Saturday, September 6, 2014

Twin pregnancy, TTTS Diagnosis and Premature Birth


March 24, 2010
This is the day that changed my life. The day I found out I was pregnant. I was in such shock I called my friend Tracy and actually sent her a picture of my pregnancy test just to make sure I was seeing it correctly. Her response – “I suck at math but I see two pink lines.” And so that was it. I was single, 42 years old and pregnant with my first child. WOW! On top of that I was self-employed without insurance. But from the moment I knew I was pregnant I knew that this baby was mine and I would keep it. There was no other option for me and so I cried and cried and cried. I cried in wonderment, shock, fear, grief, love and gratitude. I took the 2nd pregnancy test at 2am, just to confirm. Yup, still preggers…. How the hell was I going to do this?

The first person to tell was the father of the baby, M. He was not expecting this and he needed to know. It was quiet shock that sat in the room for a long time after I said the words. What was going to happen with us? We were not anywhere close to any commitment bigger than dating. The evening ended with neither of us knowing anything other than both of our lives were changing.

After telling M I told my friend John. I went to work at the store were I see my clients and John was there. I adore John, he is like the older brother I never had. I knew that I was never going to be able to make it through the day without talking to him and if I talked to him he would know something was up. So I sat down to chat, he said something about the fact that I looked freaked out. I agreed that I was freaked out and went on to give him the news. I started to cry as I said it. Even saying the words brought on overwhelming emotion. I didn’t know what I felt but boy I felt it! John asked me if I would be keeping it. I knew the answer to that one. Oh, yes, this one was mine. John called himself Uncle John and it seemed quite fitting.

The next day I went to Planned Parenthood and had another pregnancy test, the third one. Oh, imagine that, still pregnant. They gave me a tentative due date, 12/1/10 and they gave me a signed document, the size of a prescription, confirming my pregnancy. I told them I didn’t need this and the lady looked at me and smiled saying “If you don’t have insurance, the state is going to require this for you to apply for insurance.” Guess that means I will be applying for AHCCCS – Arizona Health Care Cost Containment Services. They put a rush on expectant moms, only 20 work days before a response.


Telling the Family - April 13, 2010
As it magically worked out, my mom was planning a trip up from Tucson for the weekend, the perfect time to tell her face to face. And so I did. I could barely keep it in. I had to tell her and tell her immediately. I don’t even know if I waited 10 minutes after she got here. She responded quietly but I saw the smile on her face. I saw happiness. I cried when I told her too. Still not knowing how I felt but definitely feeling something. She shared some stories from her pregnancies as we went to Target to buy disposable rubber gloves for when I clean out the cat litter box. We discussed how to take them off correctly. Pulling them off inside out is how you do it, in case you did not know. It’s an old trick I learned as a flight attendant.

Next on the list was my brother Lucas and his wife Whittney. They are expecting their first-born, Owen, the last week of May. It had been a difficult pregnancy for them. Their son was diagnosed with Congenital Diaphragmatic Hernia. That is when the baby’s diaphragm does not develop completely and abdominal organs can be pushed up into the chest cavity limiting the development of heart and lungs. I have seen Owen in good, strong health. His spirit visited me telling me he was going to be ok. I have seen him in perfect health since then. I was excited to tell Lucas and Whittney because now their son was going to have a cousin very close to him in age. What fun! – Anyway, they were excited and very sweet both saying that I would be an amazing mom. I hope they are right.
And then came my brother Josh and his wife Natalie. I told Natalie first, on the phone,she screamed (softly) and told me I had to Josh right now. She put him on the phone and watched as I told him. When she could tell I had told him she began her happy dance in the living room. They had been the only ones in my family who had children and they wanted their three to have some Tomczyk cousins. They had their first at age 21 and here I am having my first at age 42. I am still not sure which age is more challenging……

And next to tell was my sister, Laura, in North Carolina. I called, we chatted for a bit and then I let go with my news. She had lots of questions, like I knew she would. It was a great conversation and a good way to make sure that she will make it to AZ for Christmas with the family!
My aunties (dad’s sisters) and uncle Chuck know along with Bev, the wonderful woman my dad spent the last part of his life with. Everyone has only had words of support and love. You know who you are. Thank you!

