My wife Lori and I recently experienced first hand the emotional roller coaster ride after having our daughter Caitlin six weeks early. In the best case scenario, a preemie will just need a few extra days to adjust to life outside the womb; however, in many cases, the baby experiences complications that need additional care before coming home.

Our little girl had a severe intestinal infection, which was diagnosed as Necrotizing Enterocolitis. Her condition also caused a series of related complications, which ultimately kept her in the Neonatal Intensive Care Unit for 23 days after being born.

During the experience, I wrote a series of blog posts to try and capture the essence of what our family went through.

Introducing Baby Caitlin
Premature Labor – Dealing With the Unexpected
Premature Birth – Not Quite the Joyful Experience
Premature Hope – The Calm Before the Storm
Premature Confidence – The Long Fall Down
Premature Panic – Hitting Rock Bottom
Premature Heartache – Darkness before Light
Premature Doubt – Emotional Overload
Premature Anguish – A Repeat Performance
Premature Distraction – Both Kids Get Sick
Premature Patience – Waiting for the Other Shoe to Drop
Premature Relief – Our Preemie Comes Home!

Writing these posts was one of the hardest yet most therapeutic things I’ve ever done. I have a tendency to shut down when stressful things happen to me, but I tried not to do that this time. I tried to remain open and channel all of the positive thoughts and energy sent to me from friends, family members and readers to our little Caitlin, who needed all the love she could get.

There were times when Lori and I thought that we couldn’t handle one more thing going wrong, but then we’d get a phone, e-mail, Twitter message or blog comment letting us know we weren’t alone. It’s amazing how powerful small amounts of encouragement can be when you really need them.

Every bit of love shared with us was passed on to Caitlin too! And, look at her now, you would never know that there was anything wrong. She is truly a fighter, and I am so proud of her!

Thank you all very much! We sincerely appreciate every little thing done to make this emotional journey bearable. I’ll be sure to keep you updated on Caitlin’s life as she grows into a happy and healthy little girl!

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Lori and I both woke up early yesterday morning. The doctor confirmed for us the day before that the Necrotizing Enterocolitis was probably not going to reoccur. She said the only stumbling block to bringing Caitlin home was gaining weight. As long as she went back in the positive direction, then we could take her home.

Lori called the NICU to see if Caitlin gained weight, and whether or not the doctor made a decision about her coming home. The nurse said Caitlin did gain back what she lost the day before; however, the doctor was in the middle of rounds and had not made a decision yet.

In order to kill some time, I checked e-mail and messed around on Twitter. Lori got dressed and ready to go. It’s amazing how slowly time moves when you’re watching the clock.

Finally, shortly after 10:00 a.m., Lori came walking downstairs with a disappointed look on her face. She came into my office and sat on my lap. Then, she looked up at me and smiled, “Our little Caitlin is coming home!!!”

Hooray! Woot! Woot! Man, what a relief!

Caitlin is a fighter, and I am so proud of her. I couldn’t wait to go get her. It had been 23 days since she was born, and we had been confined to an 6′ x 8′ area in the NICU for that entire time. I was looking forward to seeing her without all the wires connected. I wanted to walk around freely with her, like normal people do with their healthy babies.

Caitlin had overcome a major infection in her intestines, as well as a cascade of other problems associated with it. She had experienced things in her first three weeks of life that I wouldn’t wish on my least favorite person in the world. She drove me and Lori both to tears on many occasions, but yet she always remained strong. Her little body did an amazing thing – it healed.

Here’s a brief photo montage chronicling some of the experiences we had over the past 23 days:

Over the course of this time, I was surprised and humbled by the tremendous support and outreach our family and friends provided. Caitlin had thousands of people praying for her, or sending positive thoughts and well wishes; and, we can’t thank all of you enough for your kindness and consideration.

Some say they don’t believe in the power of positive thinking, or the power of prayer. I say that those people have probably never had to go through an experience like this. Each one of you helped to bring Caitlin home with every thought, prayer, card, phone call, e-mail, Twitter message or post comment.

I hope that you will all join me one more time in sending baby Caitlin a positive message:

Welcome Home Caitlin!!!

Thank you all very much. I’ll be sure to give you an update on how Miss Caitlin is doing shortly. Between her, Ty and Chani, I should have lots of great stuff to share this summer!

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It was Saturday morning, and Caitlin was just six days old. It’s hard to explain the effect of being in the NICU on parents, especially if your child has problems. The hours seem like days and the minutes like hours. It always seems like your waiting for the other shoe to drop or the next bit of bad news.

