One of the scariest parts of having a child with kidney disease is fevers. They scare the crap out of me. With Lincoln, the first few fevers were really terrifying, but once I figured out that fevers are not so bad as long as he is drinking and playing, I wasn't so scared. But with Jett, fevers send me into hysterics. Although Jett's kidneys are functioning as well as they possibly could be right now, there really is no indication when they will take a turn for the worse. A fever will be our only indicator. So, with every fever, every raised temperature, I break into hysterics. Is this one the one? Are his kidneys still functioning? Will this be the last time I snuggle my baby?
I think Chris thinks I am being a bit extreme in my thinking and I know that I can overdo it at times, but really, what thoughts would run through your head? Any time, EVERY time that Jett runs a fever, we have to follow the same protocol. We have to have his urine and blood tested. Simple enough, right? We were given urine bags and alcohol wipes for a clean catch so we always have his urine ready when we get to the doctor's office. However, getting his blood drawn is another matter. Only certain labs will accept babies as patients and none of those labs are open outside of weekday hours. And our babies always get sick on weekends. Always. The only solution is to take Jett in to the emergency room.
Take this weekend. Friday night (around 7:00 p.m.), Jett is running a fever of 102.7. We remember the last awful night trip to the ER for a blood draw and decide to give him a good night's rest before calling it in. Chris and a friend give him a priesthood blessing, we pumped him full of milk and let him sleep for the night. At 11:30 a.m. on Saturday, his fever was still 102.8, so we call our pediatrician's office and the renal fellow on call at Children's Hospital. The nurse practitioner on call insists that we only need a urine sample and not a blood draw (even though I assured her we would) and sets up an appointment for us at 4:30 p.m.
After waiting with my toasty hot son for 5 hours, she checks him over and tests his urine sample that we collected just prior to coming in. All clean. She sends us over to the hospital for lab work. They closed at 3 p.m. so we have to take Jett to the ER anyway. I knew this would happen when she won't see us earlier. I was so fuming mad, that Chris agreed to take Jett in while I stayed at home with Lincoln.
Here it is, 2:00 a.m. and I am still waiting up for Chris to bring my baby home. He arrived right before 7 p.m. and was shuffled in right away. However, no one can ever seem to get an IV into him so they always have to call the IV team. Tonight it took 4 hours for them to come down. In the end, all was clear.
I am so frustrated with our health care system and its inefficiencies, but I am grateful that everything came back negative. For now, we are just trying to enjoy the extra cuddles that Jett has been giving us. It has been kind of a nice break from his usual busy self.
As far as his regular appointments go, we see our nephrologist in November. We are hoping to possibly get rid of or lower his iron dose. That is nasty stuff that smells bad and stains everything. But really, it could be worse, so we aren't complaining too much. And then we see our urologist for more intense testing (ultrasound, VCUG, etc) in December. That will be the trip we find out more about Jett's upcoming surgery. We are hoping to schedule it for mid-January so that my sister can come help with Lincoln. If it is surgery to correct his reflux, he will probably be in the hospital for 4 or 5 days. If it is just the second part of his teste descent, then it will be an outpatient procedure. We will know more in December which surgery it will be and whether or not our surgeon thinks we can combine them.
Other than this recent fever bout, Jett is generally a healthy and happy little guy. He loves standing up and cruising around in his walker. He loves Lincoln and being a part of everything that he does. We have been so blessed and so happy to have him in our family this past year.
Sunday, October 19, 2014
Sunday, May 18, 2014
Surgery #2
To clear some things up, I wanted to address a question that we get a lot. A lot of very well meaning friends and family have asked us things like, "The surgery went well, so Jett's all better now?" or "After these surgeries, everything will be over, right?" The answer to that is no. Jett has a chronic disease. He has renal disease (failure). He has 7 identified diagnoses, some treatable, some not. He has duplex kidneys (on both sides) and he has hydronephrosis, among other things. Jett has both anatomical problems and functioning problems. The anatomical problems can be corrected with surgery. However, the function of his kidneys will probably never improve. Like diabetes, his renal disease will last a lifetime. It may not always be visible and may be regulated with medicine, but over time, the disease will show it's face. How badly it will impact his life and when he needs a kidney transplant (because mostly like he will need it) is the great unknown.