I know what a gift my family is to me. I am sure that my baby’s various aunties and uncles (blood relation or not) will play such a big part in his/her life. Both of us are lucky, lucky people.

Kidney Bean: 8 Weeks - April 21, 2010
They say that the baby is the size of a kidney bean this week. How could something so small wreak such havoc on my adult body? I imagine I will be asking this question even more often as the baby continues to grow.

What I have learned about eating – when I feel nauseous I need to eat. The baby wants healthy food, wants me to eat vegetarian, doesn’t like food with a bunch of different ingredients and does NOT like ice cream. Just the thought of eating ice cream again makes me feel sick. I tell you though; I cannot get enough pickles, chips or even french fries!!!!! – craziness!

I got some good news on Monday; I have been accepted by AHCCCS (Arizona Health Care Cost Containment System). I am so thankful knowing that I can get the health care that I might need as a pregnant woman. I have checked into different hospitals and it looks like Desert Banner is my choice. They offer alternate therapies and even a birthing tub. I LOVE the idea of a birthing tub and giving birth in water! Seems fitting for a Pisces woman like me (the zodiac sign of the fish!)

I have been working 6 days a week most weeks and I need to change that – too tired! It is time for me to start figuring out how to make more money with fewer hours. Everyone wants to know how to do that, huh? I will be making some changes to my schedule in the next couple of weeks.

Being pregnant has raised the bar on what is acceptable in my life and what is not. Some things that were acceptable to me as a single woman now have no place in my life since I am now responsible for someone else. These things include how/what I eat, how I spend my time, the people in my life. I am not sure why it took a pregnancy to put a higher value on myself but it did and I am going with it. If something is not good enough for my baby it is not good enough for me.


Single Parent -April 27, 2010
Some big things happened this past week.
I made my first Dr. appt for the first week of May! I am looking forward to it.
I changed my schedule and no longer work on Sundays. I always had clients on Sundays but the numbers were low. I will still be available at the same location on Wed-Fri for them. It will be good to have that extra day off.

The baby and I got our first gift from Auntie Angie! It is a wonderful stuffed toy and a hooded towel in the gender neutral color of green. We are sooo lucky and grateful.
The baby really feels like a girl to me. I can’t wait to find out.

It seems I will be a single parent, very single parent. I had a difficult conversation with the baby’s father, M, to let him know that I do not have romantic feelings for him anymore. I had been feeling this for awhile but put off saying anything. I knew it would hurt him and yet it was true so I could not act as though it wasn’t. I was not going to be dishonest. I told him that I want to work this out as friends and work together as parents. His response was to let me know that he is not sure he wanted anything to do with this now. He ended the conversation with “I don’t know if I will call you again.” I am sad for him and what he will miss out. I am angry with myself for being involved with someone who could do this. Many mixed emotions… I do understand that he could have spoken in anger with the intention to say things to hurt me. Time will tell. I am not making any long term decisions about him but I know that right now I am not spending any more of my time or my energy on him. Focus is growing a healthy baby and building what we need. Time to step up, meditate, connect with my divine support system and take no prisoners – Necessity is the mother of invention – So let’s invent!

Miracle, a Heart Beat and Mothers Day - May 11, 2010
After almost a week in the hospital, Whittney is still pregnant and Owen continues to grow and develop as his parents get the world ready for his birth. I saw the beauty of your love, courage and strength. My nephew, Owen, chose his parents well.

I heard my baby’s heart beat on Friday, a very powerful sound, hearing a heart beat coming from your body and it is not your heart! WOW – I am not just tired, fat and nauseous – I am pregnant too!!
The doctor also mentioned that she was concerned about my thyroid. It is a little swollen and my thyroid is under active so I am going in for a thyroid ultra sound next week. They will also be checking my blood. I understand that a thyroid problem can cause problems with pregnancy so as much as I do not want to, I may need to go on medication for it. Maybe my tiredness is related to this….