This morning though, we actually got some good news. Our perky nurse told us that the doctor wanted to talk to us about the x-ray results they received from a few hours ago. Even though she seemed like it was going to be good news, Lori and I remained cautious and skeptical. We did notice that Caitlin’s color seemed better, and she wasn’t grimacing as much while sleeping.

A few minutes later, the doctor came over and asked us to follow her to the office, so we could look at the full series of x-rays in chronological order. At this point, it had been about 32 hours since the initial diagnosis of Necrotizing Enterocolitis and treatment began (stopped all feedings, in order to let her intestines rest).

She pulled up the first x-ray, and it showed a widespread presence of air pockets throughout her entire intestinal system. The, second x-ray looked pretty much the same. Then, she pulled up the x-ray from this morning. It was unbelievable. A day earlier it looked like a mass of black tubing, now it looked like clear white tubes with only a few spots of black air pockets remaining. It was a miracle, and the doctor said she was very pleasantly surprised. Normally, it takes at least 48 – 72 hours to see this kind of progress, she said.

It was the first bit of good news we had received since Caitlin was born.

The doctor told us that she wasn’t out of the woods yet; however, she did feel that the risk of perforation of the intestines (which produces an estimated 25% mortality rate) was probably over. Our little girl was going to be OK, and Lori and I could breathe a little easier now too.

The doctor did say that even though the major risk had subsided, there were still many other concerns that needed to be monitored and corrected during the healing process. Her jaundice levels needed to come down; she had developed a slight heart murmur; her white blood cell counts dropped significantly to fight off the infection; and, she was also becoming anemic.

Finally, the doctor said that Caitlin would need to continue taking antibiotics and remain on intravenous nutrition for at least 10 days. She recommended that Lori use the opportunity to stockpile breast milk and freeze it, as this would be more easily tolerated by Caitlin once feedings were reintroduced.

If everything went well, then Caitlin might be able to come home in a few weeks, after her intestines were healed, she was eating normally, gaining weight and free from any of the other issues that had arisen.

And so, we waited. And prayed. And waited. And prayed. And waited some more.

On Monday – Day 8 – I took Ty to the pediatrician’s office to check on his cough, which had worsened over the weekend. He didn’t have a temperature and his ears and chest seemed clear, so they said we’d have to “ride it out.” I hate when they say that, even if it is the right approach. Going to the doctor’s office and not getting a prescription is like going to Starbucks and not getting any coffee.

On Tuesday – Day 9 – The doctor finally said we could hold Cailtin again. It was so nice to snuggle with her! We could only hold her for an hour, but it was an awesome feeling.

On Wednesday – Day 10 – I got a call at 2:00 a.m. from the doctor saying that Caitlin’s PICC line (central catheter line) had punctured a vein and dumped her nutritional supply into her body cavity. He did an x-ray to make sure nothing got into the lungs or heart and, thankfully, it didn’t. It did cause some noticeable swelling that might take a few days to go down. The bad thing about this was that they had to remove the PICC line and put in a regular intravenous line, which meant Caitlin would have to go through the surgical procedure again to get another PICC line reinserted within the next day or so.

On Thursday – Day 11 – The doctor could not get the PICC line to insert properly in either of Caitlin’s arms, so on the third try they finally got it to work on her leg. Ty and I were both sick this day, so I stayed home with him and just drove Lori to-and-from the hospital.

On Sunday – Day 14 – Caitlin took her last dose of antibiotics, and she was reintroduced to minimal bottle feeding (3 cc’s) that evening. We finally got the majority of the finishing touches done on Caitlin’s room, which is pink with a capital P! My mom flew into town to help us with Ty for a few days and see Caitlin. It was really nice to have her here to give Lori’s parents a break, as well as provide an opportunity for Ty to get to know her better. She was great moral support for me and Lori too.

On Monday – Day 15 – as the feedings progressed, Caitlin started having trouble digesting her milk again. Instead dumping from her stomach into her intestines, it was just sitting in her stomach. The doctor decided to switch her over to a partially digested formula, which would be easier for her body to process. At this point in time, we wanted to see two things: 1) no residual formula in her belly after 3 hours of feeding, and 2) a ginormous poop that proved her intestines were working again. Again, we waited patiently.

On Tuesday – Day 16 – Caitlin’s bowels finally started working again, but she did require a suppository in order to get even a tiny bit of poop to come out. Her bilirubin count also came down enough to remove the phototheraphy blanket. One more item checked off her list of problems.

On Thursday – Day 18 – Caitlin was processing the majority of her milk with each feeding, so they decided to start mixing the formula with breast milk. Lori still wasn’t able to breast feed directly yet, as they needed to measure every bit of food intake she had. It was clear that her stomach and intestines were working now, but Lori and I were very nervous – this is about the time frame after starting to feed that the NEC first reared its head (no signs of it coming back yet though). My mom left to go back home this day – we were so thankful for her coming to help!

