Wednesday, October 31, 2012

Non-Stress Tests and the waiting game

Well, we are done with cardiology appointments until this little man makes his appearance (which is in 5 weeks, for those of you who are counting!).  Now, we are working more closely with the Perinatologists (the doctors who will actually do the delivery) and my regular OB appointments. 

One thing we have started doing are weekly Non-Stress Tests (NST).  Each week, I go in for about 20-30 minutes and they monitor the heart heart and movement of the baby to make sure everything is still looking good.  This gives them an idea of whether or not we will need to move up the delivery because of stress on the baby.  Fortunately, our little man has been perfect so far!  If it wasn't for his heart, he would extremely healthy.  His heart rate is always great, he moves more than any human ever has...EVER, and all his measurements come back normal.  In my mind, this just shows me that he is going to have the strength to get through what is definitely going to be a long road for him.

Now, in other news...the waiting game.  I have to say, my attitude at this stage of pregnancy this time around is very different than last time.  With Logan, I was so ready to have him out!  I was extremely uncomfortable and 5-6 weeks sounded like such a long time!  Now, I am not going to say that I am not uncomfortable this time...I think I am more uncomfortable with this pregnancy (Insomnia and my psoriasis have definitely made it more difficult!), but 5 weeks just does NOT seem like that long!  When I think about the journey that we are going to begin once he is here, I just can't seem to grasp that it is going to begin in just a matter of 5 weeks.  This is crazy!!
Friday, October 19, 2012

PCMC Appointment: The Tour (Part 3 of 3)

The final and probably most enlightening part of the appointment was our visit with the Fetal Heart Coordinator and our tour of the facilities.  This was the part that really opened our eyes to what it will be like and what we can expect.

We started out staying in the same room we met with the cardiologist and met with Kim, the Fetal Heart Coordinator.  Her job is to help us with the logistics of things...where will our baby be a lot, what will the first week be like, what are our lodging options, what are the rules of the hospital, where do we eat, what resources are available to us.  We went over a lot of different things with her in that room, but most of our questions were answered during the tour.

We started out in the Cardiac ICU of Primary Children's...yes, you read that right...they have an entire ICU dedicated just to the cardiac patients.  While there were mostly babies, we saw a number of older kids as well.  I think this will be very helpful, especially meeting other people in our situation.

Probably one of the most eye-opening experience was seeing a little baby who had just come out of heart surgery.  She was tiny, even for a normal baby.  But she looked even more tiny being hooked up to all the tubes, IVs, and monitors.  This little person had so much equipment around her it was very overwhelming.  My thought was, "No wonder you are not allowed to hold them! I wouldn't even know how to pick them up!!"  It was hard to think about our little baby in that position.  One thing Tim and I talked about was how difficult is was when Logan had to be on oxygen for those two days in the hospital and how helpless we felt.  We can only imagine those feelings will be exponentially bigger, since there will be so much less we will be able to do and for much longer. The reality of how serious these conditions are reached the surface for both of us.

However, there were some very encouraging things to me.  One thing that was wonderful to me is that there is one-on-one nursing in the ICU.  I think it will be so nice to have just a handful of nurses that we will be working with over our time there.  I am sure these will be relationships we will come to treasure and they will be a blessing throughout the ordeal. Also, I was encouraged at how confident they seemed in knowing how to handle these difficult situations.  While this is our first time going through this (and hopefully our last!!), I am so grateful that we will be surrounded by people that know what they are doing.  Once again, the Lord has put us where we need to be and surrounding us with the people we need to be with.

Next, we went to the "third floor," or the floor we would go once the baby does not need ICU care, but still needs to be in the hospital.  Apparently, they need to be off certain medications, have certain stats, etc. in order to be off the ICU.  Mostly, cardiac babies spend time on the third floor learning how to eat on their own.  When they go into surgery, they are given a feeding tube once their system can handle food.  Because of this, they do not have the skills to eat normally, so we have to take special care to teach them how.  They will not be able to leave the hospital until they can handle food on their own, whether that is orally or through a tube.  This, along with other issues, will be what we deal with on the third floor :)

Finally, we jumped over to the University of Utah hospital, where I will deliver this sweet little guy.  Primary Children's and University Hospital are two different hospitals, but they work very closely together and they are connected by a sky walk. You can get from one to the other in a matter of minutes.  I was very impressed with the Labor and Delivery.  They have a Newborn ICU right there.  In fact, one room (most likely the room I will deliver in)  is connected to the ICU with a little window (thing McDonald's drive through...I think it is the same type of window!!).  Once the baby is born, they can hand the baby through the window directly into the ICU, where they can stabilize him, clean him off, and prepare him for the short trip over to Primary Children's.