Right now, urology is working on the anatomical problems--such as the last surgery to incise his ureterocele (a physical obstruction) in his bladder. Our urologist is a surgeon. When it is time, he will go in and surgically correct Jett's reflux and when/if needed, perform the kidney transplant. Our nephrologist is a highly trained doctor who collects blood samples to analyze how well the kidneys are functioning. They look at bi-carbs, creatinine, vitamin D, sodium/potassium levels, red and white blood cell count, and about 40 other things that the kidneys are responsible for. They also monitor his blood pressure which has been borderline high since birth.
In the past few weeks, we have been in to see both doctors. From the nephrology standpoint, Jett is doing great. They said that looking at his imaging, it is a miracle that his kidneys are performing as well as they are right now. He is borderline in a lot of different areas, but nothing to be too concerned about. He is being supplemented with both Vitamin D and iron (which is nasty), but a lot of regularly functioning kids are, too. While he has diminished kidney function, he is doing well for the time being. Our next appointment is in July.
From the urology (think anatomical standpoint), Jett is ready for his next surgery. On top of everything else that is going on in his body, one of his testicles didn't descend. I won't go into a lot of detail because out of everything, I still kind of feel like I might be embarrassing him, even though he is still a baby. The doctor gave him 6 months to let it drop on its own, but now he has to go in to help him. It is a two surgery process. The first surgery will be June 12 and the next will be 6-9 months following that.
From my standpoint, I don't care if he has one or two testicles, but there are a couple of risks of not finding it and helping it down: 1) Decreased fertility and 2) Testicular cancer. Better to find it now.
The surgery will involve 3 little incisions and take 45 min to 1 1/2 hours. After Jett spends a few hours in recovery, he will be able to go home with us that day, so it will be an outpatient procedure.
I am really not excited about another surgery, but I am a little more comfortable going into this one, having done one before. And I am really glad that Jett will be coming home with us right away. Now that he is a little older, there is a lot less risk with the anesthesia. And I have total confidence in our urologist. He was trained to help babies like Jett.
Right now, urology is working on the anatomical problems--such as the last surgery to incise his ureterocele (a physical obstruction) in his bladder. Our urologist is a surgeon. When it is time, he will go in and surgically correct Jett's reflux and when/if needed, perform the kidney transplant. Our nephrologist is a highly trained doctor who collects blood samples to analyze how well the kidneys are functioning. They look at bi-carbs, creatinine, vitamin D, sodium/potassium levels, red and white blood cell count, and about 40 other things that the kidneys are responsible for. They also monitor his blood pressure which has been borderline high since birth.
In the past few weeks, we have been in to see both doctors. From the nephrology standpoint, Jett is doing great. They said that looking at his imaging, it is a miracle that his kidneys are performing as well as they are right now. He is borderline in a lot of different areas, but nothing to be too concerned about. He is being supplemented with both Vitamin D and iron (which is nasty), but a lot of regularly functioning kids are, too. While he has diminished kidney function, he is doing well for the time being. Our next appointment is in July.
From the urology (think anatomical standpoint), Jett is ready for his next surgery. On top of everything else that is going on in his body, one of his testicles didn't descend. I won't go into a lot of detail because out of everything, I still kind of feel like I might be embarrassing him, even though he is still a baby. The doctor gave him 6 months to let it drop on its own, but now he has to go in to help him. It is a two surgery process. The first surgery will be June 12 and the next will be 6-9 months following that.
From my standpoint, I don't care if he has one or two testicles, but there are a couple of risks of not finding it and helping it down: 1) Decreased fertility and 2) Testicular cancer. Better to find it now.
The surgery will involve 3 little incisions and take 45 min to 1 1/2 hours. After Jett spends a few hours in recovery, he will be able to go home with us that day, so it will be an outpatient procedure.
I am really not excited about another surgery, but I am a little more comfortable going into this one, having done one before. And I am really glad that Jett will be coming home with us right away. Now that he is a little older, there is a lot less risk with the anesthesia. And I have total confidence in our urologist. He was trained to help babies like Jett.
Monday, February 24, 2014
Jett's First Surgery
On Wednesday, January 22, Jett underwent his first surgery. He was 2
months and 3 days old. The whole week before, Lincoln was really sick.
