Friday, December 21, 2012

What's in a name?

I have wanted to type a little about Joshua's name and how we ended up choosing it.  Actually, the name Joshua was one that Tim and I talked about long before we even had Logan.  You know, those conversations you have when you are thinking about the future and just having a good time.  We knew that our first son's middle name would be Timothy, after Dad, and it was just too convenient that both our fathers' names were Kent, so we decided that would be the middle name of our second son.  Honestly, at the time I was pregnant with Logan, I liked the name Joshua better, but Logan sounded better with Timothy, so that is what we used first.

As I look back now, I think the Lord was intervening.  Logan's name fits him so perfectly and I know it was meant to be his name.  The same with Joshua.

After we found out about Joshua's condition, I struggled with whether Joshua was the right name for him.  Suddenly, the meaning became much more important to me.  I wanted something that would reflect the fighter in him.  I knew he was going to need to be a fighter to get through everything he would need to go through and I wanted a name that would reflect that.  Up until the day he was born, I was still unsure if Joshua really was the name for my special son.  However, I could not find something that fit, so I went with it.

That first day after Joshua arrived, my mother in law made a very interesting observation that told me the Lord was with us the whole time when choosing this name.  She commented on how appropriate it was that we would use the name of the prophet that the Lord spoke these words to: "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."  Even in his short little life, we have seen that the Lord has never left little Joshua.  He is constantly there, helping him and strengthening him and us. 

Also, I have come to understand that the meaning of the name Joshua fits right into this theme.  The name "Joshua" means "God rescues" or "Jehovah is Salvation."  Our little son is a fighter, but he is made strong because he has his Heavenly Father on his side.  Our entire family has felt the strengthening power of the Lord through everything and I know He will continue to be there.  Joshua's name will be a constant reminder of our Savior's love for us, even during the hardest of times...no...especially during those times. 
Thursday, December 20, 2012

Cardiology and pediatrician appointments

This week, we had our first cardiology appointment since leaving the hospital. It was basically a follow up to see how things were going with Joshua and also to hear what the Stanford team had to say about the possible surgery.

We started out the appointment getting Joshua a chest x-ray.  Dr. Su (our cardiologist) used it to make sure there was no change in Joshua's heart size and to make sure there was no fluid building up.  Everything looked great.

Other good news was the oxygen.  Since Joshua seems to do pretty well on room air for the most part, he really doesn't need to be on it all the time (hurray!).  Basically, we watch his coloring and keep him on the monitor to watch his stats.  If we notice the stats going down, we can put the oxygen back on.  It is just nice that we are not so tethered down by the tubing all the time!!

The main thing we talked about with Dr. Su was what the team at Stanford had to say about Joshua's possible surgery.  In the short, they were very confident in their ability to complete this first surgery and have it be successful...VERY confident.  This was a relief to me since the cardiologists at Primary's seemed so unsure about it.  However, the surgeons at Stanford are world known for this type of surgery.  There are three things that they would do for this surgery:

1) Unifocalization of the collaterals and Pulmonary Artery:  This means they would take all the collaterals (the "veins" basically doing alot of the work the pulmonary artery should be doing) and the very weak pulmonary artery and putting them together.  This would lower the pressure in the lungs.

2) Create a connection between the ventricle and the pulmonary artery.   One thing they are going to try and accomplish with this is strengthening the existing pulmonary artery.  By pumping more blood through it, the hope is that the tissue will strengthen.  This would be important if the collaterals ever started to shrink.

3) Finally, they would fix the total anomalous venous return.  Right now, Joshua's blood coming back from the lungs to the heart is taking a very round about way.  The surgeons would create a shorter pathway.

We are still trying to decide if surgery is the right way to go.  We still need lots of prayers in our behalf for that.  I am struggling with figuring out whether my feelings are Heavenly Father or if they are just me being an over-protective mother.  It is difficult to think about putting Joshua through surgery when he seems to be doing so well.  It is hard to think about how much he would have to go through if we went that route.  However, it is really hard to think about him getting worse and knowing there was something we could have done if we had acted sooner.  It is a difficult decision.

