Family

BABY LIAM - 260 Hours to Home

After close to 10 months of an amazing pregnancy, Liam’s due date of May 5th, 2013 was a week away. Monica was in great shape and had experienced practically no labor pains, limited hormonal complaints and was gripping strong to consistent social involvement with friends and family. At the final Dr. appointment before “D-Day”, Dr. Chua decided it was time to schedule Monica’s induction.

DAY 1: May 5, 2013

The day started pretty slow with breakfast with family, but the time to get everything packed in the car and ready to leave for the hospital seemed to come so fast. On the way to the hospital we made the decision to stop at Jimmy John’s for one last meal before we were confined to the hospital. We came fully prepared, packing enough to fill a large bodied wheelchair to the brim and then some. The nurses thought we were moving in but did say they had see worse. We settled into room 5 at the Emory Johns Creek Labor and Delivery.

While Monica was getting prepped, answering a laundry list of questions and getting blood drawn and IVs in place, I attempted setting up our Apple tv, but to my dismay the hospitals pathetic LCDs were not equipped with an HDI port nor did I bring the standard RCA connections to make this awesome setup work. Fortunately for them, the hospital did have a decent cable setup so watching TV (mostly Peachtree tv) stole our attention and was amplified well with the connection of our Bose stereo. All the nurses were very surprised with the sound quality of the portable Bose stereo system and the biscuit was able to get soothed with a true and high quality sound. I wanted her experience to be top notch. I was doing an awesome job of catering to her every desire. My main concern was her comfort and an amazing birthing experience.

So the beginning of our induction would start with cervidil to soften the cervix. Upon arrival to the hospital as well as the weeks prior, Monica had not dilated at all so we were hopeful that the medication would get the process going, and as fast as possible. The cervidil would stay in for 12 hours and Monica would be checked the next morning to see how things had progressed.

After we got settled in our good friend, photographer, and wanna-be Douala, Elaine Hoyt, made her first visit to see how we were doing and hang out for a bit. She and I began our photo documentation while Monica was all snuggled up in bed.

DAY 2: May 6, 2013

We began the day with the removal of the cervidil and a check on the cervix. Unfortunately we were still at about 1 cm with doubts on how quickly things would progress. Now it was time to start the Cytotec, another tablet with the purpose of softening/ripening the cervix. These tablets would be inserted on 4 hour intervals, so depending on how things progressed we were looking at as much as 12 or more hours before they would even consider starting the Pitocin for contractions. Dr. Anthony was on call that day and came in to check on Monica’s progress, and during her exam she felt as though she was able to “stretch” to 2 cm, but we came to find that the measuring of cervical dilation is variable based on the person doing the exam! Following the exam, Dr. Anthony did want to prepare us that a C-Section could very well be our means of delivering Liam as she felt as though Monica’s pelvis was not conducive for delivery. According to Dr. Anthony, Monica’s pelvic bone was fairly flat in an area where it should be more pointed or curved. This was something Monica was concerned about as her mother too has a small pelvis, and came to find similar issues in the delivery process of her first child.

The question of Monica’s ability to deliver vaginally came up in various appointments with Dr. Chua, and she knew both Monica and I wanted to give baby Liam the chance to come on his own and experience as natural a birthing process as possible. And on top of that, I was also extremely terrified of having the love of my life, undergoing major surgery.

After two doses of Cytotec and little to no progress, Dr. Anthony decided to hold off on the 3rd dose to consult with Dr. Chua. After consulting, they decided to stop the Cytotec and go back to the Cervidil as it was something that could be removed if necessary. So we went into another evening with little progress and were now looking and hoping for delivery on Tuesday!

DAY 3: May 7th, 2013

Tuesday morning started off with some positive results from the various cervical medications. We made it officially to “2-3 cm” and it was time to get things moving. Dr. Chua came by in the morning to check things and decided it was time to try to break Monica’s water. The cervical exams were never comfortable, but the “attempt” at breaking the water was pretty awful! Dr. Chua was able to slightly puncture the sac before she decided to give Monica a break. She was able to get some fluid so she felt as though it was a reasonable time to start antibiotics (as Monica was Group B Strep (GBS) positive). It wasn’t long before the contractions began and Monica was gradually dealing less and less well with the pain. While Monica hadn’t wanted to use the IV pain meds, it definitely seemed to be a little too early to start the epidural.

