Discharge Day

Mike had taken Thursday off work and my mom had planned on taking Zachary to Build-A-Bear for the day so we would only have to worry about the babies while getting Nicholas discharged.

We hadn't told Zachary that Nicholas was supposed to get discharged just in case something held him back. We walked in during rounds and learned that nothing so far had happened to keep him from going home. The speech therapist stopped by and gave us her best advice and opinion on what outpatient therapist we should use. His nurses throughout the stay stopped by, he was given hugs and touches and wishes for luck. 

The nurse practitioner who had befriended us stopped by. Her daughter had a g-tube until recently too, so she gave us as many tips as she could think. Nicholas was getting very worked up while she was there and the NP suddenly grabbed him in her arms and started shushing him. His nurse gave the NP a look of relief and said "he was trying to Brady because he was getting so worked up!" Remember that a Brady would put him back at least another five days. 

The Child Life Specialist that we had been working with throughout our stay stopped by with gifts for the twins and for Zachary. The neonatologist came in and talked about nothing at all. Just that they would miss him. They were so excited to see him go home but they were going to miss him. They loved him. 

Finally his discharge paperwork arrived. It was real. We were taking him home. Where he belongs. Where he had a big brother waiting to love him. Where he had a twin sister to cuddle. Where mom and dad would lose sleep to watch him breathe. Home. Transportation was called (he had to be taken downstairs in my arms in a wheelchair) and then we were off. The room was packed with all the supplies we could take, the decorations Zachary had left taped to the windows were packed away, Nicholas was dressed in his going away outfit and we were going home.

We ran into a former co-worker of Mike's downstairs who worked for the hospital now. He chatted with me while Mike got the car. He was waiting for a local celebrity who was coming to visit the kids in the hospital. Mike finally brought the car over and packed it up, put the babies in, helped me get in the back seat with them and we headed home. 

More Prep

The day before Nicholas's discharge date we walked into his room to find an IV in his head. My heart stopped. Why was there an IV in his head? I was sure that his discharge date had been pushed back and also a little upset that something had happened to him and nobody had called us.

We had one of our two favorite nurses on that day but apparently she was at lunch when we walked in. Our other favorite nurse ran in to explain that he was slightly anemic and that the neonatologist had ordered a blood transfusion in order to keep his discharge date and to keep us from running into any problems. The order for the blood had been put in and as soon as our nurse returned from lunch he would get his transfusion. I was so relieved that his discharge date was still a go and that nothing was seriously wrong. 

Our nurse returned, the blood transfusion started, and the nurse and I got busy filling out the list of things she was supposed to teach us before we were discharged. I had to prove I could put his Mic-key extension tube into the button to feed him. Then I had to prove I could remove it when he was done. I had to prove I could change his diaper. That I knew how to administer medication via his g-tube. That I knew what vitamins to give him. That I knew how to clear his nose and throat using the bulb. That I was comfortable moving him. That I knew the signs of illness and what to do if I detected them. 

As we began to wrap up for the night, I kissed Nicholas goodbye and hoped against hope that tonight would be the last night I went home without him. 

Car Seat Test

We had brought Nicholas's car seat into the room since shortly after the shunt surgery in anticipation of his discharge. When he developed the feeding problems and needing the second surgery, we just left it in his room knowing that he would eventually need it to have the test.

That day finally came! His nurse and Mike set up the car seat in the middle of the room near the monitors. Nicholas was placed in his car seat and buckled in. His initial vitals were taken and then we had to wait an hour. If at any time during that hour his vitals dropped, the test would stop so he could be safe and he would have failed the test. If he failed, he got one more try and then we would talk about a car bed. 

As I previously posted, we were very worried about a car bed. While we would do what we had to do to keep our child safe, we didn't have enough room in either car for all three kids if we needed a car bed. Luckily, if we needed it, insurance would cover it - since the car bed prices started at about $1800. 

