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!)

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!

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

Good news and bad news

Warning! Long post! :)

We (Jon, my mom and I) started our trip into Seattle on Monday night so that we wouldn't have to get up at 3:30am to be there on time. We were hugely blessed by one of my mom's friends who opened up their basement/mini apartment to us at the last minute!

Waiting for the first ultrasound (heart)

After an interesting nights sleep (mom and I attempted to sleep in the same bed but her snoring kept me awake and my tossing and turning woke her up!) we made our way to Seattle Children's Hospital where we ate breakfast.

Our first appointment was at 8:30am for the fetal echo cardiogram. I am not super familiar with just the heart so I was able to see a few things but over all just watched and waited.

Once that exam was done we were moved to another room for our regular ultrasound check up. The woman doing the ultrasound was wonderful and explained what she was looking at or for and what she was doing. I was encouraged by what I saw in a few places and couldn't wait for the official information!

In the second ultrasound room

After she was done we waited a while to see if either of the doctors (OB or Cardiologist) wanted to take a look themselves with the equipment and after a bit Dr Bhat (the cardiologist) came in and took a quick look.

As we waited in the meeting room for the big meeting, mom and I worked on our perspective knitting projects for Matthew. I was able to finish his jacket! It still needs buttons but all the knitting is done and the strings are woven in, yay!

Dr Jolly (OB), Dr Bhat (fetal cardio) and a nurse came in all together and sat down to talk about the findings. Dr Jolly started out by giving a quick run over of changes and new information while the nurse and mom took notes.

Let's start with the new information they saw:

It looks like his kidneys may be fused in what is called horseshoe kidneys. They appear to be functioning normally (the bladder is full and the amniotic fluid amount is normal) but are attached at the top.

His belly size seems to be a week smaller than the rest of his body.

They were unable to see something called CSP (Cavum Septum Pellucidum) which is a normal space in the brain. They said it may be that the cysts are getting in the way of seeing it or it might not be there. I don't remember why it being missing would be a bad thing, but it would be so we are hoping that they are simply not able to see it.

He has fluid around his right lung (more details with the heart info).

Isn't he so sweet?

Previously there but changed:

They told us that his chin is now within the range of normal (it had appeared small previously). His Choroid Plexus Cysts have gone from being 2.4x2.5 cm down to 1.4x2 cm! So not only have they gone down in size but his head has grown so they are a lot smaller in comparison to space availability! He also now has appropriate sized genitalia (previously seemed small).

Updates and growth info:

Matthew is looking like he is now weighing 1 pound 8 ounces, which means he has grown almost a pound in 6 weeks! That means that he is still about a week behind in size (from our later due date) but that seems to be consistent (and consistency seems good to me!). His amniotic fluid is normal (important).

The sweater is ready for buttons!

And for the heart (previously not very clear info known): The good news is that he does not appear to have an AV canal and all of his pathways into and out of the heart seem to be working fine! He does have an ASD (normal in everyone but closes at birth, which doesn't always happen in babies with extra chromosomes) and a VSD. The VSD is there and is close to the center of the heart but should be okay (fixable with surgery)as long as nothing changes. His greater vessels are not transposed but are something called DORV (double outlet right ventricle) which means that instead of one from the left side and one from the right side (both near the center) they are both leaning to the right side. They also appear to be fused near the heart (abnormal but probably not a big deal). Also, the left side does appear to be smaller but is still working okay.

The bad news is that his heart seems to be not pumping with as much enthusiasm as it should and there is some possible back flow in one of his greater vessels and the valve on it seems to be thickened (could mean restricted flow into it).

What this means:

Over all he is looking good but looking at the heart, his visible defects do not account for the decreased energy of the pumping effort.  They said that most likely that is caused simply by him having Trisomy 18 (it effects how things work over all). That is possibly a warning sign that his heart may not be able to keep up. With the fluid build up around his right lung they informed us that most likely this is caused by the heart function being low though there are a few less likely causes. They are concerned that if the fluid continues to build up and goes around the other lung or the heart the function of them will be compromised. If it builds up too much around the lungs his lungs will not be able to grow and will always be small. With increased fluid where it shouldn't be, he is also at risk for something called Hydrops which would compromise him.

So over all he is looking good but there are a few warning signs that may mean an increased chance of him being stillborn.

After we tried to absorb all of this we began asking the questions we had come up with over the weeks. As we talked we let them know that even though they have recommended no fetal monitoring during labor and no C-section we would like to have full monitoring and have a C-section performed if he shows that it is needed to keep him alive. They took this super well and Dr Jolly throughout the meeting included the possibility when talking about what things may look like after the birth.

We took him to the zoo after our appointments :)

As far as we can see, right after the birth the NICU team is going to be able to look him over and tell us what they can do for him. They will be able to tell us if nothing is going to help, if he needs oxygen, if he can stay in the UW NICU after being stabilized or if he needs to be transported to the Children's NICU, etc.

We have been told that they will not do any action (to intervene or not to intervene) without us giving consent and will make sure that we know all of his options each step of the way so that we can make the decisions.

Over all we are super happy with our team. They are not simply writing him off and are super willing to work with us no matter which path we take. We are truly grateful that God has provided such willing and wonderful people to work with us!

