Tuesday, September 29, 2015


September 28 we got to have a full ultrasound again! This one is probably our last before he is born and it was so sweet to see it again.

Our little munchkin is still moving around and is still breech! He seems to love sitting in my pelvis with his feet up by his head. When they tried to get a good look at his hands for me they had trouble because his hands and feet were all right next to each other! He was also doing lots of breathing practice.

Looking at his measurements he is approximately 4lbs 4oz and is measuring quite small. His chest is 8 weeks behind, his belly is around 5-6 weeks behind and his femur and head look around 3-4 weeks behind. He is growing though! They would be concerned about how small his chest cavity is (his heart is big in comparison) except that his abdomen is small too. If only his chest was small they would be worried that he wouldn't have enough room to develop lung tissue.

The amniotic fluid measurement seems to be normal and at one point during the ultrasound he had his eyes open and we could see his eyes! It was kind of creepy :)

It looked like he was blowing us a kiss :)
The cysts in his brain appear to be really small, though they didn't measure them so we don't know if they have gotten smaller or if they appear smaller because his head is bigger. For his brain they were still unable to see the CSP and the ventricals are still dilated but that is nothing new, it just tells us that we are looking at other possible brain issues.

After the ultrasound we met with Dr Jolly again and let her know that we have now decided to do full code, full interventions. This means that they would do anything for him that they would for a normal child (oxygen, CPR, intubation, etc) but at the same time, we still want to follow Matthew's lead. For us this means that we are giving him every chance to fight for life, but if he doesn't want to fight then we will respond accordingly. She didn't even bat an eye. We love that about her! This is against her's and the neonatologist's recommendations but they are totally going with our lead on this without a fight. I think it helps that they have seen us working through this decision and that we are carefully considering the doctors' recommendations before deciding.

He even has tooth buds! They are the white below his nose.
We asked her if she could foresee any NICU doctors or any nurses refusing to do things like chest compressions and she said that no, she doesn't see that happening. They have been and will be told to follow what we want and that we have made these decisions carefully. We are really happy to hear that.

At this point we have an induction and a c-section scheduled for October 16th. What this means is that if I come in and his heart rate is great and he is in position then we will induce, but if either of those are not lined up we will do the c-section. She said (and I agree) that it would be easiest to schedule the c-section and cancel it than to try to schedule a last minute one. They are letting me have two (and possibly three!) support people with me in the OR! Right now that is going to be Jon and our birth photographer with possibly the doula (so that I can have someone with me when/if Matthew leaves the room with the other two). We are really glad that we will be able to have his first few minutes and hours photographed!

Our next few appointments are on the 5th and the 12th for regular check ins with the doctor to monitor blood pressure and whatnot and to make sure we have any questions answered or discussions talked through. After that there is only the induction/c-section! In some ways I hope I go into labor on my own the week of the induction so that I can know that we didn't bring him out to early but in some ways I hope he stays in there because it would be so easy to have everyone there already for the planned induction/c-section! I guess we will just have to wait and see what God and Matthew have in store for us :)

Friday, September 25, 2015

More Appoinments - Day 2

On Tuesday we had another Fetal Echo Cardiogram done. The cardiologist seemed to be very particular about what he wanted to see and kept sending the technicians back in for more footage! Probably a good thing in a doctor.

I am including a picture of what a normal fetal heart looks like (the labeled one) and what Matthew's looks like (the one with diagnoses written on the side).

He thought it would be best to start from scratch and tell us what he saw. Along with the previous findings (ASD, VSD, DORV, small left side, irregular beat, poor strength of beat) he said that the right side of Matthew's heart is too big and the left is now too small. Also, the Pulmonary artery's valve is small and the artery is narrow near the valve. He also said that the  Mitral Valve (between the upper and lower left chambers) is small and may not be functioning well.

What this means for Matthew is that the blood may not flow well into the Pulmonary artery, the left side of his heart may not work strongly enough and if after Matthew is born the left side is measuring this small there is nothing they can do for him. They are unable to make a small side bigger and a possible surgery on a normal child would be too complex for Matthew's weak heart to sustain.
It is like those "find the difference" pictures!