My baby ultra sound is scheduled for May 24th so pictures will be forth coming!
Reminder to self – Never, never, never have 3 glasses of lemonade for lunch – at least not without Tums very handy for the heartburn I just created!

I had my “first” mother’s day this weekend. Thank you to all of you who thought of me on this day. I really thought that I would never experience this in this lifetime. In honor of mother’s day I went shopping and bought some maternity pants and a new bra. They are my friends!!!!

Birth, Surgeries, Twins and Babies R Us - May 27, 2010
It has been quite a time since I have written and as you can see from the title much has happened.
My nephew Owen was born via c-section Monday, May 24th. Welcome to the world my dear! He had his diaphragmatic hernia surgery on Wednesday morning and did amazingly well. He is currently on a heart/lung bypass machine and will continue to be for the next 10-14 days. Keep healing Owen as your lungs develop and grow and keep astounding the doctors left and right! Whittney is healing well from the c-section. Congratulations to my brother and his wife.

And yes, the next word of the title is correct, twins!!! Had my first ultra sound on May 20 and there they were, very clearly, two little heads, twin A and twin B. To say I was surprised is beyond an understatement! On top of that they share the same placenta so that means they are identical – Identical!! So two little girls or two little boys, oh my! I have googled identical twins the official answer as to why it happens is “they are unsure”. So I will just add another piece to the amazement list for this entire experience for me. Hopefully I get to learn the sex of the babies about mid-June. Keep your fingers crossed. I want to know!

Made my first trip to Babies R Us today to do some baby product research. With my mom and sister, Laura, in tow I signed up for the registry and became overwhelmed by the choices of bottles, cloth or disposable diapers, breast pumps, teething rings and the list goes on and on and on. I did choose a double stroller and 2 car seats. The double stroller was an important choice because I had to make sure it would fold up small enough to fit in the back of my little Scion xD. Who would have thought that THAT would be one of the biggest deciding factors? WOW

So much to continue to consider especially with twins. There are some things I know for sure, their names are not going to be matching or rhyming, matching clothes will be worn sometimes – maybe – and I am doubly blessed, as long as I live through the blessing of them growing up!


Rollercoaster - June 10, 2010
I have been sitting on writing this entry for awhile. It breaks my heart to write that my beautiful nephew Owen passed on May 30th, 11:57a, in the loving arms of his parents, Whittney and Lucas. As his extended family left the hospital together that day there was such a sense of despair. Lucas and Whittney were not able to bring their baby home. Everything about it was unnatural and unreal.
Owen’s services were beautiful and the room was filled with his extended family along with the loving support of so many of Lucas and Whittney’s friends and co-workers. This young life touched so many, what a blessing.

As a soon to be mother, Owen’s life touched me deeply. This experience has brought me to understand that I am to be grateful for every cry I hear, every diaper I have to change, every inch they grow and every bite of food they take. It will be my gift to see them grow up. I hope to remember this every day of their lives.

My twins, I will see you again on July 12th, when I get to find out if you are boys or girls. Between now and then may I continue to feel you grow.
Owen, Lucas, Whittney I love you.

Fathers Day - June 20, 2010
To my brothers, Josh and Lucas, who gave me the opportunity to be an auntie to one beautiful niece, Caitlin, and three amazing nephews, Logan, Ethan and Owen – To my own father, I would not be who I am without you – To Mike, who gave me the chance to be a mother just when I was beginning to believe it would not happen in this lifetime – Blessings to all who play the role of father on this Father’s Day.

It has been pretty quiet couple of weeks since my last post. Still healing from Owen’s passing, personally and as support (I hope – in any way I can) to my family members. Crying every day at least once a day. Sometimes I can speak of Owen without tears and sometimes I cannot. My nightmares are softening and getting lighter. I talk to my babies every day and they tell me they know Owen, they have met him and they talk to him.

My belly is definitely growing and I have so far to go yet! At 16weeks I have two babies about the size of apples growing inside. I KNOW I have gained weight since my last doctors appt, which is a good thing! I hope my maternity clothes will continue to fit me.

