Beating the odds??

So it has been over a week now since the tragedy touched us. I have had a little time to absorb the news and to process my emotions. First I must recant an earlier statement. I can't say we haven't beaten the odds. We are still expecting one little miracle. Although the loss of little Jewel was tragic we are still so happy to have little Jemma growing in her moms womb. Even with all the pain of one loss we are over come with joy at the aspect of being able to welcome little Jemma into our family.

I have found some comfort reading posts written by other families that have been through what we are going through. There are so many groups and organizations on the internet that group people together by circumstance. I can not believe how helpful they truly are. We have drawn strength from their support And I am so grateful.

We also have an amazing group of family and friends that come together to give us support. From hugs in-person to kind words on Facebook with out all of them I don't know what we would have done!

The Doctors, Nurses and all of the staff at Kaiser are doing everything possible to keep Jemma in until a safe date of delivery. My poor Jade has been so sick and battling her bodies desire to go into labor. She hasn't had time to become bored by the overwhelming confinement she experiencing. Being the fabulous Jade that she is, she is making friends with some of Nurses. Friendships that have bonds that will last a life time. I am so grateful to them for the emotional support they are giving her during this devastating but joyous occasion. It is woman like them that gave me the desire to be a Nurse.

So through it all we are remaining strong and we are fighting to still beat the odds!!!

our precious little angel...

Daddy please don't look so sad, momma please don't cry.
Cause I'm in the arms of Jesus, and he sings me lullabies.
Please try not to question God, don't think he is unkind.
Don't think he sent me to you and then changed his mind.
You see I'm a special child, I am needed up above.
I'm the special gift you gave Him, a product of your love.
I'll always be there with you, so watch the sky at night.
Look for the brightest star and know that's my halo's brilliant light.
You'll see me in the morning frost that mists your window pane.
That's me in the summer showers, I'll be dancing in the rain.
When you feel a gentle breeze from a gentle wind that blows.
Know that it's me planting a kiss upon your nose.
When you see a child playing and your heart feels a tug,
Don't be sad mommy, that's just me giving your heart a hug.
So daddy don't looks so sad and momma please don't cry.
I'm in the arms of Jesus and he sings me lullabies!
~Unknown

and we got to 24 weeks....

On the morning of Dec 21st we loaded up the car and headed to the hospital relief in our hearts WE HAD MADE IT!!! We arrived around noon and were shown to Jade's room for the next 8 weeks. The nurse was wonderful got us situated and hooked Jade up to the monitors. After an hour of having trouble finding both distinctive heartbeats, she called a doctor into do an ultrasound. The doctor came in found both the babies and their heartbeats. The nurse put the monitors on and we were good or so we thought.

I spent the day getting us all set up in Jades room. Decorating for Christmas was such a joy. Jaycee loved the pretty little tree we got that fit perfectly on the table by the window. The room was small but we made it homey. The day was perfect. We were just so happy to have got to the hospital were they would be monitoring the babes 24 hours a day. Knowing that if there was a problem now they could take the babies out within ten minutes and use advanced medical technology to help these precious little babies to survive. We don't want the babies born this early because of all the potential problems micro preemies can have but it is so much better than the alternative.

The nurses had been in all day relocating the monitors to find both babies. They had to use the ultra sound machine a lot. The doctor had come in several times to help. No one was surprised by this we had been warned that at 24 weeks the babies were still small which allows them to move uninhibited. This was all expected. Monitoring is very hard until about 28 weeks when the babies get to big to move about as much. When shift change happened the new nurse was really struggling with the monitors and called the doctor to come help with the ultrasound machine. The doctor we had all day was in a delivery so another doc came in. He was struggling with what he was seeing.  We had several friends show up. The crowed little room was too loud so we all decided to go get something to eat to give them some quiet time. Jade called me after about ten minutes begging me to come back this doctor was NOT finding a heart beat on one of the babies. My heart sank what do you mean no heart beat? We saw both several times. We heard both. I know they were having a hard time but this was normal at this stage. What is going on? I am so confused. I am so scared. NO THIS CAN'T BE HAPPENING WE HAD MADE IT!!!!!

I race back to the room to be by my daughters side. How could I have left her. She had to hear this new all by herself. When I get back to the room it is explained to me that they believe the heart beat we had seen and heard all day had been baby As only, that baby B looked to all ready have fluid swelling all around her. She had been gone for several days. But all of this had to be confirmed with a formal ultrasound on a high resolution machine not the little one that was rolled in to be at the bedside. OMG we did not beat the odds. All this faith I have had is washed away with just a few little words.