Our next appointment is scheduled for 8/17 to do an ultrasound check up, that with the OB and meet the Neonatologists! 2 weeks after that we are going to have another fetal echo cardiogram done to see if anything they saw yesterday was a one time thing or if things are changing for better or worse.

Cherishing the time

We have done two photo shoots with my sister, Rachel and here are the pictures!

As we go through this pregnancy we are hoping to take lots of pictures so that no matter what happens we will be able to remember our time with him.

Here is session #2

A friend told as about someone in a similar situation who went places and did things with their baby while he/she was still in the womb (and this friend gave us a gift to help us do it). We really like that idea and have started doing that (though my mom has the pictures from our recent adventures still). We are hoping to visit a few places that we enjoy and take lots of pictures. Hopefully I will put those in here and there with my blog posts.

Next week is our next appointment and I can't wait to see how he is doing!

Moments of weakness

People have been asking how I am doing. I am so thankful to have so many caring people around us!

We got a 4D ultrasound on Monday!

Most of the time I am doing great. Once we/I got through the initial shock and grief, life became normal again but with a new future. Most of the time (truly the majority of the time) I am emotionally stable and life goes on the same as it did before but busier.

Then there are days like yesterday. I was fine through the day (a very busy day) but as I headed to see Ali (the midwife) I realized that I had not felt Matthew move all day. I began to be afraid that he was gone. I prayed for grace to get through until she could use the Doppler to hear his heartbeat and that today would not be his last day. Thankfully once she put the Doppler on she got the heartbeat almost right away and he woke up and started to kick a bunch. She was even able to see his kicking on my belly! He continued to kick a lot the rest of the evening.

Close to bedtime Jon and I were sitting on the floor talking and I told him that Ali confirmed for me that for now (and probably a year or two) no midwifes will take VBAC patients. This is because each time there is a transfer, the hospital medical staff write them up and they have to be investigated and could lose their license (even though the family signed a paper saying they knew the risks). This decision totally makes sense, I would not want them to lose their job!

As I said this all of my fears of a C-section came back again. This is my first baby (who has a decent chance of needing a C-section) and I want to have lots of kids and home births! I am afraid of what that will mean for me! There is a good chance that if Matthew makes it to delivery alive he won't make it through labor and delivery without intervention. I love Matthew and want what is best for him but I am so afraid of the consequences of a C-section!

I began to cry and Jon came over and held me while I poured out all my fears and pain on him. I have the same questions everyone else has: Why me? Why does God ask for my biggest dreams? Why couldn't he have been perfect? Why couldn't it have been easy? Why couldn't we have miscarried? (Please understand that this is because at this point we only have a 50% chance of him living to birth and then only 10% chance of living to a year, it would have been easier to lose him earlier) Why can't the answers be easy? Why couldn't we have found out after the birth so we don't have to make these decisions? Why now?

All of these questions come from a weak and fearful heart. I am not perfect and can only rest in the knowledge that God has planned this, has made Matthew this way for a reason and has planned the best future for us and for his glory. Most of the time I can feel God's peace and grace around me but there are some times when I am weak and worn out that I lose track of God's truths and I begin to borrow on tomorrow's troubles.

As we go through this journey I am sure that these questions and fears will try to take hold again and I am sure that Jon has his own so please pray for us. Pray for trust in His will and for grace for each day. Pray for clarity during decision making. Please also pray for all the other families going through this. Some of them don't have Christ and are lost, I can't imagine how hard that must be.

God's grace is sufficient and he will provide. He always has and always will. I remember that most of the time but pray for me for the times when I don't.

If you are going through this, know that you are not alone, there are many that have come before you and many that will come after. God can and will carry you through and He has a plan. Pray for His wisdom.

High risk OB and genetic counselor

On June 22nd we met with another high risk OB and a genetic counselor and had the option of doing an amniocentesis but chose to cancel that because the test came back positive.

Our OB this time was Dr Delaney, a very nice woman who was 8 months pregnant herself! She went over our findings again and mentioned that we can do a fetal echo cardiogram if we wanted to. We said we did then started asking our many many questions. We spent about an hour talking and got all of our questions addressed or answered and made a plan for the future. We are going to be seeing them about every 4 weeks to do an ultrasound and to meet with the OB to make sure everything is going as it should. We talked about birthing possibilities and how that might look as well as what would happen if Matthew were to pass away before birth. Our next appointments will be on July 21st and we will do the fetal echo, a regular ultrasound, meet with a cardiologist and meet with Dr Jolly again.

Our meeting with the geneticist went really well, she explained the types of Trisomies as well as why they would want to know what kind he has (partial is sometimes because of a parent's genes) and she gave us a paper that included some websites to look at. We had already seen those websites but it was sweet of her to look into it for us (and others). At this point if Matthew were to pass away before birth I don't think we will find out exactly what kind he has, we only see that as helpful for his care during life and are trusting God for the genetic make up of our future children.

Before heading home we met with a family that we had been told about by someone in our church. They have a 9 month old daughter with Trisomy 18 (their blog is here: http://merry-musings.blogspot.com). It was so sweet to be able to see her and hold her and to talk with others of similar beliefs about what they have gone through. We were very encouraged by talking to them and can't wait to read their whole story.