My business has slowed down, I guess due to the 100+ weather and summer time. I am working hard to remind myself that I have and will continue to have everything I need for myself and the babies. The weight of doing it on my own gets overwhelming at times. Don’t get me wrong, I have support and wonderful friends and loving family and yet it comes down to me, my beliefs and making it happen. As I told the babies' father once – “Of course it will work out because I will make it work out. There is no other way.” I remind myself that I was given this gift of being a mother of two and so I have to believe that I will also be shown the way to care for them. This is a blessing.


Blossoming - July 9, 2010
Ok, so it has happened, I have found my first pregnancy stretch mark, on my breast of all places! Blah…….

I swear I have gone from looking chubby to looking pregnant over night! I am without a doubt pregnant, even down to the waddle. I finally gained my first pregnancy weight, 11 lbs in one month! As the doctor said yesterday, women carrying twins (or more) experience pregnancies that move faster with stronger physical effects. So breasts have blossomed, belly has blossomed and ankles have blossomed (lovely swollen ankles). I was gifted with a big bag of maternity clothes from a friend who was pregnant a year ago but I can’t fit most of them. I am too big already!!! Thanks anyway Amanda.
Babies sitting on sciatic nerves – so not right – Ouch! It is getting impossible to sit and see clients all day without a walking or laying down break a couple of times a day. But I do have a friend who knows pregnancy massage, yippee John!

Spent the 4th of July weekend with most of my family in Tucson to celebrate my grandpa’s 90th birthday. It was wonderful to see aunts, uncles and cousins who I have not seen in years! I was so happy that my wonderful brother Lucas and his wife Whittney (Owen’s parents) where able to join us. I know it wasn’t the easiest visit for them since they should have been able to show off their beautiful son Owen to everyone. Owen’s spirit was there.

I am blessed with a loving supportive family and I know it. The father of the babies continues to seem – as a rule – disinterested. I spend most of my time and energy in faith, trusting that they AND I will make it to their birth and beyond but there are times when I am aware of sadness and loneliness, desiring someone to share this with me on a day-to-day basis. The thing is, that even if the father was willing to be here with me everyday, he is not the one I love. He is not the partner I need. I don’t dislike him, truth is I feel no connection to him. But he is the father so I dance the line without clear-cut definitions, expectations (maybe unfair) that are not met and confusion….

But I am going to be the mama of amazing babies! And July 12th I find out their gender and confirm their development. Over the past couple of days I have wondered if maybe there are three in there not just two! lol

Twin to Twin Transfusion Syndrome - July 12, 2010
July 12th, the big day when I got to find out if the babies were boys or girls. The opinions were split 70/30 in favor of girls. That was my guess too. 70% of us were wrong. They are boys! Very obviously boys as both of them showed off their “boy parts”. Two active, inquisitive little boys, oh my….

But that was not the only news I got. This ultra sound was a full one with the measuring of everything on each baby. They found some differences in size and in the amount of fluid in each baby’s sac. All of these things pointed to Twin to Twin Transfusion Syndrome, TTTS. Of course I had never heard of such a thing. It is fairly rare. It only happens about 10% of all identical twin pregnancies, around 2000-3000 a year. (Since I wrote this I have learned that it happens to upwards of 15-20% of identical twin pregnancies, known as mo/mo or mo/di. It has also been known to happen to di/di identical and possibly non-identical twins.) I was supposed to travel to Portland to visit friends and family later that week. When I asked the doctor about going, her response was. “If you miscarry you will do it whether you are here or there so go and enjoy yourself.” Not a response I was impressed by. I chose not to go…. The doctor also recommended that I get an amniocentesis done to check for genetic issues, which I refused. She did recommend a perinatalogist group for me to follow up with.
I went home shaken in shock and fear, getting on the internet I found the www.tttsfoundation.org. I read everything, emailed the foundation and immediately started on the recommended diet of extra protein and iron. I heard back from the foundation and they recommended that I meet with Dr. John Elliott if I could. He was on the TTTS board and actually had come up with the first procedure to help with the syndrome in the 80’s. Before he introduced the procedure of amnio reduction the mortality rate was 90%. His introduction of this procedure dropped it to about 50%. As it turned out Dr Elliott was a doctor with the group I was referred to. I made an appt with him for a couple of days later.

