Meet Sarah Alexis Jacobs, to us, Little Lexi. Lexi graced this beautiful world on January 16, 2009 at 4:28 P.M. She was born a micro-preemie, weighing in at 1 pound 11 ounces and measuring a tiny 12.5 inches in length. This blog post is dedicated to her, our tiny miracle, and her journey for life.
In August, 2008, I found out that I was pregnant! From the start, my pregnancy was rough, to say the least. I was so very sick right from the beginning, unable to do much other than get sick. I ended up in the hospital ER within the first month from dehydration and spent the following several days in bed tired and weak. On October 26, 2008, I awoke in the middle of the night to find a pool of blood in my bed. I was rushed to the hospital where the ER doctor removed a large mass from my cervix. We all thought that the baby had passed; we were heartbroken. I can still here the doctor saying, "I'm so sorry." I was sent up to ultrasound to verify that everything had been removed prior to me being discharged. To everyone's surprise, when the ultrasound probe was placed on my belly, there sat Lexi, kicking and squirming, more lively than ever. It was determined later that I was carrying twins and suffered from "vanishing twin syndrome".
From that point, I was monitored by my doctor twice a week, doing everything we could to save Lexi. In November 2009, specifically the week of Thanksgiving, I was suffering from extreme cramping and was still bleeding from October's episode. The cramping became so severe that I decided to go in to the doctor out of an abundance of precaution. My doctor immediately booked me into the hospital after an examination of my cervix. I was funneling. While in the hospital, I was given medication to stop contractions and underwent several tests including ultrasounds and an MRI of my uterus. In the ultrasound, it was discovered that I had a sub-corneal bleed (my placenta was separating from my uterus). This condition was ominous to the viability of the baby, and even my own life. There was an extreme chance that I could bleed out. The possibility of terminating the pregnancy to save my life was discussed, and even urged, but I refused. I was discharged on Thanksgiving evening to bed-rest at home. December flew by without any complications, although we spent the entire month stressed that something could happen at any moment. We found out that Lexi was a girl in December. It was such an amazing feeling to actually be able to give this little life a name, making her so much more real.
January 7, 2009, while at work, I began cramping extremely bad. I called the doctor who had me come in immediately. An ultrasound was done at which time it was discovered that I was dilated to a 2 and funneling. I was in labor. I was rushed to labor and delivery and was immediately placed in the bed in the Trindelenburg position (head down, feet up). This could not be happening. I was only 22 weeks and a few days along! I was stuck what seemed with a million needles and placed on antibiotics, Demerol, magnesium drip, Indomethecin to stop contractions, and was given steroid treatments to develop Lexi's lungs in the event of delivery. I was pretty much completely out of it the first two days. About the third day, I started getting scared and started panicking.
On January 9, 2009 at 2:50 AM, my water broke. It was definitely not what the ideal plan was. However, we made due with it. The magnesium drip was terrible. It makes you very, very hot, and extremely irritable. They stopped that medication the following Monday. It was obvious that it was not working. I remained in bed for the next week, and on Friday, January 16th, I went into full on labor. The nurses never saw it coming because my contractions never picked up on the monitors. It took a lot of screaming and crying for the nurse to feel my stomach and check me to see that I was in hard labor and dilated to an 8. It never did show on the monitors. When it was discovered that I was in labor, complete chaos broke out. The room filled with several people, mostly NICU staff. I panicked and everything became a blur. The doctor was screaming to get me to the OR; the nurses said there was no time. The doctor screamed to get anesthesia up to the room; the nurses screamed there was no time. Dr. Robinson came in just in time for me to start pushing.... it was the most painful thing I have ever felt. A dry, breach birth and two pushes later, Lexi entered into the world. She was so, so very tiny. I cannot even begin to describe how tiny she was. At that moment, she was rushed off to the intensive care unit and I was put under and rushed to the OR. The doctor needed to perform a D&C on me.
I awoke a bit later, tired and sore....completely heartbroken and confused. How was Lexi going to make it? We were told she was not viable at 24 weeks gestation. Was my baby girl, this little being that has fought through a miscarriage and two attempts of labor, going to make it?That evening, I was brought in to the NICU to see my angel. The sight was intimidating to say the least. She was in an isolette, with lights and tubes and hoses everywhere. She was so small; she could fit in the palm of your hand. I was devastated. That night, the rollercoaster began.....and we are still on this ride, much further down the tracks, but still very, very scary, never knowing where the next turn will take us.
Lexi was 1 pound, 11 ounces at birth. Her length was less than that of a 20 ounce coke. She had no face and a lot of her body was not yet developed. Her legs were so tiny that they could both fit in a woman's wedding band with room to spare. Expressing just how tiny she was is difficult, because pictures cannot do the truth justice.
