March 15, 2011....
This date marks one of the biggest blessings and biggest heartaches of my life. This is the day that God gave me and my husband a little bundle of joy, who we call "Lane." I have worked on this first blog post for quiet some time and debated even publishing it for the world to see. But here it is!
On Sunday, March 13, 2011, I had just started what I thought was my last week of working before my maternity leave started. At the time, I was working 12 hour shifts as an RN at Memorial Hospital on a very busy Orthopedic floor. I was 36 1/2 weeks pregnant. Overall, I had a very uncomplicated, healthy pregnancy. Of course, I had the normal pregnancy complaints: back pain, heartburn, swelling, and the overall miserable feeling and readiness to have my baby! Towards the end of my pregnancy, around month 7, my blood pressure started to spike a little, but it was nothing my doctor was too worried about. She just told me to check it frequently, especially when I was working. My swelling also started to worsen, to the point of pitting edema. I continued to work my 3 day, 12 hour shifts and on my off days, I just tried to relax.
As any expectant mother knows, resting is nearly impossible when you are nearly 9 months pregnant. Not only are you fighting to find a comfortable position and running to pee every 5 minutes, but there are 1,000 things to do before your baby arrives. We bought a house in February of 2011, so the last 2 months of my pregnancy consisted of packing, cleaning, and and on top of that, getting Lane's nursery ready! Days of rest were very few.
That Sunday at work I ended up leaving early due to a very high blood pressure and extreme swelling in both of my legs. I can't remember what my BP was exactly; somewhere around 170's/90's. The swelling was so bad that I could feel my scrub pants getting tight around my calves. I called the doctor on call and they told me to keep an eye on my BP and to call the office first thing in the morning if it had not went down. The next morning, my BP was still elevated, swelling had worsened and I had developed a headache. I ended up going in to see my doctor. They got some labs, did an ultrasound, and she decided it was time to induce me and explained that with a BP like mine, it could put extra stress on the baby.
This was a shock to me. I for sure thought she would put me on bed rest, but for her to decide to induce me was unexpected! I called my hubby, and told him to go home and pack my bag (which I had not done yet), and meet me at Parkridge East Hospital...We we're gonna have a baby today! (Of course, he didn't believe me. I had to get my Dr. on the phone to tell him)
I was admitted to the hospital and started on Pitocin around 6:00 PM. I had a good nights sleep with very minimal pain. The Dr. came in around 4:00 am on Tuesday and gave me my epidural, then at 7:00 am my water was broken. After being in labor for almost 24 hours, I gave birth to a beautiful baby boy.
My doctor had told me before I was even admitted to the hospital that she was sending me to a hospital that had a NICU just in case we needed it. She explained that often when babies are premature, especially little boys, their lungs aren't fully developed and that it was not uncommon for them to have to spend 1-2 nights in the NICU. They call it the "Wimpy White Boy" Syndrome. So, when they took Lane from my arms and told me he would be in the NICU for the night, there was no surprise. Of course we were sad and wanted him with us, but we knew he was in good hands and we were both exhausted and looking forward to some rest.
Lane was beautiful. I remember holding him and kissing him and saying "He's so soft!" He had perfect skin and pretty hair and eyes. Lane didn't have a strong cry when he was born, so that worried me a little, but overall he seemed like the most perfect baby. I was in love immediately! We were able to go and see Lane that night in the NICU and he was hooked up to a CPAP to help him breathe. I hated seeing him hooked up to all those tubes and machines, but he looked as if he was resting so peacefully. The nurses said that he was doing well and that he just needed a little help breathing. Brandon and I went back to our room and got some much needed rest.
The next day, my world was turned upside-down.
Brandon and I waited in our small hospital room for the doctor to do rounds. We were told that he would round sometime before 9:00 and to wait until he came before we went to visit Lane in the NICU, to be sure that we didn't miss him. We really had no worries or doubts about Lane's health. We were still on Cloud 9 and so happy to have a beautiful baby boy. From what all the doctors and nurses had told us, this was pretty standard protocol and he would be out of the NICU and back into our arms that night. A good friend of the family was visiting us when I heard a knock on the door and a doctor walked in.
