of his neck while in the prone position (this will facilitate head control). She also helped me fill out a developmental plan:
At this point, our real concern is just trying to get Brody to gain weight. In order to go home he has to be big enough to be on the dialysis machine and to do that he has to be able to handle a fill volume of 100cc's. He has only gained 9 ounces since birth. At his current weight, the most he has been able to handle is 60cc's (he started at 40cc's). He's now getting 18ml/hr of fortified breast milk through his feeding tube. He is not too interested in a bottle. The first day he took a bottle, he did so well that the therapist put in orders to work with him only 3 days a week. Well, he's either been too sleepy (because of the meds), or just not interested at all so the therapist is now suppose to work with him 7 days a week. I say "suppose to" because I don't think she's come by everyday. I spoke to the Physician's Assistant about possibly weaning him off some of the meds so he's not too sleepy to eat so she cut the Klonopin dose in half although he's still really sleepy even with just 1/2 a dose. He really really needs to start gaining some weight...If only we could give him a cheeseburger! :)
He did have kind of a rough day on Thursday. Brody has reflux and has been spitting up (just mucus since he has a TP tube and milk is going directly into his intestines) and on Thursday his TP tube migrated out of his intestines and into his stomach. I was holding him and the nurse had just given him a dose of Sodium Chloride when he started to gag. I sat him up a little and he started vomiting. A lot. Thankfully the nurse was right there because this time it wasn't just mucus. Because he was now throwing up milk, we knew the TP tube was out of place. The nurse pulled the old tube out and put a new tube in...it took 3 tries before she got the new TP tube in the right spot (X-ray verified that it was where it was suppose to be). I was pretty impressed that even though he was SCREAMING his O2 saturation never got too low. ...By Friday morning the TP tube was out of place again. They stopped his feeds (which he really can't afford to go any significant amount of time without his feeds) and took him down to fluoroscopy to make sure it was in far enough. They also used a weighted tube to make sure it stays in place. He's still spitting up every now and then but instead of Xantac they are now giving him Prevacid. I think his reflux might be a side effect of the Klonopin they are giving him for stress. This all started the same day they started the Klonopin. I asked the nurse about it and she said it is possible but apparently he "really needs the Klonopin". I'm hoping and praying they take him off this medicine soon.
Even though the doctors cannot give us any indication as to when Brody will be able to come home, Adam and I went ahead and took the CPR class and car seat class which are required for discharge. The car seat class was actually very informative. Apparently 98% of people do not have their car seat installed correctly. We had to bring our car seat in and install it in front of the instructor which she said we did just right. She showed us pictures of how some people install their car seats and I was flabbergasted at the ridiculousness that I saw. Someone actually used an infant swing as a car seat and thought it was acceptable. I would have laughed but it was just too sad to think that a parent thought that was safe. Before Brody can go home he will have to pass a car seat test too. He'll have to be strapped into the car seat and monitored for an hour and a half to make sure his heart rate and breathing are ok. There are still a dozen things we have to learn and do before we can take Brody home (as well as, of course, Brody being physically able to go home) but we got a few things checked off the list.
Saturday (4/21):
-Weight: 3.08kg
-Labs good and PD the same (6 passes of 60cc's)
-Morphine discontinued and now on scheduled doses of Klonopin (3x/day) for anxiety (still on Ativan as needed)
-On clear IV fluids only, just to keep central line open.
-O2 still on 2 liters
-Adam gave him one 14ml bottle of EBM fortified with PM 60/40
Sunday (4/22):
-6 weeks old today
-Weight: 3.085
-Labs good and PD the same
-Didn't seem interested in the bottle. Tried paci dipped in milk to get used to taste.
-Dr. Batisky impressed with pyelostomy output.
Monday (4/23):
-Weight: 3.05kg
-Starting on Calcium supplement
-PD the same
-O2 weaned to 1.5 liters
-Feeds increased to 18ml/hr and adding beneprotein to EBM. (PM 60/40 with every feeding; PM 60/40 and beneprotein 2x/day)
-Electrolytes are slightly off so adjusting fluids
-No bottle today. Speech therapist came over to work with him but he was too fussy.