I went in for my appt with Dr Elliott, getting another complete ultra sound and a full sit down discussion on TTTS. Dr Elliott choose to NOT diagnose the boys with TTTS but he did recommend weekly ultra sounds to track their progress because the syndrome can move and change quickly….
So that was it. I found out my babies were boys and I got to enjoy that news for approximately 10 minutes before the words twin to twin transfusion syndrome were said. Well, at least one of the expert doctors on this was in town and was NOT diagnosing them yet. This had to be good, right?

Houston: We Have A Problem - August 5, 2010
July 26th – it is time for another ultra sound – one a week to see if/how the twin to twin transfusion syndrome is progressing. 10am ultrasound now shows a “stuck” baby. One of the boys’ sac, Eli’s, had reduced down to almost nothing. It broke my heart to see his little body all curled up and unable to move. So, it is official. The boys have TTTS and something must be done about it. The doctor sends me directly from the office to the OB Triage at Good Samaritan Hospital in Phoenix.

I am terrified. Trying very hard not to cry, I call my mom in Tucson, let her know what is going on and ask her to drive up and be with me. I drive myself to the hospital. I end up being a direct admit to the hospital and am put in a room in labor and delivery.

The doctors come in to talk about options for the babies. We could do everything from doing nothing, amnio reduction, surgery to selective reduction…… I was also told that if I choose the amnio reduction it would be very unlikely that I could choose surgery later as many surgeons will not do the surgery after an amnio reduction as it can cause complications for the surgery. The surgery is endoscopic laser ablation. The surgeon lasers the blood vessel connections between the two different umbilical cords so that each baby then gets his own blood supply and one cannot take from another. The problem with the surgery is that there is no one in the state of Arizona who does it. I would have to go to Houston or LA and possibly pay for EVERYTHING out of pocket. I did not even consider the surgery as an option and after some quiet time went with the amnio reduction.

The reduction was done that night. The doctors went in with a needle using an ultrasound machine to stay away from the babies and with gravity allow the amniotic fluid to flow out of the largest sac, Nolan’s. The maximum they will remove at one time is 2.5 liters. They have found any more can cause problems with the placenta. So they removed 2.5 liters from Nolan’s sac in the hopes that would give Eli’s space to grow.

I spent the night in the hospital and was released the next morning with another ultrasound scheduled for the 29th. When I went in on the 29th I learned I had another “stuck” baby and that Eli actually had less space than he had before. For it to get worse in 3 days after the reduction, the likely hood that another reduction would make any difference was very small. I was going to lose one or both of my babies without the laser surgery. But what if I had just killed any chance of surgery by doing the reduction??? And, how could I make this happen financially??? I went home and asked for help from everyone and anyone I could think of.

I was sent back to the hospital on the 30th and met with the doctors again. The hospital got in touch with my insurance to start the approval process to have the surgery in Houston and one of the doctors got on the phone with one of the surgeons in Houston and spoke with him directly concerning my case. Suddenly, I was scheduled for surgery in Houston on August 3rd and was told by the surgeon in Houston not to worry about my insurance covering it or not for they had ways of getting it taken care of.

And so it was – I went from thinking I had to consider selective reduction to save one of the babies lives to having a glimmer of hope through the surgery that both boys would make it through. With the financial support of my amazing family, my mom and I were on a plane to Houston on Sunday, August 1st to meet with the doctor on Monday the 2nd for surgery on Tuesday the 3rd.

The doctor’s appt on Monday went well. After a 2.5 hour ultrasound and a 45 minute consult the doctor said I seem to be a good candidate for the surgery. They work out of Texas Children’s Hospital and had done 206 of these surgeries to date. They said their survival stats were the best in the country – 70%-75% of patients go home with both babies, 15%-20% go home with one baby and about 10% lose both babies…..