I tried very hard not to watch the monitors while we waited for the hour to go by.  Mike took Zach to one of the pediatric floors where they were having an event provided by Child Life and my mom and Emily and I just sat in the room and waited for the hour to pass. 

He passed! He passed with flying colors! He had never once even gotten close to where they would be concerned. 

One more check on the list for going home. 

The Talk

Monday morning, we walked into Nicholas's room to find the neonatologist, the nurse practitioner, the charge nurse, and our nurse in his room on their morning rounds. And they were discussing discharge. And they were setting a date.

We jumped into the conversation, and were surprised to hear that they wanted to order an echocardiogram for his murmur before he left. Excuse me? His murmur? Turns out he has a murmur and while they're not too concerned, they just want to take an look and make sure it's nothing they need to look at closer. Why weren't we ever told? Nobody could answer. 

It was decided that, barring bad news from cardiology, they would set a discharge date of Thursday - five days after his last Brady. He had some tasks he had to compete and so did we. 

First on the list, his car seat test. Emily had had to have one before leaving the hospital also because of her gestational age. He had to sit in his car seat for an hour, attached to monitors, and maintain a steady heart rate and a steady respiration rate. This was for safety purposes. He was fine when laying in his crib all day long, but a car seat was a totally different position. We were worried that he would fail because of the size of his head. We were worried that his head would drop and cut off his airway. Don't worry said the neonatologist. If he fails, he will just go home in a car bed. No biggie. Ummm except that...we don't have ROOM for a car bed that takes up two seats. Our family would be stuck taking two cars everywhere. We crossed our fingers that he would pass. 

We also had to do some things. We had to learn how to feed him through the g-tube. How to clean the site. How to clean the equipment. How to use the pump. What signs of shunt failure to look for and when to return to the hospital. What to do when his Mic-key button fell out and we needed to put it back in. How to give him medicine (can't take it by mouth!). It was overwhelming and a little bit scary. We had had nurses standing next to us this whole time. Now we would have to do this on our own. 

Usually you have to also room in with your child. You have to do everything on your own (feed, diaper, bathe) for a 24 hour period before discharge was approved. The doctor waived that for us because we had Zachary and Emily. It would have been a hardship and also, we already knew how to diaper and bathe a child. 

Now all we could do was wait for Thirsday and hope that Nicholas cooperated. 

Eating

You never really think about how integral eating is as part of our society. We go out to dinner to socialize, celebrate, do business, relax... Even at home, eating is usually a big deal. Families gather at a table for dinner to reconnect. Holidays are spent around the kitchen and the table. 

Our speech therapist in the hospital started talking to us about how we were going to have to include Nicholas in these traditions even if he wasn't eating by mouth. He should sit at the table (when he was strong enough obviously) and take his feed even if it weren't by mouth. We should try to hold him while he got his feeding because you hold babies when they eat.

When Nicholas got the all clear from the surgeon to start eating again, they started him very slowly on the tube. He was getting approximately 20 ml of milk over an hour. They just weren't sure how he would tolerate it. In order to start the clock on discharge, he had to be back at what he had been eating via NG tube before the surgery. He had been at 60 ml over an hour, so we had some work. 

He took every feed like a champ and each time they fed him, they increased the amount. By Saturday (surgery had been Thursday), he was back at full feeds. The NICU drew up a feeding schedule for us and the nurses started to hint at discharge talks. We tried very hard to not get our hopes up. As everyone who has ever had a child in the NICU, talks can change fast. 

Saturday, Nicholas had a Brady. It wasn't a true Brady in the sense that something was physically wrong that he stopped breathing, it was actually just that he was positioned wrong and his airway was cut off (did I mention he had a REALLY big head?) but it started our discharge clock over. He had to be Brady free for five days in order to be discharged. We tried not to be too disappointed. He had been a rock star to this point. We knew there would be setbacks. 