He came down with a nasty cold and high-ish fever (he peaked at
102.6). Luckily, the bulk of his illness happened over the weekend, so
Chris and I were able to quarantine Jett fairly well.
The morning of the surgery, our dear friend came over to watch Lincoln and take him back to her place for the day (he wasn't awake when we left). We checked in with Surgery Registration and got Jett ready for the surgery. He had to wear a tiny little hospital gown, and they gave him long yellow hospital socks. It was all very cute. I only had the poor camera on my phone, so here is a semblance of what he looked like.
So, in order to undergo anaesthesia, you have to have an empty stomach.
For babies, they can't nurse for 4 hours from the time of surgery.
Which means, I woke Jett up at 4:30 a.m. to feed him. I was worried
that he would wake up at 6:30 a.m., which is typical for him, and want
food. Luckily, he literally slept the entire time before surgery (even
during the changing of his clothes).
Anyway, we talked to nurses, residents, doctors, anaesthesiologists, etc for about an hour before the anaesthesiologist came back. I was cuddling with my sweet boy and she had me just hand him over. That was the hardest part--handing my sweet little son to a complete stranger and watching her walk away with him. It was the only time I cried.
Chris and I joined the other parents in the waiting area and we laughed for a long time. I think we both deal with stress by trying to diffuse the tension. It was probably completely inappropriate.
About 5 minutes after I drifted off to sleep, Chris woke me up. It was 10 a.m. and the doctor came to talk to us. He said that they had a hard time getting an IV in, so the procedure didn't even start until 9:25. Then it was quick and easy. He was able to give us a plan to move forward, too, which may have been the best part of the day. Finally, FINALLY, we have some sort of plan. Along with his kidney/bladder issues, one of Jett's testes hasn't descended (poor guy, huh?). Well if it hasn't descended in the next few months, he will have to get surgery on that. We're looking at 2 surgeries to help his teste descend as well as another one to help control the reflux occurring into his kidneys. If the timing works, Dr. Lee may be able to combine one of the teste surgeries with the reflux correction. Each should be spaced about 6-9 months apart.
From there, we were taken to the recovery room to meet up with our sweet boy. From down the hall, we could hear him screaming. I couldn't pick Lincoln's cry out of a crowd, but I know every shrill of Jett's. They finished getting him dressed and finally allowed me to nurse him. We spent a few hours there and were taken up to the hospital room where we would be for the night.
The next 24 hours were kind of a blur. Jett literally slept from when we saw him at 11 a.m. until 3:00 a.m., only waking to get little meals here and there. I was really worried that he would be up all night and since I sent Chris home to be with Lincoln, I went to bed around 8:00 pm. We would both snooze for about an hour, Jett would let out a yell, I'd rub his head and we'd go back to sleep until the next hour. At 3:00, he woke up to eat and was wide awake, so I spent the next 2 hours playing and talking with my sweet baby. He would have continued to sleep solidly the next morning, but unfortunately, rounds begin at 6:00 a.m., so the poking and prodding continued.
That morning, I was able to get things moving quickly (I was a little pushy). He got his last dose of antibiotics, so we were able to get his IV out (I made them detach the line and flush it every so often so he wasn't as hooked up and tangled the night before). We also removed his oxygen (I ripped off his RR, HR, and O2 monitors every time I nursed or held him because we kept getting tangled up, but would reattach and reset everything when I laid him back down). Finally, we were able to get his catheter out. And then, we were only waiting for him to pee on his own. He finally did and we were discharged at 12:15 pm.
It was one of the scariest experiences of my life, combined with a long and stressful night without my husband by my side (our choice - our sweet friend offered to let Lincoln sleep at her house). But at the same time, when we got home, I could hardly remember that Jett just had surgery. He has no external markings and was only a little fussy. It took about a week for his sleep to start getting back to normal, but other than that, he has done really well. I am so glad this was kind of a minor surgery. It is preparing me for the bigger ones to come. As we were leaving, the baby in the bed next to us got replaced by a little boy probably a few months older than Lincoln. It broke my heart to know that Jett will be that age for the last couple surgeries. I would rather get everything out of the way now, when he doesn't really remember it, but I know that his little body needs to grow as much as it can before then.