On Friday – Day 19 – Caitlin was fiesty this day, which was great because it seemed like “normal” baby behavior. I was holding her and started to feel something wet on my leg. At first I thought she peed on me, but then I realized it was blood. After further inspection, Lori and I noticed that she had snapped her PICC line in half and all of the nutritional stuff was seeping out onto me. They tried to repair the line, but no luck. They had to put a normal intravenous line back in her arm. Ty was still sick, and I was continuing to work on less than five hours of sleep each night.

On Sunday – Day 21 – The first real talk about Caitlin coming home happened. Lori didn’t want to get her hopes up, so she said that she would happy if it was in a week. I wanted it to be sooner, but I chose only to express that too Lori. The doctor said that we should bring in the car seat so the nurses could make sure it was OK, and then it would just come down to her feedings, weight gain levels and anemia. Caitlin’s new weight was six pounds six ounces, or one full pound more than at birth.

On Monday – Day 22 – Caitlin passed her car seat test, and the test results for the anemia came back favorable. The only problem was that she lost weight, so the doctors wanted to give her some more time to get back on track. Ty was still coughing like crazy, and overnight he threw up again on me and his bed. The pediatrician said we needed to “ride it out” though, so damned if we weren’t riding ourselves into delirium.

The waiting game was almost over, but no one actually said to us that the NEC was completely gone and would not return. So, I asked the question.

Would the NEC return? Would Caitlin gain weight again? When will Caitlin come home? …..

I’ll post more about our story soon. In the meantime, feel free to get caught-up by reading the Related Posts below and see pictures of our baby girl Caitlin Arielle.

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Lori and I crawled in bed exhausted from a long, emotional day at the hospital with Caitlin. Neither of us had gotten a good night sleep in six days, so even though I was worried about our little girl I quickly fell into a deep sleep.

A few hours later, I was awakened by the sound of our son Ty coughing and whining in his bed. I knew that Lori needed to sleep – she did have a baby just a few days ago. I also knew that our in-laws were exhausted – they had been watching Ty the past several days. I didn’t want to wake them either, so I jumped out of bed and stumbled over to Ty’s room.

When Ty isn’t feeling well, he likes for me to lay down next to him and snuggle. I was tired, so I didn’t even try to pat him back to sleep. I laid down and he snuggled into my chest. Then, he started coughing again. And again. And again, more violently.

I tried to rub his back but that only seemed to make it worse. I tried to sit up with him – no luck. I tried singing to him – he smacked my face…in between coughs. I tried everything – nothing worked. After twenty minutes or so, he finally coughed so much that he gagged and threw up all over me and his bed.

I rushed Ty downstairs to clean him up and make sure he was OK. I got him a drink of water to clear his throat. I washed off his face and arms, and I changed his clothes.

A few minutes after we got downstairs, he was fine. He actually wanted to play. He was asking me questions. “Daddy, what doin’?” he said. “Cleaning up,” I said. “Tommy?” he asked. “You want to watch Thomas [the train show]?” I asked, a little surprised but too tired to wonder why. “OK!” he said happily and started to dance around. I had to smile, as I turned it on. It was 3 a.m.

I finally got everything in Ty’s room cleaned up and remade for sleeping shortly after 4 a.m. I got the laundry going too, so that nothing would stain or smell. I washed Ty and myself off, but I couldn’t completely get rid of the puke smell. I wasn’t about to get in the shower though.

I took Ty’s temperature, and it was completely normal. I gave him some cough medicine, and then I laid down on the couch with him and turned the TV off. He coughed a few times, but I was able to get him back to sleep. I put him in bed at 5 a.m.

Saturday morning came fast. You know how it feels when you wake up and it seems like your head just hit the pillow? You slept several hours, but it only felt like a few minutes? That’s how I felt Saturday morning. I had bags under my eyes, and my ass was dragging. No amount of coffee was going to help me, but I drank several cups anyway.

Lori appreciated that I got up with Ty. She gave me a big hug and kiss, “Thanks honey! How do you feel?”

“Great!” I said, jokingly. “Ready to go!”

The reality of needing to get back to the hospital set in quickly. Both of us wanted to get an update in person from the doctor. We were fortunate to have Lori’s parents helping us watch Ty, so that we could go to the hospital together.

I gave Ty a kiss goodbye, and he said, “All better!” He was sitting at his indoor picnic table, watching one of his shows. He smiled and said, “Bye! See you later alligator!”

