Where It All Begins...... MEAH, We love you baby girl with all our hearts....
Phote by Ashlee, Linnea's Lasting Memories- Photography
Matt & I talk about July 27, 2010 often. We both had been anxious for me to go to my Dr.s appointment to confirm a home pregnancy test that I had taken a week earlier that quickly read (+). Matt vividly recalls being out for a walk and bike ride with our kids when he received my text message saying we are pregnant with "TWINS." My Dr. noticed that my uterus was measuring larger than where it should have been according to the dates I gave him for my last cycle. The office did a ultra sound which confirmed an 8week twin pregnancy. We were so very thankful to God for this double blessing, and just prayed that the pregnancy would stick.
I have experienced multiple miscarriages in the past so I was on pins and needles everyday. We managed to move on with life day dreaming about what it was going to be like to have twins, what it’s going to be like with "5" children ages 5 and under, and just being plain old excited for this next chapter in our lives.
During my 18 week follow up appt, the Dr. confirmed that both babies were still growing, but that baby B was a little smaller than baby A. Because of my history with pregnancy loss and now being pregnant with multiples, it was recommended that I have a Level II ultrasound completed by OBGYN Multispecialist. We followed through and had an appointment the following week. Matt and I waited patiently for over an hour in the waiting room to be called back. I remember Matt and me making a comment that everyone that came from the back looked tearful. Little did I know that I would be the next one crying.
During the long drawn out ultrasound, I laid on the table holding Matt’s hand praying and feeling so positive that things were going well with the babies. During the examination the tech was talkative and upbeat when looking at baby A, naming body parts & measurements etc…During the examination of baby B, she became noticeably quiet. I just remember Matt blurting out “What about baby B?” This is when she said “Umm the Dr. will do her own exam and then talk to you, I’ll be right back.” When she left the room Matt and I both agreed that the techs response was a little off and something seemed to be wrong.
The Dr., tech, and genetic counselors returned to the room. The Dr. completed her quick exam and said baby A looks great, but baby B has a single umbilical artery (normally, there are 2 arteries in the umbilical cord) and a significant problem with the development of her heart. She went on to say that baby B has a condition called Hypo Plastic Left Heart Syndrome. As Matt and I both sat in shock, we listened as she explained the Syndrome. Basically, I remember the Dr. saying that the left side of baby B's heart is underdeveloped. We were told that it is a fatal heart condition, and if NOT treated with a "3" stage heart surgery, the baby would not make it. We were also told that children born with this 20 years ago, would not make it & were considered "Blue Babies" During this appointment it was discussed that baby B's heart defect may be an isolated problem in development or it could be associated with a chromosome problem. We discussed the option of an amniocentesis *Amniocentesis is a prenatal test that allows your healthcare practitioner to gather information about your baby's health from a sample of your amniotic fluid. This is the fluid that surrounds your baby in the uterus.
The most common reason to have an "amnio" is to determine whether a baby has certain genetic disorders or a chromosomal abnormality to evaluate the baby’s chromosomes. Matt and I declined the amniocentesis, due to not wanting to take any unnecessary measures or risks. We felt that regardless of the outcome, these are our children and we will love them no matter what. We were also told that chromosomal testing could be done immediately after birth. It was at this appointment that we also found out that we were expecting fraternal twin GIRLS.
What was kind of flukish about this whole situation was that before knowing anything about my babies heart condition my neighbor's sister who was visiting over the summer had asked me to look up on the internet the man who was involved with one of the 1st heart surgeries to save "Blue Babies" lives. She had watched a documentary on him in the past and wanted to recommend it to her sister, but could not remember his name. Therefore, I was a little familiar with one of the procedures that our baby would have to under go, even before receiving her diagnosis. Also, Matt's class was ironically covering a segment that had to do with the heart. I honestly feel like that was God's way of preparing us for what was to come.
We were devastated, but determined to find out everything there was to know about this condition. Matt and I researched & connected with others who could provide us with information and a connection to what we were going to face in a few months (Thanks Novaks we appreciate you greatly!! baby center.com, & others who became informed & provided us with information and inspiration that all would be fine.)
* What is Hypo plastic Left Heart Syndrome?hypoplastic left heart syndrome (HLHS), the heart’s left side — including the aorta, aortic valve, left ventricle and mitral valve — is underdeveloped.
*What causes it?In most children, the cause isn’t known. Some children can have other heart defects along with HLHS.
*How does it affect the heart?In HLHS, blood returning from the lungs must flow through an opening in the wall between the atria (atrial septal defect). The right ventricle pumps the blood into the pulmonary artery and blood reaches the aorta through a patent ductus arteriosus (see diagram).
*How does the defect affect my child?The baby often seems normal at birth but comes to medical attention within a few days of birth as the ductus closes. The baby may appear ashen, have rapid and difficult breathing and have difficulty feeding. This heart defect is usually fatal within the first days or month of life unless it’s treated.