**On being an advocate:
In OT school, one of my teachers was probably the biggest advocate for disability rights. She went on marches, ran from the police, that kind of thing. We were very encouraged to be advocates for our future patients and to teach them to advocate for themselves as well. Well, I am not an outgoing person anymore. I stuck with a crappy doctor for myself because I didn't want to offend her by my leaving. Anyway, that is not the case when it comes to my kids. As I mentioned above, I am not afraid to rip useless wires out if my screaming baby needs me. Although I am not a nurse and do not know all things medical, I think my background had provided me enough knowledge and enough confidence to ask questions and fight for my son. For instance, the nurse wanted to keep the IV line it, even though Jett didn't need the fluid drip anymore. She was a little surprised when I asked her to flush it and take the line out. Same for the monitors. I knew that I would be watching Jett carefully when he was in my arms, so she may as well teach me how to hook them back up when I was done. I felt comfortable doing it because he had been stable the whole time. I know my limits, too, I promise. Anyway, for the first time in my life, I feel like I can finally fight for someone. I am going to get Jett the best medical treatment I can and I am going to make him as comfortable as possible. It feels good to advocate for someone. I think I am taking it a little too far, at times, but I am learning how to moderate it. I am sure that some nurses and receptionists tell their colleagues to watch out for me, but I am not going to apologize for inconveniencing them to help my son.
The morning of the surgery, our dear friend came over to watch Lincoln and take him back to her place for the day (he wasn't awake when we left). We checked in with Surgery Registration and got Jett ready for the surgery. He had to wear a tiny little hospital gown, and they gave him long yellow hospital socks. It was all very cute. I only had the poor camera on my phone, so here is a semblance of what he looked like.
Anyway, we talked to nurses, residents, doctors, anaesthesiologists, etc for about an hour before the anaesthesiologist came back. I was cuddling with my sweet boy and she had me just hand him over. That was the hardest part--handing my sweet little son to a complete stranger and watching her walk away with him. It was the only time I cried.
Chris and I joined the other parents in the waiting area and we laughed for a long time. I think we both deal with stress by trying to diffuse the tension. It was probably completely inappropriate.
About 5 minutes after I drifted off to sleep, Chris woke me up. It was 10 a.m. and the doctor came to talk to us. He said that they had a hard time getting an IV in, so the procedure didn't even start until 9:25. Then it was quick and easy. He was able to give us a plan to move forward, too, which may have been the best part of the day. Finally, FINALLY, we have some sort of plan. Along with his kidney/bladder issues, one of Jett's testes hasn't descended (poor guy, huh?). Well if it hasn't descended in the next few months, he will have to get surgery on that. We're looking at 2 surgeries to help his teste descend as well as another one to help control the reflux occurring into his kidneys. If the timing works, Dr. Lee may be able to combine one of the teste surgeries with the reflux correction. Each should be spaced about 6-9 months apart.
From there, we were taken to the recovery room to meet up with our sweet boy. From down the hall, we could hear him screaming. I couldn't pick Lincoln's cry out of a crowd, but I know every shrill of Jett's. They finished getting him dressed and finally allowed me to nurse him. We spent a few hours there and were taken up to the hospital room where we would be for the night.
The next 24 hours were kind of a blur. Jett literally slept from when we saw him at 11 a.m. until 3:00 a.m., only waking to get little meals here and there. I was really worried that he would be up all night and since I sent Chris home to be with Lincoln, I went to bed around 8:00 pm. We would both snooze for about an hour, Jett would let out a yell, I'd rub his head and we'd go back to sleep until the next hour. At 3:00, he woke up to eat and was wide awake, so I spent the next 2 hours playing and talking with my sweet baby. He would have continued to sleep solidly the next morning, but unfortunately, rounds begin at 6:00 a.m., so the poking and prodding continued.
That morning, I was able to get things moving quickly (I was a little pushy). He got his last dose of antibiotics, so we were able to get his IV out (I made them detach the line and flush it every so often so he wasn't as hooked up and tangled the night before). We also removed his oxygen (I ripped off his RR, HR, and O2 monitors every time I nursed or held him because we kept getting tangled up, but would reattach and reset everything when I laid him back down). Finally, we were able to get his catheter out. And then, we were only waiting for him to pee on his own. He finally did and we were discharged at 12:15 pm.