Surgery was scheduled early morning on Tuesday, August 3rd. I was in the operating room for about 1.5 hours and the surgeon called the surgery a success. There had been 7 connected blood vessels between the two boys, the doctor separated all of them. No complications. The ultra sound to see how the babies were doing was scheduled for the next day. I spent the night in the hospital sucking on lifesaver popsicle praying that both of my boys would make it through this surgery and that I would hear two heart beats at the ultra sound the next day.

I heard them. Two heart beats.
Mom and I flew back home to Phoenix on Thursday the 5th.

Preterm Premature Rupture of Membranes - August 26, 2010
Wednesday, August 25th, 26wks gestation. The boys were doing well after the surgery. Both sacs were almost equal and I could feel both of them moving around inside of me, making me smile. I woke up at 7am after a really uncomfortable night of pseudo sleep and knew something was wrong. I got out of bed quickly as a rush of liquid ran down my legs. I knew without a doubt that my water had just broke. All I could keep saying to myself was “No. No. It’s too soon. No!”

I got dressed and drove myself to Good Sam and checked in to OB triage. Another call to my mom in Tucson asking her to drive up and be with me. To no surprise to me the nurse confirmed that my water had broken and they admitted me to the hospital. They moved me in to labor and delivery and started me on a 48 hour dose of magnesium sulfate to stop any contractions, three rounds of antibiotics to stave off any type of infection and steroid shots to help the boys lungs to develop due to possible delivery.

If you have ever gotten magnesium sulfate you know the hideousness that it is. It works as a muscle relaxer so that at the end of the first day I had to use a “bedside commode” since I had fallen on my way out of the bathroom already. At the end of the second day I could barely lift my hand to eat and could not focus my eyes to save my life. But it did stop any contractions and allowed me to get both shots of steroids to help the boys’ lungs develop.

After that I was moved to an antepartum room for my hospital bed rest. I was going to be in the hospital until I gave birth. They don’t really know why someone’s water will break early. Sometimes it is due to an infection of some type and then after it breaks it is easy for infection to set in since the protection of the amniotic fluid is no longer there. My blood and body never showed any type of infection.

During my stay in the antepartum room the contractions came and went. I had been on nifedipine since August 10th to stop preterm contractions. They did not continue that medication but did give me shots of terbutaline a couple of times to help stop them. My cervix never dilated so they tried to keep a balancing act of keeping me pregnant as long as possible and making sure there was no danger of infection to the boys or I in the process.

The nurses would hook me up to the fetal monitor every evening to hear the babies heart beats for an hour. It was always comforting to hear them but since they were always on the move, especially Nolan, they would have to move and readjust the monitors and sometimes just sit with me and hold them so that they could track. Both heart beats were always strong.

I stayed in antepartum until September 1st. I was then moved back to labor and delivery because the contractions had become strong but since my cervix was not dilated at all I might be needing a c-section soon and the labor and delivery rooms were closer to the operating rooms. The doctors decided to give me another round of magnesium sulfate, this time not necessarily to stop the contractions but because it has shown to offer a some type of protection from any neural problems that could come up for the boys. The second round of magnesium was worse than the first. It stopped the contractions but really messed with me. BUT every day that my boys could stay inside of me was equal to 2-3 days outside of the womb so it really didn’t matter how I felt.

During this stay in the hospital I didn’t have many guests and I did not want them, other than my mom who was always there. My entire focus was keeping these boys safely inside of me. I slept with the two teddy bears that I had received as gifts from my friend John. I held on to them tightly. I talked to the boys, visualizing the three of us together with Divine light shining down upon us keeping us safe and healthy. I prayed for strength, protection and the ability to accept whatever may happen for the higher good of the three of us. This was a very private time for me and my sons. I know that my decision to not have visitors seemed strange but it was what I needed for me to get through this very scary time.

The boys were at 27 wks gestation.

Birth Day - September 4, 2010
As the second round of magnesium sulfate began to wear off and I started to regain my senses the contractions began again. Throughout the afternoon of September 3rd they went from almost unnoticeable to uncomfortable to painful. They ranged from 15 to 6 minutes apart. Finally around 10pm (I remember the time because we were watching MASH on tv) I asked for pain relief, whatever they would give me. They gave me Vicodin and morphine. The doctor came in to check my cervix, not dilated, at all. If I was going to have any babies anytime soon it was not going to happen naturally. Of course I did not WANT to have them any time soon. They were only 27 weeks and 2 days gestational – 13 weeks early….

