On This Road

There's no way to describe the way you feel when the doctor tells you, "We see something wrong," while looking at an ultrasound. Your heart drops. You grasp your husband's hand, you stare at the grainy images they're showing you, trying to make sense of light and shadows. When those words "We see something wrong" includes the word brain, it gets really scary. A big long name for a condition we had never heard of. Hydrocephalus. Prognosis is typcially good. You cling to the word typically but live in fear of the atypical. Of the outliers. Of the ones who don't have a good prognosis. You vow to help him fight, to help him live the best life he can.

The day he's born. You barely see him before he's whisked off to be cared for by someone else. Your child being placed into someone else's arms. Someone else leaning in close and providing warmth. You're laying in a cold operating room with no answers. Your heart pounding, the worst case scenarios running through your head. Asking the doctors for answers and being told they have none yet. You'll get them they promise but not right now.

Standing in the NICU next to his bassinet and hearing "Not swallowing the way he's supposed to. Swallow reflex not working. Probably some damage to his brain. Hydrocephalus." Suddenly your vision of your future, and his, comes crashing down around you. The future you've always envisioned is raising happy children that leave and live lives with their own families, their own careers. Brain damage may change that future. Certainly you'll love him with everything you have forever, but that future may include him by your side for the rest of it. And what to do when your future ends but his keeps going? What happens then? Your resolve to fight slips a little. It's a scary time to hope, but what choice do you have? You start therapies. You agree to another surgery. You do everything the doctors and nurses tell you because it will help.

It's terrifying to go through. It breaks your heart because all you want is for your child to be happy. All you want your child to know is love and joy. And while you know that's not possible for his whole life, you'd really like to think it is possible in the first three weeks. And you feel guilty that your child has to know pain. And fear. And be poked and prodded. And x-rayed. And have ultrasounds. And have a PICC line placed. And you know that all of this is to help him. But he doesn't know that. He has no clue.

Then one day he does this.

And two days later he does this.

And you compare this.

And you start to feel sparks of true hope. And you start to allow yourself to consider that word typically again. Typically good prognosis. And you realize that what they told you in the NICU, "Nicholas hasn't written his story yet. He's writing it every day. There is nothing set in stone." is being proven to you by leaps and bounds. By a baby who doesn't know any better than to fight. And your resolve to help him fight that you thought you had lost? You realize it has been there the whole time and has become so ingrained that you don't have to think about it anymore. And you realize that nobody's future has been written yet and it is never never wrong to cling to hope.

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. 

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. 

Eating

You don't have to think about swallowing when you're doing it, you just do it. I would go so far as to say I have never even wondered how the mechanics of eating works. It just does. After Nicholas failed his swallow study and was placed on his NG tube, we had a discussion with the nurse practitioner and the neonatologist about our options.

The first thing they wanted to look at was getting Nicholas working with a speech therapist. We were confused by this - he's a newborn, what could a speech therapist do? Turns out they do a lot. They know how the mouth and tongue and neck muscles work, so they're the best provider to work on feeding issues. He would continue his NG feeding while they tried to work on making it safe to eat. 

The speech therapist was the first person to tell us that his failure to have the right mechanisms to safely eat was probably neurological due to the hydrocephalus. Because of the immense pressure on the brain and the fact that his brain was forced out of the way due to the huge ventricles, there was a very real possibility that the area of the brain that controlled swallowing was either under too much pressure still to function or had been damaged because of the hydrocephalus and had not developed at all or correctly. 

That was a hard realization. Until that point, hydrocephalus had just meant a big head and a brain surgery. We hadn't really considered the fact that there very well may be some brain damage. How can you? 

As speech therapy progressed and some progress was made but not being made very quickly, another option was brought to us. 

Nicholas was not allowed to leave the NICU until he could eat safely. The NICU did not consider eating via NG tube "safe". Certainly it is safe when it is being watched 24/7 by a trained medical professional but they didn't want a baby at home with an NG tube. Plus, the Bradys continued and the nurses suspected it was acid reflux coming up into his airway. An NG tube exasperates that because it allows an opening from the stomach back up the esophagus. Since he was still having Bradys even on an NG tube, it was absolutely not safe to have him home where we couldn't have him on monitors all the time. 

