Wednesday, September 29, 2010

bed rest

To think of bed rest is in a word oxymoron. You are not resting while in bed, you are a prisoner.

When you tell people that you are on bed rest, they imagine you lying on the couch eating bon-bons all day.
But it is entirely different.

When you are pregnant and put on bed rest, you tend to freak out. your whole world is shattered. Take the basic mental fear of the dangerous predicament you now find yourself. but the fact that you are a prisoner in your own home. Depending on the severity you might only get 30 min to stand in a day. Left alone with out any human compassion except day time television.

Then when you finally do talk to people, they act like your making it worse then what it really is. Like they know what your dealing with.

I hated bed-rest, the only thing that kept me going was the thought that if I listened, if I did what I was told that I would have my babies.

It's what gets every mother through it.

Saturday, September 25, 2010

Pregnant again.

It is almost always going to happen. After you went through a difficult pregnancy, experienced a loss, a mom will find herself pregnant again.

It is very worrysome, and trying for the mom to be. It is aslo hard for the dad to be as well.

The fears come back with vengeance. Many people will say to you, "Well, I am just so happy that you are finally over the loss." And you realize, people still don't get it. It's not that you have finally gotten over the pain of losing your child. Time just moved on. I mean your not supposed to all of a sudden stop living you life.

It's been 2 years since I lost the boys, and not a day goes by without thinking of them. Same if my child was on a trip w/ the grandparents, I would still think of her. Out of sight does not mean out of mind.

A new baby will and can never replace the lost baby. No two people are the same, even siblings.

You have heard me say this, talk through it. tell your fears letting out your emotions will help. you will learn so much of you and your self, but people will begin to learn more about you. And if they don't then they aren't who you thought they where.

Wednesday, September 22, 2010

Worst things to say...

So this is gona cover a bunch of feelings rather quickly.

Some of the most annoying thing that have been said to me after the twins passed.

10) Could you imagine the college bills, your better off not having that over your head...
9) God knew you couldn't afford the medical bills...

8) It was easier this way...

7) They wher so small and early it shouldn't take you long get get back to "normal"...

6) They didn't know that they had something to fight for...

5) It happened for a reason...

4) It is a cross you must carry...

3) They couldn't hold on, it was to hard for them...

2) God took you twins because you couldn't handle having them...

And finally, 1) They would have made horrible decisions and God didn't want them to be on those paths.

Yes people have said these to me. I know that they where trying to be comforting at the time. But seriously. Looking at these phrases now, in what psychotic universe would these foul thoughts of reason bring any comfort.

Look, I'm not gona go on and on about how I felt when these horrible misguided gestures are said to me. My feelings are definitely coming through. I just want to tell you that a "I'm sorry to hear about your loss." is and will always be the best thing to say. Simple works well, in decorating, house hold repairs, computer programing. I mean I am just so amazed that after 2 years, that these are the best and most common phrases that are uttered to me.

I will ask that if any other mom has gotten a doosy that they post it. Give your own thoughts on it in hopes that someone else may read it and learn to think before they speak.

Tuesday, September 21, 2010

A full set.

This is something I do talk alot about with moms who beat the odds.

I was talking to a mom who has the full set. She needed someone to listen and basically know that her thoughts are normal. But something stuck me as odd. She was trying to walk on eggshells. She tried not to upset me because my sons didn't survive.

This amazed me. When you finally have a end to a TTTS pregnancy, you have this moment that the dust settles and you'll see what your life will hold. When you have survivors, that time is filled on anxiousness (If that is a real word). You second guess all of your decisions. Wondering, will your children have a disability? Will their quality of life be sub-par to what your community sees? And then it hit me. She and her husband questioned their very lives together.

This is not something that the doctors really tell you during your pregnancy. I say this because you have only weeks, days, or even hours to make gut wrenching decisions. And sometimes the life long impact a parent might not see.

