New Perinatologist Office & Trip to the Hospital

Wednesday, November 26 I got a phone call at 8 am from the new perinatal group Dr. Sweeney had referred me to. They had finally gotten our referral and wanted me to come in immediately and to plan on being there all morning. So I quickly got ready and drove myself down to the office and checked in around 9. They took me back almost immediately for another ultrasound since they hadn't seen me before. They did a very thorough scan looking at every part of the baby as well as checking my amniotic fluid levels and Caden's weight. Fluid level was really good and Caden measured as weighing 4 lb. This is right in range of where he should be at this gestational age.

After the tech finished the scan, the perinatologist, Dr. Chyu, came in and did more ultrasound with me. She spent a long time going over everything she saw. The main things of interest she said were in regards to the diaphram and the heart. She thought that the left side of the heart looked normal and the right side looked large. When I asked her what that meant, she said it usually means there is an aortic coarctation, a narrowing of the aorta. But she wanted us to have yet another opinion on it and wanted another cardiologist in Sacramento to do an echo. Then she talked about the diaphragmatic hernia. She thought there was a possibility that there wasn't actually a hernia in the diaphragm, but maybe there was an eventration of the diaphragm. This is a disorder in which all or part of the diaphragmatic muscle is replaced by fibroelastic tissue. We don't know a lot about it beyond that. Dr. Chyu spent a lot of time with me in consultation regarding a plan of action for me which I appreciated very much. She said they would take over my care until what time we go to Stanford, if that is what we end up doing. She set up NST's for me and also checked my cervix. Still not dilating which is great, but because I'm completely effaced and having lots of contractions, she decided to send me over to Sutter Memorial to be monitored in labor and delivery for awhile. She anticipated her partner would review the situation and would probably send me home, maybe with some medication to slow or stop contractions.

So, a nurse from Dr. Chyu's office walked me over to labor and delivery at Memorial and they got me hooked up to a monitor. They continued to monitor me for a couple hours. Dr. Gilbert, Dr. Chyu's partner, came in and told me they were quite concerned about the number of contractions I was having especially given the status of my cervix, so they were admitting me. He said he anticipated me being here until Friday at least. But he didn't want to promise anything because there was a possibility that they might keep me longer than that. I wanted to cry because I wasn't prepared for that news. I had driven myself to the doctor's office in my car which has Kyler's car seat in it. So Greg & my mom had to get one of our neighbors to watch Kyler while they came down to the hospital. They brought me a bag of things I requested and then were able to pick up my car and go home.

All afternoon I was on a monitor so they could see how my contractions were doing. I was having some pretty strong ones with some minor pain. That was new to me because up until that point, the contractions were more of an annoyance than anything. They caused tightening but not really any pain. But there were definitely some painful ones yesterday. They ended up using three different medications to stop/slow contractions but even with that, they kept me on the monitor until after 8 pm. At that point, I had finally reached a point where it had been over 20 minutes since the last contraction. Then the rest of the night I had very few contractions, at least that I noticed.

I wasn't able to sleep because I didn't have a private room and my roommate was not exactly considerate. She talked very loudly and had the TV on until well after midnight. Just past midnight I asked my nurse if there were any private rooms available and she said no, but they would try to find a room to move me into. The lady next to me finally fell asleep watching TV sometime around 1:45 am. My nurse had asked her to turn it off just after midnight because it was late and I wasn't able to sleep with it on. But she said she couldn't go to sleep without the TV and I would just have to wait until she fell asleep and then I could turn it off. I thought that was a little rude, but what could I do. Finally after she fell asleep, I turned the TV off and a few minutes later (around 2:15) my nurse came in to move me. It was still a shared room, but there was currently no one else in it. I think I finally got some sleep around 2:30. But then, because of various medications I needed, they had to wake me up at 4, 6 and 8 in order for me to take those. So, not a lot of sleep for me last night! I'm exhausted!