The next best option was to place a g-tube. This was a surgical procedure where a hole would be placed in his stomach and a button would be placed in that hole. We could attach a tube to the button and feed him directly into his stomach via either gravity or a pump. We didn't like the idea of him having to go through surgery again so soon. We felt at a loss. He couldn't go home right now because he couldn't eat safely but the best and fastest option to get him home was to make him have surgery again. It was a difficult place to be in as parents. Do we keep him in the hospital to keep working with the therapists? Or do we make him have surgery again and keep up with therapy as an outpatient so he can hopefully one day have the tube removed?

One step forward two steps back

People who had children in the NICU before me warned me that it was a roller coaster journey and that I should expect setbacks.

We had visited the NICU when I was still pregnant because one of Mike's co-workers is on the parent advisory board at the children's hospital and arranged it so that we would feel more comfortable when the time came. We were lucky in a way, that we knew before I gave birth that we would be in the NICU and could prepare as best as possible. We also knew that there was a possibility that both twins would have some NICU time since multiples like to come early. 

Before the twins were born, I was very confident that Nicholas would have his surgery, he would dutifully do his 7 day stint in the NICU and then he would be home in our arms. I had no idea of the journey we would face. 

Nicholas did have the surgery. And he was quite successful at his initial recovery. As I previously posted, he was extubated within hours of brain surgery, not days as we had been told. Even his nurses were impressed. Then he stopped urinating. And he had a Brady (bradycardia) every time he ate. A urologist was called in. A swallow study was ordered. 

The urination problem ended up being a seemingly small issue. The urologist believed it was a reaction to the morphine Nicholas was on to control the pain from his brain surgery so he was weaned off to just Tylenol. A CT scan and several ultrasounds later and the urologist determined that there were no bladder or kidney issues. 

The Bradys during eating ended up being a far more complex issue. And a far more dangerous one. During the swallow study, he was given a small amount (5 ml) of breast milk and was watched via x-Ray while he swallowed. Typically, if a baby passes this part, they move on to formula thickened with a small amount of rice cereal to make sure that the baby can swallow thicker substances as well. Nicholas failed the first part and it was immediately determined that it was unsafe for him to eat by mouth. He was immediately placed on NPO (nil per os or nothing by mouth) and an NG (nasogastric) tube was placed. 

The reason that Nicholas had a Brady (his heart rate basically dropped to dangerously low levels - sometimes as low as 10 beats per minute) every time he ate was that his tongue and neck muscles were not performing the actions they were supposed to so the milk he was taking in was sitting on top of the vocal chords and was taking the path of least resistance - down his airway. He was aspirating his milk, which could lead to big issues, including pneumonia. He was attempting to protect his airway, so he would stop breathing and his heart rate would plummet, causing his Brady. 

Visiting Nicholas

Before I had a child in the NICU, I always had the idea that it was a hectic place, filled with harried nurses running around saving tiny lives. When I visited Nicholas on the fifth floor NICU, the unit was quiet and almost peaceful. Each baby had his or her own room and a nurse sat between two rooms and monitored two babies. The nurses were Angels on earth. They were amazing. Yes, there were alarms and yes, the nurses were in fact saving tiny lives daily, but it was a calm and loving place to be.

My sister and I went in to visit Nicholas. Zachary, having had a bit of a traumatic experience during my labor and delivery, was feeling pretty scared of the hospital in general and didn't want to go in and visit his brother. Because Emily wasn't allowed in either, Mike sat in the lobby area with Zachary and Emily while my sister and I visited. I met the nurse practitioner heading the floor and met the nurse who would end up being one of the two primary nurses that we would have while on the floor. 

The baby next door to Nicholas was very sick and incredibly medically complex. As such, Nicholas was paired with that baby because he was "easier" and the nurse's workload was balanced. The first nurse I met on the fifth floor had been caring for the baby next door for months and so was almost always Nicholas's nurse when she was working. You form a relationship with the nurses. We knew she was planning her wedding. She knew Zachary was terrified to come in. We trusted her with one of our most precious possessions and she proved herself totally worthy of that trust. With one exception, we felt that way about every person we met on that unit. 