Lexi was born on a Friday. She was placed on a ventilator and started on what NI called the "honeymoon period". They all say that preemies have a really good run for several days. Then the medicines start wearing off, and their true colors and conditions are exposed, and the emotional roller coaster begins. Lexi honeymooned for about two weeks. The Tuesday after she was born, she was removed from the vent and placed on bubble c-pap. She did extremely well on that until the following Tuesday when the honeymoon was over and she was placed back on the vent. She gave out. Her little lungs just could not sustain her.
Lexi remained on the vent for a while, receiving transfusion after transfusion and medication after medication. Shortly after, I received a phone call from Dr. Petit stating that Lexi had taken a turn for the worse. I rushed up to the hospital but was not allowed back because they were still working on her. She was placed on the oscillator, where she remained for several weeks. This machine was horrible. It sent vibrations into her lungs giving the appearance that she was constantly shaking. Even the machine was not completely helping, so Lexi was placed on nitric oxide. I have heard horror stories from other families; most saying this was a last resort effort. She remained on both for several weeks. This was a part of the roller coaster where I thought I was losing her for sure.
We remained by her side, every day, singing lullabies and caressing her sweet little head. She has a sweet spot on the side of her head, that no matter how upset she was, the slightest stroke would calm her little spirit. She responded so well to her mommy. After weeks on this awful machine, Lexi eventually weaned off of the nitric and then off of the oscillator, a miracle in itself.
She returned back to the traditional vent, and, within one days time, back to bubble c-pap and then to nasal canula. Our next major project was maintaining body temperature in order to move to an open crib. Lexi did great with that. She was in open crib in no time at all! Lexi had an amazing transition to open crib and was soon celebrating her new home. Our next major obstacle was teaching her to eat from a bottle. The suck, swallow, breathe was at first tough. The first feed did not go so well. There was gagging, choking and desaturation spells. After a week of waiting, we tried again and Lil Bit took off. She was on the high road pathed straight for the house. Our final task was to get Miss Lexi off of the medications and the oxygen. We were working at that task, and we were doing amazing. The thought of home was more and more exciting. Then the blow came. Lexi needed surgery. Lexi was diagnosed with ROP (Retinopathy of Prematurity) and Plus Disease. These are very aggressive diseases of the eyes that cause blindness. Lexi was screened on Monday and that Tuesday, she was in surgery. Lexi had to be reintubated and sedated. The surgery only lasted about 45 minutes, possibly the longest 45 minutes of my life. Watching your child go through surgery, no matter how minor, is terribly scary. The procedure went well; the doctor was very pleased with the outcome. However, we faced a bigger challenge...getting Lexi off of the ventilator. We had amazing nurses the day of Lexi's surgery. They were completely supportive of the emotional challenge that presented for our family. Lexi had a tough time breathing after the surgery. I walked in on her being hand-bagged twice, a sight I would never wish anyone to stumble upon. Lexi's eyes were terribly swollen after her surgery, but by that night she was peeping out through her little eyelids. Success!
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| Mommy Wishing Baby Girl Luck Before Surgery |
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After Surgery
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| After Surgery |
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| NaNa holding her baby after surgery. |
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| Baby Girl looking through her new set of eyes! |
Lexi began excelling more and more every day after her surgery. A few days after her eye surgery, I received a phone call from the hospital public relations office stating that the news was wanting to do a story on the NICU, and that they could not think of a more perfect baby to share with the community than Little Lexi herself. The next day, Lexi got dressed up in her purplicious outfit and made her debut as a superstar. The purpose of the news special was to make the public aware of the March of Dimes, an organization committed to raising money and awareness for research to prevent premature births and to support NICUs nationwide by providing them with the necessary equipment that is needed to save preemie lives. Everyone who saw us after that wanted Lexi's autograph :)
The ordeal tired Lexi out, as well as her momma, but it was fun and encouraging.[Image]exi at lunch with mommaLexi quickly began progressing in leaps and bounds. She still remained on oxygen, but given her chronic condition, it was understandably going to be something that she would live with for months after discharge. Lexi was quickly approaching four months of age and rapidly approaching her original due date, April 30. On Monday, April 27, Dr. Elrod advised that I would be rooming in on Wednesday, April 29, and Lexi would be discharged on her due date of April 30. I was blown away. I had awaited this very moment for so, so long. It was finally here. The entire family spent the next day flying around to finish up last minute things...buying formula, rewashing all of Lexi's bedding, cleaning house again. On Wednesday, I showed up to the hospital to find yet again another heartbreaking setback. Lexi would not be rooming in. She was sick, throwing up. That day she had an upper GI test which came back that absolutely nothing was wrong. Yay!; Maybe not such a scare after all. We roomed in Wednesday and Thursday and on Friday, we dressed up in our going home outfit, made our tearful rounds of goodbyes to our family of four months, loaded up in the car and started our journey into the outside world.
