What a rollercoaster the past few years have been! It started in 2009 when we planned to have another child and sibling for our than 2 year old, Kylie. We were successful and got pregnant soon after trying and we were delighted! While planning a trip to Florida with the family we went to our appt to hear the heartbeat but it was early and unsuccessful so we figured we’d wait till we got back. I went at 14.5 weeks and when we went to listen we found out there was no heartbeat. The baby never grew however my body carried on with the pregnancy the entire time and never rejected the baby. I was scheduled the next day for a D&E as I now needed dilated as I was out of my first trimester. This was devastating but we pushed on. When we found out a couple months later we were pregnant again we were scared waiting for that first visit but overjoyed at the thought have having a successful pregnancy. Under excellent care by my Dr. and by treating this as high risk the pregnancy went on and I was supposed to take it in stride. Work was very stressful at the time working a lot of hours but I was happy to have this little baby to look forward to. We made it through the first trimester and most of the second when we had that appointment to see what we were having- we took our daughter with us because we were all so thrilled. I remember like it was yesterday the moment they touched the ultrasound wand to my belly, and we saw our little boy- and his heart was not beating. Chaos broke out in the room as I could see but needed to push back my tears because our daughter was there. As the nurses quickly removed Kylie to entertain her so we could talk to the Dr. we were overcome with emotions. Not knowing what happened to our baby I was given two options, deliver him naturally the next day and chance him being dismembered or deliver him while unconscious so that he has the best chance. At this point the Dr. was unsure when exactly our baby died and wanted to deliver him the most humane as possible. So we opted for unconscious so that he would be whole. I wish the circumstances could be better, but you deal with the cards you were dealt.
When we lost Justin at five and a half months a piece of my heart broke in a way that can never be repaired. I tried talking about it but no one really can understand what we were feeling because it is one of those things that if you haven't gone through it you can never understand it. Losing Justin in under 7 months of a previous miscarriage was not something anyone could understand. Doctors had no answers to what happened either time- so we chalked it up to my 1% of all things strange and unexplainable that happens to me (no exaggeration- all true keep reading).
My husband and I ran the gamete of emotions, and lucky for us we pulled together instead of apart. No one was to blame for what happened and we had no answers. How do you deal with that? Well I am sure I was not the most pleasant person to be around for awhile, but it was not something I could help or even explain. No one can say the right thing to you. You don't want to hear stories of other people and what they went through. You know you are not alone but you feel like you are drowning and no one can save you. Just when you think it couldn't get any worse I returned to work which was busier than ever- and thought the stress was just exhausting me and causing me the most intense Migraines I have ever had- I decided to walk to the ER to get something to clear the pain. I was admitted again with a freak case of viral meningitis (see the 1%). I then suffered complications of meningitis and came down with encephalitis as well as some memory loss. At this point we had just recovered from my loss of work with Justin for 4 weeks. This recovery was taking a lot longer after all I was lucky to be alive for something that they don't know how I got it and don't know why it took so long to get better illness, I was at my wits end. This time really did a number on us financially as bills were piling up and we had exhausted our life savings just to survive in our house. After four months I was well enough to return to work part time with a 2 month plan to resume full time. And that is when we found out we were pregnant again. What a rollercoaster and this time we were just scared to death with this pregnancy but happy nonetheless to move forward as I had almost died just 4 short months ago and we were still recovering from the loss of our son Justin. Well as you can guess we can’t seem to do things the easy way and at 31 weeks my water ruptured. When I finally went into labor no one believed me again. I was told I had an “Irritable Uterus” from the doctor, I knew better and called my husband right away. Upon arriving at the hospital and after roughly one hour, it was decided to move me into the Labor and Delivery Area. I was admitted to the hospital on the evening hours of October 15, 2010 due to ruptured membranes at which point I lost most of my amniotic fluid.
The doctors worked quickly to stop the immediate onset of labor as they felt the results would be disastrous for both the baby and I. The doctors were successful and I was admitted to the hospital on strict bed rest.