They said a normal left side measurement falls between -2 and +2 and that his right now is measuring -3.5. They said what they find after birth may be better because of difficulty measuring while in utero and/or it may improve by then but if after birth it is measuring worse than -2.5 they are unable to do anything to help it. Fixing the other heart problems won't fix that one.
He told us that before any medication is given we should wait to see how Matthew is doing for breathing and that if he is breathing well we can do the echo to see how his heart is doing. His recommendation (which we are going with at this point) is that if he is breathing but his oxygen is still low (not because of breathing) that we can do the echo within hours after birth to see if giving him prostaglandins to keep the "Patent Ductus Arterosus" (first picture, top right) open will help blood flow into the Pulmonary artery. Matthew will have an echo done within the first 24 hours no matter what, as long as he is stable.

Right now our biggest prayer requests for him are that his heart rate will increase to 110 or higher and that he will be head down, anterior (ideally so that he can be born vaginally), that after birth that he will breathe on his own and that the left side will be big enough to work with.

Please also pray for peace during this waiting time and that we would be okay with whatever God chooses to happen. Our induction date is set for October 16 provided he doesn't come on his own before then.
I am halfway done with Matthew's layette blanket! Only 12 more squares to make! I may decide to make it square instead though and only do 4 more :)

Wednesday, September 23, 2015

More Appointments - Day 1

This week we had three appointments scheduled, two on Monday and one on Tuesday. Because of this we asked some friends if we could stay with them for the night and they graciously hosted us!
His profile!

On Monday we first met with the Neonatologist. He was someone we hadn't met before and didn't really get anything new or helpful from him.

Next we met with Dr Jolly again and had a lovely session. We started out talking about him being breech or not (I am pretty sure he had been doing some flipping around) so she brought in the ultra sound machine. He is still (or once again) breech with his rear down and feet up. His heart rate was 95 bpm and his fluid amount is increased (from somewhere around 19 last week) to 23. She said that at 25 it is considered high. We asked her if she was concerned about his heart rate being so low and she said that because he was moving around and seems to be doing fine it is probably his current normal and not a sign that he is in distress or anything. We are going to do a full ultrasound next week to measure him and get more details.

That is his nose, cheeks, mouth and chin just to the right of center :)
Among our questions I asked if an external version (ECV) would be something we could do if he continues to be breech. She said that with his heart rate being so low they wouldn't be able to tell if the version was causing him distress so it would be inadvisable. She told us that knowing our wishes of having the best chance of getting him out alive, if his heart rate is this low when I go into labor or we want to do an induction she would recommend doing the c-section instead because they won't be able to interpret his heart rate to tell if he is in distress or getting oxygen deprived during labor.

We fully understand where she is coming from so at this point we are continuing our plans for a natural vaginal delivery but most likely (pretty much for sure) he will be delivered by c-section. The only way to not automatically do a c-section is if his heart rate is around 110 or higher and if he is head down and presenting well.

(Day 2 is the next post)

Wednesday, September 16, 2015

OB appointment

On Monday, September 14th, Jon and I went for a regular OB appointment.

Before I write about the appointment I want to do a little preface: during the 3-4 days before the appointment we had been hearing an unusual and extremely slow heart rate when using the doppler. While we were concerned about it we also know that there isn't really anything we can do at this point (if something is wrong) so we waited to talk to the OB about it until our scheduled appointment.

At our appointment we met with Dr Jolly again and began talking over our many questions (as usual!) that we had. We are so happy with her and with their readiness to work with us. They said that if we end up with a c-section that we can have our birth photographer with us! She also answered my questions about what to do if my water breaks. We also talked about Matthew's chances this early and how much of a difference a few weeks will make for his chances. She said that she isn't very sure but she is going to talk to the Neonatologists about that so that we can decide what to do should we find that he is compromised in the womb.
The latest growth photo from 2 1/2 weeks ago :)

We went over the birth plan we have written out and she had nothing negative to say about it and confirmed some of the points I had written. Since this is my first pregnancy I had no idea what to put in there but found a sample one that we adjusted until we were happy with it, I am so glad that she was too!