I don't remember much about his appearance as I do the words that came out of his mouth. I still feel queasy every time I think about this moment. The first thing he said is "Your son took a turn for the worse last night." My heart felt like it stopped beating right then and there and I started sobbing. The next thing he said is your son had a partial collapsed lung but that should resolve on it's own, and he is on a ventilator for now. He then said that Lane had started having what they thought were seizures, through the night with periods of apnea (not breathing). He informed us that Lane was started on one seizure med and the seizures had stopped for now, and that it also appeared that he suffered some sort of hypoxic event during the birthing process that had resulted in several areas of injury and bleeding on the brain. I don't remember much else he said... all I remember is how I felt. I have never felt so helpless in my entire life. A million thoughts ran through my head. Did I cause this? Would he be able to breathe on his own? Did I not take good enough care of myself during my pregnancy? If I would have had an elective c-section, would all of this have happened? I literally felt like someone just took a knife and stabbed me right through the chest 500 times. I can remember crying so hard I felt like I couldn't breathe. I did not want to see anyone, did not want to call anyone... I just wanted my baby boy to be OK. And to top it off, the doctor who rounded had no compassion or bedside manner whatsoever. This very clearly was one of the worst days of my life.
The next few hours were, and still are a big blur. With the help of Sheila, a sweet family friend, I notified our parents of what was going on. I could barely get any words out of my mouth from crying so hard. It all felt like a bad dream. We had several people offer to come by and visit and bring food but I requested no visitors. We just wanted to be left alone.
We didn't get to see Lane much that day due to scheduled tests and procedures. That night around 10:00 PM, we went in to see him at the scheduled visiting hours. The staff in the NICU were great. There were several nurses on duty, a respiratory therapist, and a Nurse practitioner at all times. They were very knowledgeable in everything that was going on with Lane. He was still hooked up to several different machines, tubes, and monitors, and they kept going off. Every alarm that sounded made me cringe. Lane had started having seizures again, with apnea spells. He had several while we were holding him and the monitors would go off because it was not picking up any respirations and his O2 was dropping. I'll never forget one of the nurses flicking his foot while he was having one of his spells. She was flicking him so hard that it kind of upset us, but he was not responding. This broke my heart. The machines continued to beep and he continued to lay there- still- with very few respirations. That night, a second seizure medicine was added, and he had to be intubated.
The next couple days were a roller coaster of emotions. We had EEG's, CT scans, a NG tube for feedings, IVs in the head...you name it. When Lane was 2 days old, the seizures had stopped. Lane was stable and overall doing fair, and slowly started showing signs of improvement. I will never forget getting to hold him for the first time since delivery; He was two days old. It felt great holding him in my arms. He didn't start the sucking reflex until he was about 5-6 days old, so he had to be tube fed until then. It was a few days later that we finally heard him cry. He was about a week old before he opened his eyes. (We thought this would never happen!) As the days went on, we learned more about Lane's injury, but still never got a clear cut answer on what exactly happened, and no one could tell us what his outcome would be. The doctor's said that they simply couldn't predict what his future may hold. They said it could be as simple as being a little behind on developmental milestones, like crawling or walking; or that he may be completely dependant on us for the rest of his life.
I was discharged from the hospital on 3/18, but Lane still remained in the NICU. Brandon and I were fortunate to be able to "room in" at Parkridge for a few days after I was discharged. The hospital had a low census that weekend and had extra rooms so we were allowed to stay in our room while Lane was in the NICU, for 3 additional nights. Physically, I was healing well after Lane's birth, but mentally, not so good. I could barely hold a conversation with anyone without breaking down, and still did not want any visitors. The unknown killed us. The fact that he had brain trauma meant that he could have a wide range of problems. It could be that he may just be a little slow at doing things, like walking or reading; but it could mean that he may not be able to do these things at all. And that was my biggest fear. All I have ever wanted was a child to be able to play ball with, do arts and crafts with, and all the other things that "normal" kids do. It killed me even more for my husband. Baseball, fishing and hunting was his life growing up and I wanted that to be something special that him and Lane could do together.