Anyway, we also had Joshua's 2 week well-child check with our pediatrician.  I can't tell you how wonderful our pediatrician is!  I feel so blessed because he has worked with lots of children with heart conditions and really understood the basics of what we are dealing with.  I was excited when I didn't need to explain exactly what all the diagnosis were...he already knew the implications of everything!  He is also wanting to follow him closely to be sure he is gaining the weight he needs to.  Joshua has not gained any weight since leaving the hospital, so we have adjusted his feedings (increase calories) and we will be going in for a weight check each week for the next month.  Other than the feedings and weigh issues, Joshua looks great!  Again, I am so excited to have a pediatrician I can trust!!

To close things up today, check out this cute picture I got of our little man!! Smiles already!


Sunday, December 16, 2012

All the tubes an such!

First off, tomorrow we have a cardiology appointment.  We are hoping to hear news from the Stanford team in regards to their opinions on the surgeries.  We are also hoping they tell us that Joshua does not need his oxygen...breathing room air is the goal!!

I am feeling a little anxiety over this appointment.  Hopefully, it is not too emotionally draining...

In the mean time, I wanted to document the different stuff that our little Joshua needs now that we are home. This is the equipment we have been using the last week! All of it has been provided by a home health company.  I have to tell you, I never thought I would need a home health company in my life...but I am grateful they are around!

Feeding tube pump.  Because little Joshua is still having a hard time finishing his meals by mouth, he still needs to take about half the milk by feeding tube.  This is the pump we put it in. 

Oxygen tank.  Little Joshua is on a little "whiff" of oxygen right now (For those of you familiar with oxygen dosage, he is on .06 L...sometimes .03 L) This tank sits in our bedroom...away from Logan :)
The oxygen tank stays in our bedroom permanently and Joshua is connected to it by this tubing...it is about 50 ft. long.  Having him on a "tether" can be tricky at times, but we stay in the living room most of the time, so it is not too bad.



Because of Joshua's special eating needs, I have been pumping milk from day one.  We tried nursing in the hospital a couple times, but it gets tricky knowing if he is getting enough, so I find it easier to just pump.  However, I have never had my dish drain look quite like this before.  We have since added 3 more bottles to that mix. Lots of dishes...

Oxygen saturation monitor.  This is how we know his oxygen saturation levels.  He is connected to this little machine on his foot.  The top number is the O2 saturation (we want it between 75-85% saturation).  The bottom number tells us his heart rate. 


Here is what little Joshua looks like with his tubes.  The orange one going into his nose is his feeding tube.  The clear one is the oxygen tube.  He is such a little trooper dealing with them!  Just to let you know, he does NOT like that oxygen tube up his nose, but he deals with it like a champ! 

Thursday, December 13, 2012

Improvements and pictures!!

Well, I thought I would give a quick update on how little Joshua is doing.  He continues to improve with his eating skills.  Right now, our goal is to have him eating 68cc (a little over 2 oz) of milk at each feeding (every 3-4 hours).  Currently, he is averaging about 35 cc by mouth, and then the rest has to take through his feeding tube.  The reason he is struggling so much is because he actually gets too tired to keep sucking.  The doctors say this is extremely normal for "heart babies." All we can do right now is continue to have him practice.

Today we also had a visit from the early intervention program, Kids Who Count.  This program is designed to help with early childhood education and make sure kids are reaching their milestones and that they will be ready to go to preschool by age three. The doctors at Primary Children's highly recommended us getting into this program to be sure Joshua is reaching his milestone, especially with his feedings.  We will be getting consistent visits from a Occupational Therapist, who will work with Joshua on his feedings and also work with his other skills, and a nurse, who will watch from the medical side. 

Finally, I thought it was time to have a few pictures on this blog!  Here is our journey over the last two weeks in pictures!!
Getting ready to deliver!  Instead of the planned induction on the 4th, I went into labor on Saturday the 1st!  After waking up with contractions that morning, little Joshua was born at 10:02pm.