Her marriage is on the rocks now. She said her girls needed so much help, and that she couldn't just get a sitter that she stopped being a wife. The doctors don't tell you that . Now she has a perfectly normal 4 year old, and the other will be lucky if she could feed herself.

She will have to find a way to explain to one child that, she didn't cause her sister needing so much help. She is already taking on the futures weight of uncertainty now compounding all of her emotions. I know that not having them is hard. But, hearing her I at least have a final end. I just need to deal with my grief. She and all of the other mothers who have 2, will never get that. They deal w/ TTTS the rest of their lives in a totally different way.

This is something I never imagined. They have to pick up and move on and guess what curves TTTS might still throw at them.

I feel for them the same way they feel for me. They have to keep their face straight, and not wonder, for if their children see them second guessing their decisions. Their children could be effected by that.

Monday, September 20, 2010

medication

Many people, men and women feel that excepting help is a sign of weakness. That medication is a last resort option. However, if you have just endured any type of trama, physical or mental. Medication is a typr of treatment. I mean, wy is there a stigma on medication. We don't look at physical therapy and look down upon them, right?

After the twins passed, I refused to take medication, I thought I was strong enough that Medication is for crazy people. But, to face facts, to begin to fully comprehend what I went through. I really needed it. Being on medication has allowed me the clarity to remember my sons. To "take the edge off" and just live.

It took me comprehending suicied to take that step. And had I not heard my daughter Faith, crying, well who knows. I don't consider myself crazy, or abnormal. I just have a unusual life. And I am just trying to bring understanding to others who egnore the pain that many families face.


But I will say this. Once I was on medication, my family supported me. They didn't look down upon me. I thought they would. They knew that I needed medicinal help. I have meet many moms who have lost one or both, who have asked me about taking meds. They say to me "But my mom said that I should get through this myself." Well, I see that point of view and yes it is valid. But, if she hasn't gone through what the new mom has just endured. DON'T LISTEN. Getting help is not a bad thing. and You don't need to be on it for the rest of your life. Can you have a surgery and not have any stitches no. So why is it common to go thorough something that will cause P.T.S.D. and not get any medicinal help to aid you in getting your brain and comprehension back in line.

Saturday, September 18, 2010

Dealing w/ others after the loss.

So, I have to wonder. How come it is so hard for me to deal with new people. I have always been one to start talking when meeting new people. I smile, and just say "Hello".

But lately I have had trouble starting new conversations. I love making friends. I have been told that I have a sparkling personality and that I have the ability to "light up the room". 

Today, I had the privilege in meeting one of my husband old school mates. She was such a lovely person. She has a great jewelery shop in Easton, PA.  Bella's Boutique Inspired Accessories

She asked many normal, catching up questions. What have you been up too?, When did you get married?. I knew what was coming. We had our girls with us, and there, the big elephant reared his ugly head. She asked, are you going to have any more children?



Lets be honest, it's a normal question, I have asked it many times. But, it's not the question that bothers me. It's the answer that we have to give. In a nut shell, we say, something like, "No, we have lost twins to a difficult pregnancy, and after Sarah. The doctors said we can not have any more. That it would be to dangerous for Erin." Then they give a response of shock, mostly curiosity, and maybe trying to comfort or understand what happened. 


Now, I can't or simply put don't know how to tell my sons story with making the other person feel like they should run away. Yes, I try, but I can't. I love remembering my sons. It was a experience, one that because  of them I have met so many women from around the world. So by talking about my sons. I think that they will see a strong family. One that has been through alot, and that is trying to make a difference in the world. 

But Sometimes, that is not what is heard. Many people hear me and see a crazy lady, who can't deal with the cards she was handed, and wants to try to keep a hold of  something that is gone, and that she can't deal with letting go.


Luckily this meeting today was not the later. Kristi, was caring, compassionate, and very gentle with what we said. Hopefully she will read this and  be happy. She was great! I guess today, I was the uncomfortable one. I was scared of a bad reaction. I am beginning to assume that I will get a weird look and be alone to deal with this. I am manifesting the same behavior that I am trying to avoid.


