Update on Connor

Update on Connor:

Connor is still in the neo-natal intensive care unit (NICU) on a ventilator, and will be for the foreseeable future.  Here’s an update on what’s happening and what we think happened with him.

The history: In the process of twin-to-twin transfusion syndrome, Connor was the recipient twin.  The recipient twin is usually the sicker of the two, because they start to go into heart failure due to severe fluid overload (hydrops).  Connor experienced heart ‘failure’ (different than his heart stopping or heart attack) at 19 weeks due to TTTS, this was the primary reason the laser surgery was performed as an emergency procedure late at night.

Since the surgery, Katrina had done a stellar job on bedrest, and after dozens of ECG’s, monitoring, and ultrasounds, 1-3x/week over a span of 17 weeks, his heart had showed good overall improvement, with some ‘mild’ damage (per our pediatric cardiologist).  Due to his history of heart problems, we expected Connor to experience some difficulty after birth, and anticipated a short NICU stay for him.

Fast forward to now: The boys were born at 36 weeks/4 days.  After birth Connor started to experience difficulty breathing.  He was quickly taken to the NICU, and his situation started to worsen, but in a way completely different than expected.  He started to experience difficulty breathing and had to be put on a ventilator.  Instead of having too many red blood cells, as anticipated, he had the exact opposite problem, he had too few red blood cells.  The doctors ran a bevy of tests, trying to rule out brain damage and other problems.  They finally landed on the fact that they think all of his problems are cardiac related due to his heart damage from the TTTS (twin to twin transfusion syndrome), which apparently is more severe than anticipated.

His current treatment plan:  The doctors think his main problem is right ventricular hypertrophy and pulmonary hypertension.  This means that the part of his heart that pumps blood to his lungs is damaged and not pumping very well.  Pulmonary hypertension means that the blood pressure in the blood vessels in his lungs is too high.  Because of this, he is having significant difficulty getting rid of carbon dioxide and having difficulty getting oxygen into his blood.  Therefore, the doctors are trying to ‘give his body a break while his heart heals’.  He is on a ventilator to assist with breathing.  He has nitric oxide through his ventilator to assist with gas exchange in his lungs.  He is on several medications to assist with heart function.  And the one that is the toughest: he is on a heavy sedative to keep him completely relaxed while all of this is happening.  They want him to be completely relaxed, so they want us to refrain from touching or talking to him, as this will stimulate him too much and his oxygen levels drop.

This will not be a quick process.  He most likely will be on the ventilator for an extended period of time.  We do have any idea when we will be able to hold, touch, interact with, kiss, talk to, or love on our baby boy.

Please be in continued prayer for him.  This is an incredibly difficult time for our family.  

Birth of the Boys: Update from Jonny

Update on 4/4/13 from Jonny

Here’s an update on Katrina, Timothy, and Connor.  The boys were born on 4/3/13, at 10:53 and 10:54 AM.  Katrina’s water had broken the morning prior, and we had been at the hospital for about 24 hours.  As with all twin pregnancies, Katrina had to deliver in the operating room (OR), but wanted to try a vaginal delivery.  After about an hour and a half in the OR, the doctor advised that we switch to a C-section, and about 20 minutes later the boys were born.

Timothy was born at 6 lb 3oz, 18 and ¾ inches long.  He was doing very well at time of birth, and has been able to go to the full term nursery.  He is having some issues with his blood sugar and feedings, but overall has been doing well.

Connor was born at 6 lb 2oz, 19 inches long.  He was having some issues with his breathing, and was taken to the Neonatal Intensive Care Unit (NICU).  In the NICU, they attempted using supplemental oxygen to assist his breathing; when that wasn’t enough they put him on a ventilator.  The NICU doctors were uncertain of why he was having so much difficulty breathing, as he and his brother’s lungs are similarly developed.  They ran a bevy of tests, including x-rays, ECGs, and a brain ultrasound (thinking that he might have had some brain-stem issues that were keeping him from breathing well).  The x-ray and brain ultrasound looked OK.  At this point they are still unsure, but think that the problem breathing might be due to Connor’s heart damage from the Twin-to-Twin Transfusion Syndrome.  They also placed him on nitrous oxide to help dilate the blood vessels in his lungs.  This will help reduce the work his heart has to do.  They are trying to keep him somewhat sedated through medication as well, so that he can relax and help his heart heal.

Please continue to keep our family in your thoughts and prayers.  For Katrina as she recovers from major surgery and exhaustion from labor, and tries to keep up with feedings for Timothy and going to a different part of the hospital to see Connor.  For Timothy’s blood sugar and weight to do well.  And for Connor’s heart to heal and for his breathing to stabilize, as well as giving the doctors wisdom to know what is going on.  And for myself trying to keep up with everything.