After eating breakfast, I was feeling pretty good about not having had a lot of contractions. Then, Dr. Gilbert came in to check on me and said that they would put me on the monitor and if things looked good (5 or less contractions in an hour), they would discharge me today. They just had to give me my 2nd steroid shot before they could let me go. And, they would send home medication with me to continue to take to keep the contractions at bay. So, after an hour on the monitor, I only had 5 contractions, Dr. Gilbert said I could go home this afternoon. Right now I am sitting and waiting for the nurse to come with my discharge papers, remove my IV line and we can hit the road. Of course this means I have to be extra diligent with laying down and staying off my feet. I am not allowed to do anything for myself, essentially. Kind of a bummer, but it's worth it.

My mom will be with us through the end of next week and that will be great help for us. We have a couple doctors appointments next week which we will go to and in the meantime, I think we will be checking out all our housing options in Palo Alto so we can relocate over there around December 8 or so. We figure we are better safe than sorry and if we deliver at Stanford, all our bases will be covered in terms of Caden's care. They have all the necessary resources we need if we need them.

This roller coaster of a ride for us, but we know God is in control and he will take care of us. We just need to make sure that we do our part in ensuring Caden stays put for a few more weeks! Thank you all for your support and continued prayers. We are still in need of more of them, but we have seen evidence of the answers to all the prayers, so keep 'em coming!

Perinatologist & Cardiologist, Sacramento

Yesterday, November 25, Greg & I had two appointments. In the morning we had an ultrasound at the perinatologist office. After the ultrasound tech did the scan, we had a new perinatologist come in to talk with us and go over what he saw. Since he hadn't seen us before, he had reviewed the reports from previous ultrasounds and echos before coming in the room. We talked about what had been seen initially compared with what he could see as of today. He agreed the heart looked good: he couldn't see any VSD and he thought the valves looked okay. He also commented on the small amount of fluid around the heart (the radiologist at Stanford had noticed it as well) but didn't seem to think it was very much and probably didn't need to worry about it. And, the other thing he made mention of is that the heart appeared to be on a normal axis now. In the first ultrasounds, they all showed the heart tilted to the left, due to the diaphragmatic hernia. So this is a new development and very interesting.

In the afternoon we saw Dr. Van Gundy for another fetal echo. We had been waiting for this appointment ever since leaving Stanford last week because we wanted to know what Dr. Van Gundy would see or tell us. We didn't want to bias him in the echo, so we didn't say very much about our visit at Stanford until he was finished. But, he also said he couldn't see any VSD and the aortic valve looked normal (when he looked up the z-score, it was -1 which is within "normal" range). He was still mildly concerned about the mitral valve because it did appear to be slightly small, but not like it used to be. And, he felt that it would continue to grow just like the aortic valve has. He also said that the heart was on a normal axis and he did see the fluid around the heart. He didn't feel that the fluid was too much to be concerned about and that it was probably due to the diaphragmatic hernia closing off and creating more room in the chest cavity. He said he didn't know what we were doing to make these things happen but to keep doing it! Greg & I looked at each other and smiled because we plan on doing just that: praying!

Then we launched into the discussion of where to deliver... The ever-elusive answer to our question... He still seems to be most comfortable with us delivering at Stanford. However, he said if we were to deliver in Sacramento, he says it needs to be UC Davis and absolutely NOT Sutter Memorial. We feel he is an unbiased party because he has rights at all the facilities and can go wherever he chooses. In addition, he doesn't receive any stipend or money from any of the hospitals so he can be objective about it. We would have talked to him for much longer than we did, but he had other patients to see. As it was, he spent a long time talking to us and also told us to come at the end of one of his clinics so we could talk some more if we wanted to. We absolutely wanted to talk to him some more, so we scheduled to see him next Tuesday afternoon to discuss the situation further.