So several hours later another doctor comes into give us the official news our precious little baby B is gone.  She now has little angel wings and has been called to heaven to rest in Jesus's arms. Oh God why? I do not understand. I am so sad. I am so scared. How is my daughters fragile emotions going to handle this? Are we now going to have to get our poor little baby A out so early. OH this is to early so much can go wrong with a baby born at 24 weeks. Why hasn't Jades actual Peri came in yet? We want to talk to her team!! I am how ever really impressed with the doctor that comes in. She is so good at explain everything to Jade. We are just not understanding that they are going to leave the babies in. When we met with one of the Peri's last week we were told this wasn't an option. Now don't get me wrong we are okay with leaving little baby Jemma in to grow. We just don't understand the contradiction. The other thing that is confusing through out the whole weekend is the nurses and doctor making it sound like this is a normal singleton pregnancy now. Jade was told that she could probably carry to 40 weeks and have a regular delivery. I know none of this is correct I have done my research this is still a MoMo pregnancy there are still two cords wrapped and knotted that puts the surviving baby at risk of death. I told them we have already lost one of them and WE WILL NOT BE LEAVING. I tell the doctors this. I tell the nurses this. Please stop giving my daughter information that you are assuming to be correct. We will be getting the new plan from her Peri when she comes in.

All kinds of emotions crash through me but I have to remain strong for my daughter. A few times I break only to pull myself together as quickly as it occurs. The only time I can cry is when I go out to have a smoke break. Jade is really struggling with having to have poor baby Jewel remain in uterine for the remainder of the pregnancy.  A baby that is lifeless floating around the surviving twin. Monique and I are really trying to help her deal with her pain. Finally she seems to get it. Not that it isn't hard it just begins to make sense. Jemma needs to stay in to grow stronger. All this has meaning we still have little Jemma doing so well. We all have to be strong and push forward for Jemma. Our hearts are broken and we are grieving for the little baby that became a special angel to watch over her twin sister. But we can still do this, we will still do this.

Just to be prepared...

Today we had an ultrasound, it didn't go as planned. US are suppose to be fun and full of joy but when you are pregnant but this isn't always so with MoMo twins. You never know what you are going to learn. The first thing we always ask is do you see both heart beats. Both were beating strong, Yeah :) We had the same tech as usual and we really like her. Today she even surprised us by pulling out the 4D wand to get some special pictures for us. We got some really cool ones of Baby A. Baby B wasn't cooperative and stayed on her belly so we couldn't see her face. The tech told us it didn't really matter though cause the girls are identical so seeing Baby A is the same as seeing Baby B. LOL so funny. Maybe this was all to lighten are mood for when the Dr. came into give us the results.

When Doctor came in she started off with going over what to expect next week when Jade starts here inpatient journey of being monitored 24 hours a day 7 days a week. It is hard and rigorous. It is almost like being in jail. You are trapped on a bed with three monitors on your belly with very little breaks. And if significant decels are noticed then you are prepped for an emergency c-section. It can be emotionally trying being away from your family and basically locked in a small room for 2 1/2 months. Well we understand that have been getting everything ready for that as much as we can.

Then the bad news came...

Something is wrong with Baby B. She is now two weeks behind in growth. Her brain is growing normally but her body is not. They can not find a cause. Her cord flow appears to be normal. The Doctors do not think it is from TTTS because Baby A is right on track. The Dr talked to Jade about the possibility of Baby B passing. They can not find any reason but her growth restriction is very concerning and because of this it is a possibility  It was then discussed that if this happens they will have to get Baby A out right away so that nothing happens to her. Since they are in the same sac sharing the same placenta there is no other option.

Needless to say we are on our knees praying that God heals Baby B and keeps them safely in their moms womb for awhile longer....

Jemma Jean
aka Baby A 

Jemma Jean
 aka Baby A 

This time I was not even scared....

So the last couple weeks have been busy and some what eventful. I guess it started on Nov 29th when Jade called me in the evening from South Lake Tahoe to tell me that she thinks she has another UTI because of the symptoms she was experiencing. Most of all she was concerned about all the cramping she was feeling. I asked her if she was having them every ten minutes, or less, apart. She said no. I told her to go ahead and call her Peri in the morning. In the mean time to try to get a good nights rest.The next morning while on my way home from work I was driving down the street having a very serious conversation with God. I was asking, praying, begging and thanking him for keeping these babies safe when all of a sudden a calm reassurance came over me and I knew these babies are going to be alright. Now I have talked to God all my life however this pregnancy has brought us closer to him. And I am thrilled to see him at work in my daughter Jade. These babies are truly miracles!