The nurse practitioner called for a child life specialist to work with Zachary and make him feel more comfortable. She also worked it so that, as long as Emily got a clean bill of health from her pediatrician at her first appointment, she could come into the NICU also so we wouldn't be split. 

The days became fairly monotonous. We would wake, eat breakfast, complete any errands we needed, drive to the hospital, stay in the room with Nicholas. We usually tried to leave before 7:30 p.m. because that was shift change and we would be locked in our room until 8:30. 

Some days our child life specialist would come and play with Zachary. Some days she would come and take Zachary to the play room on the pediatric unit. Some days there was a child friendly event and we would take Zachary. Some days he would want to spend the whole day in the family lounge in the NICU. We grew to know most of the staff and met several parents (Mike knew more than me).

We were not initially allowed to hold Nicholas because he had a line placed through his umbilical artery. It would be devastating if that were pulled out. It took a week for them to place a PICC line and then we were finally allowed to hold him. It's weird to have a child and be able to see them and talk to them and touch them but not be able to hold them in your arms. It made the moment we could hold him so much more special. And allowed for bonding to finally start happening. 

After Brain Surgery

We waited to hear that Nicholas had been moved back to the NICU so Mike could go see him. Zachary sat next to me in my hospital bed playing with the remote for the TV in the room. I held Emily, nursed her, pumped for Nicholas.

Finally, Mike's cell phone rang. Nicholas was back in the NICU. We could go see him if we wanted. Mike went up, I stayed in my room with Zachary and Emily. 

He was still intubated, which we were expecting. He had a small incision in the upper right part of his skull. The neurosurgeon had not needed to make the incision behind his ear, so the only other incision was in his belly where the neurosurgeon directed the end of the shunt catheter to drain. We were so thrilled that the pressure would start to reduce. 

Mike came back to the room with the news and pictures. At 2:45, we received a call from the NICU. Nicholas had woken up and started to fight his intubation. The respiratory therapist monitored his oxygen levels and decided to remove the intubation to see if he would be okay. And he was. His intubation that was supposed to be for two or three days ended up lasting less than 8 hours. It was then we knew we had a fighter on our hands. 

After They're Here

I was in the post partum recovery for a few hours after the C-section. It was very surreal because when I gave birth to Zachary, he came with me into the recovery unit and I began breastfeeding him within an hour of giving birth. I was in recovery here, had just had two babies, and yet had none with me.

Nicholas went directly to the NICU for evaluation and to prepare him for his impending brain surgery. Emily went to the newborn nursery for observation for six hours because she was born as a preemie. The twins were born at 35 weeks, which is apparently a pretty good length of gestation for twins. Nicholas was born at 7 lbs exactly and Emily was 6 lbs 1 oz. Healthy weights, and (beyond the obvious hydrocephalus in Nicholas), they both seemed to be in perfect health.

After shift change, I was allowed to leave recovery and to be moved to my post partum room. The nurses drove my hospital bed into the Newborn Intensive Care Unit, the first stop for all NICU babies after birth. It was a small room with isolettes and warming beds all shoved in closely together. The lights were dim and it was fairly quiet. I hadn't seen Nicholas when he was briefly showed to me after birth because my husband had my glasses, so this would be my first chance to lay eyes on him.

Because Zachary had had to come along for the birth, he was obviously still there during recovery and in the transport to the mother/baby unit. The recovery nurse had packed him into my hospital bed next to me and he was allowed to come along for the ride. I was very nervous about him seeing Nicholas for the first time, especially since my husband nor I had seen Nicholas and had no idea what he looked like and if it would potentially scare Zachary. We have since learned that we underestimate Zachary and to just let things happen organically because he doesn't look at the world through the same eyes we do.

My hospital bed took up a large amount of space in this crowded room. We wheeled up next to Nicholas's warming bed and I laid eyes on my youngest son for the first time. The first thing I noticed was that he was adorable. He had a giant head, yes, his eyes were open because there was too much pressure for them to fully close, and he had wires all over him monitoring him, but all I saw was an adorable baby boy. Zachary, who I'm sure was completely overwhelmed at this point, whispered in my ear to ask if he could touch Nicholas. The nurse helped him touch Nicholas, and my heart melted. I knew we were in for a different journey than we had originally planned for, but this was the first time that I felt we might be okay.