Thanks from our family! (Connor on L, Timothy on R)

36 Weeks-Say what?! We made it?!

It’s hard to believe but we’ve made it to 36 weeks!!!  My doctors were all smiles this week and each appointment felt like a celebration for the most part (minus of course the horrible discomfort of long ultrasounds on my back and monitors awkwardly attached to my huge overinflated belly-still hate that word but I do like it better than tummy).  One of the nurses even made us non-alcoholic mixed drinks to celebrate during monitoring!

Each day for the past two weeks I have woken up feeling like I am living an out of body dream with the realization that I am still pregnant (too bad I can’t actually be out of my body for a little while though)!  With each day of growing aches, pains, trouble breathing and even heart racing, I don’t forget for a minute just how much of a miracle this really is!  Don’t forget the surgeon/doctors who performed the life saving Twin to Twin Transfusion laser ablation surgery at 19 weeks set a goal of me reaching 30-32 weeks!!!  At that point survival of our boys was the only goal and anything beyond that was said to be hopeful thinking.  Now we are just days away from a full-term twin pregnancy with boys who are measuring at weights rivaling “normal” healthy twins!  On average twin moms deliver around 35 weeks-which we officially passed today-seriously-that’s crazy in all the right ways!  

So at this point contractions are no longer a big fear inducing concern! If I went into labor from this point on they would not intervene, our babies are safe.  Of course the closer they get to 37 weeks the healthier they will be.  So the plan is that if I do not go into labor naturally I will be induced on Monday, April 8!! We have an official end date-an official birth date! Crazy! I have now been on bedrest for 18 + weeks –that’s right 4 months of putting all thought and effort toward keeping our miracle babies IN.  Now it’s time for them to come out??  That’s a difficult thing to wrap my brain around.  Doctors have said I can stop taking one of my daily medications (prescribed to prevent contractions) as of today. Unfortunately it’s not the medication with the crazy side effects-Procardia-that one I have to stay on until birth because it has proven to be effective in helping babies to heal post TTTS surgery.  I have also been told I can slowly begin resuming activity…which is good because in order to be ready to be a mom of two I need to regain energy, stamina, etc. lost during bedrest. The only problem with that is that this is the point when most women pregnant with twins STOP normal activity (even without doctor mandated bedrest) because of how difficult it becomes. 

A week ago I spent several hours late into the night at the hospital because of just how miserable my body had become!  After a whole day of heart palpations and shortness of breath I called my OB office and they instructed me to go to the hospital.  I was tested for everything under the sun-even flu, which I had no symptoms of. Results came back showing-NOTHING! Basically the only thing they could say was that my body is just overtaxed from having twins-yikes! So needless to say I’ve had other days like this since-miserable!  The worst part of the hospital visit was that I was pricked multiple times and a bloody mess because the nurse could not get my IV in.  This as well as drawing blood is a common problem with me because my veins are so small and often “blow” when they attempt to tap into them (lovely I know-thanks Dad-that’s who we think I inherited the problem from).  So the plan is that the next time I go to the hospital we will immediately request that someone from Anesthesia be called to place the IV.  This is something I wouldn’t mind prayers for!  I really don’t want to have to deal with this in the midst of labor.  Please pray it goes smoothly.

They kept me that night until almost 2am because the boys, mainly Connor showed erratic heart rates.  It all worked out fine though and seemed to be a fluke.  With each and every monitoring we do (now twice a week) the boys look great!!  Both are head down giving me the chance to attempt a “normal” vaginal delivery-again a miracle if you ask me!  We are prepared though that an emergency C-section is always a possibility. Just the chance to try is something I really didn’t think would happen and am SO happy about. 

This week we’ll be back at the Perinatal center for scanning and monitoring on Monday & Thursday, as well as at my OB office on Wednesday- our bags stay packed in the car.  Our last appointments!  So, THANK YOU for your prayers, meals, encouraging cards, care packages, and kind words that have sustained us through this difficult pregnancy!!!  Your prayers can now shift to a healthy delivery.  Wow-can’t believe I just typed that-life is good!  

Happy Easter! Have a joyous Resurrection Sunday-my favorite day of the year!  

Blessings & Love,
Katrina

Ps. If you want to throw in some prayers for my exhausted and miserable body and attempt to resume some activity that would be ok too.  

Still Cookin'

Today (34 weeks & 5 days) was a long day of appointments. Morning: Perinatal Center for monitoring and an ultrasound. Afternoon: OB office for weekly checkup.  The result: No change!

 Connor & Timothy are still cookin'!! 