During all of this I am attached to a monitor to track both babies heartbeats and my contraction levels. So I can hear the boys heartbeats in the back ground. I noticed as we got later into the night the machine would lose one or both of the heartbeats during my contractions. That scared me. I didn’t like not hearing both of my boys hearts. As we got closer to midnight the pain of the contractions was too much for the pain meds they had been giving me and the contractions were inching closer and closer together. My mom had decided to spend the night in the room with me and got the nurse for me. The nurse came in and sat with me to try to track the babies heartbeats and brought more pain meds with her. I tried laying in different positions for my comfort and for easier baby tracking. That didn’t work. My blood oxygen levels started to drop and the babies heart beats, especially Nolan’s started dropping with each contraction sometimes all the way down to 50 a minute (normal for him at that point was around 150-165). It would bounce right back up after the contraction was over but they were coming so quickly there was little rebound time.

The nurse left for a couple of minutes to find page the doctor and the pain got so intense, like nothing I had ever felt. I could not move in response to it because of the baby monitors on my belly. I did not was to dislodge them. It was so much more important that the nurses be able to tell that the babies were okay.

Suddenly the nurse came flying back in the room followed by a couple of other nurses and a doctor I had not met yet. As the doctor walked through the doors she told me I was being moved to an operating room. One of the babies was not tolerating the contractions well and we needed to do an immediate c-section. I heard one of the nurses say heart rate of 15. I knew that had to be my Nolan. He was the one who was head down at the bottom of my uterus. At this point I went into shock and much of what happened is a blur. I suddenly had, what seemed to be, a room full of personnel. One was one my bed, over me attaching and unattaching things. They gave me a shot to stop the contractions and started rolling me out of the room. I saw someone talking to my mom as they took me out. I don’t remember feeling anything as I went into shock. I heard them discussing which OR room they would be using. Was the NICU advised that there were going to be twins? I watched as they put on their OR gowns as they ran and pushed me down the hall. That was when I started to shake.

We came through the doors of the operating room and I moved to the operating table. My body was shaking so badly in shock that my legs were bouncing off of the table, my shoulders were shaking and teeth chattering. I heard the doctor ask for warm blankets and they wrapped me up in them. It slowed my shaking but did not stop it. I tried to focus on my breathing. The doctor who was going to give me the spinal block introduced himself and explained what was going to happen. He asked me if I had any questions and I shook my head numbly. I could hear the nurses in the background counting the number of instruments and tools out loud. I heard the doctor telling them they needed to speed it up. A nurse came up to me and helped me to sit up so that I could get the shot. I will never forget how she put her arms around me to hug and hold me up. She told me to put my head on her shoulder. I did. If I saw her face, I have no memory of it but whoever she was, in that moment, she was an angel to me. I vaguely remember being fearful that the shot would hurt. Ha! I think I was in such shock they could have done the c-section right then and there and I would not have felt it. Instantly I felt a rush of warmth shoot down from my rib cage down to my toes. Relief, the shaking stopped.
Somewhere in all this surgery prep my mom showed up in her scrubs. She was going to be there with me. I had no idea. The anesthesiologist introduced himself and he and the doctor explained what was going to happen next during every step of the surgery. I felt tugging and pulling as they cleaned my belly. Once they started it seemed almost immediately that Nolan was out. I felt a release of pressure. No crying. At this point I was VERY thankful that I had spoken with one of the neonatalogists about a week earlier. He had told me that in c-sections for premature births the babies rarely ever cried so I was not to worry if I did not hear any cries after birth. He also told me that each baby would have his own doctor and nurse to care for it the minute it was out of my body. I did hear them call his birth time of 1:55am. I looked at the clock and saw they were right. Soon after that someone came and got my mom so that she could see Nolan. I closed my eyes. I was overwhelmed. I was so filled with emotions that I was effectively numb. My mom later told me that Nolan was blue when he came out. His initial apgar score was 2 within the first minute of life (zero is the lowest)

