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. 

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. 

Merry Christmas!

Emily slept through the majority of her first Christmas. Zachary enjoyed it, and was quickly falling head over heels in love with his little sister.

Because I had to feed Emily once every few hours and because she hadn't had any vaccinations yet, she wasn't allowed in the NICU so I couldn't really go either. Mike left soon after we opened presents to spend the day with Nicholas so he wasn't alone on his first Christmas. 

My sister made our Christmas dinner, and let me spend time with Zachary and Emily. Since I was still recovering from the c-section, I wasn't terribly useful anyway. 

It was a very quiet Christmas and our family felt somewhat disconnected because we were split. 

Discharged

On December 24th, Emily and I were given clean bills of health and were determined ready to be discharged. We packed up everything in our room and dressed her in her going home outfit. The nurses told us to leave everything in our room while we went up to the NICU to say goodbye to Nicholas.

I had known since before giving birth that we would be leaving him in the NICU when I went home. I had prepared myself that we may potentially have to leave Emily there too, so it was very positive news that she was coming home with me. It still didn't prepare me for what I felt, leaving him there. 

The nurse practitioner heading the NICU that day was prepared with tissues and hugs. She told me that, having worked for years in the NICU, she felt that she understood how difficult it must be to drive away from the hospital without your child in the car. Then she had a son who had to stay in the NICU. She said she sobbed the whole way home and nobody could calm her down. 

I cried as we drove away. I knew he was in amazing hands and that the nurses on that floor watched over these babies as if they were their own, but I was leaving and my baby wasn't coming with me. I thought I was prepared for that. You can never be prepared to leave your child behind in the hospital. 

Emily kept me very busy and luckily my sister was here also, so that distracted me enough that I made it through the first day and night at home.

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. 

Brain Surgery

Two days after he was born, Nicholas was scheduled for his shunt placement. The neurosurgeon and his student came to my room before the surgery and made sure that I was aware of what would be happening.

To place the shunt, the neurosurgeon would go in through Nicholas's soft spot, place the shunt on the right side of his head, and then thread the catheter between the skull and skin behind his ear, down through his chest and end up floating in the abdominal cavity. The shunt was set for a certain pressure (started at 100 - which is fairly high), and would drain any cerebral spinal fluid that caused his brain to be above the set pressure and dump the extra fluid into his abdominal cavity where it would be absorbed by his intestines and urinated out. 

The neurosurgeon told us, as long as there where no complications, the surgery would be about 15 minutes. Nicholas would be intubated for up to three days depending on his recovery process. Mike and Zachary went to walk with Nicholas to the operating room and would be there when he got out. I could have been wheeled there too, but having Emily with me meant I should stay in my room with her. 

I don't remember just how much time passed, but eventually the neurosurgeon and his student reappeared in my room. They let us know the surgery was done and Nicholas had done very well. Now we had to wait and see if the surgery would do what we needed it to. 

Meeting our daughter

After leaving the NICU, I was wheeled to my room in the mother/baby unit. I met my first nurse and was allowed to order some clear liquid food off the menu. I inquired about how much longer they were planning on keeping Emily in the nursery and was told that they would find out. Mike and Zachary settled in on the couch and Zachary was allowed to watch some cartoons on TV.

I kept a close eye on the clock and at exactly six hours after I was wheeled into recovery, I asked Mike to find out what was going on with Emily. He left and a few minutes later walked back into the room pushing a bassinet and our daughter joined us. A lactation consultant who also worked with babies in the NICU followed her in and we started working on breastfeeding. Since I was also going to be pumping for Nicholas, she brought me a pump kit and a pump. She promised me that I wouldn't get much in the beginning but to send whatever I was able to pump to the NICU for Nicholas because every little bit helped.

Zachary was very curious about his sister and also very excited to finally meet her. We let him hold her and touch her and begin to form a relationship with her. I was amazed that he was so good with her. He had no jealousy or anything, he immediately declared that his baby sister was "soooooo cuuuuuuute" and wanted to take her home right away.

Mike visited the NICU a few times during the day and promised me that Nicholas was doing well. He needed no respiratory assistance - was completely breathing on his own. That was huge - because of the level of severity of his hydrocephalus, they were uncertain just how many brain functions he would be able to use. The fact that he had basic abilities indicated some brain function which was something we wanted to see.

Later that night before Mike took Zachary home to sleep, we dropped Emily off at the nursery and Mike wheeled Zachary and I to the NICU so I could spend some time with Nicholas.

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.