It usually takes them a few hours to get him ready, but once he is, they will get the life flight transport team to wheel him across the sky walk to the cardiac ICU.  Also, they are very accommodating to letting me go over to see him as much as I want, even though I will have just given birth.

Overall, it was very good for us to get a visual of where we will be dealing with everything.  Once again, I can't say enough how grateful we are to live so close to such an amazing facility.  Although we know it will be difficult, we know that the Lord has His hand in all of it. 

PCMC Appointment: Study (Part 2 of 3)

This section will be a little shorter, but I thought it was really interesting and I wanted to make note of it.  After we spoke with the cardiologist, a very nice lady came into the room to talk to us about being a part of a genetics study.  Basically, they are finding over 4,000 participants with congenital heart defects and studying their DNA to see if there is any genetic link to why they have it.  They will take blood samples from both me and Tim, and they will also use the blood from the umbilical cord for the baby (so they don't have to poke him again...since that will happen more than we want anyway).

This was another one of those "wow" moments for me...that we are going to have a baby where people want to use his condition to improve the medical community.  Apparently, we are going to be approached a lot to be part of different studies and it is just crazy to think about.  It will be interesting to be a part of, that is for sure. 

PCMC Appointment: Echo-cardiogram and Cardiologist (Part 1 of 3)

So, as you all know, we had a very big appointment last week with the cardiologist/case worker at Primary Children's Medical Center (PCMC) and the University of Utah hospitals. All in all, it was a very good appointment, although it was a big eye opener to what we are going to be dealing with in the time to come.  I have decided to break up the appointment into three different parts (since we were there for over 3 hours and it was a LOT of information!)

The very first thing we did was a fetal echo-cardiogram.  This is the test they have done at every cardiology appointment we have.  Basically, it feels just like a regular ultrasound, but they take very specific measurements in the the heart, including pressures blood flow, and all sorts of other things.  They also look over the vessels around the heart.  I watched closely this time and they took over 100 pictures of the heart! (It is crazy to think about all the pictures this little guy has of his heart in his digital medical chart already and he is not even born yet!)  This test takes about 45 minutes to complete. 

Once we had the test done, they took us into a consultation room where we meet one on one with the cardiologist.  This time, we met with one of the other 4 fetal cardiologists at the hospital.  Her name was Dr. Pinto.  We were very impressed with her.  The results of the test were good...they didn't find anything else wrong.  I have to tell you, after a few of these appointments, I have started to feel some real anxiety about what they are going to find and what news they are going to tell us.  If they couldn't tell us that things are looking better and that some of the issues had gone away, I was just fine knowing that I didn't have to process some other complication to this already very complicated situation.  First anxiety issue over come.

Although we did not find anything new, I felt it was really good for us to get another cardiologists perspective on things.  The first cardiologist we have been seeing (Dr. Su) is absolutely wonderful, but I always felt he was being a little too optimistic.  We left the last appointment with him with real hope that we might not have to deal with surgery right away.  After our visit with Dr. Pinto, we are preparing for surgery.  There are just too many variables that have to go our way to avoid surgery.  While this may seem like a downside, I am actually very grateful for the realistic perspective and I will work much harder in the future to make sure I know exactly what they are thinking so I can prepare properly.  Just give me the facts so I know!  I am learning very quickly how to ask questions and understand as much as possible.

Another thing I want to say here is how grateful I am for the medical staff and team that will be working on our baby.  Like I said, there are 4 fetal cardiologists, however, there are over 25 pediatric cardiologists at Primary Children's!  Not to mention all the nurses, staff, and others who spend their whole life working with children with heart issues.  I feel so blessed that the Lord has put us in a position to be close to these specialists.  Just one of the many blessings we have seen throughout this whole thing! 
Wednesday, October 10, 2012

Current DIagnosis

I know I already posted today, but I wanted to write down what the findings were at our last appointments, even though it has been over a month since those happened.  We have another cardiology appointment on Friday and I want to make sure I remember where we were at before that.

1) AV-Canal Defect:  This is still the case.  However, because of the under-developed Right Ventricle, we probably won't be doing surgery for this.

