28 Weeks 3 Days

WE ARE STILL PREGNANT!!!! Despite the constant agony and stress of our current situation, we are so happy to have gained more time for these little ones. We had an ultrasound on Monday and things are about the same. Ben did show reverse flow of the umbilical artery again which we were not happy about. As we mentioned before, this means something is happening with his environment, whether it be the placenta or the cord is yet to be determined. The good news is he continues to be active and is maintaining normal amniotic fluid levels. He is showing no signs of being stressed. My doctor told me today that we should just take one hour at a time.

Today marks two weeks in the hospital. We have made friends with the staff and have moved a lot of stuff into our “apartment.” We are trying to make this situation as tolerable as possible. To be honest, there is nothing easy about this but we understand this time in the hospital is a valuable investment. Mentally, we are both drained. We feel like we are just going through the motions. Every night before we fall asleep we thank God for giving us another day.

As we close for the night, I wanted to share this beautiful poem that my friend John passed along to us. When his girls were in the NICU one of the nurses gave him this poem. It is very sweet! Thank you John!!

A Child’s Angel

Once upon a time there was a child ready to be born. So one day he asked God:

They tell me you are sending me to earth tomorrow but how am I going to live there being so small and helpless?

Among the many angels, I chose one for you. Your angel will be waiting for you and will take care of you.

But tell me, here in heaven, I don’t do anything else but sing and smile, that’s enough for me to be happy.

Your angel will sing for you and will also smile for you every day. And you will feel your angels love and be happy.

And how am I going to be able to understand when people talk to me, if I don’t know the language that people talk?

Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.

And what am I going to do when I want to talk to you?

Your angel will place your hands together and will teach you how to pray.

I’ve heard that on earth there are bad people. Who will protect me?

Your angel will defend you even if it means risking its life.

But I will always be sad because I will not see you anymore.

Your angel will always talk to you about me and will teach you the way for you to come back to me, even though I will always be next to you.

At that moment there was much peace in heaven, but voices from earth could already be heard, and the child in a hurry asked softly:
Oh God if I am about to leave now, please tell me my angel’s name.

Your angels name is of no importance. You will call your angel:
Mommy.

28 Weeks!!!!!!!!!!!!!

We are so happy to say we are 28 weeks pregnant!!!! We met our first big goal!! We know that 28 weeks is still not an ideal time to deliver but after being told we would miscarry at week 17 this seems like a true miracle!!

Now if I could just get little Benny to pack on a few ounces in these last few days/weeks. I have spoken with a dietician on how I can bulk up my diet these last few weeks to give him everything he needs plus some. Even though the hospital bed rest is really challenging, I think it has been key in the survival of my little ones. I seem to be having less contractions and I know I am burning a lot less calories, which means its all going to the babies.

Well we have to get ready for our big party tonight. I am making my parents toast Jake and Ben with a champagne flute of boost!!! After consuming 240 cans of boosts, I think its time my family got a taste of the wonderful cocktail too. :)

27 Weeks 4 Days

Kevin and I want to thank everyone for your continued support and prayers. We need your prayers more then ever right now. I really don’t know where to begin… As Kevin mentioned last week, we were admitted to the hospital at 26 weeks and 3 days. At that appointment, they told us delivery could be within the week due to the reverse flow of the umbilical artery. Well here we are one week later and still hanging on. These boys amaze me every day. They have such a will to live! The odd thing is that if you go by the textbook, it says that reverse flow will NOT improve and progression for the worse is imminent. Once again, our boys continue to deify the odds! At our appointments this week, no reversal flow was detected. The doctor said it could be because of the steroid shots but that is highly unlikely. Not having the reverse flow buys us more time, which is desperately needed at this point in the pregnancy.

In addition to the reverse flow, I have been having some very minor contractions. We have been monitoring these several times a day and they seem to be getting less frequent. I am staying very hydrated and that seems to be helping. We continue to be monitored twice a day in addition to ultra sounds and echocardiograms. The daily monitoring is very stressful. I dread this process because I am always afraid we are going to see something that will tell us today is the day.

Today we had a full ultrasound only to find out Ben has only grown three ounces in two weeks. Ben is now one pound five ounces and Jake is two pounds one ounce. Ben’s slow growth is very concerning to the doctors. It could indicate that his portion of the placenta is aging but again, only time will tell. On a positive note, both boys have great fluid and activity. Their heart rates also are very good.