Tuesday (4/24):
-Weight: 3.12kg (6 lbs, 14 oz).
-Klonopin seems to be working-didn't need much Ativan.
-Started spitting up. Prevacid ordered
-Labs look good. No PD.
-Short PT session and developmental plan in place.
-Weaned to 1 liter.
-Wouldn't take bottle...Too sleepy to eat.
Wednesday (4/25):
-Weight 2.97kg
-Bumped back up to 2 liters (trouble breathing because of reflux) but then by mid-day down to 1.5 liters.
-Moved to a big boy bed and spent some time in the MamaRoo and liked it.
-Labs good and no PD. Creatinine up slightly but still within range. Hematocrit low (he's looking rather pale) but no need for a transfusion yet.
-Too sleepy to eat again. Klonopin dose to be cut in half. (took a little milk out of a bottle for the night nurse).
Thursday (4/26):
-Weight: 3.00kg
-Labs good, no PD
-Weaned to 1 liter cannula
-Given Sodium Chloride, threw it up, then given another dose.
-TP tube came out of place. Replaced TP tube.
Friday (4/27):
-Weight: 2.89kg
-At 2am still throwing up and extremely fussy. Abdominal Xray showed a lot of air in his belly. Replaced TP tube at 10am using fluoroscopy.
-Urology looked at Pyelostomy site. Its a little hard but they were able to flush it so it's not closed. Did ultrasound at 11am and everything looks fine.
-Resting comfortably when Adam and I were there.
-labs good, no PD.
Saturday (4/28):
-Weight: 2.88kg
-labs good (BUN & Creatinine are creeping up a little but still within range.) No PD again.
-Stopped Klonopin at night but was really fussy.
-Not interested in bottle whatsoever.
Sunday (4/29):
-7 weeks old today
-Weight: 2.92kg (6 lbs 7 oz)
-OFF OXYGEN!!
-Labs good (BUN & Creatinine still going up slowly). No PD.
-Back on Klonopin.
-Surgeon paged to come remove the PICC line but will do that tomorrow.
-Dr. Warshaw wants to increase his caloric intake so they are going to add more protein to the milk (this is along with the PM 60/40, Beneprotein, and MCT oil).
 |
| 4-29-12 |
Last Tuesday, Dr. Warshaw decided that Brody's lab work looked so wonderful that he could probably take a break from the dialysis for a while. The pyelostomy was putting out a good bit of fluid and Dr. Warshaw was interested to see how fast his BUN and Creatinine levels would increase. Brody's kidney is extremely abnormal so he will have to go back on dialysis eventually but, best case scenario, Brody could go a couple months with out dialysis. ...Most likely just a few days to weeks. Since they stopped the dialysis, his BUN has increased about one point every day and his Creatinine has increased about a tenth of a point everyday. They are currently still within normal range but there is a definite upward trend. And the fact that he's not retaining fluid is wonderful. Dr. Warshaw explained that everyone's kidneys mature a little bit in the early months of life and now that Brody's kidney is constantly draining and not retaining urine it is less stressed and therefore doing better than it was. He made sure to tell us that it will never function normally. ...Like I haven't heard that a thousand times.