Surgery x2 Part 2

The day of surgery came. We were told that he would be in surgery around noon. We got to the hospital early and found an extremely pissed off baby. He had officially been off food since midnight the night before because of the surgery. We had a nurse that we had never had before and if we couldn't have our "regular" nurses, this one was amazing. She was very calm with Nicholas and funny with us. Nicholas was angry and screaming. A pacifier was not acceptable. He wanted food in his belly.

The nurse told us she had to place an IV line because the NICU didn't want the anesthesiologist to touch their PICC line. They had worked too hard to get that PICC in. She tried to place the IV in his hand and the line immediately collapsed. His hand was just too small. I had helped her hold him down while she placed the IV in his hand but when she said she was going to place the IV in his head, I had to back away. Mike and I switched spots and I held Emily. The IV was placed in his head and then we waited. And waited. And waited. The surgeon stopped by briefly with his resident and explained again what he was going to do and what to expect. He asked if we had any questions and was gone as soon as we said no.

Suddenly, at around 12:30, transport showed up to take Nicholas to surgery. Our nurse was furious that she hadn't been notified so she could have him ready. She busied herself getting him ready to move and we kissed Nicholas. Mike was going to walk down with him and my sister, Emily, Zachary, and I were going to go get some food from the cafeteria while we waited. We were told it would probably be a couple of hours and then he would return to his room. They didn't know if he would still be intubated when he came back up, so we would just have to wait and see.

My sister, Mike, Emily, Zachary and I all returned to Nicholas's room and waited for him to come back. Emily slept. Zachary played games on our phones. My sister, Mike, and I just waited. Our nurse stopped by a few times with updates (he's out of surgery!) but mostly we just waited. And suddenly he was there. Groggy but not intubated. Just a nasal cannula with oxygen. Pretty good. He now had a hole in his belly with a Mic-key button covering it. The button was covered with tape and the extension tube that we could eventually remove after every feeding was taped in with the button. The button is permanent while he has the g-tube. It is what keeps the stomach adhered to the abdominal wall and keeps the hole open so we can continue feeding him. 

The surgeon appeared and said that the surgery had gone very well. They placed the g-tube (on the opposite side of the abdomen than where the catheter from his shunt drains), completed the nissen, completed the circumcision and oh by the way, found a surprise. Ummmm. A surprise? That's a scary term coming from your newborn's surgeon. They had found an inguinal hernia while they were in his abdominal cavity and had gone ahead and repaired it. An inguinal hernia is a hole where the baby's testicles dropped that should have closed. Probably due to his prematurity, Nicholas's had remained open. This could cause issues because his intestines could drop into his testicles, twist, and he would be in for pretty major surgery. As it was, his testicles were quite large because the extra fluid draining from his ventricles was draining through the hole. Lucky the surgeon found it. If they would have found it after surgery and before discharge, he would have had to have a third surgery. If we were discharged and his intestines dropped, we could be looking at an emergency situation. 

Now we waited for Nicholas to get the all clear to start eating to see if he would tolerate his feeds via g-tube. We were getting closer to a discharge date as long as everything worked. 

Surgery x2

After much discussion with each other, the nurse practitioner, the neonatologist, the nurses we had formed a relationship with, Mike's co-worker who has a far more complex situation than us, and our families, the decision was made to move forward with the g-tube placement surgery. The medical staff also recommended to do a nissen while they were placing the g-tube. The nissen takes the top part of the stomach and wraps it around the esophagus so that nothing can reflux out of the stomach. It basically takes away the path up from the stomach. Nicholas had to be taken for a GI x-Ray to verify that he was actually having reflux (all clinical symptoms pointed to yes) so that the surgeon would actually perform the nissen.

We also opted to have his circumcision done while he was under anesthesia if the surgeon had time. Once we decided to do the surgery, it seemed to spring everything into action. We met with the surgical resident under the general surgeon, he began a round of antibiotics in preparation for surgery, speech and occupational therapy ended, and things fast tracked towards the operating room.