After lunch time, Monica was feeling some relief from the pain meds. Dr. Chua came back and it was now time to really break that water, and get the Pitocin pumping. It was surprising how quickly things seemed to progress at this point. Contractions were coming and Monica’s pain levels began increasing! With the IV fluids already going, the nurse prepped her for an epidural and relief was quickly on it’s way! It was amazing the relief Monica got from the epidural, barely feeling contractions at all! But what was even more exciting was the fact that Monica began dilating faster after the epidural - She thinks it may have been because she was finally able to relax a bit. While it had by no means been a fast process getting the dilation going, the most progress was made between 1PM and 10:30PM Tuesday. When Dr. Chua stopped by that evening to check Monica, she had now dilated to 7cm! It felt like we were finally getting there! Monica and I joked that Dr. Chua would probably get a call at 2 or 3AM saying it was time! In any case it was looking like Liam would be born on Monica’s Mom’s birthday! While Monica had been hoping Liam would have his “own” birthday, it is a nice little birthday gift for Grandmom, and if Liam is anything like his Grandmother, he would be a very strong person!

The AM hours came and went without any sign of Liam, it was now onto Day 4!

DAY 4: May 8, 2013

As 9AM approached, Monica finally reached 10 cm of dilation and was fully effaced. The nurse on duty decided it was time to start pushing. I set the mood with some Zero 7 playing on Pandora, and some comfortable lighting. While by Monica’s side, I helped to hold her foot and leg as she pushed baby Liam during each contraction. Monica was surprised at how relaxed the mood was and how it didn’t feel as scary to push as she had imagined, even having pushed in 3, 1 hour intervals. And on top of that, the nurse was extremely impressed with Monica’s ability to push considering she had the epidural going!

While things were progressing, every time Liam would descend on the pushes, he would then reascend back when the pushing stopped. He just could not make it past her flat and small pelvic bone. In an effort to give Monica one last chance to birth Liam naturally, Dr. Chua decided to give a few more college tries with the aid of the vacuum. I was quite surprised just how much pressure Dr. Chua was using and yet Liam would still not yield the pelvic bone. It was then and only then that Dr. Chua made the executive decision that a C-Section was the only way this baby was going to arrive.

Dr. Chua and her team quickly wrapped up all their shiny tools and tables and exited the room. Monica was prepped and I was given a set of hospital threads to also prepare for the unknown. I, in all his life, had never felt more terrified of what was to come. Monica was so strong and reassuring me that “they do this everyday...” but I was still shaking and literally crying like a baby. I remembered the anesthesiologist making jokes trying to calm me down. Not even the funniest comedian with the most epic punchline could have pulled a smile from me. The one thing I did respond to was the ability to bring music into the operating room. I quickly pulled together the Bose stereo and my phone with all the cables. The Dr. later instructed I that all I needed was the phone. I think either way it was an opportunity to get me thinking about something other then the major surgery about to take place. The worst part of the this particular experience was having to sign off on the paperwork that legally freed the hospital from the potential liability of Monica and/or Liam’s death.

While I was waiting at the desk just outside the operating room, the staff were quickly adjusting and setting up the room for the C-Section. Monica had already been moved into the room. Then that fateful moment happened. They called me into the room and set me next to Monica on a black swivel stool. I began caressing her face and cheeks and with all my power, trying to maintain sanity. This was the last thing I ever wanted to happen and frankly it was the most terrifying experience I have ever had. But little did I know it was about to get worse.