The physical therapist came by on Tuesday but the session seemed to stress Brody out so she kept it short and sweet. The PT explained to me that signs of stress for an infant can be hiccups, multiple sneezes, stretching out the arms or covering the face (Brody started hiccuping and spitting up when she was stretching his legs). She showed me things I could do with Brody to help him grow: tickle his feet one foot at a time (this will help him kick) and stroke the back of his neck while in the prone position (this will facilitate head control). She also helped me fill out a developmental plan:
At this point, our real concern is just trying to get Brody to gain weight. In order to go home he has to be big enough to be on the dialysis machine and to do that he has to be able to handle a fill volume of 100cc's. He has only gained 9 ounces since birth. At his current weight, the most he has been able to handle is 60cc's (he started at 40cc's). He's now getting 18ml/hr of fortified breast milk through his feeding tube. He is not too interested in a bottle. The first day he took a bottle, he did so well that the therapist put in orders to work with him only 3 days a week. Well, he's either been too sleepy (because of the meds), or just not interested at all so the therapist is now suppose to work with him 7 days a week. I say "suppose to" because I don't think she's come by everyday. I spoke to the Physician's Assistant about possibly weaning him off some of the meds so he's not too sleepy to eat so she cut the Klonopin dose in half although he's still really sleepy even with just 1/2 a dose. He really really needs to start gaining some weight...If only we could give him a cheeseburger! :)
 |
| Good bye incubator! Moved to a big boy bed on 4-25-12 |
He did have kind of a rough day on Thursday. Brody has reflux and has been spitting up (just mucus since he has a TP tube and milk is going directly into his intestines) and on Thursday his TP tube migrated out of his intestines and into his stomach. I was holding him and the nurse had just given him a dose of Sodium Chloride when he started to gag. I sat him up a little and he started vomiting. A lot. Thankfully the nurse was right there because this time it wasn't just mucus. Because he was now throwing up milk, we knew the TP tube was out of place. The nurse pulled the old tube out and put a new tube in...it took 3 tries before she got the new TP tube in the right spot (X-ray verified that it was where it was suppose to be). I was pretty impressed that even though he was SCREAMING his O2 saturation never got too low. ...By Friday morning the TP tube was out of place again. They stopped his feeds (which he really can't afford to go any significant amount of time without his feeds) and took him down to fluoroscopy to make sure it was in far enough. They also used a weighted tube to make sure it stays in place. He's still spitting up every now and then but instead of Xantac they are now giving him Prevacid. I think his reflux might be a side effect of the Klonopin they are giving him for stress. This all started the same day they started the Klonopin. I asked the nurse about it and she said it is possible but apparently he "really needs the Klonopin". I'm hoping and praying they take him off this medicine soon.
 |
| Waiting on a new TP tube. Don't laugh at my double diaper! :) |
Even though the doctors cannot give us any indication as to when Brody will be able to come home, Adam and I went ahead and took the CPR class and car seat class which are required for discharge. The car seat class was actually very informative. Apparently 98% of people do not have their car seat installed correctly. We had to bring our car seat in and install it in front of the instructor which she said we did just right. She showed us pictures of how some people install their car seats and I was flabbergasted at the ridiculousness that I saw. Someone actually used an infant swing as a car seat and thought it was acceptable. I would have laughed but it was just too sad to think that a parent thought that was safe. Before Brody can go home he will have to pass a car seat test too. He'll have to be strapped into the car seat and monitored for an hour and a half to make sure his heart rate and breathing are ok. There are still a dozen things we have to learn and do before we can take Brody home (as well as, of course, Brody being physically able to go home) but we got a few things checked off the list.
 |
| 4-28-12 Loves his frog |
Saturday (4/21):
-Weight: 3.08kg
-Labs good and PD the same (6 passes of 60cc's)
-Morphine discontinued and now on scheduled doses of Klonopin (3x/day) for anxiety (still on Ativan as needed)
-On clear IV fluids only, just to keep central line open.
-O2 still on 2 liters
-Adam gave him one 14ml bottle of EBM fortified with PM 60/40
Sunday (4/22):
-6 weeks old today
-Weight: 3.085
-Labs good and PD the same
-Didn't seem interested in the bottle. Tried paci dipped in milk to get used to taste.
-Dr. Batisky impressed with pyelostomy output.
Monday (4/23):
-Weight: 3.05kg
-Starting on Calcium supplement
-PD the same
-O2 weaned to 1.5 liters
-Feeds increased to 18ml/hr and adding beneprotein to EBM. (PM 60/40 with every feeding; PM 60/40 and beneprotein 2x/day)
-Electrolytes are slightly off so adjusting fluids
-No bottle today. Speech therapist came over to work with him but he was too fussy.
Tuesday (4/24):
-Weight: 3.12kg (6 lbs, 14 oz).
-Klonopin seems to be working-didn't need much Ativan.
-Started spitting up. Prevacid ordered
-Labs look good. No PD.
-Short PT session and developmental plan in place.
