Alexander Smith
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Alex's story
My name is Whitney and I am mommy to two very special and very loved little boys named Aidan and Alexander (Alex for short). Their miraculous journey began at 11 weeks gestation when my OBGYN determined why my uterus measured at 15 weeks gestation. An ultrasound revealed twins. I nearly fainted from shock as there have not been any twins in my family since 1900 (5 generations previous) and there was no other obvious explanation to my multiple pregnancy. Thus began this amazing journey.
My pregnancy had progressed almost perfectly with few problems. On March 27th (nearing the end of my 24th week), everything changed. I passed my mucus plug and began to have reoccurring contractions. I passed my plug at 1AM in the morning while I was still at work, but getting ready to come home. By 5AM, I was in the hospital. The first nurse checked me out and delivered the most shocking news I had heard thus far. I was dilated to three and 100% effaced. It was at this moment that the gravity of the situation began to set in. The on-call OBGYN rushed to meet Steve and me at the hospital. She approached my bedside and explained to me that their hospital did not have a unit capable of caring for 24 week neonates. She said I would be transferred immediately to a hospital with a level III NICU capable of caring for babies born so prematurely. I could barely bring myself to ask the question that any new mother would be afraid to ask. Would my babies be ok? The doctor simply said that it was a matter of life and death. At this moment, I realized my babies may not live. I was in complete shock and terrified.
I was put on lots of drugs including Magnesium Sulfate to stop my contractions and transferred to Presbyterian St. Lukes in downtown Denver. The on-call Perinatologist performed an amniocentesis to determine if the Amniotic Sac was infected. If it was an infection, they would have to allow my labor to progress and they could not do a cerclage. If there was no infection present, they would be able to do the cerclage and perhaps stop my premature labor. The next few hours were agonizing and I was exhausted. I had already been up all night and sleep was the last thing on my mind.
Finally, the perinatologist returned with good news: No infections, proceed with the cerclage immediately. The surgery went very well and I had minimal pain as a result. They stopped the Magnesium Sulfate and I began to feel like myself again. I had made it 5 days post-op and I was recovering nicely. They were going to release me in a few days to go home on bedrest. I was not looking forward to the bedrest, but the alternative was much worse.
At 1:30PM on April Fools Day, everything changed. My water broke with Baby A (Aidan). I was extremely upset. I could not understand how this could be happening after I had made it 5 days and things seemed to be going so well. I called the nurse into my room and she confirmed my worst fears were correct. She called in the doctors and they agreed. They did another amniocentesis and this time the lab results showed early indicators of an infection. They removed my cerclage and told me that nature would have to take its course. They would no longer postpone my labor. Thus I began to dilate again and I began to have contractions. Just a few days before, a Neonatologist had spoken with Steve and me regarding the survival rates of premature babies (24 weekers, 25 weekers, etc). I was 25 weeks and 3 days into my pregnancy and not due for several months. My due date was July 12th and it was only April 1st. Of course, I kept hoping that this nasty April fool's joke would end. It didn't. I began to think about all of the stuff the Neo had said about babies living and dying and I was terrified.
After a few hours of contractions, they were very worried about Aidan's ability to endure a vaginal delivery. After several failed attempts to adequately monitor his progress, they sent me off for an emergency C-section. My babies were born at 9:08PM and 9:10PM weighing 1 lb 6 oz and 1 lb. 10 oz. Everyone had been worried about Aidan and the NICU nurses were prepared for Aidan to do poorly. Surprise, he proved to be a strong little kiddy and he did very well. Alex unfortunately did not fare as well. They were both intubated at birth and required ventilation support. Aidan progressed nicely through his NICU stay and came home on July 10th with no oxygen support.
Alex's NICU stay was much different. Every time they would warn us about a possible problem, Alex would get it. Alex's issues began when his central line infiltrated and fluid built up around his heart. Alex's heart stopped and they had to perform chest massages to bring him back. He also required chest tubes to drain the fluid. As a result of the chest compressions, his nerve controlling his right diaphragm was damaged. He suffers from diaphragmatic eventration and has minimal usage of his right lung. He also suffered a Grade IV IVH and developed Hydrocephalus. He required around 17 surgeries in the first 5 months of his life to finally get his shunts to function properly. He was intubated and extubated over 25 times through the first 5 months for the countless surgeries and to support him through the countless infections. He also had meningitis as a result of the shunt leaking which required reintubation as well. I basically lost count of the procedures after a certain point. I just remember what it felt like to watch my baby go to the OR wondering if I would ever see him alive again.
Still, Alex persevered and got better. It was Mid-September and Alex was just days away from discharge. Suddenly and inexplicably, Alex began to take a subtle turn for the worse. His previous swallow study had not shown any problems, but the doctors suspected he may be refluxing and aspirating his milk into his lungs. This would explain his worsening respiratory status. Alex was still on the nasal-cannula (flow of ¾ Liters). They suggested a g-tube and nissen. We agreed. The surgery went fairly well, but the anesthesiologist was worried that he may have an infection. A few days later, they placed Alex in an Oxygen tent to provide additional support. The lab results showed no infections were present.
Then, on September 29th, Alex nearly died. They did an emergency intubation and were able to finally stabilize him. They called Steve and me at home and we rushed to his bedside. I was not prepared for what I saw. Alex was flailing and fighting for dear life. He was tied down like an animal and was being pumped full of nearly every drug possible to calm him. They gave me the grisly details regarding his failed IV attempts, failed intubation attempts, and other information that I blocked out. I reached out to touch him and I was told that I could not touch him. I could not stand to see him in that condition and I left the room.