Just behind Monica’s head was what appeared to be a large plastic container that slowly and then more quickly draining blood, the placement of this apparatus did not help with either my or Monica’s anxiousness. I begin to start breathing very quickly and another surgical staff member had to help calm me down. “You have to breathe slower, take slow, long and deeper breaths”. I remembered this being repeated several times. All I could focus on was how strong Monica was being. She never grimaced, cried or showed the slightest concern even though I was literally loosing my mind. It was actually quite ironic how at this given moment I recognized that the song currently playing over the room speakers was that of an episode from Grey’s Anatomy - I had been forced to watch several episodes with Monica as this was and is still her favorite show. It however was not an appropriate tune for the current situation and honestly only made things that much more emotional. And honestly with the events to precede it seemed fitting as it honestly felt like a scene from Grey’s Anatomy.

Then came a moment that I would never forget. An experience and memory that will always stay embedded in my mind. The baby was out, and Dr. Chua passed a little 5 lb and 13 oz lifeless body, over to a team of NICU staff. The team started yelling out questions like, “was there cord?” and began counting “One, Two, Three... One, Two, Three...” For what seemed like an eternity, this team worked on Liam to revive and get him breathing. Liam unfortunately had inhaled meconium and it was thick and even in his sinuses that they were not able to suction out without causing more issues. After a few endless moments, I was called over to see my little man. I remember standing over him, no color, no movements and what appeared to be no life. I began excessively hyperventilating, so much to the point where the surgical staff said “we need to get him out of here.” They quickly rolled a chair over for me to sit down. They knew I was a few breaths away from dropping to the ground. I was quickly rolled out and sat in the lobby while the doctors finished their work. I did not know what the status of Liam was nor that of my beloved life partner, Monica.

After a few moments, I was able to get up and walk outside where I met up with Elaine. It was everything that I could do not to break down again. We walked outside into the sunlight and Elaine knew that something was not right. I looked like a ghost and had no expression. It was not long before I received a text to return back to the labor and delivery room 5 where they would be returning Monica shortly.

I remember her bed being wheeled in and felt somewhat of a comfort seeing that she was ok. At the same time, while looking into each other eyes, we both knew the fear that existed in each of our hearts. What is happening with Liam? A period of about 2 hours passed before the NICU team came to the room with news about Liam. Dr Suskin, the neonatal specialist, entered the room and with a serious face and mannerism began to divulge Liam’s situation.

“Liam is a very sick little boy. During the delivery process Liam experienced a traumatic labor where at some point the flow of oxygen was cut off to his brain. Its commonly known as HIE (hypoxic-ischemic encephalopathy) where lack of oxygen frequently damages not only the brain, but other organs as well. Often these include heart damage with abnormal blood pressures or heart rhythms, liver damage with elevated liver enzymes, kidney damage with low urine output and abnormal kidney function, gastrointestinal problems with abnormal feeding, low or high tone with floppy or stiff muscles and/or impaired control of breathing often requiring ventilation. Many babies will not survive these injuries. Those who do often have permanent brain injury and may be ultimately diagnosed with hypoxic brain injury or cerebral palsy. But it is possible to have severe brain injury associated with birth that does not result in cerebral palsy. The location and extent of the brain injury will dictate what your child’s future limitations may be. In an effort to avoid any possible damage Dr. Suskin stated that they need to get Liam to the Gwinnett Medical NICU where they would administer Cool Cap therapy. “

The only hospital in GA that offers this Cool Cap therapy is the Gwinnett Medical NICU. Click here to learn more about Cool Cap therapy. http://www.natus.com/index.cfm?page=products_1&crid=284

Liam had to be transported to the NICU at Gwinnett Medical Center (GM) within the first 6 hours of his life in order to receive this therapy with the best chances of success. Now keep in mind Monica had not yet seen, touched or held our new baby boy. It seemed like another eternity waiting to get the next word. I quickly signed all appropriate documentation and waited by Monica’s side. I was called next to go back to the Emory Johns Creek NICU to see Liam before he was transported to GM. Liam was hooked up to every wire, tube and cable you could imagine. He was not moving and with camera in hand, I began to take photos and video so I could show Liam to Monica. The nurse on duty walked me through all the details about Liam, there was a tube inserted in the side of his left rib cage that was allowing fluid in the lung sac to drain as it was swelling. Liam’s acidity was extremely high and they were administering several different fluids though a tube in his belly button. He was on a paralytic to keep him from moving, dopamine to regulate his heart and blood pressure, morphine for pain, sugar, antibiotics for the acidotic (base), ampicillin and a few others I am not sure of. A tube was inserted into his throat to manually respirate him.