*What can be done about the defect?This defect isn’t correctable, but some babies can be treated with a series of operations, or heart transplantation. Until an operation is performed, the ductus is kept open by intravenous medication. Because these operations are complex and need to be adapted for each child, it’s necessary to discuss all the medical and surgical options with your child’s doctor.
If you and your child’s doctor agree that surgery should be performed, it will be done in several stages. The first stage, referred to as the Norwood procedure, allows the right ventricle to pump blood to both the lungs and the body without the need for the ductus to be kept open. Blood is directed to the lungs through either a Blalock-Taussig (arrow on inserted picture) or Sano shunt. The Norwood procedure must be performed soon after birth. The second stage (bidirectional Glenn or hemi-Fontan) is usually performed between 4 and 12 months and the third stage (lateral tunnel Fontan or extracardiac Fontan) is usually performed between 18 months and 3 years.
From the day that we found out our babies diagnosis, my "normal" twin pregnancy turned "abnormal" and became consumed with fears for our babies. My silly little fear of going into labor with multiples no longer existed. I now thought giving birth to the girls would be the easy part. Life after birth was now what I was afraid of. I was afraid of the challenge and very scared for my baby who was going to have to endure a lot to have a chance at life.
At our 22 week check up at the OBGYN MultiSpecialist, things once again took a drastic turn. During the detailed ultrasound it was noted that Baby B's growth was further behind that of Baby A, there also now appeared to be a narrowing of the front portion of the baby B's head and a large choroid plexus cyst was identified along with the single umbilical cord, heart defect, and an increased amount of amnio fluid. The findings gave increased concern that Baby B had some definitive traits of Trisomy 18 or 13 (both severe chromosomes problems associated with mental retardation, health problems and a shortened lifespan). Again, the option to have an amniocentesis was brought to the table, and we declined. I instantly became sick to my stomach at what I was hearing, but at the same time wanted to believe that the information seen on the ultrasound was not true. I had lots of questions, especially of what all of this would mean for both babies. The Dr. explained that because our babies are fraternal twins who have their own everything, that the only way Baby A would be affected by Baby B is if I went into pre term labor because of having an excess amount of fluid. She explained that other than the babies sharing my womb at the same time, it's like me having 2 completely different pregnancies at different times.
Next we met with the pediatric cardiologist who refined our baby’s heart diagnosis to single ventricle common atrium. With a SV CA, our baby would still require the 3 stage surgeries with the 1st one being a little less complex then what would be needed for a HLHS baby. This was relieving news, but we were told if our baby is (+) for a chromosome problem, then they would not move forward to do the heart surgeries.
At 24 weeks pregnant, my appointments consisted of sometimes 2-3 a week. I met with the OBGYN MultiSpecialist every other week, my OBGYN 1x a week. I had Non Stress Test completed on a weekly basis and did follow ups with the pediatric cardiologist. Our family even met with the surgeon who would perform the pediatric cardiothoracic heart surgeries on our baby girl.
In preparation for what may or may not happen I found myself reading a lot about other families with children who have a chromosome problem, mothers who carried full term knowing their baby has a fatal diagnosis, I also read about and connected with mothers who have lost a twin. I even brainstormed what I wanted to do with my daughter if her life was given a short time (baptism, many pictures and videos, moldings of footprints and hand prints) It was hard for Matt to think about funeral arrangements, but I discussed what we would want to do with her as far as being buried or cremated. We decided that we would have her cremated and then she would be buried with Matt or me. I called a few funeral homes to begin to make arrangements. The bottom line is that I knew that we were about to face a lot & did not want to be caught off guard and too frazzled to handle the situation properly.
Labor & Delivery:
At 33 weeks pregnant my Dr. put me on strict bed rest due to being 4centimeters dilated.... & 5 days later I went into labor giving birth to my baby girls on January 25, 2011.
I woke up with my water breaking at 5:45a.m. Matt was up and ready to leave for work....10 minutes more and I would of been calling the ambulance because Matt would of not been there. As my water continued to break my contractions came on faster and stronger. In a mad rush to get the kids a sitter (Thanks Dara & Holly, I love you dearly and are so happy for my neighbors) and to get out the door to the hospital I was in great pain. We arrived at the hospital at around 6:35a.m.
*Beautiful ~Mylah Nae Buchak (Twin "A")........4lb.6oz 17inch, made her appearance at 6:55a.m.
*Beautiful~Meah Dianne Buchak (Twin "B")........2lb.6 oz, 151/2 inches, was breeched and pulled out by her feet at 7:02a.m.
Our babies were born a day shy of 34 weeks (6 weeks early). Things progressed so fast that I did not have time to ask for pain medication. I could not believe that my biggest worry was giving birth to twins and I just gave birth to twins naturally and felt little to no pain besides the awful contractions.
