The nurse took us into a patient only elevator and we reached the NICU floor. Security is much tighter up here as you can not enter or exit any doors without being questioned through an intercom or swiping a card. Sue and I were both very excited to see Luke again. We went through the main NICU entrance and down a long hall. There were doorways off of the hall and each led to a little wing of babies in the intensive care. Nurses were busily checking monitors, changing babies and filling out paper work. Anyone we came in contact with was extremely nice and willing to accommodate at a moments notice. We finally reached the wing where Luke was located. Before we can progress we were instructed to wash our hands and sanitize…this is something everyone that enters the NICU must do before going into the wings. We finished and moved right to Luke’s incubator. As we approached a doctor was finishing up a procedure where they carefully insert small tubes into the baby’s belly button. We learned that they do this to continue feeding the baby but seeing it does not make it any less scary. Luke laid there with a number of sensors on his chest, a larger tube and mask over his face and those smaller tubes coming out of his belly button. We spent the next few minutes getting explanations of what they were doing to Luke and what we can expect over the next couple days.

We stayed a little longer and just admired how tiny Luke was and how he was being taken care of. While we watched Luke would occasionally shoot a leg out or close and open his hand. His limbs now had the freedom to go where they wanted without the restriction of Sue’s belly. His fingers and toes were so tiny. Sue was exhausted so we decided to go to her room. The nurse led us through another group of doors and into the ‘mommy & baby’ wing. I opted to stay the next few days with Sue. Nurses frequently came in to continue taking her temperature, check blood pressure and look at the incision. Everything was looking great and as we have learned to expect the nurses were extremely nice.

The next day Sue was very tired so I went into the NICU to look at Luke. I sat down in a very comfortable rocking chair and just stared at him as he lay there breathing. A nurse came over and asked if I would like to assist in his care which includes taking his temperature and changing his diaper. For all three of my boys I was the first to change their diaper. I guess that is not such a magnificent thing for most people but it was a big deal for me. When our first was born I had a fear of changing the messy diaper. I figured that I’d pull the diaper back, see poop and start to dry heave or just throw up. In past experiences with poop and boogers(not my own), while I didn’t actually throw up, I would definitely be sickened. I remember one instance where I had to change my brother when I was younger and I actually donned an apron, dishwashing gloves, tongs, goggles and a surgical mask. And even then I was sickened by just looking into the diaper. When the time came for our first to be changed for the first time I seemed to go on autopilot and it came natural. As the kids get older the diapers are definitely more disturbing and can induce a dry heave now and then but the duty of the parent overrides everything. So it is great that I have progressed.

Every couple hours, when Sue was feeling up for it, we would go for a trip from her room to the NICU to see Luke. Each time we went we were encouraged by comments of the nurses and doctors. Luke was progressing well. He started to digest his feedings, needed less help with remembering to breathe and just looked like he was getting the hang of things. After a few days Sue was discharged and we headed home. We now travel down to the hospital two or three times a week, sometimes staying at a hotel for a little extended stay.

About 4 weeks has passed and we are in a position to possibly move Luke to a hospital closer to our area. He has been gaining weight (at the time of this writing 3 lbs. 4oz.) and he is doing everything but eating on his own. When he is moved to a closer hospital his only jobs will be to learn how to eat from a bottle and grow. He will probably have another 3 or 4 weeks in the hospital before he can come home. Each hospital has their own criteria for when a baby is ready to go home including a target weight, breathing infractions, feeding proficiency and others. We were truly blessed by the fact that Luke and Sue did not have any major complications or setbacks. We are also blessed with all the family, friends, doctors, nurses and strangers that have kept us in their thoughts, prayers and helped through the whole situation. We are extremely grateful.

I sat on my stool holding Sue’s hand trying to say things that would take her mind off of what was going on on the other side of the curtain. As the doctors worked there were moments where she started squeezing my hand tighter and tighter. At one point a nurse asked us to stop holding hands because Sue’s squeezing was making one of the sensors on her hand read as though there was something wrong. The doctors kept working and vocalizing some of the things they were doing. Occasionally, Sue’s body would sort of be pulled from one side to the other as the doctors positioned her to get a better look at what they were doing.

