May 6, 2016; 36 weeks

My little Rosebud,

We met again with the cardiologist yesterday. This was the first visit with him since he found the fluid around your organs. He seemed surprised to hear that the hydrops had resolved since his last visit. Not that I’m surprised at his surprise. I think that miracle shocked all of us. He looked at your heart again for a while and seemed mostly concerned at this point over two main problems with your heart. He still is concerned about the pulmonary valve not opening and closing properly, so talked about ballooning that as one of the first things they work on when you are born. The other being the left atrium. He is seeing a membrane in the left atrium that seems to be causing problems with flow between the left atrium and the pulmonary veins.

He also decided we would induce at 39 weeks, and let me know we would need to schedule that next week with the OB. You are going to be here at the end of the month little girl!!

We asked Dr. Chang a few questions about what to expect with your delivery. We were curious if we would need to deliver in an operating room. He said that we wouldn’t need to unless I was having a cesarean and he said I would be able to deliver vaginally as long as my doctors didn’t say there was a reason that I would need a cesarean, which they haven’t. We asked if we would get to hold you after you were born or if you would need to be operated on immediately. He thinks that you may need resuscitating after you are born, so we probably won’t get to see you long after you’re born. They will likely take you right away to stabilize and then operate. I asked if that meant he thought your chances were good. We had discussed with Dr. Lee previously the option of holding you after you were born if you weren’t going to make it so that we could spend what time you had holding you. Dr. Chang said he wasn’t sure. After seeing the hydrops at the last visit he didn’t think what he was seeing was survivable, but that you pulled through that. So he isn’t sure what to expect. Which I hope is an optimistic view. I’m keeping optimistic with it at least. We have already seen such amazing miracles occur!

I can’t wait to see what the OB says next week, and can’t believe we are so close to you making your appearance. So many prayers have been said for you, and you have so many people here rooting for you and waiting to meet your little spirit!

April 12, 2016; 33 weeks

Rose,

This appointment brought with it miracles! We had an ultrasound and met again with Dr Lee. The ultrasound technician asked if hydrops goes away, and Dr Lee said that it usually doesn't go away. But they don't see any more fluid around your heart or stomach or liver. There is a very small amount around one of your lungs, but that is all they see now! I really was incredulous at how far you have come in the last couple weeks! You are a fighter!

We will continue to go back weekly and will see the cardiologist again May 5th. We will have made it to 36 weeks by then, but if you are still on the upside we will probably let you keep growing!

It has truly been amazing to see the turnaround! Dr Lee said to keep praying because it is obviously working!

April 5, 2016; 32 weeks

Little Rose,

We finally had an appointment that wasn’t worse news than the previous one! We had an ultrasound and Dr. Lee came and met with us afterward. He let us know that the hydrops that had been noticed the week before was not as bad as he initially thought, nor as bad as he has seen in other babies with heart failure. He also thought that in comparison with last week the fluid around your heart actually looked like it was less than the previous week. You are a trooper! You moved a ton for the ultrasound tech, and have continued to move a lot.

Dr. Lee got to talk with Dr. Chang after our last appointment and they discussed more of the game plan for your delivery. Dr. Chang would prefer you be at least 2500 grams and you are currently 1800. We will get to check on you again in a week, and measure your weight again in two weeks. At that point we will only be two weeks from week 36. I can’t believe how quickly things are going, and how soon we will see your sweet face!

March 29, 2016, 31 weeks

We had another appointment Tuesday, which started out fairly normal. Dr. Chang looked at your heart to see if there were new developments. Most of what he told us was the same information we had gotten previously, with one new thing he was seeing. He let up know you have hydrops, meaning you have fluid building up around some of your organs. I asked what this meant for you long term and he said it was just a side effect of what was going on with your heart. He also started to discuss with us the possibility of delivering you early. He didn’t think we should deliver before 36 weeks since the earlier you are born the more problems are likely to arise. We start dealing with normal problems associated with premature birth, and that those on top of the problems you are already dealing with would likely be too much for your body to deal with. He told us he would like to see us again at 34 weeks.