It can not be understated the direct and serious nature of pre-term labor at 31 weeks. Yes, I know, modern medicine has come a long way, but the reality of the situation was there were many questions as to the viability of Nicklaus had he been born at 31 weeks. My health was also in question if I had to give birth at 31 weeks gestation.
So I adhered to the doctors’ plans and maintained constant bed rest for 2 weeks and 2 days.
While in labor, there were signs Nicklaus was in severe distress during contractions. The Dr. never once hesitated and looked at me and told us that if he saw 2 more stress indicators, he would have to conduct an emergency C-Section. I am not even sure that the doctor really got the words out of his mouth before he sprung into action and we were told to put on our gowns. Within minutes, I was whisked away to the operating room with mom and husband in tow. Within minutes, Nicklaus Paul entered this world. The Neonatal Unit was on hand as were many nurses and doctors. Nicklaus made a brief stop to see me before being whisked to his new home for the next 24 days.
While I was able to see Nicklaus briefly on October 30th, I also had to rest and recover from the C-Section. There was an issue that occurred during the C-Section that caused the doctor to go back in and suture an area that was still bleeding. This added additional strain to an already stressful situation.
Nicklaus was in the NICU and little did we know at first how serious Nicklaus’s situation was. We did not find out until the next morning that Nicklaus had a serious bacterial infection which was causing intestinal bleeding. The bleeding was of an unknown nature and he was not stable enough for surgical intervention. The doctors had to wait it out and see what lab results produced. While the lab was working rapidly, Nicklaus was very ill, and the doctors’ continued to work on Nick through preventive measures. My husband remembers the phone call from the Neonatologist very well. She called to let him know Nicklaus was having some major issues, one of which was a major infection and the other was an unknown cause for intestinal bleeding.
After many tests were conducted, X-Rays taken, medication being administered, it was determined Nicklaus had contracted E-Coli and was sepsis. While this was a reason for the bacterial infection, the doctors were still stumped as to his intestinal bleeding. After consultation with outside medical staff, it was decided a PICC line would be introduced to Nicklaus in an effort to evenly distribute the antibiotics and provide other life protecting measures.
After 2 attempts to introduce the PICC Line to Nicklaus failed, we were faced with the ever looming need for invasive surgery. Mind you, Nicklaus was only days old at this point. We agreed to allow the doctors to do whatever they had to in order to ensure Nicklaus would be ok.
After some discussion, it was decided to have a 3rd attempt at a PICC Line as the medical staff did not want to wait 2 days for surgical intervention. At 2:00 AM November 6th, you would have thought we won the lottery. It was a phone call to let us know the PICC Line was successfully inserted and the antibiotics were flowing freely. This was a major mile stone and major hurdle for us.
During this time period, Nicklaus had issues with his breathing in which he would pause for 15-20 seconds, sometimes longer. All the while surgery was looming which would have required an even greater pause in his breathing…in essence….being put under anesthesia could have been fatal for him. The doctors and nurses worked on him and never gave up. By inserting the PICC Line when they did, the doctors and nurses saved his life.
From that day forward, Nicklaus continued to make marked improvement. Unfortunately, the same day his PICC Line was inserted, I had developed a massive infection…..or so we thought it was one. In the end, I was battling dual infections. One for major cellulites…and the other….E-Coli both sepsis. I was dying as my organs had begun shutting down. This resulted in an additional 5 day hospital stay in which I could not visit my son.
November 22, 2010, is one of the best days we have had to endure in over 1 month. That was the day we received news that our family would be together for the first time in over a month. We could not be happier.