So how do we decide when we should deliver? The doctor said today could be the day..or two weeks from now could be the day. It’s hard to determine how things will play out. Both of our UM docs said they expect to deliver these boys in about 1-2 weeks. We feel this is much better then 26 weeks when we were admitted to the hospital. They will look at the big picture…their fluid, activity, growth, heart rates, dopplers, etc. The day that all signs point to the fact that they would do better in the ICU then inside of me... will be the day we deliver.

Tonight we went on a tour of the NICU. This was very sobering. I have seen pictures of babies that small but to see it in person was very difficult. I saw a dad in there by himself and his little girl was holding onto his finger. He was smiling at her and glowing just as a new dad should. She was hooked up to millions of tubes and had translucent skin. I did everything in my power not to break down right then. It was so hard to see a stranger’s baby, I can’t imagine what it would be like to see my own. I hope I can be as strong as that dad was tonight.

We did see a 27 week old baby and a baby that was born at one pound five ounces, which is where Ben is right now. Again, it was very difficult but also very helpful. I think it’s important to become familiar with what lies ahead. I thought being on bed rest for 11 weeks was challenging….I think bed rest will be a piece of cake compared to the ICU journey.

How are we doing??? Well…as good as can be expected. Hospital bed rest is a lot more challenging then being on bed rest at home. Kevin might as well be on bed rest too. He refuses to go home. He sleeps on a chair that pulls out every night right next to my bed. We like to call our room “apartment four.” We have set up internet, a DVD player, and made it as homey as possible. We joke that we finally have a place of our own. Our days go pretty fast as we are swarmed with docs and nurses all day long. I really miss seeing my friends and family. It is so hard to have visitors when we have testing all day and we are exhausted by the end of the day. Each day is so unpredictable. I apologize for not keeping in contact with everyone. Thank you very much for your understanding. I look forward to the day when we can have friends over for dinner or I can meet a friend for lunch. One day soon we will enjoy those things again.

As far as the hospital stay goes, we feel we are in very good hands. Our nurses and doctors have been outstanding. The first few days we were here we were on 24 hour monitoring, which was extremely challenging. One nurse, Debra, practically slept in my bed with me holding the monitors on my stomach all night. She was so patient and nurturing. We feel like we are in the best place we can be. I have been getting really sore and achy from the hospital bed but fortunately my mother-in-law is a certified massage therapist. Boy did I hit the jackpot!!! Not only has Sue brought us several meals but has also given me daily massages. Ever since I have been getting the massages, I feel like a new woman!!! I am so grateful for her..she has made this experience much more tolerable.

With Kevin and I staying at the hospital full time, it has been really hard to get things done with our house. Fortunately, I have a great builder and amazing parents who have been taking care of a lot of house stuff for us. Every night my mom and dad lug up a bunch of granite and hardwood samples, as we need to make these decisions quickly if we want to finish this house. They have been meeting with our interior decorator and tying up loose ends. I don’t know how people get through times like this without a support system.

Its funny…despite being in this difficult situation I continue to feel lucky. I feel lucky to be blessed with these two boys. I appreciate my friends and family more then ever. I hope in five years I always remember how I feel now. I hope I remember how important it is not to stress about the little stuff. This time will always remind me of how precious life really is.

We are starting to plan for our big party on Sunday…WEEK 28!!! We are calling it “Fetal Appreciation Day.” We are not calling it a birthday…because we don’t want a birth! We are ordering pizzas for all the docs and nurses and having our own little celebration. Should be pretty wild and crazy!

Thanks for letting me talk. It has been a long time since I have been able to update the blog and had a lot to say. Now that we have an Internet connection, I hope to update more regularly. Hope all is well with everyone and we will be in touch soon!

PS) Did anyone get to see the special on primetime last night about TTTS? We were so disappointed with the ABC’s depiction of twin-to-twin transfusion syndrome. They were inaccurate with many of their explanations, and especially discouraging to any parents that are currently battling this disease.

Thursday August 17, 2006

We wanted to give everyone a quick update. We had our weekly perinatal appointment yesterday and were given news that we were not expecting. Everything we have been hoping to avoid quickly became a reality. During our routine Doppler flow study, Ben’s umbilical artery began to show signs of reverse end diastolic flow. He has been holding steady the past 7 weeks with intermittent absent end diastolic flow, continuing to grow at his own pace, but these new findings have triggered some alarm among the doctors. Given these findings along with Danielle’s cervix showing some funneling/shortening, the doctors admitted us for around the clock monitoring at the U of M Birthing Center. They also decided to give Danielle steroids to expedite Ben’s lung development, in anticipation of a possible early delivery.

