Tuesday, September 4, 2012

Faith Turns 1!!

http://youtu.be/R94GUsFL8x0


Is the link to her youtube video, watch and enjoy!!

Thursday, June 7, 2012

Follow us at...

The Gift of Faith Project's blog, is taking a break. But feel free to follow my own personal blog at:


http://brownsistacrista.blogspot.com/

If anyone needs assistance with any Preemie related issue we are still available and can be reached by email: thegiftoffaithproject@gmail.com
or
facebook: http://www.facebook.com/pages/The-Gift-of-Faith/352930968066916

Thank You all for your stories and support!

Crystal Boyd-Founder

Monday, April 2, 2012

Meet Faith


Last week, we posted about the baby Faith that our organization is named after.  This story is about another little girl named Faith. :)

I found out I was pregnant in December 2010.  We had been trying for about a year and at first I didn't think I was pregnant.  Then I thought I might be, took a test which came out positive and went to the doctor to confirm.  I was pregnant!  My husband didn't believe me when I gave him a card because I had already said I wasn't.  My pregnancy seemed normal through the 1st trimester.  I had really bad "morning sickness" (at night) and lost 12 pounds.  Because I was going to be 35 when I delivered, I was considered a high risk pregnancy and my OB/GYN referred me to a perinatologist.  At about 4 months, they did an ultrasound and felt that my baby might have Down's Syndrome, there was something wrong with her leg and that she had clubbed feet.  This was a lot to take in at one appointment.  The did an amniocentesis and it confirmed that I was going to have a girl that does not have Down's Syndrome.  Whew!  Now I am still worried about her brain because I know clubbed feet is treatable.  

In early May I had the MRI to look at her brain on a Monday.  My baby did not like that!  She kicked the whole time.  It was hard not being able to comfort her because I couldn't move.  The next day I went to the doctor and they kept asking me if I was having any contractions.  I was like no.    The doctor talked to my OB/GYN and they decided it was best that I go to the hospital for observation.  He was like they might keep you for a few hours or up to 24 hours.  Aside from being scared, in my mind I was like I have so much to do, I was training someone at work, planning a luncheon for that weekend and was supposed to be leaving town for work on Sunday.  No time to be hanging out in the hospital.

I was sent to the hospital that could handle babies born as early as I was at 25 weeks.  At the hospital the started the steroid shots and giving me magnesium to stop the contractions.  I still couldn't feel them!  The NICU doctor came in and was giving me all the possible scenarios/outcomes of having a baby this early and what they could do.  By Thursday I was still in the hospital and feeling like I had been had.  Then on Friday when a doctor came to see me he was like we don't really send anyone home on weekends.  I was able to step down from the high rish unit to the perinatal unit though.  They wanted me on bed rest and worried that I didn't live close enough to get to the hospital if something went wrong.  They told me they wanted to keep me until 28 weeks and then they would re-evaulate me to see if I could go home.  Being on bed rest was hard for me, even as lazy as I am.  At 28 weeks they ran some tests and decided I was still at high risk so no going home for me.  By then I wasn't worried because overall my baby was doing great and in my mind she wasn't coming until she was due.  

A few days later they moved me back to the high risk unit.  They had me sign paperwork agreeing that they could deliver my baby if necessary.  I still didn't think it would happen.  The next day her heart rate dropped and wasn't coming back up so I had to have an emergency C-section.

Faith Ann Moore was born at 28 weeks and 3 days weighing 1lb 10ozs.  The next day the dr. came in and said that Faith had a TE Fistula and Esophageal Artresia .  This means that her stomach was connected to her trachea instead of her esophagus and her esophagus had a pocket.  She needed surgery right away to disconnect her stomach and trachea so she wouldn't get Pneumonia.  At 3 days old she had her first surgery and came through like a champ.  We had to weight until she was 2 kilos, about 4lbs for her to have the surgery to connect her stomach and esophagus so she had a feeding tube.   She kept needing a vent because she had really thick secretions that had nowhere to go and caused her to stop breathing.  It was so scary to see her turn purple and be on the brink of death.  Finally when  she was 3 months she was big enough for the surgery.  Again another successful surgery!  She did have to be on a special oscillating vent for a few days, but otherwise did fine.  We started trying to feed her and she did great, but was aspirating.  A swallow study determined she needed thickened feeds.  A week after her due date she went home after spending 3 months in the NICU.

3 weeks after she left the NICU she stopped breathing.  She had been coughing and had stopped feeding because she was so congested but when I took her to the dr. they told us to use a humidifier.  Turns out she had Pertussis (Whooping Cough) and we spent another two weeks in the hospital.  They had moved her to a step down hospital after about a week and they said she was ready to go home a week later.  I took her home on Friday and Sunday morning, she stopped breathing again and my husband had to perform CPR and we called 911.  Another week in the hospital.  A month and half later she caught a respiratory infection and we spent another week in the hospital.

Today she is 9 months old and doing much better.  She is still small and relies on the feeding tube to eat.  We are working on getting her to feed by mouth, but she also has bad reflux and basically spits up almost everytime she's fed.  

Through it all, she is such a blessing.  Not only to me and her dad, but our family and many people we have gotten to know by sharing her story.  I know there are babies and families who've been/are going through much worse so I thank God for every blessing we have when it come to her.


Faith at birth

Six months old

Nine months old



Tuesday, March 27, 2012

Faith's Birth Story

At 21 weeks I went into premature labor.

After a day of shopping with my family, I noticed something was wrong. I just didn't feel right and noticed I was having a lot of pressure in my pelvic area. I explained the feeling to my husband as if my little one was trying to kick her way out. I tried to ignore it but we decided a trip to the ER would ease my mind.
I was transported directly to Labor and Delivery and was seen right away. The minute the nurse did the examine, I knew something was wrong; she looked at all the other nurses and quickly asked someone else to check. After several exams I was told that I was 3 centimeters dialated with a bulging water bag and as I guessed my baby's foot was directly in the birth canal.

I was immediately placed in the trendeleburg position (upside down) and given Magnesium Sulfate, which made me feel terrible. After 24 hours I was allowed to lay flat but I could not sit up or get up to use the restroom.