For the first year of Nicklaus life he had to undergo painful RSV shots every month in order to keep him from contracting a cold as it could be fatal for him. We kept him home and in a kind of seclusion- lots of antibacterial soap used in our house. Then he was old enough to stop the RSV shots. He contracted his first ear infection that never cleared, then pneumonia. Little did we know this was a pattern and was going to go on for a year of constant Dr. Visits, urgent care and ER visits with no rhyme or reason as to what was happvfening. After much frustration with the Dr.s we went to Boston and met who was to be our savior for Nicklaus – Dr. Martin. In one visit with Boston Children’s we discovered that Nicklaus has some major issues from birth. He aspirates which means every time he drinks it goes into his lung and causes an immediate pneumonia. He had about 14 documented pneumonias at this point. They also found that he needed tubes in his ears because his canals were so small and he had some reflux in conjunction with the aspirating that he kept infecting himself. Then they moved onto his lungs. They wanted to do a procedure to see what was going on because they were having a difficult time diagnosing him. While performing the ear surgery they also did a triple scope to determine what the constant rattling in his chest was caused from. While in surgery he had complications and they needed to paralyze him in order to revive his airways again. We almost lost him again. Out of surgery they determined that he does in fact have an issue with his Mucus similar to that of Cystic Fibrosis however more like something called PCD. This was the start of many tests for Little Nicklaus to determine what to do and how to treat him.
Meanwhile, I had been suffering from incredible abdominal pain that we could not determine and so begins my course of pain medication and tests.
After several hospitalizations for Nicklaus our financial situation has become intolerable. We had no choice to stop paying for many credit card bills. Our medicals were climbing and our saving were gone. Knowing we have many more medical bills coming and appointments, surgery and several medications that Nicklaus needs regularly we both took loans from our retirement funds. That wasn’t enough to pay anything off. And then I found out I have an infection in my jaw and need to have surgery, an implant and another tooth pulled. In the meantime, my husband suffered some injuries that just piled onto the bills. Due to some extreme exhaustion running from hospital to hospital and dealing with life in general he had some accidental misfortunes dislocated his elbow, broke a couple ribs, tripped over a toy and ended up with a major concussion. Now back on short term disability, my husband also had to go through minor surgery, that same day I found out I need to go in for surgery as the pain I was having was getting worse. I scheduled my surgery, and was informed that they would use robotic assistance, and would try to save my ovaries if possible depending on what they found.
We finally got a handle on Nicklaus and although he is not better we are aware of the signs and can monitor him more closely so that at the first sign of a cough we can start his course of treatment and try to avoid going back to the hospital.
Coming out of surgery I found out that I did in fact have damage from the delivery and the ecoli infection that I had 2 years prior with Nicklaus. In the end I had lost an ovary and tube, they cleared all the scar tissue and separated all the adhesions so that I could have less pain but still keep some parts. This is still a process that will go on for some time and eventually will need a hysterectomy.
During all of this I was recruited by another company. I had explained in my job interview about Nicklaus and how I am excited for the opportunity however I wanted to be honest as to my situation so that they knew in advance of the flexibility I required with my son. At my current job I was able to take the time as I worked often from home or from the hospital. Since I worked for a hospital they were ok with that – for the most part. My new job offered much more money which we desperately needed. Our credit was sliding so fast we went to the lawyer to figure out bankruptcy. Due to pride we figured we would manage on our own, my husband was graduating from law school soon and we hoped he would find something right away. The job for me was going really well and about 5 months into the job Nicklaus had his first hospital stay in which I worked from the hospital and put in several extra hours on all the weeks we weren’t in the hospital so that I could prove my dedication. Nicklaus post release ended up readmitted and had some serious complications in which he required oxygen and constant care. I again worked from the hospital and upon his release my folks were able to care for him so that I could return to work – after missing three days. I’ll never forget the morning I arrived back, no one asked how my little Nicklaus was doing ever and just directed me to a back room where they told me I was being let go. The papers were dated while I was in the hospital with Nicklaus so they were waiting for me to return pending his release.
Today we are still struggling, our credit is now nonexistent. We are barely holding onto our house while all the bills pile up. We tried to work with our creditors but they refused. We have tried to refinance but got denied. We have tried the hardship program for our mortgage but we are too underwater and didn’t qualify. We are trying again… Nicklaus is not able to return to school as it is too detrimental to his health and we still need to keep him clear of anyone that is sick because it means a hospital stay for him. My daughter now six and in kindergarten I had to reduce her down to 3 part time days as the daycare costs without me working was astronomical. For me I have medical issues that continue to mount as I have now an autoimmune gluten allergy and hypothyroid. We remain humble and believe this is just another test in life. We push forward and do our best as that is all we can do...after all there must be a reason....