Now, I know many moms including myself, that will always wonder, how do I tell my story without upsetting someone. Well, lets think. If you asked a survivor of  Katrina, and said "Why do you still live in the lower ninth ward?". And they replied, "It's my home, yes we lost everything after the storm, we lost x, y, and z. But we will always have to come home to the street where we live, You can't run away from it." I asked this question when I was down in New Orleans. I got that answer. Why should I run from my sons memory. Yes, I will try to soften the blow of it, but it's a part of me.


I know some moms who choose to not say that they even lost any children, due to TTTS. It's hard to deal with. But I am not that woman. Now, if you have felt any part of this topic, and it hit home for you. Maybe you where the one asking the question, maybe you had to answer it. I hope that by talking about these experiences that we can all be understanding.  

That including myself, just remember the past and try to build off of it. Don't prejudge the person and expect a bad reaction. I need to be more positive, don't end with my sons passed away. I need to keep going. finish with, that I am trying to make a difference and help many more families 1 in 4 women experience a pregnancy or infant loss. And it's about time the rest of the population not only learn what it is rather, to see a opportunity to help someone else out.

I am looking forward to going back to Bella's Boutique Inspired Accessories and spending more money, and getting to know Kristi.

Wednesday, September 15, 2010

treatment.

TTTS or Twin-to-Twin Transfusion Syndrome is a disease of the placenta. It affects pregnancies with monochorionic (shared placenta) multiples when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. One baby, the recipient twin, gets too much blood overloading his or her cardiovascular system, and may die from heart failure. The other baby, the donor twin or stuck twin, does not get enough blood and may die from severe anemia. Left untreated, mortality rates near 100%.

The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor) to the other twin (the recipient). The donor twin develops oligohydramnios (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydramnios (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, and/or preterm (early) labor leading to miscarriage of the entire pregnancy. Courtesy of the Fetal Hope Foundation.

The timing of the separation of the egg is critical in a TTTS case. Obviously the less time between the separation, the higher chance of TTTS accruing.

The cause of TTTS is attributed to unbalanced flow of blood through vascular channels that connect the circulatory systems of each twin via the common placenta. The shunting of blood through the vascular communications leads to a net flow of blood from one twin (the donor, or smaller twin) to the other twin (the recipient, or larger twin). The donor twin develops oligohydraminos (low amniotic fluid) and poor fetal growth, while the recipient twin develops polyhydraminos (excess amniotic fluid), heart failure, and hydrops. If left untreated, the pregnancy may be lost due to lack of blood getting to the smaller twin, fluid overload and heart failure in the larger twin, or preterm (early) labor leading from the demise of one or both twins, or the preterm labor can begin if the mothers uterus has reached it maximum size and causes early labor ending the entire pregnancy. The mother does not effect if the pregnancy ends like this. She is just another victim of TTTS. She is just another passenger on this crazy ride.

It will help you to understand where certain important vessels and connections lie in your children’s bodies. This way when the doctors start stating how your TTTS case is advancing you will be able to understand the severity of the case. This will allow you to make the most informed decision for not only your children, but your future.


Please keep in mind that just because one twin is smaller in size. He or her being smaller will not automatically make him/her disabled. My boys differed by 40% at birth, but both had muscle tone. Both could hold your finger, both could move, and reacted to my voice. The only way for them to be disabled is if one or the other does not get enough oxygen and that would cause disabilities. Also keep the fact that the earlier a baby is born the higher chance of learning disabilities or other conditions could occur. Such as ADD, ADHD, Autism, ext. please speak with you doctor to weigh each medical option to find the right plan for a specific case.