It was determined that I would have to wait to see a specialist that would visit the hospital in a few days. Until then all I could do was wait and pray. The day the specialist arrived I was excited and thought I would be able to go home with my other three children. I was wrong.

The specialist informed me that there wasn't anything they could do but try to stall the baby a few more weeks and even then if she were born she would stand only a 20% chance of survival and a 40% chance of major disabilities. Although the doctors were not optimistic, I still had hope.
After days of not walking, I was allowed a shower. For every step I took I said a prayer knowing my water bag could break at any moment. The day after those precious steps, I was told that my water bag had moved further into the birth canal and I would no longer be allowed to get up.

After seeing several more specialists and each of them telling me the odds I began to get depressed. I missed my other children so much and I couldn't eat which made me feel terrible. The hospital didn't have a NICU so I was told if my baby was born there, nothing could be done; I would have to stay at that hospital until my pregnancy was considered viable, transported to another hospital over an hour away and they would not try to save the baby before 24 weeks.

On August 9, 2011, the day before I turned 24 weeks, my water broke and there was no stopping the labor. I begged the pediatrician to save my baby and she told me would do all she could. The room became so crowed with hospital staff and everything began to move so quickly. As the obstetrician began to deliver the baby, the baby flipped and had to be delivered legs first. When she was born she didn't cry. I refused to look at her because I was afraid of what I would see. She barely had a heartbeat. The doctor gave her a whiff of oxygen and she began to move and her heart rate began to pick up. After several attempts they were able to intubate(put her on a ventilator).

After hours of waiting the doctor came to give us an update and told us that our baby was holding her own and that she had actually tried to fight to pull the tube from her airway. I knew then that I had a little fighter. She told us all we could do from that point was to pray...and have faith.
Before she was transported I was able to see her, she was so small (1 lb. 4 oz.) but as I placed my finger in her hand, her grasp was strong which gave me a lot of hope. Five hours after she was born, she was transported to a NICU in New Orleans. I knew the only thing that would get us through everything was faith(as her Dr said)and that is how I decided on her name. 18 hours after giving birth I was discharged and made the first of many trips to the NICU at Oshsner Hospital in New Orleans.

Our NICU journey was filled with ups and downs. Two weeks after giving birth I developed complications from the birth and being hemorrhaging. At one point my blood pressure was 77/55. The ER Nurses didn't even think I would make it. After surgery and receiving a triple blood transfusion I was able to go home. Two days after my release I begin my journey again back and forth to the NICU again. During Faiths 101 days in the NICU she developed infections, she was on a vent and had a PDA(I called it her broken heart) which was fixed while there. She also had a few NEC(deadly intestinal infection) scares. I was not allowed to hold her until she was 5 weeks old and some days I was not allowed to even touch her. The first time I held her, her breathing tube fell out and I had to watch as they bagged(resuscitated) her. She suffered several events where she would forget to breath and her heart rate would drop and she would have to be resuscitated. There is no other helpless feeling of watching your baby turn blue and limp while the doctors or nurses work on them in order to get them to breathe and bring up their heart rate. Eventually things began to look up and Faith started to gain weight and get stronger. After 14 long weeks and plenty of trips back and forth to the NICU I was told Faith would be able to come home. She would still be on 24 hour oxygen, but "she was coming home!
A week before Thanksgiving our baby was finally home."

Today Faith is 15 lbs. and doing well. After 4months of being home, she is officially off of Oxygen!!



6 weeks
4 months
 7 months
 Bye Bye Oxygen Tank!




Sunday, March 18, 2012

Meet Joy


In 2010, my husband and I came face to face with a decision that we never expected to have to make. Both of us have always been pro-life and could never have imagined having to contemplate having to terminate, let alone at 19 weeks into my pregnancy. 

On September 30, 2010 I went to my OB/GYN because I’d had extremely irregular bleeding that month and was beginning to become concerned.  During our conversation it never occurred to either of us that I might be pregnant.  She left the room to order an ultrasound of my uterus and then came back looking very surprised.   I had my three children in the office with me, so all she said was, “It was positive.”   I’d given a routine urine sample when I’d entered her office.   Instantly I was dumbfounded.  How could I be pregnant and be bleeding this much?  I’d had two early miscarriages between my 1st and 2nd children and my doctor and I both assumed that I was having a missed miscarriage.  I called my husband and we both went to the ultrasound facility together.  It was there that we saw a baby with a heartbeat and measuring around 6 weeks.  I was terrified and part of me began preparing for the worst while the other part prayed like crazy that this child could somehow be saved. 

Unfortunately, the bleeding did not get better after that day and I was in and out of that same ultrasound facility for weeks afterward.  They eventually discovered that I had a Subchorionic Hemorrage(SCH) and Placenta previa.  I had two big bleeds at 8 and 11 weeks that resulted in nearly continuous bleeding until I was 15+4 weeks pregnant.  It was at my 16 week check up with my OB that I began to be tenuously hopeful about my child’s survival. 

I had somehow been on modified bed rest during my entire pregnancy up until this point even with having three other children as well.  I still did very little over the next week and was looking forward to another ultrasound at 17+2 weeks to check the position of the placenta and to hopefully find out the gender of our baby.  That morning I woke up to a small gush and brown liquid and was dismayed.  I hadn’t had any bleeding in 12 days and then stayed in bed until my ultrasound.  We found out that afternoon that I had complete placenta previa and that we were having a girl.  The ultrasound tech also found some fluid outside of the amniotic sac that seemed to come and go, but was not too concerned about it.  That evening as I was speaking to my mother and telling her that we were having a girl and her name would be Joy, I felt a huge gush and ran to the bathroom.  I knew instantly that this was different from the bleeding that I had experienced earlier in my pregnancy.  Even though the fluid was brown tinged, it was much heavier and had a strange odor.  My husband was the first to suggest that it might be amniotic fluid.  This was December 17, 2010. 

