Giving Back and Coping

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 gammet 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 then ever- and thought the stress was just exhausting me- until I was admitted again with a freak case of viral meningitis  (see the 1%).  After my four month recovery (yup 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.
How do we deal with this?  I  know how hard it was for me alone but not everyone around me.  Not knowing what to do I had confided in a friend.  That friend shared with me that I should pray.  Now I am Catholic but lightly practicing, I believe in God but didn't think that it could help ... at first.  I ended up taking her advice and found myself getting better, finding understanding, finding peace.  And that is when we found out we were pregnant again.  What a rollercoaster... and to rupture at 31 weeks.  We never knew what was going to happen. 

Time is up

Well we have come to a close on Nicklaus' time at home.  With bated breath he will be going to daycare this Monday.  Being that it is still RSV season and the fact that he is a preemie, we are concerned and praying that with all the fighting to survive this little one has done so far that he continues on this path of health.  It has been extremely difficult living life with a preemie, one that was as sick as him when he was born.  People do not realize and really can never understand what we have endured not only over the past few years, but the last few months. 

Preemie's are know to have a host of issues, but born sick like Nicklaus, there are a whole host other issues that no one tells you about.  Nothing that we can not get through and nothing that should last forever.  The neurological development in my experience is the hardest.  The developmental stuff is common and they almost always catch up.  What is scary is not knowing what triggers him, what stresses he has, how long it will take to overcome.  We have come a long way.  He has come a long way.

He had his debut today with the Daycare.  He loved all the teachers and overall did very well.  Until he was just done.  Screamed the whole way home and is having screaming bits throughout the day.  Very strange.  I will be so happy when he is over this stage- and have no more worries about how he is going to handle things. 

In the interim we day it one day at a time, and pray for the best!  Everyday is a marked improvement and we are so proud of all his little accomplishments. 

The Story of Nicklaus- by my hubby

This Thanksgiving we have a lot to be thankful for. As you all know, over the past couple of years, Thanksgiving has been a rather rough road traveled. Through the losses we have all had to endure over the past 2 years and the health issues we have all had to deal with, this year marks one of the happiest occasions in recent memory.

Nicklaus Paul Porter has been cleared for release by all the doctors in the Neonatal Intensive Care Unit. As of today, it appears Nicklaus will be released at some point Tuesday, November 23, 2010 barring any apnea related issues or other potential road block.So how about a little history on Nicklaus:Nicklaus entered this world at exactly 11:04 AM on Saturday, October 30, 2010. Present in the delivery room was his Oma Gedrich as well as myself. Nathalie went into labor at approximately 0400 on October 30th.

Although she once again heard the term “Irritable Uterus” from the doctor, she knew better and called me right away. Upon arriving at the hospital and after roughly one hour, it was decided to move Nathalie into the Labor and Delivery Area. As you all know, Nathalie was admitted to the hospital on the evening hours of October 15, 2010 due to her ruptured membranes at which point she lost most of her amniotic fluid.

The doctors worked quickly to stop the immediate onset of labor as they felt the results would be disasterous for both Nathalie and the baby. The doctors were successful and Nathalie 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. Nathalie’s health was also in question if she had to give birth at 31 weeks gestation.

Nathalie adhered to the doctors’ plans and maintained constant bed rest for 2 weeks and 2 days….until she went into labor. The one constant from the doctors’ was that if Nathalie did in fact go into labor before her 34th week, it would be indicative of an infection as a result of little to no amniotic fluid.

While in labor, there were signs Nicklaus was in severe distress during contractions. Dr. Wasserman never once hesitated and looked at Nathalie and told her 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, Nathalie was whisked away to the operating room with Eva and I 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 mom before being whisked to his new home for the past 24 days.

While Nathalie was able to see Nicklaus briefly on October 30th, she 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 while mom rested comfortably in her room. 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.

I remember the phone call from the Neonatologist very well. I was heading to TJ Maxx when she called to let me 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. 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 Nathalie and I 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, Nathalie had developed a massive infection…..or so we thought it was one. In the end, Nathalie was battling dual infections. One for major cellulites…and the other….E-Coli. This resulted in an additional 5 day hospital stay for Nathalie.

Today, November 22, 2010, is one of the best days we have had to endure in over 1 month. Today is the day we received news that our family would be together for the first time in over a month. We could not be happier.

A LITTLE HITSTORY OF THE NAME:So, how did we choose the unique name of N-I-C-K-L-A-U-S P-A-U-L?

Well, Nick was supposed to be born near Christmas…so we thought….oooh…St. Nick.

Then, in honor of Nathalie’s uncle Klaus who passed away, we thought this would be a way to honor our German heritage.

As for his middle name of Paul…we derived this from my father. So, we came up with Nicklaus Paul Porter. Very simple.

We are so happy that we can finally begin living as a family once again. In light of the fact Nicklaus is coming home, we ask everybody to have some patience and understanding while we try to re-acclimate to our home and our family.

We ask that you understand our need to continue to NICU rules when it comes to visitation, hand washing, noise level, handling Nicklaus and all the other rules we had to endure during our 24 day stay.

We ask the following:Please no surprise visits. While the thought is nice, we will not always be ready for visitors.

We ask that you call before you come and let us make the decision based on how Nicklaus and mom are doing.

We ask that when you come in, please wash your hands. While this is more common sense, it has been drilled into us at the NICU.We may ask you to wear a mask which the doctors heavily recommend for the first few weeks.

This goes a long way in preventing RSV in premature children.We ask that you understand that Nicklaus will not always be able to be held. Generally speaking, he tends to be held while eating and then he returns to his comfort zone…..his bed.

We would ask that if you have a cold or other illness that you refrain from visiting. While this is the holiday season, we ask that you understand if we do not bring Nicklaus to events that will have a large group of people. This is because he is still very sensitive to noise issues and stresses very quickly. When he stresses, this causes him to virtually shut down, not eat, and sleep a great deal. This causes weight loss and potential immediate problems.In closing, we ask that people do not make snide remarks about us being overprotective parents, or that we are being ridiculous, or that we can’t live in a cocoon etc.

The fact of the matter is, until we and the doctors are satisfied that Nicklaus will not have any setbacks, we will be protective of his health.We look forward to sharing this wonderful experience with everybody once Nicklaus and Nathalie are well on their way to optimum health. Until then, we thank you all for your support and prayers. Without them, we do not know where we would be….but we know one thing…it is with love and support that we made it through this very trying and stressful time.

Love,Mike, Nathalie, Abby, Kylie, and Nicklaus, and our little angel above, Justin.