There are two main types of TTTS. Chronic and acute TTTS. Chronic occurs in the end of the first trimester to the middle of the second trimester. Chronic TTTS has a higher chance for a devastating out come. Acute TTTS, Typically occurs from towards the end of the second trimester through the third trimester. If your case is Acute TTTS, the best solution is a immediate delivery. This solution is better because it ends any linkage in the babies, plus the babies would be at a viable gestational age.

The arteries and veins are the main focus to finding a cure. These simple and normal veins and arties are found in every placenta. The underlying problem of TTTS is the placement of them. The connections can be a direct link. Such as an artery to artery; an artery to a vein; veins to arties; and a complex connection, such as multiple arteries to a vein, act. Please keep in mind that Arties carry oxygenated blood cells, and veins carry used blood that is in the process of being re oxygenated. So the issue is when you have “used” blood from one twin, directly passing to the other baby. The other baby then gets fewer nutrients and develops on a smaller scale.

When I was first diagnosed with TTTS, the doctor explained what he found in my ultrasound that would help diagnose TTTS.

1) Monochorionicity or a Discrepancy in amniotic fluid between the amniotic sacs with polyhydraminos of one twin (largest vertical pocket greater than 8 cm) and oligohydraminos of the other (largest vertical pocket less than 2 cm)

2) Discrepancy in size of the umbilical cords

3) Cardiac dysfunction in the polyhydramniotic twin

4) Abnormal umbilical artery or ductus venosus Doppler velocimetry

5) Significant growth discordance (often greater then 20 percent)


They then explained another type of staging that depending of the severity would increase as the pregnancy prolonged.

Quintero Staging System for Twin-Twin Transfusion Syndrome / one to five:

1) Stage I: polyhydraminos in the recipient, severe oligohydraminos in donor but urine visible within the bladder in the donor

2) Stage II: polyhydraminos in the recipient, a stuck donor, urine not visible within the donor's bladder

3) Stage III: polyhydraminos and oligohydraminos as well as critically abnormal Doppler’s (at least one of absent or reverse end diastolic flow in the umbilical artery, reverse flow in the ductus venosus or pulsate umbilical venous flow) with or without urine visualized within the donor's bladder

4) Stage IV: presence of ascites or frank hydrops (fluid collection in two or more cavities) in either donor or recipient
5) Stage V: demise of either fetus.
This staging system is descriptive. The risk of fetal death and neurological issues increases with higher you go on the Quintero Stage.


Quite recently a new system was developed that looks at the case in a very detailed way. This gives parents the ability to better judge the situation they find themselves and their children in. At every ultrasound the doctors will be looking for specific criteria to judge the level of TTTS. Each specific characteristic will be given the appropriate value. Typical the higher the evaluation number is the worse the situation, but that isn’t always the case. Here is the chart so you can better familiarize yourself and to be ready to make decisions.

There are a few ways to treat TTTS. Depending on your case your doctor will help you choose what is best. My doctor became amazed with what I began to understand and learn during my own TTTS pregnancy. Even to this day, I can still remember the doctors informing me of treatment options and how they figure out the severity of TTTS in each patient.

In a conversation that I had with Dr. Julian De Lia, MD, I found out that the mother’s diet will also have a huge impact on the outcome to the pregnancy. That the mother should be having high protein shakes, and eating a high caloric diet during her pregnancy.


As for the different treatment options of TTTS, here you go. This will give you an idea of what the doctors will say once you see them. They will evaluate your case and make recommendations for your family. Please keep in mind that regardless of how you case is treated and the outcomes. You will have to make peace with what ever decision you make. Here is the break down:

Termination One of the first ways a family can choose to treat the pregnancy is to terminate the entire pregnancy. This is allowed, the stress of the so called doomed pregnancy can be just too much for the family to handle. Obviously both babies will not survive. The parents will be counseled by their physicians. By terminating the pregnancy, the parents will have the ability to start the grieving process and try to move on with their lives. Many move on to have another normal pregnancy.


The remaining treatment information I found on the Children’s Hospital of Boston’s website. I thought it would be better to have the explanation of the complex medical options explained by the doctors who deal with this every day.