-Weaned to 1 liter.
-Wouldn't take bottle...Too sleepy to eat.
Wednesday (4/25):
-Weight 2.97kg
-Bumped back up to 2 liters (trouble breathing because of reflux) but then by mid-day down to 1.5 liters.
-Moved to a big boy bed and spent some time in the MamaRoo and liked it.
-Labs good and no PD. Creatinine up slightly but still within range. Hematocrit low (he's looking rather pale) but no need for a transfusion yet.
-Too sleepy to eat again. Klonopin dose to be cut in half. (took a little milk out of a bottle for the night nurse).
Thursday (4/26):
-Weight: 3.00kg
-Labs good, no PD
-Weaned to 1 liter cannula
-Given Sodium Chloride, threw it up, then given another dose.
-TP tube came out of place. Replaced TP tube.
Friday (4/27):
-Weight: 2.89kg
-At 2am still throwing up and extremely fussy. Abdominal Xray showed a lot of air in his belly. Replaced TP tube at 10am using fluoroscopy.
-Urology looked at Pyelostomy site. Its a little hard but they were able to flush it so it's not closed. Did ultrasound at 11am and everything looks fine.
-Resting comfortably when Adam and I were there.
-labs good, no PD.
Saturday (4/28):
-Weight: 2.88kg
-labs good (BUN & Creatinine are creeping up a little but still within range.) No PD again.
-Stopped Klonopin at night but was really fussy.
-Not interested in bottle whatsoever.
Sunday (4/29):
-7 weeks old today
-Weight: 2.92kg (6 lbs 7 oz)
-OFF OXYGEN!!
-Labs good (BUN & Creatinine still going up slowly). No PD.
-Back on Klonopin.
-Surgeon paged to come remove the PICC line but will do that tomorrow.
-Dr. Warshaw wants to increase his caloric intake so they are going to add more protein to the milk (this is along with the PM 60/40, Beneprotein, and MCT oil).
Saturday, April 21, 2012
First taste of Milk
"Hey, guess what everybody?!? I don't have anymore tubes in my mouth!!"
Yep, last Thursday Brody self-extubated and was put on the high flow cannula (7 liters). He has since been weaned down to the low flow (2 liters) and today they took his repogle tube out (tube that vents air out of his stomach). This is a huge step because he can now take a bottle! Brody had his first bottle this morning (4/20) at about 10:45am. The Speech Therapist came over to evaluate him...she checked out his mouth and tongue. Then she put a drop of breast milk on the tip of a pacifier and handed it to me to give to Brody to see if he could suck and let him taste the milk. He went to town. So then we tried a bottle (he still can't actually nurse because he still has the cannula in his nose and it would just be too uncomfortable). He drank 14ml like a champ and then went into a milk coma for about 5 mins. The Speech Therapist called Brody a rock star and said he made her job way too easy today. ...He sure did make me happy. She put in an order to give him two 16ml bottles/day and continue on the trans pyloric tube feeds as well (16ml/hr). Tonight, Adam tried to give him his second bottle but he was slap wore out. He might have drank a couple ml's but a lot dribble down his chin. He was just too tired. They are still fortifying the milk for 26 cal/oz and when cleared by the MD we can try breast feeding. Until then, they want us to practice kangaroo care. I'm excited and nervous and several other emotions that I can't even explain.
Brody's lab work has looked great all week. His PD solution has been changed as to not draw off so much fluid because a lot has been coming out of the pyelostomy site (which is great), the number of passes has been decreased (which I know is more comfortable for Brody), and the fill volume has increased by 10cc's (which is a step closer to going home!).
Today his nurse made the comment that he has really turned a corner and has just drastically improved in the last few days. It's so amazing to watch as he's starting to do things that I remember Ryder doing as a newborn. I think it helps that he's not being pumped full of sedatives too. Yesterday was his due date and all this just goes to show how important every single day in the womb actually is. He has lost a lot of the fluid that he retained last week and looks just beautiful. And now that there is a little less tape on his face I am starting to notice a little resemblance to his big brother. Brody amazes me more and more every day and I am so thankful for each and every prayer sent up for him (and us as well), he is a true testimony to God and I know I've said it before but I CANNOT WAIT to show him off to the world!