It was so hard having to go home every night, while Lane remained in the NICU. Our days consisted of getting up as early as we could, going down to Parkridge to see Lane at as many of the visiting hours as we could. We were able to hold him, change his diaper, assist with getting his vital signs, and eventually Lane was able to start nursing. This was one of the best feelings in the world to be able to nurse him and provide for him something that no one else could.
Exactly 2 weeks later, on March 29, we were able to take Lane home! The night before, we "roomed in" with him right next door to the NICU so that there would be nurses there just in case we needed something. Lane was hooked up to an apnea monitor. That night was one of the longest nights of our lives! I don't think any of us got any sleep! Lane had been living in a bright, noisy, huge room with tons of stimuli for 2 weeks and I guess it was sort of a shock to be moved into a room about the size of a closet that was nice and quiet. I must say that it was an amazing feeling to be one step closer to taking our sweet boy home, but we were very nervous.
While most new parents leave the hospital with flowers, cards, and happy memories; we left there with an apnea monitor, prescriptions, a list of doctor's appointments, and a sense of hatred toward that hospital. Who had done this to my child? Who was I to blame? I didn't know. I had one of the best OB/GYNs in Chattanooga and a fairly healthy pregnancy. My labor was uncomplicated and I didn't have to push long at all. At this point I was more worried about my son's condition than playing the blame game, but it was still in the back of my mind.
The next few weeks were an adjustment, to say the least. We had settled into a routine and Brandon took off a little longer than normal to help me out. Lane was nursing well, and we had not seen any seizure activity that we knew of. He had to be hooked up to an apnea monitor 24/7 just in case he did have any seizures. He was still on the one seizure medication and doing fairly well. I was starting to feel somewhat like a "normal" Mom and the horrible memories we had from the hospital were starting to fade away. From the outside, Lane looked like a healthy newborn. He did all the things that a newborn does: eat, cry, sleep, pee, poop. It was hard to tell at this point what the future might hold. We had an MRI set up on June 1 of that year. The doctor's were going to set this up soon after discharge from the NICU but they said that this test was just for informative purposes and that it wouldn't change the plan of care. They wanted to wait a few months to let the brain mature a little more.
Along with the doctor's appointment's, we also left with appointments for physical therapy, a visit from a representative from Siskin Children's Institute, and a visit from TEIS (Tennessee's early intervention program). I can remember being in the NICU when a lady from TEIS came by and I didn't quiet understand their services at the time. The lady explained that they are here to offer support for families that may be dealing with a child that may require special needs. They remain with the family until the child turns three years old, then the Hamilton County Dept. of Education takes over. We didn't want to accept the fact that our son may need extra help, but we pushed our pride aside and gathered all of the information that we could. She explained that this service was optional and that we could sign up now or call them if they were ever needed. We chose to go ahead and sign up for the services and it was one of the best decisions we have made yet. We became very close with a representative from TEIS, named Krista, and a representative from Siskin, named Beth. These two ladies will never know how much they helped me cope with everything that we were dealing with.
In these few months of my son's life, I learned so much about myself. I learned a great deal of patience. I can't tell you how many times I googled terms like "long term effects on a brain injured child" or "outcome of lack of oxygen". I wanted to know what my son's future was going to hold. I read countless blog posts of parents that had gone through similar situations as ours, and some of them gave me hope, while others left me feeling empty again...the way I felt that ugly day in the hospital when we first got the news. I learned to just take it one day at a time and just "play it by ear" as my mom always said. We wouldn't know much more about Lane's condition until it was time for him to hit certain milestones and and we got the MRI. We anticipated this day and dreaded it at the same time, but whatever the outcome was, we were going to love this boy, accept him, and give him the best possible life that we could, because he was worth it.
(To be continued)
