Understanding

It has been a very full week for us. We went into our appointment on Wednesday with high hopes and careful thoughts about reality. We came out with something much different than we expected, causing much heartache and frustration.

Wednesday's ultrasound check-up
We were told that Jonathan's defects haven't changed, which didn't really surprise us. Our hearts had hoped to see something different, but we would continue to pray, no matter the outcome. We were able to ask questions and the Dr. showed us the different defects on the monitor. We were also given this picture:

The big balloon-like sac on his stomach is the omphalocele. It's growing as he's growing, and the Dr thinks that his liver is now inside the sac as well. He is measuring 1lb 6oz, about 3 weeks behind a baby his age.

We were prepared for this information, but what we weren't prepared to hear was that my cervix had started to shorten. I measured at 1.5 cm, when I should be at 3-4 cm. I'm also carrying excess fluid. This is mostly because Jonathan's body is not processing fluid like it should so I'm holding it instead. Also, the hard spots on my stomach we thought were Jonathan moving, are actually contractions. All these things made the Dr. concerned, as they point to preterm labor. She could not give us a time-frame as every pregnancy is different, but it caused her enough concern to schedule us with the pediatric geneticist on Friday before he would be out of the office for a few weeks.

Hearing the news about how my body is beginning the labor process was hard, but even harder than that was how the Dr. responded to our questions. She was very concerned about us seeking to understand how severe Jonathan's defects were. We believe she was afraid we were going to take every possible means to save his life, even if it meant putting my life at risk. The way I heard that, made it seem like Jonathan was no longer being considered as part of the equation.  This made me go into mama-bear mode and become quite defensive later as I spoke with Danny about options.

Thursday night
Danny and I had some serious discussions as we tried to come to terms with all the news. It was a night of missing the mark in our understanding of each other. I was coming from the side of protecting Jonathan and wanting to prolong his life. Danny was looking at it from a sense of our family as a whole, and wanting to spend time with Jonathan instead of having him taken away from us to have surgery. We both felt frustration as we grappled with how to be united when we felt so divided.

Friday
We set aside time to meet with a pastor from our church, knowing we needed to connect with each other before talking with the pediatric geneticist. It was a tremendous blessing to have a mediator to be able to hear each other, understand, and realize we wanted the same things. Ultimately, we both want as much time with our son as we can get. We also recognized we had a lot of unanswered questions when it came to the next steps of this pregnancy.

The Dr. we met with started off by saying that his job was to help us understand our options, and to be completely objective. He walked us through each of Jonathan's problems and what could be done for them. He then talked about the problems babies face who are born prematurely. Also, he explained to us how medicine has advanced in recent years to help premature babies survive. Finally, we talked about the combination of Jonathan having Trisomy 18 and being a premature baby. We discussed how his condition complicates the ability to do surgeries because of how small he could be at birth, and how his lungs might not be developed enough to undergo surgery.

He treated Jonathan as a child, having concern for his life, and left out his opinion. This was an answer to our prayers. On the car ride to the appointment, we had prayed for someone who would present objective information without providing their personal bias. We were so thankful for him walking us through the process, along with the fact that he brought up some questions we had never considered.

Outcome
Danny and I took time to discuss our options about Jonathan's birth, and what we would like to do once he's here. We want to spend as much time with him as we can, with as few tubes and machines as possible. If Jonathan reaches 4lbs, we will re-evaluate our thoughts about how to care for him, but at this point we are anticipating making him as comfortable as he can be for as long as we can have him.

We are at peace, and we are united in our decision. We have not given up on who God is and still believe completely in His ability, and desire, to heal our son. We needed to understand the coming process to make decisions with more wisdom and peace. We are thankful for what we're learning about each other, and the greatest understanding that God has not, and will not, change.

Personally, I have come to realize the great difference between talking about my faith, compared to talking about whom my faith lies in. My faith means nothing if it's not in Jesus, and I found myself talking more about my faith than about Jesus. I think I was becoming prideful in what I thought about God, what I know about Him according to His Word, instead of relying on Him. I am reminded that in the midst of believing full well that my God is the Great Healer and that I have the power of the Holy Spirit living inside of me, I also have full access to a Father who wants to comfort me as I deal with a situation that is bigger than my own shoulders.

We don't always understand why things happen on this earth, like why there are extra chromosomes. It's ok to not know, because we have a Father who loves us. Psalm 100:5 says that the Lord is good, and that His love endures forever. He always wants our best. In the midst of not understanding this situation we are in, we can rest in the knowledge that He is with us, giving us strength and courage to push on. Deuteronomy 31:6 says to be strong and courageous because the Lord goes with us, never leaving or forsaking us. We don't have to be afraid of what's to come.

What's next
I have not been put on bed-rest. My belly is like a water balloon - the more it expands the harder it is for my cervix to remain closed. Bed-rest wouldn't help this. I am working on being more careful around the house and not lifting things. This is very difficult, especially as we move across town next weekend, but worth the discipline.

26 weeks

I will be having an ultrasound every two weeks, the next one on September 3rd, and will only see the perinatologist from now on. We are watching for signs of labor, praying that my body holds on to Jonathan for as long as possible.

We have been so blessed by those who reached out this week, for walking this journey with us as it gets harder and more complicated. It has been beautiful to see how He laid us on your hearts during this rough time. Thank you for being the hands and feet of Jesus.