Here is what the past week has looked like for us:
Saturday (4/14):
-weight: 3.01kg
-5 liter cannula but bumped up to 7 after getting upset
-lab work good but sodium a little high
-content resting on belly and sucked on pacifier a little bit. Adam and I both held him.
-Morphine and Ativan given as needed
-12 passes of PD
Sunday (4/15):
-weight: 3.08kg
-lab work looks excellent and nephrologist is very impressed. He decreased PD to 10 passes
-Brody is still showing the nurses who's boss and pulled repogle tube out twice.
Monday (4/16):
-weight: 3.06kg
-weaned down to 6 liters cannula
-up to 24 cal/oz EBM
-10 passes of PD
-respiratory rate, oxygen saturation, heart rate, blood pressure, and lab work all look great
Tuesday (4/17):
-weight: 3.04kg (weight loss could just be fluid shift)
-increased EBM fortifier to 26 cal/oz
-O2 decreased to 5 liters
-standard thyroid tests normal
-chest X-ray looks good and lungs sound clear
-PD decreased to 8 passes and fill volume increased to 60cc's
-during night shift, nurse notices Brody had pulled the oxygen cannula out of his nose. His O2 saturation never dipped ;)
Wednesday (4/18):
-weight 3.04kg
-oxygen cannula decreased to 4 liters and by night shift was weaned even more to 3 liters
-PD decreased to 6 passes
Thursday (4/19)...due date:
-weight 2.93kg (6 lbs 7 oz)
-doing really well on 3 liters
-feeds are the same
-Albumin is perfect and all other lab work looks great. Potassium has been taken out of IV fluids.
-PD solution changed from 2.5 to 1.25 (still at 6 passes of 60cc's)
-night nurse said there's a possible occlusion in picc line
Friday (4/20):
-weight: 2.95kg
-PD the same and all labs good
-nurse had no problem with picc line (could have been a problem with postioning)
-weaned down to the 2 liter cannula and breathing beautifully
-repogle removed and began bottle feeding
-wearing a tee shirt for the first time :)
Yep, last Thursday Brody self-extubated and was put on the high flow cannula (7 liters). He has since been weaned down to the low flow (2 liters) and today they took his repogle tube out (tube that vents air out of his stomach). This is a huge step because he can now take a bottle! Brody had his first bottle this morning (4/20) at about 10:45am. The Speech Therapist came over to evaluate him...she checked out his mouth and tongue. Then she put a drop of breast milk on the tip of a pacifier and handed it to me to give to Brody to see if he could suck and let him taste the milk. He went to town. So then we tried a bottle (he still can't actually nurse because he still has the cannula in his nose and it would just be too uncomfortable). He drank 14ml like a champ and then went into a milk coma for about 5 mins. The Speech Therapist called Brody a rock star and said he made her job way too easy today. ...He sure did make me happy. She put in an order to give him two 16ml bottles/day and continue on the trans pyloric tube feeds as well (16ml/hr). Tonight, Adam tried to give him his second bottle but he was slap wore out. He might have drank a couple ml's but a lot dribble down his chin. He was just too tired. They are still fortifying the milk for 26 cal/oz and when cleared by the MD we can try breast feeding. Until then, they want us to practice kangaroo care. I'm excited and nervous and several other emotions that I can't even explain.
Brody's lab work has looked great all week. His PD solution has been changed as to not draw off so much fluid because a lot has been coming out of the pyelostomy site (which is great), the number of passes has been decreased (which I know is more comfortable for Brody), and the fill volume has increased by 10cc's (which is a step closer to going home!).
Today his nurse made the comment that he has really turned a corner and has just drastically improved in the last few days. It's so amazing to watch as he's starting to do things that I remember Ryder doing as a newborn. I think it helps that he's not being pumped full of sedatives too. Yesterday was his due date and all this just goes to show how important every single day in the womb actually is. He has lost a lot of the fluid that he retained last week and looks just beautiful. And now that there is a little less tape on his face I am starting to notice a little resemblance to his big brother. Brody amazes me more and more every day and I am so thankful for each and every prayer sent up for him (and us as well), he is a true testimony to God and I know I've said it before but I CANNOT WAIT to show him off to the world!