So, what does all of this diastolic flow talk mean? That is what we have spent the last few days trying to understand. From what we have discussed with the team of doctors, the reversal of the umbilical artery flow means that there is increased resistance in the placenta. This resistance restricts the blood flow to Ben from the placenta and seems to be the reason behind Ben’s slower growth pattern. We have been told that babies can sustain absent and even reverse end diastolic flow for weeks, so long as they continue to show activity and growth. Monitoring the baby’s heart rates and activity is now our primary focus.

My poor wife has become a science project; complete with monitors, wires, I.V and machines tracking the babies every move. The monitors are hooked up to Danielle’s belly 24 hours a day to keep close tabs on both Jake and Ben’s heart rate and overall activity. There is also a diode that detects contraction patterns. The docs are basically looking to see when there is a contraction and how each baby reacts. They are looking for decelerations in Ben’s heart rate upon contraction. Fortunately, Ben is hanging tough and continuing to flip and somersault like crazy. Unfortunately for Danielle, all of this movement is making the monitoring very difficult. The nurse on the midnight shift yesterday was in our room literally every 30 minutes looking for the heartbeats on Danielle’s belly. In order to find the heartbeat, she uses an amplified hookup that blasts their every movement through 2400 watts of surround sound. I may be exaggerating a little, but as I lay there and tried to sleep, I might as well been at a concert. I did manage to get a few winks in throughout the madness, but Danielle was unable to get any rest whatsoever.

Tomorrow we are scheduled for an ultrasound to check the Doppler studies of both the umbilical artery and the ductus venosus. The ductus venosus connects the left umbilical vein with the interior vena cava. It allows oxygenated blood from the placenta to bypass the liver and return to the systemic circulation for distribution to the rest of the body. We will post our results as soon as we can. We don’t have internet in our rooms so it may take us some time to find a good connection.




Friday August 18, 2006

Our ultrasound went as well as expected considering how active these boys are. Ben’s umbilical artery only gave us one reading showing intermittent reverse end diastolic flow, which is an improvement from yesterday. The majority of his reading showed absent end diastolic flow. We also tried to get a good reading on Ben ductus venosus. Ben would not cooperate for the ultrasound and decided it was playtime. We picked up a few readings that looked normal, so the doctor finally gave up and said “given his activity, finding this reading does not concern me at this time”. We think that is good news because we didn’t get a negative reading, which may become a decision-making finding for the doctors. So we bought ourselves another day. On Sunday we will be 27 weeks gestational age. Our goal right now is to make it to 28 weeks. Danielle continues to be monitored closely for heart rates and baby activity. Because of the findings today, the doctors have decided that 24 hour monitoring would not be necessary and have decided to get readings every 4-6 hours. Danielle is ecstatic because now she can get some shuteye.

I almost forgot to mention, but last night the chief resident came in to take a quick Bio Physical Profile test on the boys. This measures their movement, breathing, heart rates and overall activity. They both scored 8 out of 8! They are over achievers already.

We hope to keep you all up to speed over the weekend.

Kevin and Danielle.

25 Weeks 3 Days

GREAT NEWS!!! We bought another week!! Today is a day I couldn’t wait to update the blog!!! Ben grew 4.5 ounces and Jake grew 5 ounces. Their weight discordance went from 30% to 27%. They both continue to grow at their own curve, which is so important. Ben is 1 pound 2 ounces and Jake is 1 pound 9 ounces. I think I overestimated what I thought they should be...the important thing is that my little guy is GROWING!!! ! And my big guy continues to thrive!!!

The doctor said the fluid also looked great. He continues to be encouraged with the activity level. Ben really is a wild man! Ben’s doppler was abnormal again but no change, which was good. One theory on why he has an abnormal flow is that maybe his cord is smaller then it should be. This would not be so bad. One side effect of a smaller cord is a tiny belly button. We could handle that! :)

The drive home from these appointments is usually not fun. We have to call and give the updates and its pretty stressful trying to explain all the findings. However, today was FUN! It was so nice to call the fam and share good news for once.

Thanks for all of the nice comments yesterday. Thank you especially to John and Jenny Marie. Don’t know if the rest of the group knows, but these new friends of ours are complete strangers that have been so kind to help us through our journey. John’s girls survived TTTS and Jenny Marie’s son survived IUGR. Sadly, Jenny Marie lost her little girl to IUGR. They have been so kind to share their experiences with us. They have no idea the impact they have had on us. I have said over and over again, once this is over, I will do my best to help other families going through this. Another great family is the Finbergs!! When Kevin and I read their blog, we were inspired. They gave us the idea of documenting our journey. Thank you to all of you from the bottom of our hearts!!!