During my labor I remember being extremely nervous for Meah to come out. Things were moving so quickly and I was scared that the Dr.'s were not aware of my baby’s conditions and potential diagnosis. I remember telling the Dr's and nurses that there needed to be someone to examine her right away because of all of the concerns. They did their job, and did it well. Before I knew it, there were like 40 people in the room. We were very fortunate that we got to hold our babies almost immediately after they were born before they whisked them away to the NICU.
As Matt and I sat in the delivery room, we could barely catch our breath in amazement of what just happened in the last hour and 1/2. We talked about our girls and how Meah was just a little peanut and how Mylah was just the right size compared to our first two children 8.2 & 8.3 lb babies.
Shortly after I delivered the girls, our 1st real encounter of our reality with Meah's life & future was when one of the NICU's neonatologist sat at the foot of my bed explaining our girls post birth physical examination. I recall him saying that Twin A looks great and is requiring nothing at this time. The Dr. confirmed Twin B's heart condition and added that she has a closed pocket in her esophagus. He said her esophagus is not connected to her stomach like it should be. This condition is known as Esophageal Atresia and Tracheoesophageal Fistula.
*What is Tracheoesophageal Fistula?Tracheoesophageal fistula is an abnormal connection in one or more places between the esophagus (the tube that leads from the throat to the stomach) and the trachea (the tube that leads from the throat to the windpipe and lungs). Normally, the esophagus and the trachea are two separate tubes that are not connected. Tracheoesophageal Fistula is also known as "TE fistula" or simply TEF. TE fistula is a birth defect, which is an abnormality that occurs as a fetus is forming in its' mother's uterus. Up to one-half of all babies with TE fistula or esophageal atresia have another birth defect.
Matt and I were not surprised. During our routine ultrasounds, it was noticed that Baby B's stomach was always full of fluid, but the reasoning was never detected. The Dr. said that Baby B's conditions could be due to her suspected chromosome defect and that test were being sent out and would be back in 3-5 days. He also told us that TEF is correctable with surgeries. My mom, Matt, and I just sat in silence for a few minutes and then regained hope by saying Meah will just have to have a few more surgeries then we expected.
Over the next few days we spent time with our girls, talked with the Dr.s and learned the ropes of the West Penn Hospital's NICU life. Initially, the girls were in separate pods and then eventually moved to be in the same pod. Visiting in the morning and at night, we got to know some of the staff pretty well. I am so grateful for the nurses that made our 8 days in the NICU bearable. They were very supportive, even hugging and kissing me as I cried about our situation and Meah's unknown fate. 3 days after our girls were born; Matt and I participated in the team’s discussion about the girls. Mylah was doing good and just needed to continue to eat and grow. Meah was the hot topic...we looked at pictures (x-rays) of her heart, throat, and her stomach. By the end of the meeting the attending Dr. told us that Meah's chromosome testing is not yet complete, but her opinion just by looking at Meah is that she does not have a trisomy or a chromosome defect. I remember her saying that usually babies with the trisomys have outwardly noticeable features, and Meah did not.......About 2 hours later, the same Dr. was knocking at my hospital door. With tear filled eyes, the Dr. delivered Matt and me the most devastating news. She sat calmly and said I'm so sorry, but so far 10 cells have been tested for Meah and they all have an extra chromosome18. Our baby was positive for Trisomy 18. During and after our conversation with the Dr. is when the life that we had hoped for Meah had been wiped away. We had been told that no Dr. would operate on a child with Tri 18, especially with Meah's other conditions being present. Matt, the Dr. and I cried and discussed Meah's condition at length.
*What Is Trisomy 18?Trisomy 18, also known as Edwards’s syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without assisted caregiving.
After learning Meah's results for the trisomy18 defect, I felt backed into a wall and knew that we truly had to give it to God, as we were doing all along. Now our hope for Meah's long term future turned into hope for another moment & hope for another day with our sweet baby & family. I knew we did not have the power of when God and Meah were going to decide when her time was up, but I knew we could do all that our hearts wanted us to do and make the best of the days that we had with Meah. We spent as much time day and night with both girls at the NICU. We held, hugged, kissed, sang, videoed, took pictures and snuggled them together.
We were fortunate enough to have our photos professionally taken with the girls. We owe a special Thanks to Maria from Studio Photographic who is part of "The Now I Lay Me Down to Sleep Foundation." We have beautiful pictures of Meah that we will cherish forever! (NILMDTS) administers a network of more than 7,000 volunteer photographers in the United States and 25 countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby. The entire network of affiliated photographers graciously donate their time and talents to our families and are proud to be able to offer services at no cost.
Our Pastor, Pastor Dean embraced us and our girls and spent some quality time with our family. Both girls received blessings and Meah was baptized on January 29, 2011. I regret not taking pictures of that beautiful moment. I know during the baptism my husband had his biggest meltdown, witnessing our baby girl giving her life to God. It was a very powerful and a beautiful time, the nurses also took part in Meah's baptism, and we were all full of tears of happiness, joy, and sadness by the end.