Umbilical cord ligation (tying of the umbilical cord) is performed endoscopically (through a small puncture in the mother's abdomen) when one twin is severely compromised with impending death. If one twin dies the other is at high risk for neurological damage caused by a severe drop in blood pressure. The procedure should offset the drop in blood pressure and prevent other continued symptoms in the surviving twin.

Serial amniocentesis-amnioreductions is a procedure that is used periodically to relieve the recipient twin of the excess accumulation of amniotic fluid. For this procedure, a needle is used to enter the mother's uterus and the recipient twin's amniotic sac, which is drained of fluid.

Endoscopic laser surgery is a procedure in which a small puncture is made on the mother's abdomen and endoscope is inserted into the amniotic cavity. This allows the surgeon to look into the uterus and use a laser to vessel con or interrupt abnormal connections between the twins.

Amniotic Septostomy is a procedure in which a needle is inserted into the mother's abdomen, and the membrane between the two twins is punctured to allow equilibration of amniotic fluid between the two sacs, giving the smaller fetus more amniotic fluid.

From what I have found this was a very common way to treat TTTS. But Better results have been found with the laser surgery that this type of treatment is on it way out.

Each and every Twin-to-Twin Transfusion Syndrome pregnancy is unique. It never presents it’s self the same way twice. So all the doctors can do is after each TTTS pregnancy ends, for the specialist to dissect the joined placenta to learn new information. Unfortunately, everyone for whatever reason cannot send their placenta to the people who would be able to provide this service. So much information is lost every day. My own placenta, showed that it looked like a 36-week age, when it was only 24 weeks. It had other uncommon issues that unfortunately we will not fully know their cause or effect that they had until more cases are found that have them.

The emotional side to TTTS, hmm where do I start? Intense, fear, drama, astounded, Lectured to, Inferior, Over-protected, Scared, Terrified, Threatened, Under-protected, Unsafe, Robbed, Cheated, Uninformed,
Unsupported, Powerless, Pressured, Restricted, Bossed around, Controlled, Imprisoned, Inhibited and Forced. The list goes on. Each family needs to develop a support group. The Internet was a great place to discover people who could help me understand what was not only happening to my babies, but to my own health, and how it was affecting my family. Emotionally, this is a horrific disease, and as a personal note, I would recommend start seeing a councilor to help release any or all of the feelings that might increase a mothers or families stress.

Tuesday, September 14, 2010

My own TTTS story.


Well, in 2007 I was on the pill, so I wasn’t really panning for more children. But, I would still like to get pregnant in nine months form when we found out about the twin pregnancy. I had to deal with fertility treatments to conceive our daughter; I wished that I could eventually get pregnant with out medicinal help. During that time I had 2 early miscarriages. It almost brought me to the breaking point. My husband was great through it all. Evidently my wish came true.

Then in Januarry of 08', I had that feeling I was pregnant, but was unsure. I never asked what the HCG results where. I figured that after being thru infertility treatments with my previous pregnancy, if the doctor wasn’t alarmed by the results that I shouldn’t be either.

I can remember at 9 weeks I was showing, I was concerned by it but just brushed my size off (I'm a little on the + side of things). This was my second pregnancy after all. I considered the thought of twins, what were the odds. I was just so happy this was a “normal” non high-risk pregnancy. The NP didn’t think much at this point. She figured that this being my second pregnancy that that was the reason why I was bigger. I asked for an ultrasound, but she wouldn’t do one, she made me feel like I was a crazy woman. It was horrible being treated like that.

Then at 13 weeks . I couldn’t believe it I was huge! My first ultra sound. The ultrasound technician asked, “How are you doing?”
I replied happily, “I am just so relieved that I can enjoy this time, that this is not a high risk pregnancy.”
She looked at me and said, “You don’t know?”