My mother-in-law rushed to our home to watch our children and we rushed to the hospital.  In a triage room they ran several tests for amniotic fluid and performed an ultrasound.  The tests were all negative and they believed that the ultrasound showed enough fluid.  I was released and tried to be optimistic, but I was still terrified.  If not amniotic fluid, then what was it? The next morning I awoke and my pad was saturated with the same fluid and there was a clear puddle underneath me.  We called the hospital this time and they told me that there was “no way it was amniotic fluid.”.  Their reasoning was as following:  No one has that much amniotic fluid at 17 weeks, the tests yesterday were all negative and I had a complete previa so there was no way for the amniotic fluid to escape.  They believed that I had a bladder infection and was peeing myself, but it didn’t smell like urine and it was brown tinged, so their explanations made no sense to me.  I laid in bed all weekend and prayed for my child.  During the next week and a half I did as little as possible and noticed no more discharge.  Still, at the back of my mind I worried and waited for my next OB appointment, when I would be 19 weeks.  On the day after Christmas, I again gushed fluid.  This time it was yellow and not as much.  I knew they would dismiss my fears yet again and once more claim it was urine, so I waited for my appointment, which was only 2 days away. 

The morning of my appointment I prayed and worried, waiting and hoping that all of my fears were for nothing.  My doctor and my husband sat cheerfully discussing the next phase of my pregnancy and the need to have help available for the children in case I was hospitalized early on because of the placenta previa.  I sat there listening, but mostly praying and waiting for her to perform the ultrasound. 

As soon as she began, I knew that something was wrong.  She quietly and carefully scanned my belly over and over again.  She then left the room to make a phone call.  When she returned she told me that she dd not see very much amniotic fluid around my baby and that she was sending me to the hospital for a higher level ultrasound.  She then told me something that helped me immensely later that day.  She said that I didn’t have to make any decisions that day because I was already very high risk with the placenta previa and this condition did not raise the risk to my life very much.  We went home to grab a couple of things and hug our children and then, once more, we rushed to the hospital.

In the same triage room they once more ran tests for amniotic fluid and performed a preliminary ultrasound.  While in the room they only told me that the tests were once more negative and they acted like this was good news.  Then they took me to a room nearby to wait for the high level ultrasound, which would have to wait until the next morning, as all of the techs had already left for the day.  My husband and I laid in that room eating dinner, making phone calls and playing games on his Kindle for the next 6 hours.  I was also hooked up to an IV and was drinking as much fluid as possible in hopes of accumulating amniotic fluid for my baby.  The nurses were very sweet and helpful, but it wasn’t until 11:30pm that a doctor came and discussed my situation with us.

I was actually quite surprised when the doctor entered the room.  I had expected not to see another doctor until after the ultrasound the next morning.  She looked very grave and immediately filled me with fear.  She told us that my pregnancy was now too risky to continue.  She said that I had a high risk of developing an infection that could kill both myself and my child.  She also said that at 19 weeks  I was still 5 weeks away from my child being able to live outside of the womb and that there was no way that I  could carry that far with this condition.  My husband kept pressing on with, “But what IF she does?”.  The doctor’s response to that question was that amniotic fluid is critical for a child’s lung development in the womb and that even if I carried her to 40 weeks without infection she would still not be able to breathe when she was born.   She then gave us our preliminary options.  She said that because I had complete placenta previa and could not deliver my child naturally that my best choice was to have a D&E.  This stunned and greatly upset us.  If we permitted this we would never see our daughter.  I also worried that this would cause her great pain.  To this the doctor replied that she could first inject her heart with a substance that would cause it to stop, this way she would already be dead before they performed the procedure.  This did nothing to erase my doubts about this procedure.  She then said that potentially they could perform something essentially like a c-section, but that this was not their preferred method because it was much riskier to perform on a uterus that was so small. 

Once the doctor left my husband and I cried together and called many of our family members and our close friends, asking for their prayers and searching for comfort.  The nurses were very sweet that night, but their faces were filled with sorrow for us.  My nurse was very kind and called over and had the NICU send over a nurse practitioner to speak with us.  She discussed with us two issues.  She said that the earliest that babies survived was at about 23 weeks gestation and I was still a month away from this point of viability.  She said that they currently had a baby boy who was born at 22+6 weeks and was not expected to live for long.  She also spoke with us about why amniotic fluid was so critical for our child’s lung development.  It was clear that she doubted that our child could survive.  We had already determined that we would not end our child’s life while my life was not in grave danger.  She then told us that despite all the negative things that she had shared with us, that she would make the same decision that we were making.  It was wonderful to hear that from a medical professional’s lips.  After she left we asked to speak with a catholic priest, abut they claimed that they could not get one to come, so instead sent over a Christian minister.  He spoke with us for over an hour and was very kind, but was definitely of the opinion that my life was more important than my baby’s and that I needed to do what the doctors felt was necessary.  However, the more we spoke with him, the more convinced we were that choosing to wait and see was the best decision that we could make. 

When he left it was past 2 o’clock in the morning and we tried to rest at that point and see what the morning would bring.  My husband fell asleep quickly, but I drifted in and out of sleep, consumed with sadness.  Around 4 in the morning it dawned on me that I had spent my whole pregnancy terrified of losing my baby and as a result had been too scared to bond with her.  I had never told her that I loved her and here I was potentially about to lose her.  I then told her that I loved her and all of the dreams that I had for her and I decided to spend the rest of my pregnancy loving her every minute and talking to her, not necessarily out loud, but in my thoughts and prayers.  I then tried to rest until about 8 in the morning when they came to take me for the ultrasound. 

In my other pregnancies ultrasounds were a wonderful, happy experience.  With every ultrasound from this point on I dreaded them and could not bear to watch, I just simply prayed through them.  With this ultrasound, my husband watched and as I stated I simply prayed and hoped that they would find amniotic fluid around my baby.  My husband later told me that her arms and legs looked trapped in my uterus and it looked impossible for her to move as a result.  Near the end of the ultrasound, I heard the tech tell his superior that he had measured only 0.5cm of fluid, or essentially zero.  They did observe that she was absolutely perfect and had nothing wrong with her.  She had two kidneys, a stomach and a bladder full of fluid.  These were what they were looking for, along with the fluid level, as some instances of no amniotic fluid are because the baby either does not have kidneys or that they are not functioning properly.  It seemed horrible to consider allowing the doctors to take this beautiful, perfect child’s life.  None of it seemed fair, it wasn’t her fault.  My life still wasn’t at risk.