We were not expecting to be able to hold him right away, but just an hour after he was born, the nurse in the NICU bent a few rules and let us hold him before he got moved over to Primary's.  It was a precious moment :)

All his little tubes, IV's, and EKG leads.

Dad holding him for the first time!

Even though Primary Children's is just next door and connected to University Hospital with a walkway, the Life Flight team was still called in to transport our little man over.  He had quite the ride over, don't you think?

This is one of my favorite pictures.  This was taken the first time I got to visit him in the Cardiac ICU over at Primary Children's. 

Once we found out about our difficult decision of whether or not to proceed with surgery or not, we have been calling on our Heavenly Father a lot.  We decided to go to the temple on night and had our parents come with us.  It was a wonderful experience and seeing the lights on Temple Square was a nice little perk :)

We decided to bless little Joshua in the hospital since both sets of our parents were in town and we were not planning on taking him to church any time soon.  I didn't know the spirit could be so strong in such a small hospital room.  Tim did a wonderful job and gave a beautiful blessing.

The crowd who came to the blessing.

Heading home!  On Sunday, December 8, after a week and one day in the hospital, we got to go home! 

It did not take long to settle into home life.  Logan has been an awesome older brother and LOVES holding his little brother!

He is also a big help when it comes to giving Joshua his bottle and helping clean out the feeding tube pump.  We LOVE being home!

Tuesday, December 11, 2012

Welcome home!

Wow...it feels so good to be home from the hospital!  We feel so blessed that our stay was so short this time around.  We appreciate all the prayers and thoughts that came our way during that time and can still feel them on a daily basis.

Joshua is doing great.  They did send us home with oxygen, which we were hoping to avoid.  Joshua's oxygen saturation levels were actually pretty good on room air...most of the time.  Every once in a while, however, they would drop into the low 60's (our goal is to have them between 75 and 85%).  Because of that, the cardiologist felt more comfortable having him on a very low dose of oxygen all the time.  For those of you who are familiar with oxygen dosage, he is on a mere .03 L...basically as low as you can be.  It is so low that the doctors were suprised that Joshua's body could even tell a difference!  We are hoping that when we go to our cardiologist appointment next week that we can take the oxygen off :)  Cross your fingers!! (Joshua does NOT like that thing up his nose...and who would??!)

Joshua also has a feeding tube.  This is because eating for these little "heart babies"  is extremely tiring and Joshua simply wears out before he can get all the nutrients he needs.  So, we feed him the first part of his milk with a bottle by mouth and whatever he can't finish, we put through the feeding tube.  Each feeding is 68 cc (30 cc=1 oz, so he gets just over 2 oz) of breast milk, which we fortify with a little bit of formula to up the calorie content.  Right now, he is averaging about 38 cc's by mouth, which is much better than the 10-20 he was doing the last few days at the hospital.  The speech therapist at the hospital (who works with these babies on their feeding skills), compared these kids learning to eat like us preparing to run a marathon.  They simply need to keep practicing and training and eventually, they will have the strength and endurance to do a whole feed.  He is definitely getting stronger every day, so we hope the feeding tube will be gone soon as well.

Now, I have had a few people ask about Logan.  He is such a great older brother.  He is very good at getting Joshua's diapers and wipes, throwing away diapers, helping hold the bottle during feedings, and he LOVES to hold him.  So far, I have not noticed any harsh feelings towards the baby.  I hope this keeps up once Tim goes back to work, since right now, one of us can be on Logan duty and one of us on Joshua duty.  Logan did awesome while we were at the hospital, but the last two days we were there, we started to notice him really missing Tim and me.  Whenever we saw him, he would not want to leave our sides and it got difficult to say good bye when the time came.  The first night we were back from the hospital, he was happier than we had seen him in a few days.  He pulled out all his toys, talked to whoever would listen, and just had a bounce in his step!  He was just so excited to be home.  He is such a good boy and I feel so blessed that he has handled things as well as he has.