It would continue to be the worst day of my life as we contemplated Alex's future. Again, we were staring death in the face and I went home to tell my mom about Alex. This was the hardest moment of my life to watch my mom cry over my baby too. A few days later proved more positive and Alex finally stabilized and he appeared to be less miserable. He no longer struggled as much against the ET tube and IV. They had finally determined the cocktail of painkillers and sedatives required to calm him.
They bronched him again and we were shocked at the extent of his bronchialmalacia. His left bronchus was almost completely collapsed. At this point, they told me that he would require a tracheotomy. Steve and I were comforted to finally somewhat understand why he had taken a turn for the worst a few weeks prior and we agreed after a few days of soul-searching and praying to proceed with the tracheotomy. Alex had his trach surgery on October 2nd and has taken off since then.
On November 18th, after nearly 8 months in the NICU, he came home. We were able to enjoy our first Thanksgiving and Christmas holidays with our babies. Alex continues to do very well and we have even survived our first emergency trach changes. Every day life with the trach continues to get a little easier and we are thankful we have Alex and Aidan here with us. We look forward to each new day with our sons!!!
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Aidan and Alexander
Christmas 2003
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Update March 2005
General Progress and Changes
We had a wonderful holiday season in 2003 and a great year in 2004. In January
2004, Alex was admitted to the PICU and underwent 2 shunt revisions. Since then,
we have been avoided any hospitalizations except for planned procedures
including an MRI, Bronch, and Endoscopy. Other than a few illnesses, Alex has
been very healthy too. For a few months, Alex had problems tolerating his feeds
and vomited frequently; however, we were able to resolve Alex's vomiting
problems with medication. His vision problems have improved dramatically thanks
to special intervention from the Anchor Center for Blind Children in Denver.
They provided us with vision therapy, OT, and PT services. We are still getting
weekly PT service from their therapist. Alex's vision problems are due to
Cortical Vision Impairment (CVI). Alex had an MRI in late-2004 and it showed
additional brain injury to his visual cortex. Alex had a stroke when he became
very sick in September of 2003 causing his vision problems and left
hemi-paresis. Alex was officially diagnosed with PVL (white matter loss) and CP.
Despite these diagnoses, Alex is doing very well. Throughout the past year, he
has learned to roll over from stomach to back and back to stomach. He rolls all
around the house and is very interested in his newfound freedom. He loves to do
stomach crunches and just needs to figure out how he can pull himself up to sit.
He can sit now with minimal support and we hope he will be sitting unsupported
soon. He drags himself around on his tummy and is in the process of learning how
to crawl. He will point to his nose when you ask him where it is and I am
teaching him other body parts currently. He will also play patty cake. We are
waiting on a gait-trainer we have ordered called a Gator. By this upcoming
summer, we hope to teach him how to walk while using this gait-trainer. We have
also ordered orthotic braces, which will help him stand flat-footed instead of
on his toes. Most importantly, he is a very happy boy and absolutely adores his
twin brother Aidan. Recently, we were able to hear Alex laugh and interact with
Aidan. They love to talk to each other as only twins can do and we are truly
blessed to see them share their deepest baby thoughts!!
Trach Changes
Alex has progressed marvelously and is doing very well. We have weaned him
completely off CPAP where he had been on a PEEP of 14. He went through several
months of increased HME trials, PMV trials, and now trach capping. His O2 has
weaned down from ½ Liter to 1/8 of a Liter. We have even had Alex completely off
O2 for several hours a day and he sats around 97% and higher. He truly is making
wonderful progress. We successfully weaned him off all diuretics and
supplemental electrolytes. He is off all inhalants except Flovent, which will be
stopped shortly. Alex is here today and THRIVING thanks to the trach. It has
been a lifesaver for him and has allowed him to be a happy, healthy boy.
April 2005 Updates:
April 1st Alex and Aidan will celebrate their 2nd birthday. I can't believe how
much they have changed and everything they have overcome. They are amazing
little boys!!
April 15th, 2005
I still remember the day we were told Alex would need a trach. I was terrified
and scared. I had no idea what to expect. We were faced with a life and death
decision and we decided Alex wasn't ready to leave this world. We gave him
another chance. It was the BEST decision we have ever made. I remember watching
him come back from the OR after the tracheotomy. I was completely overwhelmed
and shocked. I felt numb inside. I told myself time would pass quickly and I was
right. It did. Alex has come a long way since that day, and so have all of us.
We have all been profoundly changed in indescribable ways. We have learned what
it really means to be happy and what life is really about. For that, we are
forever thankful. Alex's decannulation is planned for April 15th, 2005. He will
have had the trach for over a year-and-a-half. We will undoubtedly celebrate
Alex's progress and successful decannulation while knowing it would certainly
not be possible without the many wonderful people we have met along the way.
Again, we want to thank everyone that has been a part of Alex's miraculous
journey. Furthermore, Steve and I want to thank all our friends and family
especially Jackie and Don. They have been unconditionally supportive and we owe
them more than can be adequately quantified in words, so I won't even try.
Lastly, I want to send out a personal thank you to everyone I have met on this
wonderful site. Your friendship and support have meant the world to me and I
can't tell everyone enough how grateful I am to know you. You have kept me sane
and helped me take things one day at a time. To Cindy Bissell, once again, thank
you for sharing your inspiring stories with the world and for giving others the
chance to share their own.
Whitney Staats