Now it was time for Eli to be born. I heard the doctor saying that she could not find him. (Eli spent most of the pregnancy up near my rib cage on my right side.) Then I heard grunting. It was a strange thing to hear coming from the doctor. She told the anesthesiologist that she needed something to stop the contractions. She said it twice and then a couple of minutes later Eli was born. I learned later that the contractions had been sucking him deeper into my uterus and they had to do a T-incision to get to him. The grunting I heard came from the doctor as she literally had to use all of her strength to get a hold of Eli and pull him out. Again, no cry. Birth time 2:00am.

I think, somewhere along the way someone told me both babies were fine. They started to stitch me up and the neonatologists brought both boys past me so that I could see them as they left the OR to go to the NICU. Both of them had breathing apparatuses on so it was difficult to see them. But they were there and they were tiny. My mom went with them. It took about a half hour to close me up. On my way out the OR to recovery the doctor told me that I had needed a T- incision so if I was going to have anymore children I would have to have a c-section, vaginal delivery was not an option. I nodded. Had I even spoken a word during this whole experience? I really don’t know.
Nolan and Eli, my babies, were born alive, both of them. They were 13 weeks early and they were going to face many challenges in growing and developing. September 4, 2010 – Birth Day – I couldn’t wait to see them.

Wednesday, February 12, 2014

Regrets

For most of my life I actually have had very few regrets in my life. I have almost always done what I thought was best based off of my internal guidance and intuition. It has guided me well. The only times it has faltered were in times of fear. As with most people, when I am in fear I am unable to tap into my inner knowing, listen to the wisdom and do what I knew was right for me and my life. My TTTS pregnancy, hospitalization, birth and the boys NICU stay was a time of deep, cell shattering fear. Not fear for me, never fear for me but fear for my boys and their lives.

So why do I bring this up now? A couple of friends of mine posted on facebook a wonderful video a loving family created to chronicle their child's 10 day life on this earth. So many pictures with family and friends. Time spent together with clear knowledge that every moment was a moment stolen and a gift of love. While I know that there were tears and pain and sadness, this beautiful family seems to have been able to remain in the beauty and love of the moment. They were present and loving what was now. Here is the video, if you wish to watch it.

And so I regret....
I know that my love and joy for Eli's life was as strong and powerful as the lovely family in the video
And
I was so filled with fear and physically exhausted from the experience of TTTS I did not share the amazingness of my boys during my pregnancy. My sister asked for pictures of my pregnant belly and I straight up refused. I am saddened that I do not have more of those. I am saddened that I did not have more joy during my pregnancy. I did not speak to people while I was in the hospital on bed rest nor did I want anyone to visit me. It was fear, all fear, for what might happen. I was frozen inside and I internalized it all.

Now of course I could have never guessed that Eli would catch an infection and end up dying from that infection before he was 2 weeks old. And I wish I had more pictures of him and his family members who came to see him. I wish I would have made a point of others seeing him. I wish. I wish. I wish.

I could say that TTTS took all this from me and in part it would be true. But if I were to be as true and honest as I possibly can be, from the deepest part of my being, I would have to admit that it was my fear of the future and what might happen that truly took away the moments I now regret never happening during Eli's life. I know that I had every right in the world to be as fearful as I was and I have been complimented on just how strong and brave I was. And now almost 3.5 years later I can understand and say publicly that my fear stole things from me just like TTTS did. I had little control over the TTTS. I had complete control over my fear.

So, what do I do now?
I grieve and forgive all that I believe I lost due to my overriding fears.  Once I have done that I will begin to choose a different way of being. I have understood for a long time that fear of the future steals from the love and the beauty of now. I am finally strong enough to experience the grief of my fear, heal it and choose to be different for myself and Nolan. Always with a undying love and gratitude to one of my most beautiful of teachers, my son Eli.

I let go of my fear and regrets, forgive, and move forward and learn how to choose love over fear
Every
Single
Time