We have a cardiologist appointment next week, like I said.  We will continue to monitor Joshua.  We still have to make a decision about whether or not to proceed with surgery, but we still have time for that.  We are waiting to hear back from a team of specialists from Stanford University, who specialize in one of the surgeries he will need.  Once we hear back from them, we hope to make the decision after that.  Please keep us in your prayers, especially when it comes to that choice.  It is not a clear answer and we are relying heavily on our Father in Heaven to help us know which path is right for our family and little Joshua.

Thanks again for all the love and support you have all given.  We will do our best to give updates on a regular basis.  We love you all!!
Friday, December 7, 2012

Update and our big decision

Sorry for the long wait on the update.  The last few days have been very emotional and the last thing me or Tim really wanted to do was write about it.  However, I really want it written down so we can remember it all.

The last thing we talked about was getting his CATH procedure done.  This was done on Tuesday. This procedure is when they take a catheter tube and put it through a large vein in his leg.  They run it all the way up to his heart where they release a dye and they can see where the blood flows.  They can also measure pressures in different parts of the heart and vessels surrounding it.  This information was the last piece of the puzzle the doctors needed to figure out the best way to move forward.

On Wednesday, Joshua was moved out of the CICU and up to the floor.  This has been nice, since they are not as strict with visitors and we have a little more room to breath.  The only reason we are still in the hospital now are feeding issues.  We are working with him on that.  He needs to be taking about 65cc (I think it is about 2 oz?) of breast milk at each feeding.  Right now, he can handle about 10-20 cc (about 1/3 of an oz) by mouth and then another 35-40 by feeding tube.  We will work more with him over the next few days and hopefully get home soon.

Now, for the really hard update....once the doctors got all the pieces to the very complex puzzle that is our son's anatomy, we anticipated them coming to us and telling us what they thought was the best way to proceed...then we would simply tell them that we agree and move forward with that plan.  What we did NOT anticipate was having to make a choice, a very difficult choice: To operate or not to operate.

There are several issues with Joshua's heart, and all combined, make the surgeries very high risk and very complicated.  The first surgery would most likely be at Stanford if we chose that route.  The surgeon at Stanford is the best in the world for the procedure that needs to be done.  He's done the most, but not as complex as our little guys.  He's only operated on about 14 kids in the last 25 years with what our son has--6 of which are still alive.  There isn't much information on how to treat this the best.  And this is just the first of many surgeries he would need. On the other hand, if we simply felt him alone, there is a possibility that he would live a relatively long life, but not necessarily.  He could live 2, 5, 10, 20, maybe 40 years...we just don't have any idea. What makes it even more difficult is that half the cardiologist say not to operate, the others are saying it's the best option.  The vote is very split and ultimately, it comes to what we decide.

We have been relying heavily on our Heavenly Father to help us make this extremely difficult choice.  We went through a session of the temple this evening and Tim and I felt some very strong promptings, but we still plan to get as much information as possible.  In the mean time, we are soliciting the prayers and faith of all our friends and family at this time.  We are going through a lot of turmoil as we try to make the best decision for Joshua and for our family. 

Now, for tomorrow, Joshua gets another test done.  This test will tell us if his stomach is on the wrong side and if he has mal-rotation.  Mal-rotation (i'm not positive on the spelling) is when the intestines are not rotated correctly, thus a kink in the intestines becomes much more likely. (I think of a garden hose when thinking of this concept).  If there is malrotation, we would have to consider a surgery to fix that as well, depending on the severity of it.   

The doctors are great here and we feel very supported from all sides--family, friends, coworkers, medical staff, and of course, the Lord.  Again, please keep little Joshua and our family in your prayers.  Thanks for everything!!
Monday, December 3, 2012

He is here!

Saturday 8 AM: Stephanie woke up and felt her first strong contraction.  With Logan, her water broke and they were able to get her an epideral before she felt serious contractions.  Such was not the case on Saturday.  I went to work at worked from 8-1:30 PM.  After getting off of work, I called Stephanie.  She said she was laying down, unable to move due to contractions.  They were occuring every 15 minutes or so.