When Jade got in touch with her Peri that day she was told to go to the local L&D since it was snowing and the road conditions weren't safe for a 2 1/2 hour drive down the hill to Kaiser Roseville. I am sorry what a waste of time. That hospital should be ashamed at the etiquette of its staff. Now I understand they don't have the technology to treat these babies if anything were to go wrong and to explain to Jade she really needed to go home was correct. BUT to be rude to a scared mom of a such an extremely high risk pregnancy was uncalled for. They told her she didn't have a UTI and that if she really thought she needed to see the OB they could call the on-call in. She said no thanks. They actually told her she had to pay her copay before they would let her leave. Now she argued that her secondary would pick up the copay and left to head down the hill.

Dec 8th, A week later Jade was visiting my friend Anna here in YC. Jade was feeling very crampy and things didn't feel right. Gosh off to a local hospital again. It really sucks that we live so fay away from the hospital that has A level 3 NICU and our Peri team. When you feel like you need to be seen dont want to drive so far. Plus if there is an emergency they can medically transport you. At this hospital they treat her much better but after the ultra sound at almost midnight they call the on call OB in to talk to Jade. The OB is very concerned about the growth discordance. She thinks we need to talk to the Peri in the morning. The cords are tangled ball but she believes we might be looking at TTTS. Baby B is now in the 10th percentile while twin A is in the 50th. Oh my gosh the last thing we want to hear. But our team has been monitoring closely. Jade was just at Kaisers L&D last week and the intern that did the ultrasounds didn't think the babies weights were that far off. We awere also very kindly asked not to return. She said if we could not make it to Roseville to come in but they did not have the means to care for babies this early. She was very nice about it but What the heck, this is all so hard. Never a dull moment in a MoMo twin pregnancy.

Jade called her Peri in the morning and told her what had happened. She said they are aware of what is going on with the babies and because twin A is not showing any signs of TTTS they dont think this is what is happeneing.  Okay so we are going into see the Peri in a couple days......

Baby A on the defense

From Him we draw our strength

Numbers 6:24-26
"May the Lord bless you and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace".

Luke 2:40
"And the Child grew and became strong in spirit, filled with wisdom; and the grace of God was upon Him". 

Psalm 127:3
"Children are a gift from the LORD; they are a reward from him".

Mark 9:36–37
"Then he put a little child among them. Taking the child in his arms, he said to them, "Anyone who welcomes a little child like this on my behalf welcomes me, and anyone who welcomes me welcomes not only me but also my Father who sent me." 

The Scare

So the day after I wrote my last post we had our first big scare. I woke up around 4 pm after a 12 hour shift at the hospital. I am talking to Jade and Jora  to see how their day was, then I ask Jade about the babies. Jaycee was doing great but she really hadn't felt anything from the twins. I casually ask her when was the last time she felt them kick. "oh sometime yesterday!" Okay you gotta be freakin kidding me really? Okay Jade here is some coffee and some sugar lets get those babies moving. After a long time of nothing it is time to 

call the doctors. We were told to go to labor and delivery to get things checked out.

 I am trying to hold it together and not let Jade know how scared I am for she needs my strength. But as we are sitting in the waiting room I burst into tears. Has all our fears been realized? Has the babies life line turned into a double edged sword, severing the link to the life it gives? I step outside to collect myself. When I come back in I am so proud of her as she is sitting there so sure of everything. She tells me Mom it will be okay I know they are fine. She has faith in God and her little miracles. She just knows these babies are meant to be. She asks me to buy her a package of starburst, right now I will deny her nothing. I get her a package then she instantly pops a pink strawberry one in her mouth. Within 5 minutes she goes awwhh the babies like the candy. My spirits soar she felt a movement. My tears start to flow again but this time it is from relief!!

We finally get a room and the RN puts a doppler on Jades belly. Baby "A" heart rate is 154 and baby "B" heart rate is 146. Oh another sigh of relief. Jade is then ushered back for an ultrasound. A feeling of doom settled back over me when I learned the growth discordance between the babies had grown. They are now a week apart in size. I feel that knowledge is power so I hit the internet running. I contacted different organizations trying to get information specific to MoMo twins. They are so rare that the info you find is on MoDi twins and is hard to correlate to MoMos. 