We'll be back at the Perinatal Center on Monday bright and early with our bags packed (just in case) for another round of monitoring and ultrasounds.  We are so thankful that our boys are growing, growing, growing as they should be and defying all the odds...even if I do feel like a giant water balloon (see previous post).

How are you feeling?

How I physically feel tonight as described by google images...

I am now measuring what a woman pregnant with one child would be around 47 weeks!  

That is all.  

"I prefer to wear suspenders with my Belt"

This morning we went back to the Perinatal Center as directed, with our bags packed ready to be admitted if needed.  Monitoring showed the boys are still active and doing well.  Then on to the ultrasound for a look at blood flow and of course-the ductus.  Ultrasounds take a lot longer these days considering we have to stop so often so I can sit up so as not pass out from all the weight bearing down on me, making me short of breath and causing my heart to race-ahhh the joys of the final weeks of a twin pregnancy! Each time we are at the Perinatal Center we see one of 2 or 3 high-risk doctors.  We have seen Dr. Ott quite a bit in recent weeks because he is considered to be the expert in the group at viewing blood flow to the heart. He told us today that nothing has changed and that he feels good about   it. He told us there was some debate among doctors about how important it even was to continue to check the ductal flow when so many other factors showed nothing but positive signs of good/improving health.  Apparently just today he and another doctor from the team were reading a newly released medical journal article which basically stated in a nutshell that there is no real consensus on the best way to monitor a pregnancy post TTTS laser surgery!  There just isn't a large enough sample group of women experiencing TTTS, because it is so rare! His response to all of it was to tell us that he thinks we should continue what we are doing, since things are going so well. In other words continue the same monitoring and continue on the same medications.  In his own quirky way he put it into laymen terms his reason for continuing to check the ductal flow saying, "I prefer to wear suspenders with my Belt!"

Today was just another reminder of the fact that just a matter of 10 or so years ago our boys would not likely have survived TTTS.  The laser surgery is fairly recent! It's such a great feeling to watch doctors smile in pure joy as they realize our story for the first time and recognize that modern medicine is advancing and saving lives!  Even more reason to spread the word for awareness and support of research!  Here is a good site to check out and a good page to "Like" on Facebook.

So we'll be back on Thursday bags packed again, if all goes well then we'll return on Monday and continue with twice a week monitoring from here on out.  Today I am 34 weeks and 2 days and so happy to be able to provide a safe space for my miracle babies to continue to grow as they are intended to do a little longer! I may complain and whine about how uncomfortable I am but I don't forget for a second just how incredibly blessed we are!  Please keep in mind that prematurity is a very big deal! We do NOT want to rush this and are so happy that our doctors think it is safe to let me go as long as possible up to the 37th week.

Now if you'll excuse me this pregnant woman has a date with a bag of Reese's peanut butter easter eggs!  One of the more superficial reasons why Easter truly is my favorite holiday.

Thanks for your prayers & support!

Ductus Confuse-Us!!

Well it's been a very confusing and long day but we are home now believe it or not!  We arrived early this morning at the Perinatal Center for monitoring, both boys looked good just as they did yesterday. After more waiting we then went in for a more detailed ultrasound to get a look at the ductal flow that was the big concern yesterday. The nurses were speaking to me all morning leading into the ultrasound as if they were sure I was going to be admitted today and likely induced tomorrow.  However, the ultrasound tech had a horrible time getting a good reading of Connor's ductal flow because he was "practice breathing" which was preventing her from seeing things clearly.  Basically the doctor took a look and said that because the blood flow through the umbilical cord looked so good and other indicators did as well, that I will not go into because they are so confusing, they didn't see any reason to keep me overnight at this point.  So we will return early Monday morning & repeat this process and if we then get sent home again we will repeat it Thursday as well.  We were a little uneasy about leaving the hospital with what felt like inconclusive results but we trust that there is no way they would send me home if they had real concerns. They have been so good to us and so cautious throughout the pregnancy we just have to trust & wait and see.  It was good also to get the second round of the steroid shot that will help develop the lungs of the boys more quickly.  We are grateful the boys can continue to grow and mature in the womb. Each day that goes by is important, gestational age matters!!!  We are in no rush.  We are however anxious, not knowing, of course, what will come.  For now they look good and that is all that matters.  So I'm at home now and ready to sleep the day away-EXHAUSTED! Jonny has of course gone back to work as vacation time is so precious to us.

We will keep you posted.  Please remember you can sign up with your email address for notifications each time we post something new. It is to the right of your screen. Just enter your email address and you'll get an email telling you that you are signed up. Make sure to check your spam folder!

Love & Blessings,
Katrina