The transport team was on their way, and there was limited time, but Monica was wheeled in (bed and all) to see Liam before he was moved to GM NICU. Monica could barely see her little man and was able to just slightly caress his little toes before the transport team arrived. I went to gather my things, and the team quickly began prepping Liam and introducing themselves to Monica as they all had a specific role in this process of moving Liam. Monica signed some final documents and they had to wheel her away to get Liam in route. I said my goodbyes to Monica and was off to follow Liam over to GM.

I was not allowed to ride in the ambulance with Liam so my mother, Marty, drove me over in Monica’s car to GM NICU in rush hour traffic. Talk about a long and uncomfortable ride. Once arriving I quickly entered the NICU and was briefed on more information then I could ever expect to learn about HIE or cool cap therapy and what comes along with both. Dr Leigh was very informative and direct about Liam’s condition giving no ounce of assurance. Later Dr. Leigh would joke about just how many questions I asked to get an answer from him as to Liam’s rate of success. Dr. Leigh could only express to me that they would not know anything for the next 72 hours as this is how long it takes to administer the cool cap therapy.

Because Liam had possibly minor to severe brain damage, the cool cap technology was only used in the prevention of further damage. It was explained to me that when a brain cell dies, it dies in 2 ways. One it will die and that is it, the other is death with shrapnel killing all local brain cells. Its impossible to know with any baby that has HIE what the extent of the damage is, if any. Worst case scenarios include death and/or Cerebral Palsy with CP taking until the age of 2 to diagnose. Now with the multiple questions I had for Dr. Leigh, I did find out one that really put things in perspective. This technology is only 5 years old (FDA approved) and Liam is about 1 of the 8-12 babies in a year receive this treatment at GM NICU. That really identified just how serious and isolated Liam’s situation was.

Day 5: May 9, 2013

I sat by Liam’s side until 4am. The nurse on duty that evening was Vanessa and one of the most passionate, kind, caring and educated nurses I had met yet. She was very attentive to Liam and did not eat when the other nurses left to eat. She was dedicated to Liam’s success. We had to re-blood type Liam because they could not take the word of another hospital (per policy) and needed his type to order plasma and platelets from the blood bank. A normal baby has 121k platelets and Liam’s were just under 31k. His plasma was also very low and needed to be replenished. I remembered examining all the devices that were hooked up to Liam and asking Vanessa for details about each. This probably happened at least a dozen times over the course of the next few days.

Monica (mom) was staying at Emory Johns Creek and her parents were keeping her company while I (dad) was aside Liam praying and hoping for his speedy recovery. Miracles happen all the time right? It was not long before Facebook and both Monica’s and my phone started blowing up. People wanted to know what was going on. Monica and I were still deep in the woods of this traumatic experience with little information to ease our own minds, let alone anyone elses. We did not want to talk to anyone outside of our immediate families due to the overwhelming uncertainty and pain of our situation. Monica was very emotional and delicate and needed time to recover while I was having to be supportive and involved with Liam and his treatment.

Day 6: May 10, 2013

Liam was stable and they continued monitoring him, it was now a countdown to get through the 72 hour treatment on the Cool Cap. On the ventilator, the NICU staff were seeing that Liam was gaining more and more breathes on his own. As the day progressed we began to see Liam transform. The first huge steps that were taken happened this evening when they removed the chest tube and took Liam off the ventilator. He was now breathing 100% on his own and only with a nasal cannula that you may remember seeing an old person wear at a retirement home. It was not breathing for Liam, but rather providing additional support to the breaths he was taking on his own. Now all that was left was the Cool Cap, needle brain probes stuck in his scalp and a line inserted through his belly for supplementation.