It was one of the scariest experiences of my life, combined with a long and stressful night without my husband by my side (our choice - our sweet friend offered to let Lincoln sleep at her house). But at the same time, when we got home, I could hardly remember that Jett just had surgery. He has no external markings and was only a little fussy. It took about a week for his sleep to start getting back to normal, but other than that, he has done really well. I am so glad this was kind of a minor surgery. It is preparing me for the bigger ones to come. As we were leaving, the baby in the bed next to us got replaced by a little boy probably a few months older than Lincoln. It broke my heart to know that Jett will be that age for the last couple surgeries. I would rather get everything out of the way now, when he doesn't really remember it, but I know that his little body needs to grow as much as it can before then.
**On being an advocate:
In OT school, one of my teachers was probably the biggest advocate for disability rights. She went on marches, ran from the police, that kind of thing. We were very encouraged to be advocates for our future patients and to teach them to advocate for themselves as well. Well, I am not an outgoing person anymore. I stuck with a crappy doctor for myself because I didn't want to offend her by my leaving. Anyway, that is not the case when it comes to my kids. As I mentioned above, I am not afraid to rip useless wires out if my screaming baby needs me. Although I am not a nurse and do not know all things medical, I think my background had provided me enough knowledge and enough confidence to ask questions and fight for my son. For instance, the nurse wanted to keep the IV line it, even though Jett didn't need the fluid drip anymore. She was a little surprised when I asked her to flush it and take the line out. Same for the monitors. I knew that I would be watching Jett carefully when he was in my arms, so she may as well teach me how to hook them back up when I was done. I felt comfortable doing it because he had been stable the whole time. I know my limits, too, I promise. Anyway, for the first time in my life, I feel like I can finally fight for someone. I am going to get Jett the best medical treatment I can and I am going to make him as comfortable as possible. It feels good to advocate for someone. I think I am taking it a little too far, at times, but I am learning how to moderate it. I am sure that some nurses and receptionists tell their colleagues to watch out for me, but I am not going to apologize for inconveniencing them to help my son.
Update: Three weeks following the surgery, Jett had an ultrasound and
post op visit to the doctor. What we learned from that trip is that the
surgery went well. The ureterocele inside of his bladder is gone.
Once urine enters his bladder, it exits through his urethra, instead of
pooling inside of the ureterocele. This has also allowed the dilation
in his kidneys to decrease (they are still swollen, but not nearly as
much). For all intents and purposes, the surgery was successful and did
what it was supposed to do. Jett most likely still has reflux and that
will be followed up in a year or so, but at least his obstruction is
gone, which is the first step.
Thursday, January 9, 2014
Thoughts on the NICU Experience
Jett was in the NICU for 4 days, which is a relatively short period of time in comparison to most other babies who have to be there for weeks or months. Jett was taken down to the NICU to start monitoring about an hour after birth (I had to wait another hour for my own recovery before I could join him). He had the standard oxygen, heart rate, and respiratory rate monitors on him. He was placed in an incubator--the ones where you can stick in your hands to touch your baby.
Luckily, the doctors and nurses quickly cleared Jett for a lot of the standard things and he was taken out of the incubator and placed in a regular bed the next morning. He looked so good compared to the rest of the babies in his nursery. Most of them were only 3 or 4 pounds and had already been there for months. Chris and I didn't see too many other parents. Occasionally we would see a mom or dad come and hold their baby for an hour or so before going back home. We were so lucky that we never had to face what those parents were facing--going home and returning to "life" while their little baby fights for his or her life in the hospital. I feel incredibly blessed that the only time I really ever left Jett's side was to pump, use the bathroom, or sleep for a few hours at night. I know that so many other parents had harder obstacles to face and while our experience cannot compare in many regards, it was still a difficult experience for us.
The first day in the NICU was great. The nurse taught us how to change his diaper and get it weighed (for measuring urine output) and kind of let us take charge. Chris and I did use the opportunity to get a few hours of rest during the day, which helped me recover quickly (I felt really good the next day). That night, I was planning on staying with Jett for the two feedings, then switching Chris for a couple of hours and coming back in time for his next feeding. Luckily, we had an instant connection with our night nurse and she begged us to get some sleep and let her do a feeding (with my pumped milk). We obliged. She called and we actually let her take the 6 a.m. feeding, too (which turned out to be a huge blessing to get another couple of hours of sleep).