Memories of the NICU
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| The first time I held Lexi |
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| Lunch date with Mommy |
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TLC warms the soul
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| Big sister peeking in at her baby sister. |
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| Lexi's first bath. |
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| Loaded up and heading home, May 1, 2009 |
What a blessing!Lexi quickly adjusted to life at home, sleeping and eating and playing with her big sister, Kaylee. Kaylee loves her sister and is jealous, but very protective of her. Initially, the hospital sent a courtesy nurse out to our house twice a week to check Lexi’s vitals. Lexi was still so very tiny, tinier at 5 months old than a new born baby. She was very intimidating and overwhelming, but a complete miracle and blessing to the house. 
On May 10, 2010, our family was dealt a devastating blow, crushing our spirits completely. Shortly after bedtime, Lexi’s apnea monitors and pulse oximeter began alarming, blaring through the house like a thousand amplified sirens. I rushed to Lexi’s room to find her in a horrific seizure, throwing up from her mouth and nose, stiff as a board and jerking all at the same time. 911 was called and Lexi was rushed to the children’s hospital. We were admitted into the Pediatric Intensive Care Unit, which became our home for the next month. Lexi had RSV, bacterial pneumonia from aspirating during her seizure and, of course, we were still trying to understand why she had the seizure. Lexi spent the next several weeks undergoing several tests, scans, nuclear scans, MRIs…you name it, she did it. During that time, she began seizing regularly. First, the seizures were once a day here and there. Then they became more frequent, occurring several times per day. The neurologist then assigned to her case performed an EEG. From that test, we learned that Lexi was suffering from focal seizures that more than likely were stemming from a brain bleed that Lexi received at birth. The doctors pumped Lexi full of medications and sent us home.
Over the next month, now July 2010, Lexi was hospitalized two more times in PICU due to her seizures. Eventually, the doctors told us that this was now our life and we would just have to “deal with it”. This was unacceptable. The next few seizures that the baby had were dealt with at home. We obtained a fulltime nursing service to assist us with Lexi’s care in home because it was obvious that we had to keep an extremely close eye on her vitals. Several days passed and Lexi was stable. We decided to start Early Steps and have the baby assessed for therapy. The day of our initial therapy assessment, Lexi had several spells where she would drop her heart-rate and would stop breathing. She had several seizures that day and with the new spells, I just could not take watching her suffer so, once again, I rushed her to the hospital. This time, the Intensivist was at a loss. He decided to consult with a specialist with the Children’s Hospital of New Orleans who decided to take Lexi’s case. Lexi was boarded on a private jet the next morning and flown down to New Orleans. I was not allowed to fly with her so I loaded up in the car and took off on the longest trip of my life. New Orleans. What a Godsend. Dr. Shannon McGuire took over Lexi’s case and explained to me that Lexi was not only severely epileptic, but was also suffering from Cerebral Palsy. At this point in the game, there was a question as to if Lexi would ever walk. It was believed that she would have severe mental deficits and learning disabilities. I was told to quit trying to run a sprint because my life was now a marathon and I needed to pace myself. I was told that things would get harder the older she got and that I would probably have a child that would suffer from extremely erratic behavior the older that she gets. The reasoning behind this is the area of the brain that is most damaged is the portion that controls her ability to interpret right from wrong. It also controls her pain management; Lexi does not feel pain which in itself is scary because we never know if she hurts herself. We constantly have to keep an eye on every little thing that she does. Lexi spent a week in New Orleans and was sent home to rigorous therapy, both medicinal and physical, and was referred to the Shriner’s for treatment for her Cerebral Palsy. Since that trip, Lexi and I have traveled to New Orleans once every three months for treatments with her neurologist, her pulmonologist, her GI doctor, her cardiologist, her endocrinologist, her ENT, her endocrinologist and immunologist… and a slew of other specialists. Each trip bears better results than the trip before.
Last year, on Lexi’s first birthday, she was taken off of her home oxygen. She had been a slave to the tubes and hoses at home for the past several months. For her first birthday, her doctor allowed her to come off as long as she behaved. She did amazing! Happy Birthday little wonder! We celebrated with a huge party to start off a brand new year of miracles.
