Wednesday, December 5, 2012

Kai's Appointment Update

Thank you so much for all of the prayers! We feel very loved and blessed!  We talked to the older kids tonight about what an amazing support system we have!  I know that it brought some comfort to them, just knowing how many people told us they were praying and left sweet encouraging "notes".  Knowing that so many people are storming the throne on our behalf gives us an amazing peace! God, the creator of the universe, hears each and every little prayer. How awesome is that!??!

Our appointment went very smooth today.  We saw Dr. Shah and we really, really liked him!  We've heard great things about him from people who have had experience with him personally.

Just so you know, today was ALL focused on Kai's heart. He has many other "issues", but those were not addressed today. We had about an hour and a half of straight sono on his heart... thanks to his wiggly self!  He was not behaving and made it a little difficult on the doctors to get the info they needed, but in the end, the doctors felt like they had a good idea on what we are dealing with.  Here are the details that we know from the appointment today.

Kai has 2 major issues that the doctors are concerned with.  He has a few other small heart defects, that don't seem to effect how his heart functions, so as for now, we are assuming that the smaller defects will not require surgery. This is good news!

One of the issues (the lesser of the two) is a large VSD... which is a large hole in between the bottom two chambers of his heart. This will require surgery, but not immediately. Good news!

The other issue has to do with his aortic valve. Kai's aortic valve is very abnormal and doesn't function properly, which causes the blood to flow in different directions. It is also very narrow and leaky.  Kai would more than likely require open-heart surgery, but the good news is, that it shouldn't need to take place immediately after birth!  Originally, we were told that he would need to be rushed off to surgery, which for obvious reasons, would be very risky.  Even though this defect is very serious, we are thankful that it's not as bad as it originally seemed to be. (I won't go into the details of all that! It's enough to confuse anyone!)  With this heart defect, he is at a higher risk for going into heart failure in utero.  If he does go into heart failure in utero, sadly, there is nothing that can be done.  He is going to be closely monitored and they will be checking up on his heart again in a couple weeks.

Also, after talking with the doctor today, he highly recommended that we deliver in Peoria.  He said with Kai's condition, he believes it would be best if the heart team was there at his birth. Baby's can always throw a curve ball, and if he was to need surgery right away, we can't imagine sending him off to Peoria in a helicopter. We would both want to be there with him.  This obviously adds some unexpected changes to our plan, but we think it will be best for Kai.  We fully intend on having all of the kids there with us and I think with our families being so willing to help, we can come up with a plan! We will be going to the hospital to visit and meet with some of the staff in a couple weeks. Please pray for us as we make these arrangements.

Once again, thanks so much for all of your prayers and concern. We will do our best to keep you updated on a more regular basis!  Our next appointment is on the 14th and they will be checking on his growth and my fluid. Please feel free to ask any questions, any time! Love to you all!

Tuesday, December 4, 2012

Update and Prayer Requests...

We've had a couple appointments and I figure I am past due on updating, so here's some things we know.

We had an echocardiogram done on Kai a few weeks ago. It was not a real detailed echo, because I was only about 24 weeks along at the time. The doctor did see some quite complex issues and seemed very concerned.  He had a hard time giving us a definite diagnosis because Kai was so wiggly! 

On that note, this little boy moves 24-7!  I've read that a lot of T18 babies are not very active, but God sure blessed us with a boy that moves and grooves all day (and night) long! I love every second of it! I can tell he's grown in the past couple weeks because the feeling of his movements have changed. =)

At our last couple sonograms, Kai has been growing bigger! Yay! Most T18 babies have very low birth weight, so they have been checking on him regularly and he seems to be keeping up!  I am definitely doing my part on feeding him well!

In other news,  I have been diagnosed with a condition called polyhydramnios.  This basically means that I have too much amniotic fluid.  We were told it is caused by 1of 3 things... #1. Kai hasn't properly developed the muscles to "swallow", #2. Kai's brain is not sending him the signal to swallow, or #3. Kai has a blockage in the esophagus area, which is not allowing him to swallow.  For those that don't know, the baby usually swallows amniotic fluid on a regular basis and then urinates what is not needed. That process has been interrupted and my body continues to produce the fluid. It shouldn't cause any major issues with the baby, but they do plan on monitoring him (and me) regularly through sonograms and non-stress tests.  In the meantime, this mama may be extremely uncomfortable!  At my last appointment, I measured full term, even though I had 2 1/2 months left to go!  Needless to say, bending over to pick something up is NOT my favorite thing right now! Thank you Lord for a hubby and kiddos that are willing to help... most of the time without even being asked!  It's a good thing that I have that God-given talent of picking stuff up with my toes... that has sure been coming in handy lately! 

I would like to ask for some specific prayers please!

#1.  Our appointment with the pediatric cardiology specialist from Peoria is tomorrow...well, I guess today, Wednesday.  Please pray for wisdom as the doctor diagnoses Kai's heart condition.  Please pray for us as we are in this appointment. It's always nice to see our sweet boy on that screen, but it's always hard to hear the list of issues that he has.  Just pray that Dave and I (and our family) will continue to trust in God's plan, no matter what the outcome.

#2.  Please pray for us as we make some very difficult decisions over the next few weeks.  Decisions that we never would've dreamed that we would have to make for our unborn child.  Please pray that God will give us the wisdom and understanding to make decisions that we are confident with.

#3. Also, please pray for physical strength for me.  With all of my pregnancies, I have felt great, right up to the day that I delivered.  However, this diagnosis of polyhydramnios is obviously going to be something that will hinder me physically. I am a do-it-yourselfer, and I am not good at asking for help.  My husband has been wonderful about making me stop and sit down and take breaks, even when I don't want to! I am so thankful for him! But, unfortunately, he's not always around, and I usually end up kicking myself for doing too much at the end of the day. I am just a "little" stubborn and hard-headed sometimes! It's taking a while to sink in, but this past week, I have really tried to take it a little easier. Bed rest is just NOT an option when I have 8 other people to take care of!

#4.  Please just pray for strength for us. Not just Dave and I, but our kids and family as well. Every single day, usually multiple times a day, I beg God for strength to get through this trial and He delivers!

We are so thankful for friends and family that pray for us! We can tell you are all just lifting us up in prayer!  Your notes of encouragement and messages that let us know that you are praying mean so much! God is so good... all the time, God is good!

Psalm 33:20-22
We put our hope in the Lord. He is our help and our shield. In him our hearts rejoice, for we trust in his holy name. Let your unfailing love surround us, Lord, for our hope is in you alone.