One of the nurses that was on our side peeked over the curtain. He then asked us if we knew what we were having. We told him it was a boy and his reply was, “Yep, it’s a boy and there he is!” Then we heard a tiny little squeak that I can only liken to a tiny kitten. It was our baby boy. I felt relieved that the delivery appeared to have gone well. I felt a little fear well up in me because I was about to meet my third son eight to nine weeks too early. How small is he? Does he have all his fingers and toes? Is he ready to learn how to mow the grass? I’d be lying if I said I only thought rational things.

After about fifteen minutes after they removed Luke one of the nurses came over and asked if I would like to see him. “Yes!”, I said sliding from my stool. “I want you to realize that he is much smaller than you are used to seeing, so you are not caught off guard.”, the nurse said as she led me over to where Luke was being cleaned. When I looked at him I was actually surprised at how big he was. In my mind I was thinking he’d only be as big as my hand. He certainly was not the brute that my second son was but he was not that teeny tiny either. Maybe about two or three handfuls. Still, he was a scrawny little guy that just seemed like putty in these skilled nurses hands. I quickly counted his toes and fingers and looked for any possible issues that may be visible since he was so early. I could not see one thing wrong with this little boy. He looked perfect…just small. His skin was a pinkish red, he had some both dark and light hair on his head and he wiggled like a worm. To bring myself down to earth I asked the nurses if we are “not out of the woods yet” and they seemed to understand and rattled off things they will have to keep a lookout for since he was a preemie.

I got to take a few pictures of Luke just before they bundled him up. “Lets take him to see mommy”, the one nurse exclaimed. Carrying Luke like he was a football the nurse made her way back into the delivery room to the good side of the curtain. She held out Luke for Susan to see. It was a very intense moment. Sue gave him a kiss and off he went to the NICU. I hung around for a little while with Sue as the doctors stitched her up. They turned on a classic rock station and started talking about various unrelated things while they worked. A few times they would stop their conversation and call out all the tools they used to ensure all of them were accounted for…thankfully they did not leave anything inside Sue. One nurse realized I was still there and ushered me out saying that she thought I left with the nurses. Before I left Sue told them that she did not hear her lullaby. At this hospital, every time a baby is born they play a little snippet of a lullaby over the intercom all throughout the hospital. No matter where you are in this hospital, except in the delivery room apparently, you know when a new baby came into the world. The doctors said they will make sure they play it again when she is in the recovery room.

Back out in my comfy chair I waited for them to bring Sue out. I sat there rehashing some of what had happened in my mind. I looked at the pictures I took and marveled at that precious baby. Oh crap! I forgot my mom was still here in the waiting room. I dutifully left my chair and made my way out to where everyone waited to hear the news of their new baby. I told her everything went well and showed her the pictures. After she left I resigned to make a number of phone calls to inform everyone of the baby. The great grandmothers were first to be told and they both prepared to call everyone they know. It was kind of therapeutic making each call and letting them know everything was alright. When I was done I finally made it back to the recovery room where Sue was waiting. She still did not have any feeling in her legs and there were other things they look for before moving her to a room. While we waited, we looked at the pictures I had taken and talked about our experience. The nurse informed us that when they felt Sue was ready they would first wheel her to the NICU to see Luke before we went to her room.

I was in a sort of disbelief. How could they want to take the baby when all the tests were coming back with rave reviews? One of the tests they did twice a week was an ultra sound that used some sort of doppler technology to monitor the blood flow in the umbilical cord. This being one of those days they notice the blood flow not going in and out as is normal. The blood was going in but not coming back out. This was one of the key flags that the doctors were looking for from the beginning. I told Sue I’d be on my way once I called my mom.

My mom was at work but got clearance to leave because of the situation. At least, I think she got clearance. “Mom, any chance of you getting out of work early?”, I asked. “Why?” she responded with a hint of panic. “They are going to take the baby in a few hours.”, was my reply. “Oh no! Is something wrong? Ok!”, she said with more hints of panic. I had to calm her down over the phone as the panic was starting to swell. “They are not going to take the baby for another 4 hours so we will get there in time. Just calm down and lets drive down.”, I said a bit surprised at my repose.

About a half hour after I hung up the phone and popped a Pepcid we were on our way down to the hospital. My main anxiety is traveling and I found that Pepcid keeps the nervous stomach acid from adding to my stress. It’s easier to deal with the mental games when you do not have to also contend with an upset stomach. The trip down to the hospital went by without a hitch and we were at the bed side in just under two hours. Sue was a complete trooper and did not show any panic or nervousness when we came in.