Here is what the past week has looked like for us:
Saturday (4/14):
-weight: 3.01kg
-5 liter cannula but bumped up to 7 after getting upset
-lab work good but sodium a little high
-content resting on belly and sucked on pacifier a little bit. Adam and I both held him.
-Morphine and Ativan given as needed
-12 passes of PD
Sunday (4/15):
-weight: 3.08kg
-lab work looks excellent and nephrologist is very impressed. He decreased PD to 10 passes
-Brody is still showing the nurses who's boss and pulled repogle tube out twice.
Monday (4/16):
-weight: 3.06kg
-weaned down to 6 liters cannula
-up to 24 cal/oz EBM
-10 passes of PD
-respiratory rate, oxygen saturation, heart rate, blood pressure, and lab work all look great
Tuesday (4/17):
-weight: 3.04kg (weight loss could just be fluid shift)
-increased EBM fortifier to 26 cal/oz
-O2 decreased to 5 liters
-standard thyroid tests normal
-chest X-ray looks good and lungs sound clear
-PD decreased to 8 passes and fill volume increased to 60cc's
-during night shift, nurse notices Brody had pulled the oxygen cannula out of his nose. His O2 saturation never dipped ;)
Wednesday (4/18):
-weight 3.04kg
-oxygen cannula decreased to 4 liters and by night shift was weaned even more to 3 liters
-PD decreased to 6 passes
Thursday (4/19)...due date:
-weight 2.93kg (6 lbs 7 oz)
-doing really well on 3 liters
-feeds are the same
-Albumin is perfect and all other lab work looks great. Potassium has been taken out of IV fluids.
-PD solution changed from 2.5 to 1.25 (still at 6 passes of 60cc's)
-night nurse said there's a possible occlusion in picc line
Friday (4/20):
-weight: 2.95kg
-PD the same and all labs good
-nurse had no problem with picc line (could have been a problem with postioning)
-weaned down to the 2 liter cannula and breathing beautifully
-repogle removed and began bottle feeding
-wearing a tee shirt for the first time :)
Friday, April 13, 2012
Self Extubation
Well, it hasn't been that long since my last post but I feel like I have SO much to write about!
The Tuesday after Brody's surgery (4/10), was pretty much a rest and recover day. His sodium was normalizing and they began feeding him again at 4ml/hr and increased after 6 hours. He's getting more protein and no dialysis was ordered for the day so his surgery site could heal. ...His weight was deferred.
Brody has a rather large team taking care of him. Among the many, many nurses there are respiratory therapists, neonatologists, nephrologists, urologists, child life specialists, occupational therapists, physical therapists, and even speech therapists that are all members of his developmental team. I'd even say the social worker and lactation consultant are members too because whenever they come talk to me to see how I am, they usually end up talking about how "we" are doing. On Tuesday, the OT and PT were just finishing up a session when I walked in. Brody was tolerating it very well...I'm sure it felt good to be stretched and gently massaged after all he's been through. They helped me understand how Brody is adapting to his environment and how I can help him through positive touch. They explained that I am the one constant person in his care and he is learning that through my voice, scent, and touch. They showed me how containment (swaddling, and gentle pressure at his head and feet) helps him feel secure and safe and once I'm able to hold him we can practice kangaroo care (skin to skin contact). I also learned that a speech therapist will help Brody once he gets all these tubes out of his mouth...he will most likely have a bad gag reflex and won't have too much of a sucking instinct. I'm interested to see how they work with him on this.
Wednesday (4/11) marked 1 month since birth. He was pretty puffy and his weight had gotten up to 3.47kg (that's 7.65 lbs...nearly 2 pounds gained in 1 week) ...a LOT of water weight. His feeds were back up to the maximum 16ml/hr and the nephrologist ordered 8 passes of dialysis with hopes of taking off a lot of fluid but without overdoing it so soon after surgery.