I said, “Know what? “
She said, “You are having twins!”
I was in shock for a good hour. I was thinking that I was on the pill, could I even handle two babies plus my daughter? But I wanted them with all my heart, and for them to be healthy. My aunt has identical twins, if she could do it, I thought so could I! They mentioned that I would be watched, and we need to make sure that the issues that comes from twin pregnancies are identified early, but I was just floored.

At 16 weeks we had another ultra sound. This ultrasound went fine, no major issues; they didn’t say anything was wrong. I found out why I wasn’t feeling my babies move. My placenta was located on my belly so it was acting like a cushion, or a barrier between us. It is called a anterior placenta. I really wanted to feel them even if I would be kept up late at night from them moving. Then I would know they where fine. But we are having two boys. Their names would be Vincent Sterling & Thomas Matthew.

Then at 18 weeks everything came to a grinding halt. The doctor came in, and said our boys had TTTS. My world just shattered, I was so scared. I didn’t know what it was. My husband wasn’t with me; he had to work that day. I thought to myself, "How could I tell him we had a problem?". I wanted my babies to be healthy, to be safe. I wondered what was happening, and why? How can they be saved? Could they really lead a normal life? And I kept wondering if I would be able to hold them. Watch them grow, kiss their bubo’s away, and wondered if I would even get that simple parents right to hear their babies cry for the first time? I knew I had to deal with this some way. I was put on bed rest for the remainder of the pregnancy. I was referred to CHOP to treat this condition.

With in seven days of being diagnosed we found our selves at the Children’s Hospital of Philadelphia (CHOP) after a long day of tests, ultrasounds, and doctors poking and prodding me. We received terrible news. We found out at the end of the day, that the boys had a 30 % size difference between them. On the ttts scale our boys where a two. And the recipient baby’s heart condition was a four on the 20 point scale. We where given 5 options. One was to could kill both, the second kill one and hope the other would survive, third try the laser surgery, forth try amnio reductions, or fifth do nothing and loose both in a matter of weeks. We wanted them, we where here for two babies. We could barley wrap our heads around it. But if we did nothing we would lose both in a matter weeks. We where just crushed.

During the 20th week, We chose to do the laser surgery. We where told that they might not be able to do anything. The placenta being located on my belly, made it very difficult to even get the scope in there to see everything. And if they got the scope in, could they even see what they needed to save my sons? It was one of the most horrific surgeries I have ever had. You have to realize the sheer size I was. I looked like I was a full trem mommy. The doctors at CHOP, even joked that I would carry to the surgery date. They thought that I would have gone into labor at this point.

But, they ultimately couldn’t complete the laser surgery due to the anterior placenta. They took out 3.66 litters of fluid from the recipient’s amniotic sac. During the surgery they where only able see was the recipient cord and the separation point of where the 2 placenta met. They could not even see his cord incursion. All we could try was amnio reductions or selecting the recipient baby to be killed, and hope that the donor would survive. The doctors gave us time to make the decision. Then 4 days after the surgery, our final visit to CHOP. Our donor baby was now 40% smaller then the recipient baby. The recipient’s heart condition is now a 5 and on the 20 point scale we are still a 2 on the Quintero stage. We couldn’t choose to kill the smaller baby, he was our son, and we believed as a parent you need to protect your child no matter what. Even if we selected him, the other could die, and could we live with our selves with knowing they could have made it if we just left them be.

We had a conscious amnio reduction. They took 2 litters this time. The recipient’s heart condition was now a 6. The amnio reductions were so painful. As they drained the fluid, he began to move and kick. So as my uterus was contacting to become smaller, he was trying to take up more room. It felt as if I was in labor. I though to my self, could I be loosing both now? They put me in a room to track my contractions. I stayed there until they stopped. Thank God, my sons where still ALIVE!