A nurse came in a few minutes after we arrived stating we will be going in in an hour and she will bring the necessary operating room garb for us. This is my third venture into the operating room to be with Sue while the baby was delivered and it was not any easier than the first. All three times I made it clear that I will not be seeing the baby extracted from Sue’s stomach unless they want to have the additional trouble of reviving a father who passed out on the floor. When our second was born I was able to see him very soon after he was removed and took a peek at what was going on on the other side of the curtain. It was a bit too messy for me to make heads or tails of anything so I was safe.

After some small talk and a quick prayer it was go time. We both slipped into our O.R. clothing, Sue was placed on a gurney and we began our journey down to the delivery rooms. There was a well used comfortable chair positioned outside of the main door to the operating rooms and I was told to sit there until they prepped Sue for the delivery. “We’ll be back in about twenty minutes.”, the one doctor exclaimed. So there I sat with my bluish green clothing and my thoughts. A lot of things went through my mind as nurses and doctors passed by busily looking at tomes of papers or their smartphones. One minute I was rehearsing what was going to happen in my mind, the next I was trying to get my mind off of what was going to happen. I think I was skating the fine line of insanity.

About a half hour later a nurse opened the main doors and told me it’s time to go in. I left my comfortable chair and began the walk passing a number of other operating rooms. We got to the door and I was ushered inside. There was a small stainless steel stool next to my wife on the “safe” side of a curtain that went up from her shoulders. Sue was laying there on the table with her arms straight out from both sides. There was an oxygen tube in her nose and little sensors placed on her arms and chest. She looked like her nerves were starting to get the best of her. When you see someone in that position and uncertainty in their eyes you know your job is to try to keep them from their own minds. That is a much more difficult job than you would think.

When we saw the hospital come into view I started to feel a little relief. I really did not know what was in store for us but just seeing the hospital made me think that everything was going to be fine. We parked the car and slowly made our way inside to the information desk. The secretary directed us up to the Labor and Delivery unit on the third floor. After quickly meeting with a few nurses we got our room assignment and tried to settle in. We didn’t get a chance to pack anything so we literally just had the clothing on our backs.

Sue got setup in her bed and they put the same stress test monitor on her that we saw at the specialists office. They turned the volume up on the machine and our little boy’s heart sounded like a horse galloping. Periodically nurses would come in, take Sue’s temperature and blood pressure and ask if either of us needed anything. This attention gave me even more piece of mind with how things were going to turn out. Everyone from doctors to nurses to food service provided amazing courtesy and compassion.

After one of the doctors came in and explained everything she observed we learned that our baby could be due any time from now until fourteen days from now. Talk about uncertainty. After saying my goodbye I drove home to be with our two boys. I was not ready to try and explain what is happening to the boys. So when I got home I was pleasantly surprised that Sue called and told them everything. I also learned that my grandmother called every church and monastery around the world to get Sue and the baby onto their prayer list.

A few days into Sue’s stay at the hospital I brought the boys down to visit with mommy. Being Mr. Mom for a few days gave me a great sense of accomplishment but I also gained a whole new respect for Sue, making meals, cleaning up, entertaining and the whole slew of other responsibilities with managing the house. The boys absorbed every minute with their mom and we had a great visit. I just wanted to bring her home with us but I knew with the uncertainty she had to be here until the baby came.

When we got home I got a big help from Sue’s mom who traveled down to lend a hand with the boys while I worked. I was completely relieved when I knew that I could get work done and did not have to worry that the boys were torturing the dog or scheming to do something harmful to each other. After a few days we made another trip down to visit mommy.

Throughout the week the tests and results stayed the same. It actually almost seemed like Sue might be coming home with all the positive things the doctors were saying about the baby. “Everything is looking great.” , “He’s doing really well”, “The baby looks in great shape.” were a few of the comments Sue would hear from the technicians and doctors. I started to think the baby might catch up in growth and come out with a semi normal birth weight. Sue and I would talk every few hours during the day to see if there was an update or to let the boys talk to mommy. She then surprised me with a call while I was working. “Hi honey, how are you feeling?”, she said to me. I replied with, “I’m doing OK, how are you?” She then took a breath and said, “They are going to take the baby today.”