Day 7: May 11, 2013

Everyday Liam was looking and acting like a new baby. Monica was being released today, it would be the first time she’d see her son since his birthday. Monica was so happy that she would finally be able to see our little bundle of joy. At 11:30 Monica and I headed straight to GM NICU. She got scrubbed up and entered the room where Liam was being cared for. You should have seen the joy and happiness on her face to finally truly and effectively examine her baby boy. Looking over every inch of his body even with all the tubes and surrounding equipment. The look on her face was true contentment. “He is so beautiful” she said while touching his little toes. Both Monica and I knew that Liam had come so far and done so well.

Later that evening, the NICU staff would begin the warming process where once complete they could remove the cool cap. Monica and I were very excited about this and knew that every day Liam was doing a little bit better. She was even able to pump while at the NICU, next to Liam’s bed. That night Monica and I went home and for the first time, got to relax on their sofa and take a deep breath knowing in their hearts the God had potentially saved their baby. Still uncertain of the future considering the fact that only time would tell if Liam had truly triumphed over HIE.

In my time sitting next to Liam I had done much internet research and felt very comforted that Liam had not experienced any seizures like some of the more sever cases of HIE. Also every single post of Cool Cap therapy online had shown amazing results that these little ones had no issues growing into normal children and adults.

Day 8: May 12, 2013 (Mother’s Day)

Monica and I returned to NICU Sunday morning (Mothers Day) to see Liam for the first time without the cool cap. He looked so amazing. His color was very good, he was for the first time lying on his belly all snuggled up and not shaking for once. He looked like a normal little guy sleeping soundly. It was not long before the nurse asked mom if she would like to hold him. I bet you know the answer to that one. Liam woke up and cried a little bit and before long, Monica had him sleeping in her arms. Liam was giving several good neurological signs of progress. He had good range of motion for his arms, legs, feet and hands. He was also able to suck very good on a pacifier. It was amazing to see how beautiful Liam was the more he lost all that medical crap he was hooked up to.

I, not being a woman and 35 years old with no kids, had really enjoyed living without them. He always hated going to restaurants and seeing other kids who badly needed a spanking or just general discipline. For once in I life I loved something more then anything in the world. Just hearing him cry literally brought tears of happiness.

Day 9: May 13, 2013

On our visit to the NICU, it was now my turn to finally hold my little man. He seemed very content with daddy mad baby handling skills. Today Liam was getting a decrease today in his IV supplements so Dad got a chance to feed Liam and squeeze his little soft cheeks! Liam had also lost his nasal cannula. This was the first time that I could look at Liam and notice a difference in the shape and size of his face and facial features. His eyes were not swollen and his double chin had disappeared. I for a moment thought they had swapped him out with a new baby but he just looked too much like me. He was so alert and looking all around. Looking at me, the bottle, the biscuit and back to me. It was really a blessed sight to see.

Day 10: May 14, 2013

Back to Monica’s turn and this time she got to give Liam some boob! He did a great job for his first time. We were extremely pleased with how much more progress our little man was making from day to day. Before we left, we dropped him in the NICU provided 4MOM Mamaroo baby swing. It was super modern looking and also had a travel path unlike any swing I have ever seen. Liam absolutely loved it and soon was passed out. Monica signed off on his “snip snip” circumcision. I was not about to have a signed concern of any penal loss risk (listed on document). Now I can confidently say that was your moms fault should anything bad happen. I am sure he will be golden though!

Day 11: May 15, 2013

I stopped by after my dermatology appointment to find Liam all dressed up in a blue shirt and grey pants. The only connection was his heart rate monitor. I could tell he was in even better spirits not having that line in his belly. The nurses said he was a bit more fussy but I am sure that is because he is now relying 100% on his Perdue belly for all supplementation and these need excessive fuel. Monica got to breast feed and bottle feed Liam yet again today! We both found that Liam likes to sit up and be a sociable part of the conversation. We look forward to chilling with him at home.

Day 12: May 16th, 2013

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A huge thank you to all of our family and friends that have been such a great support through this process, without you getting through this would have been impossible! We couldn't be more excited at how far Liam has come, and that our little miracle is now snuggled up at home!

P.S. Big brother Chunk, spent the night on the sofa in Liam's nursery, his first night home - he didn't want to leave his side! Chunk stay there all night to keep an eye on his little brother, Liam.

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by Paul Perdue