I have accumulated many questions to ask Jades Peri at our anatomy and physiology ultrasound on the 15th. At this appointment we get to meet one of the other Perinatologist of Kaiser Roseville. When the tech is done Doc comes in and we are again are super impressed. He answered 8 of the 10 questions before I even asked them. He also gave us more information. It feels very good leaving a doctors appointment feeling fully informed and we are grateful. It feels safe to be putting our trust in these doctors because they truly have these little babies lives in their hands. So here is the update on the babies:

They are doing amazing.
Baby A is 10 oz(283grams) in size which is 50th percentile for gestation age
Baby B is 7 oz(198 grams) in size which is 25th percentile for gestation age
Their hearts, Kidneys, lungs and brains are all as they should be in fact all their vitals organs are. The babies have no noted malformations.  The  blood flow through the cords is perfect with no restrictions. There is still about a week size difference between them BUT doc said no need to worry there are no indications of problems.

Oh yeah and they are still girl.....


Next appointment is Dec 6th see you then!!

20 weeks

 

18 weeks and counting...



We went to see her Peri on 10/26 everything looked as it should one baby was a little bigger than the other but not enough to cause the doc any concern. The cords are knotted already but then we knew that from the last appointment. I don't believe that her peri has seen anything to cause concern. I believe we would have been told .We are going to get a Doppler scan to check the flow at the next appointment which is 11/15. They are going to be doing an anatomy and physiology scan on both babies at this appointment which will be an in depth exam to look for abnormalties. My goodness it is almost the 15th.

 I am rejoicing at how time flys. I try not to watch the clock so time doesn't slow down for we are getting closer to the milestone of 20 weeks. Then on to 24, 25, 26, 27......... It seems like this pregnancy is full of milestones that you cant wait to reach holding your breath until you do. Then you take a deep breath and hold your breath again waiting to reach the next milestone. I know these girls are strong I know they are fighters and that they are blessed by the grace of God. Why do I doubt? Why am I scared ? Why do I refuse to buy anything but two of everything? I am trying to be my daughters rock. I am trying to stay positive. I see image after image of these little girls touching. hugging, kissing and I know how much they love each other already. And I know how much we love them. They were made to come into this world together and together they will come. I have faith and I trust in Gods love to protect them, keeping them alive and healthy.

So above you will note the emotions that overwhelm me everyday. I try to stay positive but doubt creeps in and I have have to shove it out. Most of the time I am not strong enough to do it on my own so I must then lean on God and my faith. He comforts me and lets me know it is going to be okay.

By the way did I mention we found out on 10/26 that they are girls.





They can't keep their hands off each other :)



The Beginning of our monoamniotic-monochorionic twin storie

Hello I am Nana of Jaycee and the expected twins. I am mom to Jora(18) and of Jade(20)who is mom of Jaycee and who just found out she is expecting MoMo twins. THIS is the storie of our journey....

In August at about 4 weeks Jade realized she was possibly pregnant . This was confirmed, with a visit to her OB, by a test and an ultrasound at 6 weeks. During this ultrasound only one baby was seen however jade kept having dreams that she was carrying twins. Jade has an 18 month daughter, Jaycee, during her pregnancy she had a lot of complications and a major case of postpartum depression afterwards. It was decided that often visits to the OB starting at the beginning of this pregnancy would be best. So two weeks later we were back for another exam.  I was sitting outside with Jaycee when Jade called and said mom you need to come in there really are two. I laughed and told Jade this isn't something to joke about she replied MOM come in here NOW. I was in shock twins run in the family, Jade had had 4 or 5 dreams that she carrying twins but I still didn't think.... 

We were sat down and shown the pictures of the two babies and their two yolk sacs. I was so overwhelmed I asked no questions. Jade is only 8 wks at this time you can see a lot with the little ultrasound but not enough so we were asked to go to the hospital for a regular ultrasound which we did. Everything looked good and the twin pregnancy was confirmed. Oh my there really are two. Many emotions were coursing through us excitement and fear,  so many feelings it is hard to put into words.