When I was brought back to my room, the doctor came in and again discussed our options with us.  She again strongly asserted her position that I needed to have a D&E, but did offer to have me go home and come back in a few days to see if I had reaccumulated any fluid.  She then said that this conversation would be very different if any of their tests for amniotic fluid had come back positive.  This seemed strange to me as I knew without a doubt exactly when my water had broken, but I guess somehow they still were not convinced.  I also thought it very interesting that it was too risky for me to continue this pregnancy according to them, and yet it was perfectly safe to send me home since I had refused to have a D&E.  As I left they made me feel like I was only leaving and refusing their treatment because I was a “religious nut”.

Once at home I immediately assumed complete bed rest and only got up to use the bathroom.  My husband immediately went on the computer and found the number for the Tepeyac Family Center and called them.  This was Thursday,  December 30, 2010.  He had a long conversation with one of their nurses, who then said that another nurse would call back later that day to schedule an appointment.  I answered this phone call around 4:45pm that day.  I do not know the name of the nurse with whom I spoke with that day, but she helped me tremendously and I would thank her if I could.  First, she got me an appointment for Monday, January 3, 2011 at 8:45am.  Fortunately, they had had a cancelation earlier that day.  She then told me that I was doing the right thing and that while they would not be able to promise that my child would make it, that they would respect my child’s life.  They would help me treat my womb as a sort of hospice for my baby until she was born.  She then told me that sometimes in these cases there is hope.  They had had a patient a year before who had ruptured at 12 weeks into pregnancy and who never had more than 3cm of fluid until they delivered her at 34 weeks and her baby boy was born perfectly healthy.  I knew that I might not be as fortunate as this woman, but it was comforting to hear a story of hope.  We also called all of the Catholic hospitals in our area, but unfortunately they offered us no support and would not get us in touch with any doctors.  We were sad and disappointed, so we waited for our appointment with the Tepeyac clinic.

New Year’s was quiet at our home that year.  I realized then that God had been working in our lives my whole pregnancy.  We had a family over to our home New Year’s Eve who had lived down our street for 6 years, whom we had not met until right before I had conceived this child.  She understood what I was facing.  She had lost twin girls and a little boy in 2007 at 23/24 weeks into pregnancy, 8 months apart. We cried and prayed together and it was comforting to have her by my side during this difficult time. My church also began surrounding us with love and prayers.  My pastor came to my home and gave me the anointing of the sick and further strengthened my resolve to continue this pregnancy.  He told me that until my life was truly in danger it was the right thing to keep going and that it would never be ok to have a D&E.  If my life become in danger it would be important to insist on having a c-section.  The Sister at our parish also came by and offered her prayers and gave us communion.  Our parish immediately began bringing meals to our home and the Elizabeth Ministry brought communion and support nearly every day.  This all helped tremendously, but each day felt long and arduous.  We filled them with too much TV, lots of prayer and I begin knitting hats, a bunting and a blanket for our baby.  I felt that I needed to be prepared in the event that I did lose her and this way she could be wrapped in the love and warmth of something that I had made just for her. 

On the morning of January 3rd we drove from Maryland to Virginia for my appointment with the Tepeyac clinic.  We were early and very nervous.  This is when I met Dr. Fisk for the first time.  He immediately performed an ultrasound to check the fluid levels and the baby for himself.  When he was finished his face was full of sorrow.  He said that while there was more than 0.5cm of fluid, there wasn’t much more, maybe 1.5cm.  The baby looked great and was growing normally.  He then told us that they get 1-2 cases a year like mine.  People come to them after being told them must abort and seek them out for assistance.  He said that my baby had a less than a 2% chance of survival, but that the odds aren’t fully known because most women do opt to terminate.  He gave me 7 days of just in case antibiotics because infection was the biggest risk in staying pregnant.  He then had me schedule an appointment for the next week and sent me to INOVA Fair Oaks hospital to have another amniotic fluid test and more blood work done.  He said that his prayers were with us and that he was so sorry that we were dealing with this. The nurses at the hospital were wonderful and once more the test was negative (I began to realize that these tests are not perfect).  I also met Dr. Anderson, who was wonderful and said something very poignant and yet sad to me, she said that this pregnancy would test my faith. 

The next week was mostly uneventful except for leaking a little fluid the night after my appointment , after which I decided to remain permanently on the couch in what seemed like a better position for retaining fluid.  This week was full of knitting, TV to help distract, playing games with my children on the Kindle, daily communion and support from family, friends and parishioners.  The next week brought much more stress and anxiety.  I began leaking more fluid mixed with blood this time and the doctors had me come back to the hospital expecting that they may have to deliver my baby.  I was only 21weeks at this point, still far from viability.  On the way to the hospital I continued knitting, hoping to stay pregnant at least long enough to finish my projects for my baby.  This time, I was blessed to meet Dr. Bruchalski for the first time.  He immediately put me at ease.  He did not feel that it was time to deliver my baby and he decided to keep me in the hospital until my bleeding stopped and as long as he could justify it to the insurance company. While I was there they sent me for another high level ultrasound. This ultrasound was very encouraging because it showed 5cm of fluid around my baby, a 10 fold increase in just 2.5 weeks!  However, the high risk doctor there made sure that I understood that 10-12cm would be a low normal level and that they did not know how much fluid was necessary for the baby’s lungs to develop.   This hospital stay went smoothly, I had very little more bleeding and they sent me home after 5 days.  Before I was released, Dr. Bruchalski told me that it was his opinion that my baby now had a 50% chance of surviving and if she lived a 70% chance of having deformities due to low amniotic fluid.  This helped us to try and be a bit more hopeful, but it all hinged on staying pregnant.  

At home once again, I continued my daily routine, which consisted of drinking 8 water bottles, 2 bottles of juice and a protein shake.  I also needed to take my temperature 2-4 times a day in order to stay on top of recognizing infection.  The next morning I began to feel warm and my temperature began to increase, at one point it reached 100.8 and the hospital told me to come back.  Before leaving I took a shower and instantly felt better.  By the time I reached the hospital my temperature was normal once more.  The tested my blood again anyway and the nurse came in and told me that my white blood cell count was high, which instantly terrified us.  When the Dr. Anderson came in, she performed an ultrasound and again checked my temperature.  She then told us that she didn’t believe that I had an infection because although my white blood cell count was high, it was within my recent normal range.  She then told us that when someone is under stress it can cause more white blood cells to slough off and enter the blood stream in response, thus showing an artificially high level of white blood cells.  Also, the entire reason that she performed the ultrasound was to see if it caused me any pain.  It did not and my temperature was back to normal, so she didn’t believe that I was infected at this time.  She still kept me over night to give me IV antibiotics and then sent me home with 5 more days, just in case. 