We felt our appointment with Dr. Van Gundy was very important and we were so glad we were able to meet with him and get his input. In the meantime, we're in a dilemma because Dr. Sweeney told me as of last Friday she was transferring my OB care to a new perinatologist group in Sacramento because the one we've been going to doesn't deliver at Sutter Memorial. However, the group we have been going to does deliver at UC Davis so that is an option to stay with them. But as of this morning our referral hadn't come through at the new perinatologist group and we were supposed to be receiving NST's through them. But, there isn't any point in changing groups if we don't need to. I tried to call Dr. Sweeney's office this afternoon to discuss it with her but she is on vacation until next Wednesday. So, in the meantime, I'm left without anybody for primary OB care or anyone set up to do my NST's. It's a little bit stressful, to say the least! Especially because we feel our time is running short and we might not have enough time to figure things out if I go into labor soon.

Please pray for us that my cervix does not start dilating and that Caden stays put for as long as possible! And, please pray that we are able to get some resolution about where to deliver. Just when we think we have an answer, we get more information and things change again.

Another OB Appointment - Dr. Sweeney

Today, November 21, I had a follow-up appointment with Dr. Sweeney. While I waited for her in the exam room, Kelly, my nurse practitioner, came in to visit with me. I called her yesterday to tell her about the good news we received at Stanford. She was so excited for us and she wanted to give me a hug and share in my joy. She also expressed her belief that we have experience a miracle. She felt the same way we did about the fact that several different doctors had done ultrasounds/echos and all of them had seen problems. So, it wasn't like one doctor made a mistake that big. Our explanation is God. It was so nice of her to come in and talk to me and share in my joy. She is such a truly wonderful person!

When Dr. Sweeney came in, we talked about what needed to happen to transfer my care to the doctors at Sutter Memorial. She said the perinatology group we've been going to don't actually deliver at Sutter Memorial, so she's going to refer us to a different group. And, she was going to try to have them get me in next week so we could get our care established with them right away. She said I would need to have my NST's done there as well. So there are lots of changes ahead as today was my last appointment with Dr. Sweeney and now I will have to start going to a new office altogether.

She decided it was also important to check my cervix again to see what had progressed over the last 9 days since I had seen her last. She said I am 100% effaced but still not dilated which is good news. She last last week when she checked me I was 50% effaced, so there was significant change during that time period. She said she is going to talk to the perinatologists downtown and ask them to think about steroid shots to improve the development of Caden's lungs. But she would leave that decision up to them. However, it does mean that I need to be even more careful than I have been. I am going to be staying down completely as much as possible. No more sitting to do things, laying down will be much better for me and Caden. When she was done with our appointment, she sent me down to Labor & Delivery to have a NST done just to make sure Caden was doing fine. So I went and did that and Caden is doing fantastic.

On my way home from the hospital, I got a call from the genetic counselor at Stanford. She wanted to give me an update from the committee meeting today regarding a recommendation on where we should deliver. We had felt pretty confident based on everything we had been told that we would be able to deliver at Sutter Memorial without a problem. However, she said they had quite a lively debate about our case and Dr. Silverman was the one voicing the most concern about us delivering in Sacramento. He still felt that the heart looked good from the echo even though the left side was slightly on the small side. But his concern was that the left side wouldn't grow proportionally with the right side, therefore creating a problem. He wanted to reserve final recommendation for delivery location until after we have our ultrasound and echo at Stanford on December 17. Just when we felt like things were figured out, we're put back in a position of limbo.

I mentioned to the genetic counselor that there was additional concern that I might not make it to December 17 with this pregnancy since there is so much change in my cervix. She said that if I were to go into pre-term labor, I would obviously contact my OB's office and go to the hospital in Sacramento. And, hopefully at that point, they would be able to get me stabilized and hopefully stop the contractions and then get me to Stanford before delivery. But if I ended up delivering in Sacramento before December 17, and there was concern for Caden's heart, they could always transfer him to Stanford and I could follow when I was discharged. Of course this option is less than ideal but we will do what we have to do when the time comes. At least at this point, the perinatologist office in Sacramento will be getting all my records sent to them and they will know me and know what is going on with me. So if I do go into pre-term labor, at least they will be prepared.