As we went along the subject of Matthew's heart beat came up and she said that we could do a little in office ultrasound to check up on him (measure fluid, see movement, confirm heart rate, etc). She brought in this little ultrasound machine and began working with it. Interestingly, using the ultrasound it was able to hear his heart beating as it has for a while (a specific arrhythmia) so she pulled the doppler off the wall to see what it would pick up and it picked up the same thing that our doppler did, a slow strange rhythm! She said that she isn't worried because the ultrasound is picking up his heart rate correctly and it is still a good speed! We are so relieved!

We were also able to see him open and close his left hand, open and close his mouth, and practice breathing! We were and are so encouraged to see that he is developing muscle tone and is learning to practice breathing, Jon and I are beginning to have hope that he will make it to the birth alive!

One last thing is that Dr Jolly recommended that we plan for him to be born around 39 weeks because the risk of stillbirth increases a lot after that point. For us that seems like a great plan because that would put him at 40 weeks for our original dates and 39 weeks for the adjusted date. We are now hoping to move to Seattle the weekend before that (just in case I go into labor on my own) then induce on the weekend nearest those dates (around the 16th or 17th). We are hoping to try all of the natural methods of induction before using pitocin :)

The only major down side to the appointment is that we learned that he is breech! Today (Wednesday) it feels like he still is, though he varies a lot in position (breech, diagonal, transverse). I am beginning some exercises to open my pelvis area to encourage his head to go there but if that doesn't do it I am hoping to get the midwife's help next week for more suggestions.

Please be praying that he moves head down and stays that way through birth and that his heart will be strong. Also pray that he will keep growing and will be as big as possible (the bigger he is the better his chances are).

Tuesday, September 15, 2015


Sorry it has been such a long wait! We had our most recent cardiology appointment on September 1st but I have spent 5 days out of the last two weeks with a fever and couldn't even get out of bed, let alone write a post :)

At this meeting we had an echo cardiogram again and also got to meet with the same cardiologist, Dr Bhat. The echo went smoothly and we loved the technician. She was super sweet and talked with us and made us feel like friends.

A friend hosted a small baby shower for Matthew and I!
Pretty much everything looks the same as the last one! There aren't any changes for the worse and the only new thing is that we have been hearing an irregular heart beat for about a month and they were able to explain that it appears that the normal "ASD" (whole between the upper two chambers of the heart) that everyone has appears to have a large flap (that would normally close it after birth) which seems to move enough to irritate the right or left sides and cause that side to contract too soon. For Matthew it is okay because his heart is realizing that it was too soon and telling that side to wait it's turn. This causes a quick heartbeat then an extra long wait for the next one so that the next one is in time with the rest of the heart.

She told us that as long as it is stopping the early ones we don't need to worry about it but that we can be on the watch for it to start doing all early beats for a long period of time. At that point I think he would need intervention of some sort.
The winners of the balloon diapering contest :)

Since that appointment (sometime last week) she called us personally to tell us that after reviewing the first and second echo she believes that the heart lung artery is having consistent back flow (we had known that) and that it is actually a good thing for the balance of Matthew's heart (I can't remember the reason though!). She told us that she would recommend that as soon as he is stabilized after birth that we start an IV through his umbilical stump to give him prostaglandins to keep the valve open to allow that flow. She said that by giving it right away it will begin benefiting him before we are able to tell if that is what is needed or not. She said the only side effect she is concerned about is that a small number of babies can have more lethargic breathing while on this medicine and that they will be on the watch for that to dial back how much he is getting if it effects him that way.
A few of the attendees

She said another possibility of why that is happening is that the vessel may be small farther down and if that is the case that would probably be his first heart procedure to find a way to reroute that blood back to the lungs again for better flow.

We are super excited by what she told us. Sometimes it seemed like she has been the least optimistic, more hesitant to have hope. Not in a bad way, just realistic I think. But with that phone call we really feel like she is coming on board with us about interventions since she is talking about starting medicines and even a possible procedure! We are super thankful for that!

Our next cardio appointment is this coming Tuesday, September 22nd.

A demonstration of mom's gift - a cocoon!
Opening gifts!
A sweet outfit, one of many! We are so blessed by what we were given.