Day 2 in the NICU was complete hell. Chris and I woke up at 7:30 and I had just finished pumping and was planning on going down to feed Jett when we got a phone call. Jett was being taken to Children's Hospital (connected to Brigham and Women's by a tunnel) RIGHT now. Chris and I literally RAN down the hall to meet the nurse in time. Or should I say demonspawn? We really should have complained about her earlier (at the end of the shift, we requested that she not be allowed near our son ever again). The day was so long and full of testing, and she just added to the misery. She crossed so many lines. She tried to make decisions for us and tried to not let me hold my baby. Tried because I literally yelled at her. Several times. I definitely had "Mama Bear" syndrome. For example, she said she would feed Jett (uh, I want to nurse him) and she was trying to hold his hand during the test (Who are you? Both of his parents are right here. Back off, Wench.) She tried to sneak him to his circumcision without telling us, then told us we couldn't come in the room (yeah, right. I know you're not in charge). She also made little decisions that should have been ours--like giving him a ton of sugar water when he was calm and didn't need it or giving him a binky without consulting us. Needless to say, Chris and I literally took shifts and did not leave him alone with her for a single minute.
Day 2 was also full of tests. In the course of one day, Jett had:
- Ultrasound (of his kidneys and bladder)
- VCUG (They insert a catheter and fill him up with water and watch where the urine flows)
- Echocardiogram (Imaging of the heart and the fluid surround the heart)
- Typical newborn hearing exam
- Circumcision
It was just one thing after another. We were all worn out by the end of the day.
Night 2 and Day 3: That night and the next day were much better. We loved our night nurse again and she took the 3 a.m. feeding. I was discharged the next day, so Chris went home to be with Lincoln and I stayed with Jett. I didn't have anywhere to go, so I literally sat in the rocker by his little bed all day.
Night 3 and Day 4: I stayed overnight in one of the family rooms. Again, I skipped the 3 a.m. feeding, so I got my typical 4 hours of sleep. By 6 a.m., I was back to sitting by Jett's side. Around noon, Chris came and picked us both up.
Overall, I am so grateful for the staff (minus hell lady). I love that the Brigham is connected to Children's Hospital and I got daily visits from my nephrology doctors and a few visits from my urologist. Being in the NICU itself is super depressing. Looking at Jett, I almost forgot that something was wrong with my little boy. But hearing the beeps from the other beds and monitors always brought me back to reality. I'm sure that my crazy hormones and sleep deprivation did nothing to help the situation. At one point, my day nurse was MIA and Jett's monitors showed that he was de-sating like crazy. His oxygen dropped to about 60%. He looked fine, but I was holding him and freaking out. I started yelling for help because there were no nurses in my little section and finally a nurse from the other side came over to help. It was nothing. His monitor just slid off, but the feeling of utter despair and helplessness and panic is still strong.
Even though we were only there for a few days, I can see how a lot of people get attached to the staff or other families. No one else knows what you are going through, except the ones that are going through it, too. I am grateful for the curtains I usually had up (intended for nursing privacy). I cried when the couple 3 down from us went off to surgery with their daughter. I bawled when the man next to us told the nurse his wife was still in the ICU, recovering from preeclampsia and hadn't met her son yet. No matter how prepared you are think you are before you enter the NICU, you aren't. The baby next to us got rushed off on an emergency and never made it back. We are praying that he made it and was just transferred to Children's, but you never know.
I would never wish a NICU experience on anyone and I am completely in awe of those who have survived it. We knew that Jett was a borderline NICU baby the whole time and it never made it any easier.
Luckily, the doctors and nurses quickly cleared Jett for a lot of the standard things and he was taken out of the incubator and placed in a regular bed the next morning. He looked so good compared to the rest of the babies in his nursery. Most of them were only 3 or 4 pounds and had already been there for months. Chris and I didn't see too many other parents. Occasionally we would see a mom or dad come and hold their baby for an hour or so before going back home. We were so lucky that we never had to face what those parents were facing--going home and returning to "life" while their little baby fights for his or her life in the hospital. I feel incredibly blessed that the only time I really ever left Jett's side was to pump, use the bathroom, or sleep for a few hours at night. I know that so many other parents had harder obstacles to face and while our experience cannot compare in many regards, it was still a difficult experience for us.
