"To eat is a necessity, but to eat intelligently is an art." - La Rochefoucauld

Thursday, August 24, 2006

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.

14 comments:

Crystal Kalinowski said...

Hi guys,
I want to first of all thank you for your updates. I check for them everyday. I don't want to drive Kev crazy at work with details because I know he's really busy.

You guys have shown such a tremendous amount of strength throughout this difficult journey. I know you have a long way to go, but you will be so suprised by how much strentgh you will have to draw on after the babies are born. Just when you think you have had enough of NICUs and the constant beeping and alarms, you take a look at your baby and it all kind of melts away. I am sure I am doing a lousy job of describing this, but trust me, you'll make it. I don't know what parents with "normal" children feel like, but because of Ian's "special" heart Jeff and I feel like we can tackle everything as a team.

It's a long journey, but all 4 of you will come out the other side of this stronger and closer and more in love than ever.

Keeping up the prayers,
Crystal, Jeff and Ian

Samantha said...

Hi guys,
I have been checking everyday on your blog to check your progess!! I continue to pray for you guys everyday. I know how pregnancy can be- all the ups and downs but I think in your case you guys are hanging in there and doing a great job!!! I can't wait to meet your little guys.
Miss ya and love you!
Samantha

Christine said...

I am so glad that all four of you are hanging in there. Danielle and Kev, your boys are proving to you that miracles are happening. Sounds to me you have the best care possible right now at U of M!! I appreciate the updates more then you know..... we continue to pray that everything keeps going well.
I made a point to watch the special. I too was disappointed at the special on TTTS......your journey seems more involved then how they described.
Danielle~ I know you already know this but I have to say it anyway.... what an amazing husband you have...my cousin Kev....you are such a wonderful man to spend all nights right by your wife's side. I know you think, "where else would you rather be"......but you two are perfect examples of unconditional love.....and it just makes me so happy to see :)
Anyway, i love you both and you are in my thoughts and prayers always.....
Ben and Jake~~~ when ever God says it is time to make your debut into this world....we will be watiting with so much love and excitement....it will be the best day in many of our lives :))
I LOVE YOU ALL!!!

Kara said...

Kevin and Danielle -

Your spirit continues to amaze me. My thoughts will be with you on your big milestone, Fetal Appreciation Day. I pray that you and your boys will continue to reach milestones. Week 30 is just around the corner!! Continue to have your positive attitude and faith. Your boys are survivors and fighters.

Danielle, if you ever need to talk...I am just a phone call away. I know this is very draining, but you are doing a wonderful job. Your boys are truly lucky!!

*HUGS* and Prayers -

Kara

jenny marie said...

You're right, having preemies is a whole new challenge but don't worry - you'll get through it. You've made it so far and that's something to be proud of. You've done everything you can and it's completely out of your hands. Try not to be nervous about the scans because at this point, you've made it far enough for the boys to survive. So anything from this point on is o.k. I know, easier said than done but sounds like you and the babies are in excellent hands.
I do remember reading a study about the steroid temporarily changing the flow, but I don't think there's much merit to it.

Thanks for the update.

jenny marie said...

One more thing - I had a lot of contractions and it scared me for future pregnancies (didn't know if my body was prone to premature labor, or what). But the doc said it was because my body "knew" something wasn't completely right and was trying to get the babies out. Don't know if they mentioned that, so thought I would.

Renee said...

Thanks so much for the update! I think of you guys every day! Your journey is very rough right now. Thank you very taking the time to share it with all of us!

I remember seeing the NICU for the very first time also! Very scary at first! It will be your home away from home once the boys are born. You will feel like you are holding your breathe until the day all the wires and tubes are disconnected from your little angels. But that time will come and little peanuts grow into very big kids VERY fast!

You and Kevin are doing such a great job as parents of these two little boys! You have educated yourself and have done everything possible to have the best outcome! And you will!

We'll all be thinking of you as school starts!

Hang in there!
Renee

Anonymous said...

Hi Danielle and Kevin (and Ben and Jake),
Thanks for the update - I did watch the special and was also disappointed - so I'm going to forget about it. Everyone had told us to watch a PBS program on the life of 6 children with leukemia a couple of months ago - it was horrible - I cried the whole time. Hospitals are not fun - but I'm glad you guys are making the best of it! I'm so glad that Kevin is able to stay with you Danielle - that must be such a help. When can I schedule a massage? Sounds nice! I started a full-time teaching position this week (I have not worked full-time for 4 years). It is a preschool class at Lincoln Consolidated Schools, just thought you would like to hear that I have 4 sets of twins in my two classes! Doesn't that sound like fun? I'm excited! Have fun at your pizza party. Take care, Kalli and Alex

Shannon Cirella said...

It was great to see both of you. Danielle- You look wonderful and Kevin, you too! You guys are doing a great job and will continue to do so. Those guys will get here when they are ready and God will make sure to take extra care of those little guys. They are special already, can you imagine when they are in your lives everyday. As I sit hear listedning to my boys fight and scream at each other. Can you see the love? Ha ha! Anyways Ryan is having A BRAKDOWN as kyle has hit him again, so gives those boys a kiss for me and i will chat with you soon. Love you both and keep up all the good work!

Dre, Laura and Mia said...

Hang in there guys! We are constantly thinking of you and hoping for the best possible outcome.

Lots of Love
Dre, Laura and Mia

Anonymous said...

Hang in there you two. The best is yet to come. Sheila

Anonymous said...

Hang in there you two. The best is yet to come. Sheila

Anonymous said...

Hi guys:
Thank you so much for the update; I truly log on several times a day to keep up with you guys. You all continue to be at the top of the Porter-Tarcha family chain of prayers. We are all pulling for you.
Love to you all,
Jeannette

P.S. Danielle, it was so good to see you the other day. I may call you this week to schedule a visit as my mtg at U of M was cancelled last week and rescheduled for this week. Have fun at your pizza party!

John said...

Hi Danielle and Kevin,

Hurray for Ben and Jake. I'm so happy that you have made it this far. What your going through now is exactly what we went through two years ago. I'm glad you were able to get a tour of the NICU to help prepare yourselves when the time comes.
Your comment about the dad in the NICU brings back memories, happy ones of course. I can remember leaving my house at 5am, getting at the hospital at 6am and staying till about 1 or so, doing kangaroo care ,changing diapers, changing more diapers(these little guys poop alot). I'd get home around 2pm and my wife would go in and stay till midnite (our son was 2 1/2 at the time and we didn't want to ship him off to babysitters everyday). Even though we have never met, you both sound like me and my wife (with the exception that you have your own personal message therapist). You will get through this and everything else in life will seem easy.
The blood flow issues are almost the same as what we went through. Our daughter Brooke was attached to the end of the placenta and Rachel was smack dab in the middle. There was a pound difference at birth. The measurment on the u/s for their weight was off by a little more than a pound with Rachel(she was 3 lbs 6 oz at birth, Brooke was 2 lbs 7oz).
Now that you have had the NICU tour, still try and ask alot of questions.
We still keep in touch with some of the NICU staff. To me, they are the kindest most caring people in the world.
If you have any questions, concerns, need to tell a joke, house questions, or just want to vent email me at JandJCPR@aol.com.
I'll try to help as best as I can.

Stay positive.
My girls (and son) bring smiles to our faces every day.

You are all in our prayers.
Sorry for the rambling.

Take care,
John