25 Weeks 2 Days

Wednesday is the big day!! We have another weight check. We are hoping Ben will be 1 pound 4 ounces and Jake will be 1 pound 12 ounces. I guess we need to be grateful if Ben grows period!!! I can’t tell you how stressful these appointments are for us! We just hold our breath the entire time!! Please say a prayer tonight that our little guy has grown!! I strongly believe in the power of prayer!!

On a side note, I do have to vent and say after almost two months of bed rest, I am ready to pull my hair out! This is getting really old!! Sitting on a coach for two months may sound fun to most…but it is awful!!! I pray for patience and strength everyday. I think about last year at this time when I was training for my marathon, in the best shape of my life, and now here I am in the worst shape of my life. I am just watching my body turn to mush!!! Yea…it’s pretty hot! I know it’s a small price to pay for my sweet little boys!

I try to stay busy with house stuff and educating myself about the twins and their condition, but that is even starting to get old. For some reason, I feel guilty reading for fun or watching movies. I only watch three TV shows on a regular basis- Baby Story, Bringing Home Baby, and Oprah. Ohhh and the Tigers every night with my dad and Kevin. I normally do not like watching sports, but with two boys on the way, lets face it… I am going to eat, sleep, and breath sports!

Thank GOD I have such wonderful parents who make me laugh and smile every night. I feel bad that even though they have a 29 year old, they still have to take care of me!!! I know the job of parenthood lasts a lifetime…but who knew I’d be sitting on their couch at 29 years old and they’d STILL be taking care of me! Kevin and I are very lucky to have such great parents. We could not do this without them!!

Hope this doesn’t sound like “poor me!” Despite everything that is going on, I continue to feel blessed to be pregnant with these little miracles. I know this is just a short period of my life, but it seems like an eternity. I know it is 100% worth it!!! Kevin’s message to me today on the calendar was “Thank you for giving our boys the best chance possible.” That makes it all worth it for me!

Almost done with another day!

24 Weeks 4 Days (7 weeks of bed rest….ughhhhh!)

WEEK 25 HERE WE COME!!!! We made it through yet another grueling doctor’s appointment! Here is the low down: fluids, hearts, and cervix are all stable. The activity level of the babies is great! The doctor always tells us how encouraging it is to see an active fetus.

Ben is still showing intermittently absent end diastolic flow. It has been this way for five weeks now. The doctor told us since everything else looks good on him, not to worry. If he starts to show other signs of stress, that’s when we really will begin to worry. Dr. Crombleholme told us a baby can go weeks to months with absent flow and Ben’s doppler is not even 100% absent, so that was encouraging to hear.

Speaking of Dr. C., we had another very encouraging conversation with him on Friday night. He actually told us he thinks he was either wrong about us having TTTS or it has regressed. To hear him say he was “wrong” was an amazing thing to hear! We won’t know for sure if they have it till they are born, but he said he is amazed that we have made it to week 24 with no procedures. He told us that when he saw us at week 19 he did not imagine we would be doing so well.

He does believe we have IUGR. He told us week 24-28 is typically when an IUGR baby (Ben) begins to struggle. When we were told we have TTTS he said weeks 19-25 are the most critical. Lately, we were starting to feel so happy that we were out of the danger zone, but it looks like we are back to where we started. All we can do for IUGR is the bed rest and diet routine. There are really no procedures available to solve this problem. I just keep praying to God to give all four of us the strength to get through this.

We continue to be very frustrated with our health care providers. It really is a constant battle with the medical care professionals. Dr. C. is currently recommending certain tests but UM does not believe they are necessary. Each doctor has a completely different take on our diagnosis and care. This leaves us feeling confused and frustrated. We continue to believe it is our job to look out for our boys…after all, no one loves them the way we do! For the first time in my life, I am not afraid to question a doctor. We have found several discrepancies along the way that could have gone overlooked if we didn’t take matters into our own hands. A very important lesson we have learned through out this process is that you have to be your own advocate!

So as you can imagine, we are happy to be almost done with week 24! I really don’t think Kevin and I will be able to rest easy till these babies are at home with us. Actually, from what I have heard, there will be no “resting” with twins at home!!! :)

I will post again after our next appointment, which is next Wednesday.

After many requests by our blog junkies, I have finally downloaded a few belly shot photos. I chose this photo first because Danielle is exactly one day pregnant in this photo. No belly yet, but doesnt she look good!!!!

Week 17 at Josh and Nicole's wedding, one week before our diagnosis. (pictured from left to right, Katie, soon-to-be Auntie Nicki, soon-to-be Auntie Kim, my babies momma and Jessie.)

Here is my beautiful bride at week 22.

Another day.......Another Boost!!!!!!!!!!!!

Week 24