This time I did not go home to Maryland.  We had continued to stay in Maryland up until this point because our support system there was so strong and we felt comforted by it.  After going back and forth so many times to the hospital and because I only had 1.5 weeks left until I would be admitted to INOVA Fairfax hospital’s high risk pregnancy floor, we decided to move our children in with my parents, who lived in Herndon, VA and to move myself in with my mother-in-law, who lived in Reston, VA.  We chose to live apart for many reasons, chief among them that it would be quieter and more relaxed at my mother-in-law’s and because she was closer to my hospital, but this was not an easy decision because my children had been a great source of comfort to me in the last few weeks, but ultimately it was for the best. 

The next week and a half passed with a little more bleeding and leaking and my anxiety grew as I approached the 23 week mark in my pregnancy.  This was the earliest that babies could possibly be saved, but doubt also surged because of the unknown.  Would the lack of amniotic fluid have not allowed her lungs to develop past 17 weeks?  If so, she would not be able to breathe no matter how long I kept her in.  I prayed ferverently during this time for her life and for my faith.

On January 27, 2011 I finally got the call that I was being admitted to Fairfax hospital. I was 23 weeks and  1 day pregnant.   Unfortunately, I would no longer be under the care of the doctors at the Tepeyac clinic, but I would be at a hospital with an incredible NICU and that was more important at this stage. To get to the hospital I had to be much m ore active that I had been in a long time.  I had to walk down 2 flights of stairs and endure a car trip in icy conditions.  Once at the hospital I was initially moved via wheelchair from room to room for tests and long ultrasounds.  I was immediately given the two betamethasone steroid shots to help her lungs develop in case she was born extremely prematurely. The initial ultrasound at the hospital showed that I still had 4.5cm of fluid and they believed that I had resealed.  Unfortunately, I knew that this was not the case because I had leaked fluid just two days before, but I tried to take this as good news. 

It was my second night at the hospital that my condition began to deteriorate.  I was sharing a room with another woman and my husband was about to leave for the night, when I gushed pinkish amniotic fluid.  I knew that all of the fluid that they had seen earlier that day was gone and once more my baby had no fluid around her.  Every night that week the same thing occurred.  I found it very difficult to get any rest and was more terrified than I had been.  My heart rate was always between 110-120 or higher and I finally accepted anti-anxiety medication so that could rest and it also helped my pulse to slow down to 80-90, in general.  I then had three days with no leaking or bleeding and I felt encouraged.   It was at this point that I got a private room and my husband was allowed to spend the night.  We did not intend for him to spend every night there, but that first night I woke up around 2-3am because I once more felt like I was gushing fluid.  I turned on the light and saw that this time it was not pink, but dark red.  I was 24 weeks and 3 days pregnant, it was February 5, 2011.  We called the nurse and she came and immediately began determining if my baby was OK.  She also called the doctor.  They determined that I had lost 150ml of blood, but as long as I didn’t lose any more, they would not deliver.  They also ran blood work to check my blood count and put in a large bore IV, in case I needed a blood transfusion.  I was not permitted to eat for the next 12 hours.  The rest of that day was uneventful, my children and my mother-in-law visited and I continued my ferverent prayers.  By that evening I’d had no more bleeding and tried to be hopeful.  Unfortunately that night was more terrifying than the previous.  I again lost about 150ml of blood in one gush, but this time they could not immediately find my baby’s heart rate.  This was made more difficult as my pulse was exceeding 140.  They brought in an ultrasound and doctors and nurses were running in and out of my room with cell phones, not saying anything to us.  Because of the position of the placenta they could not see her heart beating.  Just when we all thought that she had died and my husband and I were sobbing, I felt her move and then again and then they could see her moving on the ultrasound and saw her heart beating.  She was way up high and that’s why the nurse hadn’t been able to find her heart beat externally.  I once again was hooked up to monitors, had my blood checked and was told I couldn’t eat for 12 hours.  The rest of the week followed the same pattern, always at night I would gush between 100-150ml of blood.  The doctors tried to reassure me by saying that they had kept women with previas pregnant by giving them blood transfusions over and over and that gushing fluid was “good” as I was less likely to develop infection.  I had also just passed the 25 week mark, which was huge.  The NICU had given us a list of their survival statistics when I had been admitted.  At this hospital 23 week babies had a 45-60% chance of living, 24 week babies had a 75% chance and 25 week had a 85% chance of survival at this particular NICU.   

In about the middle of my hospital stay a wonderful woman came and visited me.  She had a cousin who was a Sister of Charity and had been privileged to meet Mother Theresa and to receive a first class relic of her.  This friend brought this relic and placed it on my abdomen and we prayed together for my baby. There were many moments during my pregnancy that I felt touched by God and this was one of the most profound.

Near the end of this week I finally went three days with no bleeding or leaking and on Saturday, February 12, 2011 we planned a long visit from my children.  They had visited several times, but not for very long.  It was very hard being away from them and I had taken to reading them books over the phone.  My 7 and 4 year olds loved this and I had already read them each a couple of books.  But, on this day they were going to spend the entire afternoon and we were going to order pizza and attempt to play games and watch a movie.  When they were on their way over I got up and used the bathroom and pulled the help cord for the nurse because a huge amount of blood had started pouring out of me into the toilet.  Right when they got me back in bed and were once more hooking me up to the monitors and giving me yet another large bore IV, my family came into the room.  I could see that my 7 year old son was upset at all the commotion, but we tried to put on a happy face.  We immediately called my husband’s brother Terry and he came and picked up my children and spend the afternoon with them so that they would be spared the stress.  Once more everything seemed to stabilize, but this time they determined that I now had to be on complete bed rest and was not to shower or get up to use the bathroom any more. 