It wasn't until a little time had passed and the reason for the fear came to light. I started freaking out yes twins run on both sides of my family, going way back to when our families were still in Europe, but the out-come in recent generations has not always been good. My dads mom had carried two sets of twins one fraternal and one set identical. The fraternal twins arrived with no problem but with the identical set one thrived(my father) and one was still-born having not got enough blood and nourishment through his cord. Could it have been cord entanglement or TTTS? We don't know for sure because this was almost sixty years ago. We have limited information but from everything that has been disclosed it sounds like a MoMo pregnancy with possible TTTS. On the bright side my grandmas sister delivered perfect identical twins. There are a set of twins in every other generation on my mothers side. My mothers sister lost twins going into the second semester at this point I couldn't remember if there were fraternal or identical so I called her. I am sorry but I felt a little relief finding out that she lost her fraternal twins in an accident that was too traumatic on her body. I was very sad she had lost them but at least it was not another issue with carrying them. Then there is my sister who lost her MoMo twins at almost six months to TTTS a few years back. With all this loss I am scarred out of my wits and need to know what we looking at.  So I have Jade call the OB and explain our concerns. She said that she will look at things at next weeks appt to see what she can see. When we arrived at the Dr we are ushered in for an ultrasound again on the small office machine and numerous times are told there doesn't look to be a membrane between the babies. The one good thing that we knew at this point was the babies were not conjoined cause the were laying with their heads next to the others feet. We were told we will be able to see more at the ultra sound next week. So I get home and start doing my research. I am devastated by all that I read. It is so overwhelming and I decide not to share with Jade all the info I have read. Not that she doesn't have a right to know but with everything in our family that she already knows I don't want to scare her further until we know for sure. 

On 10-10 we head to the high resolution ultrasound, I am armed with questions(thanks to monoamniotic.org). Five minutes into the ultrasound the tech said I am not going to be able to answer any questions I will be getting the Doctor to come in here after I take some measurements. Right after she said that the babies lips came together as if kissing then there hands started touching each others faces. They are now laying head to head. It was bittersweet but I knew what the Dr was coming into talk to us about. The Dr came in and moved the wand around looking and looking but could find none. There is no membrane the twins are in fact MoMos. The Dr turned out to be the perinatalogist that Jade was now going to be seeing. She answered questions before we could ask them. The key one being inpatient will begin at 24 to 25 weeks. She is wonderful and we are very happy that she is taking over Jades care. Jade had a hard time taking in all the risks and possible outcomes. She panicked but .....

She is enlightened now and ready to beat the odds.

look at the love already

Jade and Jaycee 05/11

Jaycee 10/12

Here are some statistics
About MoMo Twins
Monochorionic/Monoamniotic

• 75% of MoMo twins are girls
• MoMo twins are always identical, they are always the same sex: either two boys or two girls. Like virtually all monozygotic twins, they are the same gender because they derive from the same gene set.
• MoMo twins are very rare. Only 1 percent of all twin pregnancies will be monoamniotic.
• The survival rate of MoMo twins is estimated at about 60%.
• Mothers of MoMo multiples should be cared for by a perinatologist (obstetrician specializing in high risk pregnancies),.
• MoMo twins are often misdiagnosed in the early weeks of pregnancy when the membrane is so thin as to be nearly invisble. Often a later ultrasound reveals a dividing membrane confirming that twins are actually MoDi (Monochorionic, Diamniotic).
• MoMo twins are the result of a late splitting egg; one that split around 8-12 days after fertilization
• MoMo twins share a placenta and amniotic sac which means they have skin to skin contact
• MoMo twins are considered extremely high risk because of the risk of cord compression leading to fetal death as a result of umbilical cord entanglement
• MoMo twins are always delivered by C-Section
• MoMo twins are usually delivered between 32-34 weeks gestation because the risks of staying in utero are greater than the risks associated with a premature birth



This is the biggest threat to MoMo twins

• inpatient monitoring at viability yeilds the greatest success rates 
• Most Perinatologist give you the choice of going inpatient between 24 to 28 weeks. You have to decide if you comfortable with the statistics of a micro-preemie and what stage. We are just praying to get in and make it to 32 weeks. Here is the difference between a 24 , 26 and 32 week preemie.
  
  Stats at 32 weeks
  98% chance of survival
  7% CLD (Chronic Lung Disease from the ventilators and being on oxygen for so long)
  1% NEC Necrotizing Enterocolitis (Parts of their bowels can become infected a die due to not being ready for milk)
  NA for PDA (the valve not sealing to create a separation of the 4 heart chambers. This generally happens with the babies first cry).
  1% IVH (level 3/4) These are severe brain bleeds that can lead to Cerebral Paulsey and other behavioral disorders.
  0% ROP (This is a Retinopathy of Prematurity can lead to blindness)
  
  Stats at 26 weeks
  84% survival
  34% morbidity (Severe IVH,CLD,NEC, infections ROP)
  44% CLD
  
  9% NEC
  48%PDA
  9% IVH
  5% ROP
  Stats at 24 weeks
   66% to 80% survival