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.
Thursday, January 9, 2014
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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