After getting home, I started to pack the car and finish packing our bags.  We had plans to meet the siblings to go to festival of trees around 4:30.  4:30 came and we were still in Spanish Fork, not in Sandy--where the Festival of Trees was.  We finally started toward Salt Lake.  All the while, Stephanie still had contractions every so often.  Stephanie ended up calling University Hospital Labor and Delivery and asked questions on when she should come in.  She then tracked her contractions for the next hour.

Excited for the Festival of Trees, I convinced Stephanie to go in and see some trees.  After meeting up with family, it was about 2 minutes of viewing trees when we left the event and started our way to the hospital.  We arrived at 7:15 PM with Stephanie ready for that epidural.  7:45 we were admitted to the hospital and moved to a temporary delivery room.  Stephanie was dialated to a 4.  @7:18: Contraction; @7:21: Contraction; @7:26 Contraction...I think you get the picture.  I've never seen Stephanie in so much pain--it was hard to watch.  I wanted to take the pain upon myself when I saw it.  Unfortunately, I couldn't.  Luckily, the epidural was given @9:05.  At 9:45, she was measured again and she was complete.  Right about then, the nurses started to panic.  (In my mind, I thought we still had a few hours--boy was I wrong!)  We were then rushed into an Operating Room that was connected with the ICU.  Upon entering, I helped the doctors clear a spot for Stephanie's bed and a route to the window that led to the NICU.  At 10:02 PM, Joshua Kent Ipson was born.  Within 10 seconds, he was handed through the window and started to be stablized.  A kind nurse took our camera to capture a few photos for us.  I tried to look through the window, but Joshua was surrounded by 4-5 doctors, allowing me to only see a foot or hand here or there.

Soon, Stephanie was moved back into the 'temporary delivery room' where we were before the OR.  After about 15 minutes there, we were moved to a recovery room.  We then were able to visit Joshua in the NICU for a little bit, in which we also were able to hold him for the first time.  Absolutely a precious moment!  This was unexpected but absolutely amazing!  After 15 minutes, we were asked to leave as another baby was being brought in and they needed the area cleared.  We went back to Stephanie's room and waited for Life Flight to arrive.  Around 1 AM, Life Flight came with Joshua on their stretcher.  After a few pictures (can be seen on Facebook), I left with Life Flight to take him to Primary Children's Medical Center.  We walked over using the bridge that connects the two hospitals and arrived at the Cardiac ICU. 

Fifteen minutes later, (2:00 AM) one of the cardiologist started Joshua's first test: an echocardiogram.  I then went back to Stephanie's room at the University Hospital to get some rest.  We later found out the Echo took around 4.5 hours.  I thought it was only 2.5 hours, but apparently Joshua's heart condition was more complex and very unique.  Some of the diagnosis are as follows: 1) Dextracardia--Position of the heart is on the right side of the chest, not on the left side; 2) Heterotaxy--the heart is basically flipped.  He also has two right sides; 3) Main pulmonary atresia--the main pulmonary artery is not found.  The pulmonary artery is the main artery that carries blood from the heart to the lungs.  4) Hypoplasia of the right ventricle--underdeveloped right ventricle 5) Lungs appear to be supplied by arterial collaterals with no MPA segment noted--Lungs are getting blood, but they aren't sure where from.  They are suspecting arterial collaterals are delivering the blood.  6) Bi-lateral superior vena cavae without bridging vein 7) 3 Pulmonary veins drain into an upper vertical vein which dump into the right atrium--pulmonary veins are veins that take blood from the lungs to the heart.  Typically there are four and they should dump into the left atrium.

In addition to the 7 items mentioned above, there are a few other complications which we won't go into at this time, however, the 7 are the major issues we are looking at. 

Today, Joshua had an abdominal ultrasound in which they looked at his anatomy and specifically, if he had a spleen.  I asked the nurse this evening and she said she didn't think they found a spleen.  We have not heard the official results of the ultrasound, but from the sounds of it, he doesn't have a spleen--which is the immune system for infants.

Stephanie has officially been discharged from the University Hospital and she seems to be recovering really well.