If I could sum up in one word the first installment of Supper Club for the new year I’d say…”FUN”. We hosted the the January edition of the supper club on Saturday and everyone seemed to have a blast. The meal included a veggie platter from Bobby Jo, Chili, Potato + Ham Soup and bread by Sue, corn bread from Elisa and brownie ice cream sandwiches from Annette. Needless to say it was an extremely tasty and filling feast.

The kids all ganged together and played with various toys and games. At on point the games and toys became second hat to a new game called “Pile on Nathaniel”.(see pic) Thankfully no one was majorly hurt but there may have been some bumps and bruises.

Kids attempting to pile on Nathan.

Kids taking a break after a crazy time downstairs.

As time goes on you really start to realize your limitations both physical and mental. At some point you can not do the things you used to without acquiring some aches and pains. Not that I had the best memory to begin with but the memory seriously starts to dwindle. You end up not worrying about remembering things that there’s a slight chance you won’t need to repeat again.

There is also a point where you do not wish to remember your birthday because the years are piling up. Heck I honestly struggle to remember how old I am as it is and I’m only 35…or is it 36? I think it was almost 10 years ago that I was asked my age as a bouncer was looking at my ID and I honestly couldn’t remember. Didn’t Einstein not know his own phone number?

Anyway, my wife and boys surprised me on my birthday with some Pittsburgh Penguin clothing including this awesome authentic jersey. Talk about a surprise! Now I can get geared up each time we park ourselves in front of the TV to watch the Penguins.

Go Pens!!

(Written by Susan)
Day 7
The day begins and I am feeling great. I have my usual Chex with Craisins and all is good. For lunch, I heated up the leftover pizza in the oven which allowed the crust to become crunchier. Today, the pizza tasted even better. Greg and I agree that we would like to continue using this recipe. Along with the pizza we had a tossed salad with our favorite sweet Italian dressing.

Shortly after lunch, we headed out to a birthday party. Our friends were great about having foods that were safe for Ryan to eat. He was able to have treats from the prize bucket (tootsie rolls), chips and ice cream. I received notice in advance that there would be cupcakes for the kids, so I made sure to bring a cupcake for Ryan so he would feel included. Ryan had a great time at the party and he even received an ice cream bowl containing treats that were safe for him as a party favor. I can only hope that all the parties Ryan attends will be so accommodating.

We had a special dinner to conclude my gluten free week. Greg helped me prepare a roast chicken with roasted red potatoes, sweet potatoes and carrots. I baked a loaf of gluten free bread in my bread machine and we also prepared cold slaw as a side dish. To complete our delicious meal, we had strawberry shortcake. The shortcake tasted amazing and was a great way to finish a very successful week. I am excited to continue to eat gluten free foods and to prepare meals for my family which are healthy and safe for everyone to eat!

(Written by Susan)
Day 6
Another morning and another bowl of Chex with Craisins filled my belly. This morning, however, I was hungry by 10:15 and decided to have some popcorn. For lunch, I had leftover ham and potato soup with a couple of dinner rolls. This soup is great the first time around and it is even more delicious the second time around. For a snack I had some grapes to satisfy my cravings for something sweet.

I decided to try a new recipe for pizza crust using my bread machine. The dough came out extremely sticky, but I managed to roll it out and shape it into thin circles. After baking the crust, it turned out crunchy on the outside and chewy on the inside. The crust had a rice flavor to it, but Greg and I agreed that it tasted pretty good. Ryan on the other hand did not like the new crust. He did not want to eat the new pizza and begged for his old pizza. The crust he loves has oregano, garlic and basil in it. Next time I will add these ingredients to my mix and see if Ryan can be persuaded to like it. The day would not be complete without trail mix, so of course, I just HAD to have some after dinner.

Next we headed to Wegmans and Sam’s Club to buy some groceries. This was by far the most difficult part of my week. Until now, I had been surrounded by foods that were safe to eat and I did not have too many temptations near by. If you have not experienced Wegmans baked goods before, you are missing out on some of the most delicious breads and sweet treats. Unfortunately all of them contain gluten. So we went into the store to pick up some fruit and gluten free items, both of which are located just to the right of the bakery. The sweet aromas were so tempting. I refused to let my eyes even look at the baked goods. Ryan did not seem the least bit bothered by the bakery section, thank goodness. Next was Sam’s Club, which also has a bakery section. We walked right past the cakes to get to the food items we were looking for. As we were passing by Ryan said, “Mom, that strawberry cake looks delicious!” It broke my heart to see all that food that Ryan could not eat and possibly never be able to eat. I never realized how difficult it must be for someone with food allergies to even go to the grocery store.