It was really cute, and I hoped that he wasn’t getting seriously ill. Maybe it was just allergies? It’s hard enough having one kid sick at a time, let alone one in the hospital and one sick at home.

When we got to the NICU, Caitlin’s nurse seemed particularly perky. “Hi guys!” she said enthusiastically. I felt like smacking her. Why was she so chipper? Didn’t she know that our little girl was extremely sick? Didn’t she know that our son was up most of the night? Didn’t she know that I was on the verge of a physical breakdown (and mental meltdown)?

What the hell was she so happy about? …….

I’ll post more about our story soon. In the meantime, feel free to get caught-up by reading the Related Posts below and see pictures of our baby girl Caitlin Arielle.

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So there we were, sitting alone in the multipurpose room again. As soon as we sat down, I could tell that Lori’s mind was racing, and mine was too. Compelled by anxiety, both of us walked into the lobby area and peaked around the corner to try and catch a glimpse of what was happening. We saw a crowd of nurses, doctors and techs around Caitlin, but we couldn’t see what they were doing.

“What’s happening,” Lori asked. “What are they doing to her? Can you see?”

“No, honey,” I said. “I can’t tell what they’re doing.”

The receptionist asked us to please wait in the multipurpose room. She said that the doctor would come talk to us in just a moment. We asked her if she knew what was going on. She said she didn’t.

While frustrating at times, I was actually impressed at how well the entire staff of nurses and support people were trained NOT to divulge information to the parents. They always let the doctors explain what was happening, so that we got accurate information and no false hope.

We sat back down in the room, holding each other’s hands, just like earlier in the day. We were both emotionally exhausted. Lori had cried so much that her eyes were all puffy, and her normally pristine make-up was disheveled and splotchy.

“Caitlin’s going to be just fine,” Lori said with a positive tone. “I know it – she’s going to get better and come home with us, and we’re all going to be happy.” By the time she got the words out, though, I could see a tear in her eye and knew that she was really giving herself a pep talk.

I smiled and agreed, although I could feel myself starting to get worried. I hate waiting, and each moment moved passed slowly by with no sign of anyone coming to talk to us. What were they doing? Patience is a virtue, but it’s not one of mine. I could feel my heart beating faster, and it was everything I could do to contain myself and remain calm. I needed to stay positive for Lori – I thought – because she was already stressed and I didn’t want to make things worse.

Finally, about the time I thought I’d explode, the doctor came in to see us.

“What’s wrong with Caitlin?” I said rather abruptly. “Is she alright? I mean we were only gone for an hour or so – what could have happened so quickly?”

The doctor said the nurse thought that Caitlin was in a lot of pain and that she was having trouble resting. After examining her, the doctor agreed. She decided to administer another dose of the Fentanyl, only this time she ordered a much lower amount.

Twenty minutes after giving her the pain killer, she had another apnea (stopped breathing) and they had to resuscitate her gain. Caitlin was stable now though, so the doctor assured us that we didn’t need to worry about that particular thing (only all of the other scary stuff she was going through).

The doctor said we should make a mental note for later in life that Caitlin may not be able to tolerate narcotics without a severe reaction. She told us Caitlin would not be able to receive any more pain medication, unless absolutely necessary; and then, they would try a different family of drugs to attempt to avoid another apnea episode.

It’s hard to know what to say during this type of conversation. You don’t want to see your kid in pain, but more than that you don’t want to see your kid stop breathing. We told the doctor we would prefer that Caitlin not be given any more pain medication, unless absolutely necessary; and, we politely asked to be consulted prior to giving it to her, to which the doctor gladly agreed.

We thanked the doctor for stabilizing Caitlin again, and then we went back to see her. When I looked at her, I could just tell that she had been through a lot today. She had bags under her eyes; her skin color was yellowish from the jaundice; she had bruises in all of the previous places that the intravenous lines had been; and, she periodically grimaced and squenched her eyes.

She was responsive to our touch, even though we could only hold her little hands. She tightly squeezed our fingers, as if to say, “Please, don’t leave me alone here.”

We stayed by her bedside late into the evening, until she finally seemed to fall into a deep sleep. Lori and I were exhausted too, so we begrudgingly decided to go home.

“I hope they don’t call us with any bad news tonight,” Lori said, as we walked down the hall toward the security exit.

“Yeah, me too,” I said. “Everything is going to work out – Caitlin’s a little fighter, and I’m sure we’ll get some good news in the morning.”

Later that night, I was awakened by the sound of a crying baby…….

I’ll post more about our story soon. In the meantime, feel free to get caught-up by reading the Related Posts below and see pictures of our baby girl Caitlin Arielle.

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