The office was very busy while we were there! Dr. Chang is only in the office biweekly, so they usually are pretty booked while we are there, but it was extra busy this visit. Because Dr. Chang was so busy, he didn’t get to touch base with Dr. Lee before Dr. Lee came to meet with us. When finally we were able to meet with Dr. Lee he expressed a few concerns. He told us that fluid build-up around your organs means that you are in heart failure, and that in his experience most babies with hydrops don’t last very long. He told us we are between a rock and a hard place. That we either try to deliver before 36 weeks and run the risk of you not surviving because you are under developed, or we wait for you to be more developed and run the risk of you not surviving because your heart fails. He left that decision up to us and so far we want you to continue to grow and develop. Dr. Lee wants us to begin coming in weekly to keep a closer eye on you. He also told me to pay closer attention to your movements. He said the last thing he wants is for me to go into labor in the middle of the night and go to the hospital and end up with a doctor who doesn’t know the situation, and who may do more harm than help. So we are going to keep a closer eye and hopefully avoid that situation. He also said that, for lack of a better term, we are playing chicken. That we may get to a point where we haven’t made it to 36 weeks, but that you might be declining rapidly and we decide to deliver earlier in hopes of choosing the best option for your survival.

It was a scary appointment. And not a timeline I thought we would be dealing with. That being said, I’m glad that we have had plenty of appointments to prepare us for this situation. I can’t imagine having had this all sprung upon us at once. We have had time to slowly process everything.

On a happier note, Tuesday evening I was sitting and had dad put his hand on my lower belly because I was having a consistent movement that was different than usual, and I was nervous about what it was. Dad said it was very faint and that because of the consistency of it, I was probably feeling my own pulse in an artery. It want away shortly after I stood up, and I thought maybe Dad was right. Wednesday night I was sitting eating dinner when I started getting the same feeling again but in a different area. This time I realized, and laughed at myself for the previous night, that you probably had hiccups! That sure was fun to feel and recognize.

February 18, 2016; 25 weeks

Rose,

On February 18^th we had our next appointment with Dr. Chang. I was very excited for this appointment. I had been able to feel you start moving since our last appointment with him, and took this to be a good sign. I figured this meant you were getting bigger and stronger and doing well.

Dad and Grandma Giles came and picked me up from work again for this appointment.

When we saw the ultrasound technician she did some standard measurements to see how you were doing. You were almost 2 lbs! I couldn’t believe how big you are getting! She said that she wasn’t sure why Dr. Chang had put Heterotaxy in his notes at the last appointment, because heterotaxy generally means that your digestive organs are on the opposite side of where they should be, and that everything was currently in the correct positions. That gave me a good amount of hope. She took a lot of pictures for us! So many sweet pictures of your face. And I saw you yawn which was just the cutest thing I’ve ever seen!

Dr. Chang came in and started looking at your heart again. He kept asking for video clips of what we were looking at. He said he wanted to review them with some other surgeons. He drew us another picture, which I sure appreciate. I understand so much more when I can see what he is talking about. He said that your pulmonary veins, which they weren’t able to see last visit, were there. But that they did have a small hole in them. He said that there was something wrong with the right ventricle walls, causing that chamber to not pump correctly. It didn’t seem to be pumping so much as sloshing. But the concern Dr. Chang brought up that seemed most severe is that your pulmonary valve (which was bulbous before) was now double the size it should be. Which as your lungs are developing id going to cause it to press on your tracheal and bronchial. Grandma asked if these things looked like they could be corrected with surgery, Dr. Chang thought that the problems with your heart had a possibility of being correctable, but that if the pulmonary valve pressed on your tracheal and bronchial while they were developing, that the damage from that wouldn’t be able to be repaired. He showed more concern that you may not make it full term than at your last appointment.

He let us know he wanted to see us again in a month to see how things were looking. As Dr. Chang left the ultrasound technician said she needed to go get Dr. Lee and have him talk to us, and that she also needed to let him know that my amniotic fluid was measuring high at this appointment. Which could be caused by a majority of things; your heart problem, and chromosome abnormality, gestational diabetes. She wasn’t sure, just needed to document it.