In the beginning of 2010, we decided to be aggressive with teaching Lexi to walk. After all, they said she never would. We were told she would be in a wheelchair. Her dad and I decided that this was just not acceptable. We introduced Lexi to a walker, the smallest walker ever, and within 4 months, Lexi began walking. She began walking so good that we decided to take the walker away to see what she would do. Coaxing her with treats, we started at the highchair and gently persuaded her to walk towards the snacks. Before long, Lexi was running. Of course, on bad days and when she is tired, her CP gets the better of her and she falls down a lot. We are so proud, though, of how she defied the doctors and did exactly what we knew she could do.
Over 2010, Lexi progressed beautifully. I left work to be with Lexi and Kaylee as a fulltime mom. Time is too precious to be too far from them both, especially after seeing just how fragile life can be. The only real issue that we dealt with on a regular basis was the seizures. We just could not get them under control. We went through four different medications and combinations of medications and nothing seemed to work. In October, Lexi has a horrible seizure that made her stop breathing for 3 minutes. This was one of the most horrible seizures we had seen thus far. The holidays came and went and both of the girls had a blast, receiving more than their blessings full of gifts. The biggest gift of all was having our entire family under one roof, healthy and happy.At the end of 2010, I began to feel like there was really a light at the end of this long tunnel that we have been in over the past two years.
Lexi’s second birthday was approaching quickly and we were so excited to start the celebrations. After all, the little girl that was not supposed to live was turning two!On January 5th, Lexi spiked a temp of over 106. She went into an epileptic episode in our car. We stopped and pulled her out of the car only to pull a lifeless body from the carseat. Lexi was gone. We just knew that we had lost our angel. Our other baby was in the back seat screaming out for her sister. It was just like being in a movie…the world spinning around you, holding the body of your child, screaming for help. It took 39 minutes to get Lexi back. Once in the ER, Lexi was given a spinal tap and a ton of other tests. She had the flu. The flu! That is what caused us to almost lose our baby. We spent the next three days in Intensive Care. With many prayers lifted, Lexi got to come home that next weekend. The following weekend we celebrated Lexi’s second birthday! What a miracle! Time after time, Lexi continues to defy all!
In February 2011, yet another slap to the face. This time, Lexi woke up with a high fever. We were brought to the hospital yet again to discover that Lexi’s oxygen saturation was almost 20 points lower than normal. She had double pneumonia that was infiltrating her right lung which in turn was pushing against her heart. Lexi was put back on oxygen and received around the clock antibiotics, CPT treatments and breathing treatments. By day three, she was not getting any better and the possibility of her being placed on a ventilator because more and more real. During this time, her big sister, Kaylee was also hospitalized with an enlarged spleen and kidney infection. Big sister ended up having surgery to remove her gall bladder. Day 5, I believe that God knew I just could not do it much longer. Lexi finally started showing signs of improvement and, although we had a very difficult time weaning her from the oxygen, by day 7 she was off and heading home, leaving her big sister in the hospital recovering from surgery so that she could go home and get the house ready for Valentine’s Day.
Update since February:
Lexi has been diagnosed with Autism and Spectrum Behavior Disorder. She has also been diagnosed with near total hearing loss in her left ear and is in the process of getting hearing aids. She also has developed night seizures that render her combative and unresponsive. She also has developed a bruise on her back which the doctors initially thought was leukemia (thank goodness it was not), but it looks more like it is a liver issue for which we are in the throws of testing as of this writing. Never, ever a dull moment. We also are seeing a dermatologist because Lexi appears to have some type of autoimmune response to being outside (allergic to the sun). She surely is special.
We have applied for Make a Wish. The doctors don't have a time limit to put on Lexi because her illness can take her at any time be it today, tomorrow or 40 years from now. I just do not know. I pray that we get chosen.
2011 has started off really rough, but we are so very happy that we have made it this far. Life is definitely a journey full of twists, turns, disappointments, heartaches, triumphs and celebrations. My husband and I have seen and heard it all; Lexi will not live. Lexi will never walk. Lexi will never talk. Lexi will never do anything that a normal child would do. Lexi has done it all. She has prevailed because she is a miracle. She is a walking testament to God’s grace and love. I don’t know what Lexi’s future holds. I know that it is something great. She has changed my life and the lives of many others. Every person that she has encountered has been impacted by her tiny soul. I would give my life to give her and her sister anything and everything. I will spend my last breath fighting for these two girls…these two miracles. I hope Lexi’s story encourages many and spreads worldwide to prove that there are such things as miracles. They are in the flesh, walking this earth. God is good, all the time, and I have living proof of that sleeping in a pink bedroom down the hall. Her name is Lexi….my tiniest miracle.