Tomorrow morning at 9:30, he has a Cardiac CATH test scheduled.  This is where they will put a tube with a camera into a vessel in his leg.  From there, they go up the vessel to the heart and then release a dye.  They measure the pressure in the veins and watch the blood flow.  This will give them the missing puzzle piece they are looking for--How the lungs are receiving blood.  (Since the MPA [main pulmonary artery] is missing, and his oxidation % is staying around the 90's, they are slightly puzzled how the blood is getting there)  After this test, they will then meet together on Wednesday morning.  (They being ANYONE that is SOMEBODY--aka All cardiologists, all surgeons, all etc)  They will come up with their game plan on how to proceed and when the first surgery will occur.  We pray for the best and that the doctors will be led to the best decision for our little guy. 

We appreciate all the prayers, messages, and love you have all shared with us.  We have felt power from on high and know that the Lord is watching over us and our little Joshua.
Friday, November 16, 2012

Anticipation

So, I made an observation of myself when I was in college.  Right before a semester started, I would organize all my books and such to make sure I had it all together.  One thing I liked to do was go over my class syllabi and find out what I would be doing over the next semester.  I would note every test, every project, every quiz, every assignment...and I would find it all very overwhelming.  Sometimes, I would find myself asking, "How in the world will I ever get all of this done?  There is no physical way I can do it all!!"

Then, the semester would start.  Day by day, week by week, the assignments would get completed, the tests would get taken, the projects would get done.  I would find myself at the end of the semester and I would look back and be amazing at what you can do when you take it one step at a time.

As I come to the last few weeks of my pregnancy (um...make that two and a half, for those of you counting), I find myself, once again, in that panic mode of pre-semester college days.  How in the world am I ever going to be able to do this?  How will I be able to watch my child go through all that he is going to have to go through?  How will I take care of my first boy?  How will I possibly understand all the medical terms I am going to have to learn? How can I emotionally handle it all?

While it is true that the time we will be dealing with this is not just a 4-month semester...but really a lifetime of care for this little one...I find comfort in knowing that I will only have to take it one day at a time.  I know that some days I will have to deal with more than another day.  The first few weeks and months and even the first year or two, will probably be harder than the once proceeding those.  However, I will be able to take it one day at a time.  How wonderful a thought that is.

Now...can we just make it happen yet?  I would really like to stop thinking and start doing (I think...)

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. 

Tuesday, September 4, 2012

Next round of appointments

So, we have our next appointments with the specialists coming up this week and next.  I have been fortunate to have lots going on this month to keep my mind off of things...as much as I can.  However, as the next round of appointments loom, I can't help but start to feel some anxiety.  Last time we met with the cardiologist, we were expecting to get lots of answers to questions...instead, we got more bad news and another round of waiting games.  I am trying to prep myself for the emotions that are sure to come, but I don't know how.

The only thing that keeps me calm is my Heavenly Father and knowing I have an amazing husband who will be going through it all with me.  I have such a peace in my heart knowing that my Heavenly Father is in charge...whatever happens is his will and is what is meant to be.  Even though this fact doesn't make going through this easy, it does make it easier.  I can't imagine how difficult it would be if I had to ponder why this was happening or what we did to deserve this.  We are going though this because it is what Heavenly Father has planned for us...and he truly has our best interest at heart.

Over the past month, I have made it a priority to work on my spiritual growth.  I know that the near future will test everything and I want to be as strong as possible.  I feel closer to my God then I ever have before and I know he is going to lift us through the difficult times.  I pray I will grow the way He wants me to and that He will be there this week as we go to our appointments. 
Monday, August 20, 2012

Welcome to Holland

The first few days after finding out about our little guy's heart problems, I went through a lot of different emotions.  One thing that really struck me was a feeling of loss...which confused me because I couldn't think what it was I was grieving the loss of.  Then, one day, I was thinking about getting out some of Logan's old baby clothes and getting them ready...I realized I didn't know what kind of clothes to get out.  If my baby was going to be in the hospital for a month, would regular onesies work?  I suddenly broke into tears again as I realized our experience with this baby would be nothing like a normal baby experience.  That is what I was mourning...the loss of that normal experience.  I probably won't be bringing baby home with me from the hospital when I leave.  I probably won't be able to nurse him within the first few hours he is here.  I probably won't be able to have him in my hospital room the first night.  Things will be different...and that has been a tough one for me to swallow.