Thursday (4/12), Uncle Jason came by for a visit and the nurse noticed Brody had a splotchy rash mainly on his left side. The nurse practitioner said it's most likely Erythema Toxicum Neonatorum...a common, unexplainable newborn rash that shouldn't cause much concern and will most likely go away in 5-7 days. She said they would watch it closely because if it got worse, if he developed sores, or got a fever then it could indicate an infection or virus. ...thanks to the dialysis his weight was down a little (3.26kg) and a fortifier (Similac PM 60/40) is now being added to his breastmilk for an additional 22 cal/ounce. The nurse also spoke to me about possibly taking Brody off the ventilator in the next few days. He would need to be at the lowest possible settings for several days before they could extubate him. Shortly before I left, I noticed that the adhesive tab that was holding the NeoBar in place had come unstuck (the NeoBar fixates the breathing tube). I tried pressing on it but it wouldn't re-stick so I told one of the nursing students and she casually walked over and told Brody's nurse. Brody's nurse casually walked over and told the respiratory therapist. The respiratory therapist then RUSHED over, asked me to hold the bar in place, thanked me for noticing and said "Thank God you were here!". Then asked me to assist him while he put a new NeoBar in place.
Later that night, Adam called to check up on Brody like he does every night. We were both shocked when his nurse told us he had extubated himself. WHAT?!? Apparently the new NeoBar came loose (he was probably pulling on it) and the tube slipped out just enough that they didn't feel comfortable blindly shoving it back down his throat so they just took it out. ...well, that's one way to show them who's boss! I think Brody was just fed up and didn't want to deal with another several days of that tube. The nurse did say that it looked like he was working a little hard to breathe. I just hope and pray that they do not have to reintubate him.
A chest x-ray was ordered for Friday morning (4/13) and showed that his left lung was a little hazy but his blood gas was excellent. They now have Brody on the high flow cannula (at 7 liters and weaned down to 5 liters by the time we talked to the night nurse). His respiratory rate was a little high but that is to be expected since he wasn't really weaned from the vent. He will be watched closely and the nurse said the next 48 hours will really indicate whether or not they can leave him off the ventilator. Hopefully he improves drastically within the next day or two. ...Another upside to being off the vent? I got to hold Brody and hear his sweet cry! He was awake and alert nearly the entire time I was there today. And for good reason...they cannot give him heavy sedation meds since he does not have the assistance of the ventilator. Because he was on highly addictive narcotics for the past 4 1/2 weeks he is now going to get methadone to prevent withdrawals. His rash is gone and since it only lasted a day it was most likely an irritation to something that he came in contact with. They're still giving him sodium citrate and sodium chloride along with the MCT oil and fortifier in his milk... his weight was down to 3.02kg (6.6 lbs). And hopefully they'll get off more fluid with the 12 passes of PD that they will do through the night.
I came across this Bible verse while reading about another NICU family: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." -Philippians 4:6. We are so thankful for both our boys and for all the progress Brody is making. It's hard not to be anxious about the days ahead for every day brings changes and new challenges and so I ask you to please continue to pray for Brody-that his lungs get stronger and stronger every day...that he remains free of infection...that he can come home soon so we can be the family of 4 that we're suppose to be.
.JPG)
The Tuesday after Brody's surgery (4/10), was pretty much a rest and recover day. His sodium was normalizing and they began feeding him again at 4ml/hr and increased after 6 hours. He's getting more protein and no dialysis was ordered for the day so his surgery site could heal. ...His weight was deferred.
.JPG) |
| puffy little face |
Brody has a rather large team taking care of him. Among the many, many nurses there are respiratory therapists, neonatologists, nephrologists, urologists, child life specialists, occupational therapists, physical therapists, and even speech therapists that are all members of his developmental team. I'd even say the social worker and lactation consultant are members too because whenever they come talk to me to see how I am, they usually end up talking about how "we" are doing. On Tuesday, the OT and PT were just finishing up a session when I walked in. Brody was tolerating it very well...I'm sure it felt good to be stretched and gently massaged after all he's been through. They helped me understand how Brody is adapting to his environment and how I can help him through positive touch. They explained that I am the one constant person in his care and he is learning that through my voice, scent, and touch. They showed me how containment (swaddling, and gentle pressure at his head and feet) helps him feel secure and safe and once I'm able to hold him we can practice kangaroo care (skin to skin contact). I also learned that a speech therapist will help Brody once he gets all these tubes out of his mouth...he will most likely have a bad gag reflex and won't have too much of a sucking instinct. I'm interested to see how they work with him on this.