The doctors recommended another amnio reduction. They took another two litters, bringing the grand total to 8 litters. The recipient twin was sleeping so the pain wasn’t too bad. Yes it hurt but much nothing like last time. The recipient’s heart condition was now an 8, and on the TTTS scale we are now a 3. The doctor after the reduction admitted me in the hospital. I expected to be hospitalized at 24 weeks, so it wasn’t a shocker to me. If we could hold off delivery for 1 more week, our recipient twin (the larger one) would have a shot for a possible life. The smaller baby (the donor) would need another three to four weeks. To be honest I didn’t think this could keep going at this rate for that amount of time.


We had an ultrasound early that first full day in the hospital. We could see a reverse flow of blood in the recipients cord. We could either deliver them now, or let the recipient die inside me, and hope that the donor would survive. We chose to deliver; the doctors used less pain medications during the c-section, so the babies would be awake for the NICU staff. Half way through the c-section, after the boys where out, I regained feeling, I could feel them sewing me up, but I didn't budge. yes it was so painful, but I knew it was for my sons, maybe my pain would make them stronger, I really don't know what I was thinking dealing with it like that. Once the doctors realized what had happened they drugged me up, thing began to get very fuzzy. I do remember my husbands face. He looked like he was in shock, that I was dealing with all of this pain and not even flinching. It's a look I'll never forget.

But happily at 3:24 both of our boys where born by a classical c-section. The Recipient baby, Thomas Matthew Bruch 1 lb 3oz, 11.5 inches long, he cried when he was born, and the donor baby, Vincent Sterling Bruch 11 oz. 10.25 inches long. We where only 24 weeks along in this pregnancy and they are already born, I had to now put my faith in the NICU team and just wait. They where here and I was still helpless. Looking back I can remember lying on the OR table, and a nurse commented on how small my twins where and then the doctor telling her to be quiet.

My very first visit to the NICU for my own children is one I will never forget. I was there before years ago seeing a friends’ child. I looked around and I saw 30 babies, all on an assortment of machines. I was taken over to two isolates. My boys where so small, but they were alive. Vincent was 11 oz., Thomas was 1 lb.3 oz. they gripped my finger. I even heard Thomas cry, a 24-week baby could cry, some 34 week babies can’t even do that! I saw each of their chests rises with each breath they took, and their tiny hearts where quickly fluttering. My boy’s where each on oscillators that helped them breathe. They where small, but they where mine.

Thomas was doing so well. He did everything that the NICU needed him to do. He had two nursed dedicated to him 24/7. Thomas was on the machines and was taking his own breaths, yes he had the ventilator, but most of his breathe where his own, not the machines. He would move when he heard our voices. He could smile, and make facial expression. He never looked like he was in pain. He was our fighter, our hope. And he was doing well. I would call or visit him every three hours to check in. but I began to feel like I was forgetting my daughter. How can you parent 2 children when one child is in the hospital and the other is visiting with family members?




Vincent lived for one day, Thomas lived for five days. Vincent died from the shock of being born to early, he was just too small. Thomas put up a great fight.  After they died, I would wake up feeling my belly, and wishing I were still pregnant. I took me 7 weeks after the joint funeral to start to feel the emotional pain of it all. It was like walking in a fog, you are unsure of where you’re going. I saw a therapist, and went to group therapy for neonatal loss. I had to come to grips with the physical and emotional side of the losses. Through this I lost my own identity, struggling with the question “Am I still a mother?” Thank God to “Now I Lay Me Down To Sleep” they are angels.





You have to realize, that I now expect people to not know what to say to me. A normal person usually does not deal with this everyday. I have the jewel kids on my necklace. I have one for each of my children. But I will always hate seeing the “deer in the headlights look” I get every time when they ask, “How many children do you have?”

I just simply tell people, that I like to talk about my sons. They are a part of my family but in a different way. So if they are uncomfortable, then they need to speak up, other wise I will continue to talk. 

It took me over 13 weeks to fully realize the emotional drain TTTS took. I didn’t go back to work until after my due date. Every day was a challenge, my emotions never went away, and I just learned how to cope with them better as time went on.