Saturday, August 22, 2015

Follow up ultrasound

Before you start reading, I have to apologize about the long posts! There is so much information from each appointment!

On August 17th Jon and I headed up to Seattle for another ultrasound and to meet with Dr Jolly and a Neonatologist.

When we arrived in Seattle we were over an hour early so we did a little walking around before heading to the appointment. When we got there we found out that our appointments had started not at 11am (like we thought) but 10am! I had gotten a text reminder a few days before the appointment that hadn't included the ultrasound! We had even arrived in Seattle in time for the appointment but didn't want to be so early. They managed to squeeze us in anyway because of a cancellation.

We went to our local fair on Thursday as a memory maker with Matthew
The technician was not our favorite, she was nice, but she was too quick and didn't tell us all of what she was looking at so we didn't catch all of what we were seeing.

After the ultra sound we were shown into a room to wait for the doctor. At this point we didn't know who we were going to see but I was pretty sure it wasn't going to be Dr Jolly because of what we knew of her schedule. But to our joy it was her! She has switched days with someone else and that made it possible for us to see her. She also came in with the neonatologist that we were going to see, they decided to come in together (that was nice).

The neonatologist's name is Dr Batra and we really liked him! Right off the bat he said that he had read through all of the notes from all of our visits and that he felt like he knew us already. I was super impressed that he would take the time to read everything. He verbalized where he thought we were for making decisions once Matthew was born and he was right on.

At that point he walked us through what everything would look like at the birth and after with Matthew and what it they would normally do. He started out with worst case scenario then moved to the more positive. As we went along we asked questions and he asked questions. We are really happy with what we learned from him and how he listened to us and explained everything. He also didn't push us to make immediate decisions and even encouraged us to think about it before deciding anything.

They had camels there this year
At the beginning of the meeting Dr Jolly told us the ultrasound findings, then after talking with Dr Batra we went over them a little more. She told us that the cysts in his brain have maintained size since last time which means that with his head growth they are a lot smaller in comparison, they once again could not see the CSP, there is extra fluid in the cisterna magna (new), it does still look like he probably has horseshoe kidneys, his chin is a little on the small side still, the fluid around his right lung seems to be gone, and his right hand appears clenched.

She told us that not being able to see the CSP and with some extra fluid in the cisterna magna there are probably other brain abnormalities going on as is common with babies with Trisomy 18. She also said that his right hand now appears to be clenched which can develop as the pregnancy progresses and that is why we haven't seen it before. We were so happy to hear that the fluid around his lung seems to be gone, that is such a good development!

He is continuing to grow at a normal rate but a week behind his adjusted due date. He now weighs 2 pounds 8 ounces! His head is about a week ahead of his other measurements and his abdomen is a couple weeks behind but she said that she isn't too concerned about it.

Over all we are really happy with what we heard, it was mostly good news and we really liked what Dr Batra had to say.

For those of you that don't know about our spontaneous trip to Seattle on the 11th, I had been having some small signs that could have meant that I was heading towards (but not in) preterm labor and after consulting with a nurse we decided to have an internal exam done. We met with the midwife and she did the exam. She said that my cervix was about 50% effaced, externally 1 cm dilated (but internally closed) and my cervix was in a central location. With these findings we decided to head to Seattle for some observation. They did a 1 hour nonstress test and also did an exam. They said that my cervix had stayed the same in the hours between exams and that since I wasn't having any contractions that we could go home. They told us to come back if I had 6 contractions an hour for 3 hours and not to worry about it before then.

It was good to get that information, though it did feel a little bit like a waste of time. They said that it was good to come in and get checked just in case. Now we know what to look for.

At the end of our appointment with Dr Jolly on the 17th she said that she could check my cervix for me if I would like. I decided to go ahead with that so that I could relax if it had stayed the same. She said that it is the same or a little better and that it will fluctuate over time. That was such a relief for me! I have felt a lot better about how things are going since learning that.

We now have most of our birth plan written out and have our go bags packed and ready to go just in case he decides to come early.
Just for fun we got a little temporary color added to my hair in one of the booths at the fair (they used chalk!)

Friday, August 14, 2015

God's provision

As we began to plan for Matthew's arrival we had thought about how we wanted to plan it but without the finances to live it. We were hoping (best case) to move to Seattle together around 39 weeks gestation and give Matthew 2 weeks to present himself. At that point we would induce.

Looking ahead we had only 1 week of vacation from Jon's work and no way to save up the money we would need for 2 or more weeks leave of absence (depending on Matthew). We knew approximately how much it would take to cover all of our bills here and for groceries there (we most likely have a free place to stay) but with Jon's wisdom teeth needing to come out, our car needing new parts and all of the trips to Seattle in the mean time there was no foreseeable way for it to work!

We began to pray for a way and God has provided it abundantly!

We have been given so many gifts! The gifts have come in the form of money, gift cards, prayer, hugs, etc. Some from family, some from friends, some from groups and some anonymously! In addition to that we have just found out that Jon got 2 weeks vacation time instead of the 1 that we thought!

We have been able to get Jon's wisdom teeth removed, purchase the car parts and have the finances or vacation time to stay 4 weeks in Seattle! I am crying with joy and awe as I write this. What a gracious God we have!

In our short marriage we have had many times of having to trust God to provide for us when we had no way that we could see it coming and each and every time he has given it to us one way or another. Sometimes ahead of time, sometimes at the last minute.

We praise God for his gracious gifts and for the people around us who love us so much!

Friday, August 7, 2015

Keeping Going

I am thankful today that our little one is still with us. Each day is another day we have had with him and we are trying to rejoice in each one. Our day to day lives have not changed that much but our mindset and future look so different now.

Each day we have to trust in God's goodness and plans for us. There are days (probably about once a week!) when I feel like it is too much, it is too hard but God always pulls me through and gives me peace.

I admit that I haven't been very good about spending time reading the bible and praying lately and that has (I believe) been part of why it has been so hard for me to work through this. My sweet husband became aware of this and encouraged me to spend more time in prayer and to make sure to read my bible. In the last week or so I have been trying to do that more and have felt so much more peaceful about everything. I still have to moments when it is hard but in between I am resting in God's grace and goodness.
Around the time of our last appointment in Seattle our midwife let us borrow her spare doppler to use when needed. That has been such a blessing! Even though I feel him move around, his movements are light and hearing his heartbeat is so reassuring!
Unfortunately in the last few weeks we have caught more and more that his heart will go into short segments of missing beats (e.g. 4 separate beats missed in 10). We were able to confirm with Ali that that was what we were hearing this Wednesday. We are not professionals so we do not know what this means for us but with it increasing in how often it happens and even how long it happens we are beginning to wonder if we are losing him slowly. I am grateful that he still moves around though has good days and bad days and good weeks and bad weeks as far as how much he moves (and reacts to external things). Feeling him move is something I will miss very much if he passes on.
Each day is a new day. A day to learn to trust God, to learn to give up the dreams that I had, for something unknown but better from Him. Sometimes it is hard and sometimes it is easy. A lot of the time I had no idea how much I wanted those dreams and I believe that God is using this time to teach me to let go of those tightly held dreams.
Our prayer requests right now are: Continued grace and strength for each day, that the fluid around his lung would become less and would not move to his other lung, that his heart would become stronger and stop missing beats,  that the cysts in his brain would continue to get smaller and that if God chooses for Matthew to pass away that we would be content with that. We also want to praise and thank God for the many gifts that we have received from those around us (among which were the pictures in this post) and for the love and support that everyone has shown. We are not through this yet but God has always provided what we have needed right when we have needed it.
Photos courtesy of Ordinary Joy Photography