The first day in the NICU was great. The nurse taught us how to change his diaper and get it weighed (for measuring urine output) and kind of let us take charge. Chris and I did use the opportunity to get a few hours of rest during the day, which helped me recover quickly (I felt really good the next day). That night, I was planning on staying with Jett for the two feedings, then switching Chris for a couple of hours and coming back in time for his next feeding. Luckily, we had an instant connection with our night nurse and she begged us to get some sleep and let her do a feeding (with my pumped milk). We obliged. She called and we actually let her take the 6 a.m. feeding, too (which turned out to be a huge blessing to get another couple of hours of sleep).
Day 2 in the NICU was complete hell. Chris and I woke up at 7:30 and I had just finished pumping and was planning on going down to feed Jett when we got a phone call. Jett was being taken to Children's Hospital (connected to Brigham and Women's by a tunnel) RIGHT now. Chris and I literally RAN down the hall to meet the nurse in time. Or should I say demonspawn? We really should have complained about her earlier (at the end of the shift, we requested that she not be allowed near our son ever again). The day was so long and full of testing, and she just added to the misery. She crossed so many lines. She tried to make decisions for us and tried to not let me hold my baby. Tried because I literally yelled at her. Several times. I definitely had "Mama Bear" syndrome. For example, she said she would feed Jett (uh, I want to nurse him) and she was trying to hold his hand during the test (Who are you? Both of his parents are right here. Back off, Wench.) She tried to sneak him to his circumcision without telling us, then told us we couldn't come in the room (yeah, right. I know you're not in charge). She also made little decisions that should have been ours--like giving him a ton of sugar water when he was calm and didn't need it or giving him a binky without consulting us. Needless to say, Chris and I literally took shifts and did not leave him alone with her for a single minute.
Day 2 was also full of tests. In the course of one day, Jett had:
- Ultrasound (of his kidneys and bladder)
- VCUG (They insert a catheter and fill him up with water and watch where the urine flows)
- Echocardiogram (Imaging of the heart and the fluid surround the heart)
- Typical newborn hearing exam
- Circumcision
It was just one thing after another. We were all worn out by the end of the day.
Night 2 and Day 3: That night and the next day were much better. We loved our night nurse again and she took the 3 a.m. feeding. I was discharged the next day, so Chris went home to be with Lincoln and I stayed with Jett. I didn't have anywhere to go, so I literally sat in the rocker by his little bed all day.
Night 3 and Day 4: I stayed overnight in one of the family rooms. Again, I skipped the 3 a.m. feeding, so I got my typical 4 hours of sleep. By 6 a.m., I was back to sitting by Jett's side. Around noon, Chris came and picked us both up.
Overall, I am so grateful for the staff (minus hell lady). I love that the Brigham is connected to Children's Hospital and I got daily visits from my nephrology doctors and a few visits from my urologist. Being in the NICU itself is super depressing. Looking at Jett, I almost forgot that something was wrong with my little boy. But hearing the beeps from the other beds and monitors always brought me back to reality. I'm sure that my crazy hormones and sleep deprivation did nothing to help the situation. At one point, my day nurse was MIA and Jett's monitors showed that he was de-sating like crazy. His oxygen dropped to about 60%. He looked fine, but I was holding him and freaking out. I started yelling for help because there were no nurses in my little section and finally a nurse from the other side came over to help. It was nothing. His monitor just slid off, but the feeling of utter despair and helplessness and panic is still strong.
Even though we were only there for a few days, I can see how a lot of people get attached to the staff or other families. No one else knows what you are going through, except the ones that are going through it, too. I am grateful for the curtains I usually had up (intended for nursing privacy). I cried when the couple 3 down from us went off to surgery with their daughter. I bawled when the man next to us told the nurse his wife was still in the ICU, recovering from preeclampsia and hadn't met her son yet. No matter how prepared you are think you are before you enter the NICU, you aren't. The baby next to us got rushed off on an emergency and never made it back. We are praying that he made it and was just transferred to Children's, but you never know.