I just wish there was clear direction at this point. I thought we had it and now I feel like we're back where we started, at least in terms of where to deliver or not. Right now, we are asking for your prayers for me to not go into pre-term labor so that Caden can remain inside me as long as possible. Having a baby born prematurely is difficult in general, but if you combine that with a baby with a diaphragmatic hernia, it definitely complicates things even more. We have already seen evidence of God answering our prayers, so we are asking you to continue praying for us that Caden will remain right where he is for several more weeks!

Marathon of Appointments - Stanford

On Wednesday, November 19, Greg & I began our marathon day of appointments at Stanford by meeting with Dr. Reddy, the CardioThoracic Surgeon. Even though we had heard from Dr. Silverman on Tuesday that the heart looked completely normal, we wanted to touch base with Dr. Reddy in case he had any other input or concerns. When we first sat down in his office, he looked at us and started talking about all the heart defects our baby had. Greg & I both were stunned. We looked at each other and back at Dr. Reddy, trying to figure out what we were hearing. We were speechless briefly but as soon as we found our voices we told him that on Tuesday Dr. Silverman had said everything looked normal in the echo. Dr. Reddy said he hadn't spoken to Dr. Silverman so didn't realize there was such a significant change. I was glad when he had one of his assistants get Dr. Silverman on the phone while we were in his office so they could discuss it and we could all be on the same page.

After talking to Dr. Silverman, we asked Dr. Reddy what his confidence level was that there weren't any heart defects. He said he was 99.9% confident in Dr. Silverman's assessment but there is always a slight possibility that something small could be missed. However, he said the concern of there being an AV Canal problem was absolutely out of the question because that would not be missed, especially because they were specifically looking for it. In addition, Dr. Silverman had shown the echo to another one of his colleagues is the heart center who agreed completely with his assessment. So, yet another person agreeing there were no defects.

Dr. Reddy said there was a very remote possibility of a small defect but it would be relatively minor. And, if we didn't deliver at Stanford, the doctors could give Caden medication to keep the valve open and keep him stable and transfer him to Stanford if necessary. But he thought this was pretty unlikely based on the echo. He said he didn't think it would be a problem to deliver at Sutter Memorial in Sacramento based on the news about the heart. However, he did recommend having Dr. Silverman do another echo in mid-December in Stanford just to completely rule out the unlikely possibility of having missed something. We thought that sounded fine to us so we are scheduled for another echo on December 17. That about covers what we talked to Dr. Reddy about since we weren't dealing with any heart defects.

Our next appointment was with Dr. Chueh, the Perinatologist. She, and another doctor, met with us briefly to discuss what they knew about our situation and whether or not we would be transferring to them for the remainder of our care. They seemed to think it was a good idea to go ahead and treat me as if I was going to be transferring there, just in case, but it didn't seem as likely now as it did in the beginning. Otherwise there was nothing extraordinary about our appointment with her.

After that, we had a break in the day and got some lunch in the hospital cafeteria. Then we went to our next appointment which was with the genetic counselor, Meg. When we met with her, she had all the information from the ultrasound, MRI, echo, etc. and was very happy for us. She thought we had received great news. So she wasn't sure our meeting that afternoon with the Neonatologist, Dr. Hintz, would be necessary, but we would go ahead and have it anyway, just in case. She was talking about how they weren't sure how things could look so different in the echo at Stanford compared to the reports they had received from our previous echos. She even seemed to think that it was possible that our Cardiologist could have made a mistake and seen something that wasn't there. However, Greg & I truly feel this isn't the case. There were four different doctors who did ultrasounds/echos and they all saw defects. There was most definitely something wrong with Caden's heart and now it was gone. But of course, they trust Dr. Silverman over any other Cardiologist, and for good reason. But I don't think that means the other doctors were all wrong.