2) Under-developed Right Ventricle:  This was the big find at the last appointment.  The right ventricle, which is the one that pumps blood from the heart to the lungs, is not going to be strong.  Because of this, little man will goes through a series of surgeries to bypass the ventricle completely and divert the blood directly into the lungs.  Normally, this is done with three different surgeries, but it is looking like we may be able to skip the first one and make the second one his first surgery.  This would be done when he is 4-6 months old.  This is really exciting news because the first surgery would normally be done pretty quickly, which makes some of his developmental milestone difficult to reach.  The longer we can wait for surgery, the better.

3) Missing Main Pulmonary Artery:  Honestly, this in one that I don't understand completely and I am hoping to after this next appointment.  From what I can understand, the pulmonary artery takes the blood from the heart to the lungs. With our little guy, it looks like the aorta (which takes blood from the heart to the rest of the body) actually has an artery coming off of it that looks like it goes to the lungs.  Obviously, if blood is not getting to the lungs, this is a VERY serious thing.  It will be one of the very first things they check to make sure there is blood flow to the lungs.

4) The 4 Pulmonary Veins:  When the blood comes back to the heart from the lungs, it does so through 4 veins (called the pulmonary veins).  In our little man, it looks like they are all there, but the veins are longer and taking a "weird" route back to the heart.  This can be a problem for several reasons, including a) more space for blockage and kinking.  b) underdevelopment, which decreases blood flow.  I know there are more, but I can't remember right now.

5) Heterotaxy:  This is the issue of organs being backwards and/or on the wrong side of the body.  From what we know now, little man's heart is flipped (so the heart is pointing to the wrong side of the body...the left side is on the right and the right side is on the left).  Also, we know that his stomach is on the wrong side.  These two things can be indicators that other organs in the body could be mixed up. Some of the common ones they have talked with us about are a) missing or multiple spleens and b) issues with the intestines.  The spleen plays a key role in children in the development of their immune system.  While adults don't really need them, children who are born without one can suffer from very low immunity.  The intestines can have issues like being twisted, kinked, and knotted.  They will do a test before anything is fed to little man to make sure everything with the intestines is alright.

Needless to say, there are a LOT of issues...and most likely, I forgot something.  Hopefully, I will continue to improve my understanding at this next appointment this week. :)

What to expect?

Well, today I am 31 weeks pregnant and I am sitting in my living room while my son takes his nap.  I am caught up on my house work and I have worked on my business a little.  I find myself puttering around looking for things to do.  So, I am just thinking and pondering, which can be a little bit scary when you are in my position.

Our next cardiology appointment is this week.  Once again, I am anxious to get it done.  Two different strands of thoughts run through my head: 1) This is going to be so awesome because we are going to learn so much more and be able to prepare better.  We will be taking a tour of Primary Children's and the University hospital, so we will have a visual of things.  Also, we will be meeting with Kim (the care coordinator) who will be able to answer a lot of the questions we have been trying to figure out.  2) What new surprises are they going to find this time that we will need to prepare for?  Last time, it was the right ventricle that was not growing.  While this wasn't as hard to deal with as the first appointment, it still changed our whole game plan and everything we had tried to plan before went out the window.  Is that going to happen again?  Will it be good news or bad news?  Am I emotionally prepared for whatever comes?

As I sit here and ponder some more, I can't help but think about the life my new little boy is going to have.  Will he be able to do all the things he wants to?  I watch my older son run around the park, go down the slides, jump up and down...will the next be able to do those things?  Will my husband and I know how best to help him? On top of all of that, how will my older son be affected by all of this?

I have to admit, I don't usually let these questions linger for too long.  Why?  Because I don't have the answers and it just makes things hard.  What do I try to focus on?  The fact that my Heavenly Father is in charge.  In reality, can any of us really know what to expect in our life? No.  But our Heavenly Father does and He knows what we need to become the person we were meant to become.  I have already seen this.  Heavenly Father is molding me and my family into better people.  We are seeing a whole new world and having experiences we never would have any other way.  I can only imagine that this will continue once this little man comes around.

Yes, the waiting game is hard.  Yes, not knowing what is to come is hard, too.  But I am so grateful that I know of my Heavenly Father and I constantly pray that He will give us the strength to come through whatever we need. 


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Joshua Kent Ipson was born December 1, 2012 with a very complicated combination of congenital heart defects. After 2 1/2 months of fighting for his life, he passed away on February 13, 2013. We invite you to share our experiences as we grieve his loss, rejoice in God's plan, & keep Joshua's message of hope alive.
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