Wednesday (4/11) marked 1 month since birth. He was pretty puffy and his weight had gotten up to 3.47kg (that's 7.65 lbs...nearly 2 pounds gained in 1 week) ...a LOT of water weight. His feeds were back up to the maximum 16ml/hr and the nephrologist ordered 8 passes of dialysis with hopes of taking off a lot of fluid but without overdoing it so soon after surgery.
Thursday (4/12), Uncle Jason came by for a visit and the nurse noticed Brody had a splotchy rash mainly on his left side. The nurse practitioner said it's most likely Erythema Toxicum Neonatorum...a common, unexplainable newborn rash that shouldn't cause much concern and will most likely go away in 5-7 days. She said they would watch it closely because if it got worse, if he developed sores, or got a fever then it could indicate an infection or virus. ...thanks to the dialysis his weight was down a little (3.26kg) and a fortifier (Similac PM 60/40) is now being added to his breastmilk for an additional 22 cal/ounce. The nurse also spoke to me about possibly taking Brody off the ventilator in the next few days. He would need to be at the lowest possible settings for several days before they could extubate him. Shortly before I left, I noticed that the adhesive tab that was holding the NeoBar in place had come unstuck (the NeoBar fixates the breathing tube). I tried pressing on it but it wouldn't re-stick so I told one of the nursing students and she casually walked over and told Brody's nurse. Brody's nurse casually walked over and told the respiratory therapist. The respiratory therapist then RUSHED over, asked me to hold the bar in place, thanked me for noticing and said "Thank God you were here!". Then asked me to assist him while he put a new NeoBar in place.
Later that night, Adam called to check up on Brody like he does every night. We were both shocked when his nurse told us he had extubated himself. WHAT?!? Apparently the new NeoBar came loose (he was probably pulling on it) and the tube slipped out just enough that they didn't feel comfortable blindly shoving it back down his throat so they just took it out. ...well, that's one way to show them who's boss! I think Brody was just fed up and didn't want to deal with another several days of that tube. The nurse did say that it looked like he was working a little hard to breathe. I just hope and pray that they do not have to reintubate him.
A chest x-ray was ordered for Friday morning (4/13) and showed that his left lung was a little hazy but his blood gas was excellent. They now have Brody on the high flow cannula (at 7 liters and weaned down to 5 liters by the time we talked to the night nurse). His respiratory rate was a little high but that is to be expected since he wasn't really weaned from the vent. He will be watched closely and the nurse said the next 48 hours will really indicate whether or not they can leave him off the ventilator. Hopefully he improves drastically within the next day or two. ...Another upside to being off the vent? I got to hold Brody and hear his sweet cry! He was awake and alert nearly the entire time I was there today. And for good reason...they cannot give him heavy sedation meds since he does not have the assistance of the ventilator. Because he was on highly addictive narcotics for the past 4 1/2 weeks he is now going to get methadone to prevent withdrawals. His rash is gone and since it only lasted a day it was most likely an irritation to something that he came in contact with. They're still giving him sodium citrate and sodium chloride along with the MCT oil and fortifier in his milk... his weight was down to 3.02kg (6.6 lbs). And hopefully they'll get off more fluid with the 12 passes of PD that they will do through the night.
I came across this Bible verse while reading about another NICU family: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." -Philippians 4:6. We are so thankful for both our boys and for all the progress Brody is making. It's hard not to be anxious about the days ahead for every day brings changes and new challenges and so I ask you to please continue to pray for Brody-that his lungs get stronger and stronger every day...that he remains free of infection...that he can come home soon so we can be the family of 4 that we're suppose to be.
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