The next evening things got progressively worse.  I had bleeds at 6, 8 and 10pm.  I begged for my mother-in-law, my mother and any of our siblings to come and pray with us.  Our last visitors left at past 1am. The next day was Monday, February 14, 2011, Valentine’s Day.  My husband and I had had “big” plans that day.  Fortunately he had already given me an assortment of chocolates several days prior, but on this day he was going to bring me a spectacular dinner from a nice restaurant that was down the street from the hospital.  Unfortunately, my bleeding did not subside and I had large bleeds at 4 and 8am.  I began to realize that I would not be getting a nice dinner that night.  At 3pm the doctor came and checked me again and told me that he believed that I would be OK through the night.  However, at 4pm I had another bleed of 150-200ml and then bled every time I moved.  At 4:15pm they called him and he was on his way home, but turned around and came back to the hospital.  By the time he got there at 4:45pm I’d had three more bleeds of 50-100ml and I’d had pain when they examined my uterus.  Before determining any course of action he performed a speculum exam and I don’t know what he saw, but he immediately said that I needed to have an emergency c-section.  I was 25 weeks and 5 days pregnant at this time.

 As they wheeled me down to Labor and Delivery, the priest at the hospital made it to bless us.  He had given me anointing of the sick only a few days prior.  This was without a doubt the most terrifying moment of my life.  I was afraid for my baby’s life and for my own.  I doubt that very many women die in this day and age, but they’d had to warn me of the risks and due to the complete placenta previa I was at a risk of large blood loss from the procedure and of course death.  Only my husband was permitted in the operating room, but my mother, mother-in-law and my best friend, Angela, all came to the hospital and prayed in the waiting room.  Due to the position of the placenta and in an effort to be gentle with my baby, Dr. Bronski performed a classical or vertical c-section.  I believe that he began cutting me open at 7:20pm and she was born at 7:22pm.  They must have thought I was nuts at this point because I was crying out to God to save us.  I could not see her when they took her from my womb, but the nurse who was attending to me leaned down and whispered in my ear, “Did you hear that?  She’s crying!”.  I listened closely and sure enough, I heard the sound of a tiny baby crying!  She did not cry for long and immediately the NICU team gathered around her and stabilized her.  They announced to us that she was 960g (2lbs 2oz) and 13.25 inches long.  Once she was stable, they quickly showed her to me, wrapped in a blanket and whisked her from the room.  They allowed my husband to follow them while I was being stapled up.  He joined me in the recovery room pretty soon after, as he was told that he needed to leave while they were hooking her up to the many machines that would save her life.  There he showed me the pictures that he had taken of her with his phone.  We had been too distressed to think about bringing a camera with us into the operating room.  Soon after, they once again told him that he could visit her and so I was left alone, to pray and hope for our little girl, whom we had named Joy Maria Juliana. 

Once I was in my post partum room, my mother, mother-in-law and friend were able to join me.  This was wonderful, as my husband spent the next several hours with our little girl.  I realized that night that she must be amazing because he hardly slept that night and instead preferred to be at her side.  I was not able to visit her until the next morning, but the nurses immediately started having me attempt to pump milk for our little girl.  While breast milk is always best for babies, it is referred to as “liquid gold” in the NICU.  The occurrence of infections in the intestinal tracts of these extremely premature babies is much higher when formula is used than it is with breast milk. 

Seeing her the next morning was heart wrenching.  She was hooked up to an oscillator ventilator, which was forcing 300 breathes a minute into her and which was linked with nitric oxide to help combat her pulmonary hypertension.  She had IVs in her umbilical cord providing her with nutrition.  She was also hooked up to monitors that measured her heart rate, respiratory rate, oxygen level and temperature. She was so tiny, but the nurses were already calling her feisty. She was already trying to take her own breaths, which amazed us.   In the first few days I was unable to stay with her for very long due to pain and recovery from the operation, but my husband visited her often.  It was horrible having to leave the hospital without her 4 days after her birth.

My family and spent her entire NICU stay living in my parent’s home in Herndon, VA.  This enabled us to be only 20-30 minutes away from her instead of 1-2 hours away and my mother and sister helped with watching our children so that we could visit her nearly every day. 

The first three weeks of her NICU stay were intense and terrible, for her as well as for us as her parents. She was able to get off of the ventilator after 6 days when they put her on CPAP instead.  Her next two weeks were the worst as she had acute renal failure and low blood pressure as a result.  This caused her to need more and more pressure and oxygen from the CPAP.  During this time the doctors and nurses would not and could not tell us if she was going to make it.  Finally after three long weeks she turned the corner and they were finally able to begin feeding her again and to lower the settings on her CPAP.  The next morning Dr. Lazarte discussed with me the status on all of her organ systems and when he had finished he told me that he believed that she would survive.  I cried and told him that we had been told to abort her at 19 weeks and that she would never be able to breathe because of low amniotic fluid.  He was shocked and over the next months joked many times, “If only those doctors at Johns Hopkins could see her now.”.  I began to realize during her NICU stay that all of her struggles were entirely due to her prematurity and that her low amniotic fluid had not put her at any disadvantage.  Many of the other babies born at 25 weeks had more complicated NICU stays than she did and she was pretty much in average condition for a 25 weeker. 

The rest of her NICU stay was still heart breaking for us as parents, but was mostly filled with being weaned slowly off of her oxygen support and lots of the A’s & B’s – apnea and bradycardia.  At 9 weeks old she was able breathe without any assistance and we were thankful for every breath she took.  All she had left to do in order to come home was to be able to eat from a bottle instead of her feeding tube. She came home on May 7, 2011, the same day that our oldest had his First Holy Eucharist.  We were overjoyed, the impossible had become possible.   We had all 4 of our children at our home with us and life could finally begin to be somewhat normal once more.

Sunday, March 11, 2012

Meet Jordyn!


This is the story of my baby girl. I'll let you in on our background. I am recently, a single, 24yr old mother to Rylee, 3 yr old (2-10-09). Every part of my pregnancy with Riley was wondering wrong, gestational diabetes, anemic. The whole experience was horrible. She was born 4 days before due date 8 lbs 7oz.

Now for Jordyn. Which is my preemie. 

Same dad as Rylee, but having relationship problems, and caused alot of stress on myself, which results in Jordyn being born premature.

Jordyn was due Nov 7th, 2011.
Jordyn was born July 23rd, 2011.