When we were done talking with Meg, she got me in for my fetal non-stress (NST) test a little early so we weren't just killing time. That was nice to be able to just go from one thing to the next without waiting. The NST went well and Caden performed fantastically. In a baby under 32 weeks, they have less strict guidelines they are following, but Caden was performing well above normal and doing better than many babies over 32 weeks. So, that was nice to know. Definitely not in distress!

As soon as we were done with that, Meg paged Dr. Hintz, the Neonatologist, and she came up to consult with us. She started off by saying she wished all her consultations ended up being this way: having to talk about good news instead of bad news. She said they had no explanation for the change in the status of the heart. But Greg & I looked at each other and we certainly have an explanation and it has nothing to do with science or medicine. It is a miracle from God! Dr. Hintz said it was certainly good news for us that the heart turned out to be fine. Now we were only dealing with the congenital diaphragmatic hernia (CDH) which is a big deal all by itself. She said she had seen the results of the MRI and had talked to Dr. Barth, the Radiologist, and they both thought things looked really good. It appeared that the CDH was minor and that there was only a small portion of the liver in the chest cavity and that the right lung development looked pretty good. She did say, as did Dr. Albanese, that just because the lung looks normal doesn't necessarily mean it will function normally and that isn't something that can be determined until after birth. And, she also added something else in there which we didn't even know was a possibility. She said that there was a very small chance that the diaphragm wasn't actually herniated and there was no hole and that the liver could just be pushing up on the diaphragm causing it to bulge up into the chest cavity. This would be more great news for us. Of course, if that was the case, we don't know if there would be any other concerns in regards to the liver or why it was doing that in the first place. But, we are still praying for a miracle of complete healing.

Dr. Hintz took us on a tour of the NICU and gave us a lot of information about what to expect when Caden is born. She also said that she really felt it would be okay to deliver at Sutter Memorial based on the information we know now. But she said there is an interdisciplinary committee that is meeting on Friday, November 21 to discuss our case (among others) and make a recommendation on the best place to deliver. This committee includes everybody who has been involved in our case in any way, from the social worker to the pediatric surgeon and everyone in between. So if there is any concern about Caden's health, they will recommend delivering at Stanford, otherwise, they will recommend Sutter Memorial. Dr. Hintz said we could expect to hear from her or one of her colleagues that afternoon or first of next week for sure. Of course, if the echo at Stanford showed anything further in the heart, they would tell me and we would go there instead. So, it sounds like we can deliver at Sutter Memorial barring any unforseen changes.

The Social Worker who was assigned to our case met up with us while we were in NICU with Dr. Hintz. She just wanted to make sure that everybody understood what was going on and that we knew how much communication was going on behind the scenes between all the doctors to make sure that they could provide us with the best care. And, because we won't have an absolute decision about delivering at Sutter Memorial until after our echo on December 17, she said she would be sure to leave our name on the waiting list for Ronald McDonald House just in case we needed to go over there after all. She didn't want to risk taking me off the list and then having us need a spot there at the last minute because we would be back at the bottom of the list. So that is reassuring that we would still have that option on the off-chance we needed it.

We were able to finish with all our appointments earlier than expected because we were dealing with good news instead of bad news. It made the conversations go more quickly with not as much to worry about. But it was still nice to meet all the specialists because it just gave us more information to work with and better understanding of the process and what to expect.

All we can say right now is that we are praising God for the miracles we have seen and his blessing in our lives. There doesn't seem to be any other medical explanation that makes sense so we know God is involved! I have an appointment with Dr. Sweeney tomorrow and I think we'll discuss what needs to happen to get my care transferred to Sutter Memorial and get in touch with the Neonatology team there. So, I'll post another update when I have more news to share. Thank you for your continued prayers as we pray for the CDH to be completely healed as well.