I would never wish a NICU experience on anyone and I am completely in awe of those who have survived it. We knew that Jett was a borderline NICU baby the whole time and it never made it any easier.
A Planned Surgery
Yesterday, Chris and I took Jett to Children's Hospital for a day of testing. We were there nearly 7 hours and had blood pressures taken, bloodwork drawn, an ultrasound, DMSA, and a meeting with the urologist. It was a full and stressful day, but we know a little more now.
First of all, the DMSA test was the big one for the day. Radioactive material was injected into Jett's veins (which are tiny and apparently really difficult to find) and three hours later, he slept on a mat under a big camera while pictures were taken of his kidneys. Somehow, the test is able to compare how much each kidney is working compared to the other one. Out of 100% of function, Jett's left kidney is doing 80% of the work and the right is 20%. Dr. Lee even speculated that he is doubtful that the right kidney is even doing that much. We don't know how well Jett's kidneys are working in comparison to normal functioning kidneys, just in comparison to each other.
Apparently doctors think that a kidney that is doing 20% of the work is worth saving and even though Jett's right one might not be doing that much, Dr. Lee thinks it is worth saving to see what happens after the initial surgery. He thinks he will eventually have to go in to do work on the left kidney and can remove the right one later, if necessary. So, for now, Jett will be keeping both kidneys.
The DMSA also clearly showed that the top part of the right kidney wasn't the only contributing factor to filling the ureterocele in Jett's bladder. Because it is receiving fluid from both ureters on that side, it no longer makes sense to remove the top portion of the right kidney in order to drain the ureterocele (which was the thought from last visit). This leaves the other option: incise the ureterocele from the inside. It will be a minimally invasive surgery where Dr. Lee will enter Jett's body through his urethra and basically cut a slit or hole in the ureterocele which will then cause it to deflate.
We don't really know how Jett's kidneys will respond. There is a possibility that it could reduce the reflux going back up to the left kidney, although that is unlikely. It could also start reflux going up to the right. We really can't predict what will happen, but we do know that we need to take care of the ureterocele soon and remove that obstruction from Jett's body.
The surgery is scheduled for January 22. It will most likely be the first of several surgeries. I am scared to start taking this path (which only makes this all a reality), but I know we need to do it soon. Jett will be 2 months old.
First of all, the DMSA test was the big one for the day. Radioactive material was injected into Jett's veins (which are tiny and apparently really difficult to find) and three hours later, he slept on a mat under a big camera while pictures were taken of his kidneys. Somehow, the test is able to compare how much each kidney is working compared to the other one. Out of 100% of function, Jett's left kidney is doing 80% of the work and the right is 20%. Dr. Lee even speculated that he is doubtful that the right kidney is even doing that much. We don't know how well Jett's kidneys are working in comparison to normal functioning kidneys, just in comparison to each other.
Apparently doctors think that a kidney that is doing 20% of the work is worth saving and even though Jett's right one might not be doing that much, Dr. Lee thinks it is worth saving to see what happens after the initial surgery. He thinks he will eventually have to go in to do work on the left kidney and can remove the right one later, if necessary. So, for now, Jett will be keeping both kidneys.
The DMSA also clearly showed that the top part of the right kidney wasn't the only contributing factor to filling the ureterocele in Jett's bladder. Because it is receiving fluid from both ureters on that side, it no longer makes sense to remove the top portion of the right kidney in order to drain the ureterocele (which was the thought from last visit). This leaves the other option: incise the ureterocele from the inside. It will be a minimally invasive surgery where Dr. Lee will enter Jett's body through his urethra and basically cut a slit or hole in the ureterocele which will then cause it to deflate.
We don't really know how Jett's kidneys will respond. There is a possibility that it could reduce the reflux going back up to the left kidney, although that is unlikely. It could also start reflux going up to the right. We really can't predict what will happen, but we do know that we need to take care of the ureterocele soon and remove that obstruction from Jett's body.
The surgery is scheduled for January 22. It will most likely be the first of several surgeries. I am scared to start taking this path (which only makes this all a reality), but I know we need to do it soon. Jett will be 2 months old.
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