My whole pregnancy I was miserable. I had a lot of cramping, nausea, vomiting, bleeding. At 20 wks, I just had an ultrasound. I was alone, when I found out I was carrying a second Princess.

Just 2 wks after, went into doctor because something was not right, too much spotting. They said it's normal, unaware, a wk later I would be giving birth to my daughter.

Friday July 22, I woke up sick. I take the day off to relax. It was one of the hottest days for Missouri. My daughter, Rylee, and I went to get ice cream. Worst part is my car. Battery died.  So for 3 hrs I'm waiting for someone to come get us. We get home, and finally get to relax. Around 8:30pm, I start getting cramps (which turned out to be contractions). As the night goes on they get stronger. Around 12, when Colt gets home, it goes down hill. I am passing quarter size blood clots, throwing up, dizzy, contractions getting stronger. I keep telling myself there is no way I am in labor. I am only 25 wks. The worst keeps getting worse. I finally have to call the in laws to come get Rylee, around 2am. Luckly, the hospital was only 20 min away. The whole ride was fine, until 3 blocks from the hospital. By this point, I knew the worst had happened. I was in labor, but nothing prepared me for giving birth to my daughter at 25 wks in the truck a block from the hospital.

We pull up to the er, freaking out. I was almost passed out from blood loss. The only two things I remember is how fast everyone was moving, and and how they all seemed so worried.

Jordyn Leann was born enroute aroundish 2 30am, at 25 wks. 1 lb 10oz 12in. She was given a 7% chance of living past the first 8hrs. They said I lost a lot of blood and were surprised I even survived myself.
They were right, the first 8 hrs were gonna be the deal breaker. At 10 30am, doctors were preparing me for the worst. They had to look me in the eyes and tell me they had done everything they could do for my baby. They were giving her an emergency blood transfusion. I prayed and prayed, cause that was all I could do at this point.
At 11:15 the same doctors were back. I was in tears, thinking the worst had happened. But with tears in the doctors eyes, giving me the biggest huge and smiles. They tell me, she pulled through it. Amazingly, she proved them how strong she was.

Jordyn has had several ups and downs. This whole experience opened my eyes.

Jordyn has had many surgeries. Her pda, had to be closed, need a long term iv placed, broviac, and her intestinal surgeries. Huge blockage and part of her colon had to be removed. The poor baby will have 3 good scar stories to tell when she gets older.

She has fought through 5 major infections. On and off ventilators. She has been a fighter, she has pulled out every tube, she could get her hands on. 

She has struggled with oral feeding since day one. Slowly she is accepting her bottles. Being offered 15 ml every 3 hrs.. On Feb 22nd, Jordyn had her eye exam, and we received news that she was not improving. She wasn't worse but for her age, she should be better. Poor baby had yet another surgery, later that same day, this time it was for her g-tube to be placed. One day of recovery, she turns 7 months old, then Friday 24th Jordyn receives laser eye treatment.

Doctors said it would take a week for her to have bowel movement. Jordyn once again proved them wrong, overnight.Saturday she had a dirty diaper.. She began to feed 25 ml of neosure via g-tube on continuous drip  And has improved since.. She is curretly eating 90 ml over an 1.. Eating every 3 hrs.. During the day and at night she is on continuous drip over 8 hrs.. Her eyes have improved. Which is also amazing that they can already see improvement. 

I am proud to share, Jordyn came home Wednesday, March 7!  She left the NICU weighing 12 lb 7 oz, after 228 days.

She has been everyone's favorite, everyone knows at least her story. It's amazing how quickly you become Attached to the Nicu nurses. Just 8 months, I love and know these women like family.

People keep asking me how I stay so strong and not break into tears. The only thing I say back is, God has a plan for us. He knows I am strong enough to handle the stress and effort it takes to care for a premature baby. I do break into tears, but, now they are happy tears. My daughter, has proven herself over and over, so I must also prove am strong enough.

One day old
Three days old
First time holding Jordyn--four weeks old
Almost five months old
Going Home!


Saturday, March 3, 2012

Meet Carlee

My name is Abby. With my last daughter, who is two years old, I had pre-eclmapsia at 39 weeks.  This will also follow in my last pregnancy but worse.

At 28 weeks the doctor said, "You need to stop stressing out, your blood pressure is 140 over 89." I said, "okay."

At 32 weeks my blood pressure was 150 over 90 and she said, "You have no protein in your pee, so I'm not too worried about it." I said, "Okay." She said, "The reason you keep coming back every 2 weeks is because of preclampsia." I said, "Okay."  So she said, "Let's see how you do with three weeks then you can come back."

At 33 weeks and 2 days I woke up out of a dead sleep screaming because I couldn't breathe. It felt like someone was sitting on my chest I was numb my eyes were blood shot! And my husand said, "You're fine Abby." :/ I was getting sick. I couldn't eat. I was shaking. I couldn't see.

At 34 weeks on the dot I went to my appt and I went back got my blood pressure done. The nurse looked at me and said, "Are you okay?" I said, "No, I'm not." She said, "Yea, because your blood pressure is 212 over 99." I said, "Oh." After she went out, the doctor didn't wait.  She came in and she said, "Have you felt her move today?" I said, "No." She looked at me. She got a heart beat, but Carlee's heart beats were 100 and lower.  I said, "My chest hurts." She said, "That normal" :/ So she told me to go to the hospital NOW, don't go home and get my stuff. I needed to go now, so I did and went to labor and delivery.

 I was getting checked in where they get the info before you have the baby. She was typing it down.  She said, "What's wrong?" I said, "Nothing." She looked at me and said, "What's wrong?" I , "It's really heard to breathe." She checked my pulse.  She said, "Oh honey! omg!" She called for the doctor and said, "This women I have here she 34 weeks pg and her heart beats are 20!" After that call, 5 different doctors came in. I had to lay on my left side I had to get a EKG and it showed 40 beats a min and my bp was 215 over 100.  Then I had to go to another room where they gave me mag.  Then I was a different person. I had a seizure when the doctor was doing a ultrasound.  Then I had to go to ICU-CCU. I was miserable!!!! I was there, getting sick everywhere.  One of the doctors stayed beside me the whole night. I had Carlee by a urgent emergency c-section.  I kept having seizures. I had heart failure and if we didn't have the appt that time we both would of died of Eclampsia.