Dr. Lee came in and talked to us shortly after she left. He told me he didn’t want me to feel like I wasn’t being met with often enough. That the reason my next appointment was so far off was that even if they were able to see things worsening, that you are small enough still that they wouldn’t be able to do anything for you. At your next appointment I will be 31 weeks, and they should be able to have a better game plan at that point.

This was a tougher appointment than I expected it would be. Dr. Chang didn’t seem as optimistic about your situation as I had hoped. I hadn’t been expecting a miracle, but I was hoping that at least things wouldn’t be worse.

I’m grateful for the continued support and prayers of everyone who loves us. I can’t imagine not having the peace and comfort that I’ve had. I’m so thankful for the knowledge I have of the gospel. Knowing that no matter what happens, Heavenly Father loves you even more than I do. And He has a plan for you. Whether or not that plan is the same as mine. As tough as this situation is, I’m glad to have that knowledge, even when it is hard to see with that perspective.

February 10, 2016; 24 weeks

Rose,

February 10^th I had an appointment to go meet with Dr. Eilers who would be my new OB now that I will be delivering at Emmanuel instead of in Tualatin. It was just a normal checkup appointment, but I had anxiety about going to a new office alone since I didn’t know where I was going. Liz Freeman came with me to ease my anxiety, and because I didn’t want to make Dad leave work early for such a short appointment.

Dr. Eilers had a great manner about him. I really felt comfortable with him right away and am excited about having him be our doctor. He let me know that since my side of the pregnancy is going so normal and smooth, that I am welcome to go back to my OB Dr. Kelly in Tualatin until I’m 36 weeks. That way I won’t have to travel so far, and Dr. Eilers will be able to keep an eye on things at that point where he believes complications would arise if there are going to be any.

He also said that he would keep in touch with Dr. Chang as I continue my appointments with him. And that he would call Emmanuel and have them reach out to me to schedule a tour of the NICU there to put some of my anxieties at ease.

January 21, 2016; 21 weeks

Rose,

We went back to NW Perinatal on January 21, 2016 to meet with Dr. Peter Chang, your cardiologist. I had been looking forward to this appointment and hoping for more answers. I had a lot more anxiety about this appointment than I did the appointment previous. The appointment went about the same as the last one. Dr. Chang did have a little more information for us and drew us a picture of what your little heart looks like right now. There were 4 main things that he gave us names of for what he thought was wrong:

1.       Atrio Ventricular Cushion Defect

2.       Ventricular Septal Defects

3.       Interruption of Inferior Vena Cava

4.       Heterotaxy (though he couldn’t tell yet if it’s Polysplemia or Asplemia

He also let us know that he wasn’t able to see the veins that connect the heart to the lungs. But that at this stage in your development, it isn’t uncommon to not be able to see them yet. He pointed out that your pulmonary valve looked a little bulbous, and that the walls of your heart look too thick in some places. He also gave us an informational book for congenital heart defects called “It’s my heart” put out by the Children’s Heart Foundation. He let us know that despite all the problems, you seem to be developing fine. That as your lungs continue to develop and they begin to use more blood things may become more difficult for you. But that only time would tell.

Dr. Chang said he wanted to continue to keep an eye on your heart as you progressed so that we could have a better idea of how best to help you as you continue to grow. As he left Dr. Tomlinson came in to answer any other questions we might have. I was curious if there was anything I needed to be doing differently to help you more. He said that my pregnancy, other than your heart, is very normal; that I should just continue to eat well, exercise, and take my vitamins. I also asked if your condition would change my options for how I would deliver. He responded that it was early to tell, but that at this stage, you were too small for an operation to likely be successful, and that your best hope was to let you get as big as possible so your chances of a successful operation would be higher. That likely I would be able to go into labor naturally so that you got as big as you could. I was happy to hear this.

I left the office that day with a lot of concern, but also I felt very hopeful for your well being. Dad, Grandma Fredrickson, and Grandma Giles were all with us that day. It was so helpful to have extra people there for support and to ask questions that I couldn’t come up with.