Ryan’s situation is a little different from a lot of people who have Celiac disease. He was diagnosed at such a young age, that he has almost exclusively experienced gluten free foods. Ryan is so accustomed to his food that he does not even seem to be tempted by foods containing wheat. I have noticed that Ryan had found comfort in the fact that his food was only for him and no one else. I do feel a little guilty this week for taking this away from him. However, I think the benefit of this experience has been worth it. Greg and I would like to try to cook only gluten free meals now. It has felt so good this week to have only gluten free foods on our dinner table. There was no separate bread or butter for mommy and daddy which could not come in contact with Ryan’s food. Also, I did not have to cook separate foods such as pizza for Greg and me and a separate pizza for Ryan. I feel like our family has been united at the dinner table, which is very satisfying.

(Written by the Wizard)
As we sit at the dinner table our youngest one cries. He is not interested in eating and when given any food he just throws it on the floor for the dog to eat. Dominic does this a lot. He very well may be hungry but he is a super stubborn little boy and when he does not feel like being in his chair he chooses not to eat. My wife and I continue to eat. We attempt to give Dominic some food hoping he will give in and start eating. “Here Dominic, you like potatoes, try it.” The potato goes on the floor. “Dominic eat this piece of chicken.” The chicken goes on the floor. On Saturday Dominic did this exact routine. We wanted to go out and get some odds and ends from Sam’s Club so after dinner we hopped in the van and went for the ride. Sue brought along Dominic’s dinner and at various times throughout the trip tried to feed it to him. He was not having it. Our total trip time was about two and half hours. That stubborn little boy waited until we got home and eventually made us give in. He had to eat something! So while he curled up in Sue’s lap he munched on gluten free pretzels and water.

Ryan, being the observant one that he is, sees how things happen with Dominic and his stubborn ways. While Ryan is not anywhere near as stubborn he realizes how he can leverage things into getting what he wants. I am much tougher on Ryan and usually make him do things how he is expected. But that certainly does not stop him from trying. Usually, before lunch or dinner Ryan is playing. Either we are playing some sort of game like hockey or Wii or he is playing by himself. When lunch or dinner time comes around and he does not want to eat he will start complaining that his stomach or chest hurts. Normally this would cause alarm but it only seems to happen just before he is about to eat and after he needs to stop playing.

These boys are really learning how to manipulate people starting with their parents. I’m sure many parents out there have their own stories of similar habits from their kids.

(Written by Susan)
Day 5
Shortly after I wake up each morning I feel starved. For the past two mornings I have not felt hungry until about an hour and a half after waking up. We will see what tomorrow brings to see if this is a coincidence or related to my new diet. I had my usual Chex with Craisins which again kept me feeling full up until lunch time. For lunch today I was expecting to be disappointed. We were out of the house and I packed three leftover dinner rolls (2 days old) with soy butter and all natural fluff. Ryan has “fluff-r-nutters” nearly every day. I have tried them in the past on regular white bread and I never enjoyed eating them. If there is nothing in the house to eat I might resort to eating a fluff-r-nutter sandwich even though I really didn’t like the soy butter. Today, I actually enjoyed eating my sandwiches. The soy butter did not leave a funny aftertaste and the sweetness of the fluff tasted great with the rolls. For a healthy accompaniment I had several celery sticks.

This afternoon for a snack I decided to mix things up a bit and have a large piece of oatmeal bake in place of my trail mix. That oatmeal bake has been a great alternative. For dinner I fixed a tuna fish sandwich on a dinner roll and a tossed salad with shredded cheese on top. I found a ranch dressing that is gluten free and topped my salad with it. Looking for something crunchy to go with my dinner, I had some corn chips. Tonight, my sweet tooth struck and I had to have a small bowl of trail mix along with a cup of hot tea. That was a yummy combination!

I am feeling very good after five gluten free days. My body feels satisfied and I do not feel bloated like I have felt in the past. Now I am thinking about extending my gluten free diet for another week to see how my body is feeling. I don’t know that just one week is long enough to make conclusions about the impact of one’s diet.