Carlee Elizabeth was born on June 28, 2011 at 12pm something. :/ She was 4lbs 3oz. She had jaundice, kept having bradys when she moved or ate.  She came home 2 weeks after she was born. She doesn't have any adjustments for her age. She's right on target, but she has to get glasses. If that's all I got from it, let it be. I have a beautiful daughter. God truly blessed me with a wonderful family. I just found out that I have Vac Tachycardia where my heart beats to fast :/

Wednesday, February 29, 2012

Meet Isaiah


I found out I was pregnant in early February 2011. I had just turned 35 and pretty much had given hope that motherhood was in my immediate future, so I quickly embraced the news as my blessing. My 1st trimester came and went with little issue except for painful fibroids at around 11wks that gave me sneak peek at the LO,  but thankfully no morning sickness. When my 2nd trimester kicked I felt that beautiful pregnancy glow you always hear about, until my 27 week appt. when I learned that I was a carrier for SMN1 the genetic condition that is a marker for Spinal Muscular Atrophy. After speaking with genetic counselors & my physician, I made the decision to have an amniocentesis at 28- weeks because a blood test from his father & I would not rule out the condition. In my mind & heart I had already fallen in love with my unborn child, SMA or not and just wanted to prepare as best as I could for his delivery and beyond if he was diagnosed with the condition. The test took 3 long weeks to confirm, but on August 11th, it was confirmed baby boy had at least 1 copy of the SMN1 gene like me so he though he might be a carrier, he would not have SMA.

Also on Aug 11th, it was the 1st night I started feeling sick & threw up in my pregnancy. My hands & feet were also visibly swollen, but I never tested positive for protein, but I was being monitored. At my last appt that Mon. my OB took my pressure a couple of times but it also showed within normal range.  That weekend my appetite was off, which seemed odd and on Sunday night, I once again started throwing up and having cold sweats. I called my OBs office 1st thing in the morning, of Aug. 15th, but I really believed it was something I ate & chalked it up. By afternoon, I ran an errand at the bank & prior to returning I started to feel worst, so I stopped at the local health center around 3:30pm. The nurse asked me how far along I was and I said 32 wks, she said my pressure was high. I immediately called my OBs office, & turns out I just missed a call from them because I left my house number.  She immediately asked to speak with ER doctor & told me I needed to be transported by ambulance or get a ride to L&D. 

I got a ride & arrived by 6pm & blood tests were started & my pressure checked again.  It was getting higher.  By 7pm, the triage room went from 1 nurse to about 5 people including the on call OB,  anesthiologist. I swear everything happened so fast: I was diagnosed with a severe case of preeclampsia (pressure now peaked at 206/150) and HELLP. The only cure for this was to deliver the baby because my liver & kidneys were shutting down. I was wheeled in for my C-sec at 9:03pm & my son was born at 9:17pm, 3lbs 7oz 16 ½” long at 32wks.  Because of the HELLP condition I was given a general anesthia & no one was allowed in delivery rm. When I finally layed eyes on him later that evening, I still could not believe what had just happened that day & how tiny he was. 

After 37 days, Isaiah was discharged from the NICU at 4lbs 6 oz to the loving arms of his mama and his entire family.  There were some rough, but many beautiful days of our journey together in the NICU which I will never forget.  Isaiah is now a healthy baby at 14lbs 6oz at 6mos actual age. 








Thursday, February 23, 2012

Meet Aeden

 Aeden was born at 26wks 5 days, at 2lb 2oz, 14 inches, on July 23, 2011.


At 22 weeks my doctor notice my cervix was shortening and I had started to funnel. He referred me to a high risk ob to hopefully have a cerclage but in place but high risk ob refused so my reg ob sent me to a second high risk ob with the same hopes and still denied, I was told to just take it easy. My reg OB continued to check me for the next 3 weeks and then I started have back contractions that sent me to the hospital multiple nights to get a shot or meds to stop the contractions. The contractions were not affecting my cervix, in fact it had started to lengthen.


I began my best rest vigil, my husband elevated the foot of the bed and I only got up for restroom breaks and my 20 mins for supper.  At the beginning of my 26 wk, I spent 3 days in hospital on magnesium to stop the contractions (still in my back) that were happening every 5 mins.  I was released on Thursday and woke up Friday morning with what I thought was gas pains. After about 10 hours and they did not subside I started to have some weird discharge so I called my reg ob who said to head to our local hospital. 


When I arrived I was 2cm dilated and had to be transferred to another hospital with a Level 4 NICU - we (my son and I) both had our first ambulance ride. We arrived about 2am Saturday morning and I was 3cm dilated. I continued to have these horrible contractions and continued to dilate then about 830am my water broke and the contractions only got worse. Finally at 1115am they said I could have an epidural, in the process of the epidural Aeden moved into position to be born.  I started pushing at 12(noon) Saturday and he was born at 12:20pm. My epidural kicked in for the last 5 minutes of the ordeal. 


He was on the vent for his first night then on high flow nasal canula for the remainder of his 86 day NICU stay. He had one small "blip" of a perferated bowel which put him on the ossilator vent and then he had to be stepped back down to reg vent then to his nasal canula, during this "blip" he was given only a 50% chance of making it through the weekend, but he is my "little fire" (the meaning of his name). Our NICU stay consisted of constant reflux, apneas and bradys.  


He stayed in the NICU until 39 weeks gestation because doctors were certain he would need the "nissen" sugery, however about middle of his 38 weeks he decided to eat without desatting.  I spent these 3 months in the ronald mcdonald house right across the road from the hospital, while my hubby ran our home and continued to work.  He came home on oxygen and apnea monitor on October 17, 2011. 


I lost my job due to having to take care of him and his inablitlity to attend day care, so now I am a full time mom to a healthy happy 6 month old that weighs 10lbs 14oz. He is developmentally correct with his adjusted age of 3 months - a little ahead actually with some of his milestones. He is small for his age but the doctor is certain he will catch up.  During my entire pregnancy we jokingly called "him" butterbean becuase of the way my 8 week sonogram looked - now we jokingly say that if we knew he would have been born the size of a butterbean we would have called him watermelon instead.  He is truely a miracle and I wouldn't trade a day of our ordeal for anything in the world!!