After our first cardiology appointment, our doctor handed us a folder full of helpful information...support groups, lists of people we may want to talk to, etc.  In that folder, this poem was included.  As I read the words, I was so thrilled to find that someone had figured out how to explain my feelings so perfectly!  This is what it feels like...and why I have been struggling with mourning a loss.  I know I will love my baby more than anything, but I am glad I have a few months to be sad that things won't be what I was expecting.

Welcome to Holland
by: Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Wednesday, August 8, 2012

Cardiology Appointment tomorrow

Tomorrow is our first appointment with a cardiologist.  We are expecting to get a lot of answers to how our life will be for the first little while after baby comes. 

I am sort of having mixed emotions tonight about tomorrow.  One one hand, I am excited to get my questions answered and know enough to start making the necessary plans.  On the other hand, I am feeling overwhelmed.  I guess I will just be glad to have it over with so we can move on to the next part.  Waiting really is the hardest.
Sunday, August 5, 2012

An Emotional Roller Coaster

It is hard to put into words what I have been feeling the last week and a half or so.  On July 25, 2012, we were expecting the fun half-way-point pregnancy ultrasound that everyone gets.  We were going to find out the gender and start getting even more excited about the new addition to our family.  Although it was very fun to find out he is a boy and to see him moving around, we also found out that our little guy has some pretty serious heart problems.

That first 24 hours went by with a lot of tears.  I think both of us were in shock.  We have a few friends that have dealt with children with heart problems and we knew, to some extent, what that can mean.  It was an experience we never expected to happen to our little family.  I remember walking out to the car with Tim after the ultrasound and both of us just cried.  After a few minutes, Tim looked at me and asked, "What do we do now?"  I shook my head and said, "I guess we just go home."  It seemed so crazy to think we could just get back to normal life after hearing this news.

Probably the hardest thing to do was calling our mothers.  Somehow, saying the words to those we loved made it more real...and more difficult.  Fortunately, our mothers were wonderful enough to call each of our siblings and tell them for us.  It was so much easier for them to just know then to have to tell them.  However, once they knew, I think both Tim and I started to feel the prayers and love from each one of them.

This was probably the first time I have ever experienced "feeling the prayers" of others, at least to this extent.  Literally over night, I went from so sad and almost hopeless, to finding peace and the courage to simply stand up and do what we needed to to.  Just the next day, I was ready to see the specialists and start the process of learning everything we could about baby's heart condition so we could make the necessary plans to help him.   I have been at such peace ever since that day.  How wonderful it has been to realize that the Lord really does not give us more than we can handle and helps us through our more difficult times.

I'm not going to lie, though.  I have still had moments (and days) where tears and grief are at the surface.  I have tried to think about how others could relate to my feelings and the only thing I can seem to relate what I have been feeling is the grief cycle.  I started out in denial...days where I would wake up and think that the first ultrasound was just a dream.   Everything is fine and none of that terrible news really happened.  Then, there are moments of just sadness.  Sadness for the baby inside and what he is going to have to deal with and also sadness at the loss of the normal experience of a healthy baby.  There have also been moments of asking why, but I am grateful for the knowledge of the gospel so I don't need to dwell on this fact.  Mostly, I am grateful that Heavenly Father has helped me come to the acceptance stage quickly.  I know that it has been his spirit of peace that has helped me to this point.

Although I know that journey with this little guy will probably not be the easiest, I am so grateful for this opportunity.  I know that Heavenly Father does not send these spirits to just anyone to take care of.  What a wonderful and terrifying experience it will be.  I also know that my emotions have more of a roller coaster to ride, I know that it will be much easier with my Heavenly Father on my side.

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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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