Fetal Echo & Pediatric Surgeon Consultation at Stanford

Today, November 18, Greg & I drove over to Palo Alto to begin our two days of appointments and consultations. We dropped Kyler off at Natalie's house in Walnut Creek along the way. Our first appointment was for the fetal echo and it was scheduled for 1:30 pm. We arrived at the hospital just before 1, got all checked in, and headed to the Heart Center. We were a little early so we just waited until they were ready for us. Olga, the technician, called us back shortly before 1:30 and started the echo. She didn't really say anything to us and Greg & I just watched the screen quietly, trying to make sense of what we were looking at. After about 10 minutes, three more people came in the room and were asking us who referred us to Dr. Reddy and if we were the "AV Canal" patient. We had no idea who these people were or why they were asking. We finally figured out that the main doctor was Dr. Norman Silverman. We found out later from the pediatric surgeon that he is apparently the doctor who started fetal echos and is the expert in the field. He spent the next 20 minutes or so in the room with us (and the two additional onlookers) commenting on what he was seeing on the screen. He said from everything he could see, there were no congenital heart defects and no heart disease. Greg & I were stunned to say the least! This is a huge change from what we had been looking at. Dr. Silverman said the aortic valve looked completely normal, the mitral valve looked completely normal, he couldn't see any sign of VSD. When I asked him about the fluid around the heart that Dr. Barth had mentioned during the ultrasound, Dr. Silverman said that is also completely normal. He said from everything he could tell, the only issues with the heart were related to the congenital diaphragmatic hernia (CDH). He said the CDH is what caused the heart to be tilted to the left and why the left side is smaller than normal. But, he said even with the left side being smaller than normal, he didn't think that was going to be a problem. He said normally children outgrow that and the heart develops perfectly normally.

We questioned him about the details of what he was looking at and he asked Olga to look at various things on the echo that he wanted to look at. And, with each thing, he kept reiterating to us that everything looked normal to him. When we asked him how confident he was about this he first said 99.5% sure and then he said 99.9% sure. It's hard to get any better than that! He said sometimes heart defects are misdiagnosed in babies with CDH simply because the heart is in a different position than normal and it's hard to get a good view of everything. And, he said it's possible that the defects were there but have resolved themselves. Either way, he was very sure of himself saying that there was no heart disease. Olga finished up the echo and we were on our way. We left the heart center in shock because we couldn't believe what good news we had received. Of course we were still a little skeptical because we didn't have any frame of reference as to who Dr. Silverman was and what his specialty was.

As soon as we left the heart center, we got a wheelchair for me and Greg pushed me across the street and down a couple buildings to meet with Dr. Craig Albanese, the Pediatric Surgeon. Our appointment was originally scheduled for 3:00 pm, but they had called and asked if we could come to their office any sooner. We ended up getting there right around 2:30 and Dr. Albanese saw us immediately. He was very friendly and easy to talk to. He ended up spending about 45 minutes with us, giving us information and answering questions. We first talked about what Dr. Silverman had told us and that is when Dr. Albanese told us who Dr. Silverman was. He said he is the one who really started doing fetal echos and is probably the most qualified expert on the subject. When we told him that Dr. Silverman said he didn't see any heart disease, Dr. Albanese took that very seriously and said it was probably true. He had complete confidence in whatever Dr. Silverman told us. However, that being said, he asked if we had another fetal echo scheduled with our cardiologist at home and we told him we had one this coming Tuesday. So, he said he would definitely be interested in finding out if that echo showed the same thing, but he would be surprised if it didn't.

Then we started talking more specifically about the CDH. He had talked with Dr. Barth and seen the MRI results which he said made him "cautiously optimistic" about the severity of Caden's CDH. He said in the case of a small hole, it would probably be easily closed with existed diaphragm tissue and that would take care of it. He said most typically with a right-sided CDH, they open up the chest and push the liver down. He said the liver is easy to split, so opening from the abdomen and pulling the liver down doesn't typically work as well. And, the possibility of laproscopic surgery is more difficult with the liver because it is hard to pull the liver down with smaller instruments. He said usually a hand pushing it down is the best option. But they make the decision for the type of surgery on a case-by-case basis.

We talked about what to expect once Caden is born. He said the Neonatologist and a team would be in the delivery room with us and as soon as he comes out, they would whisk him away and assess him. Based on what they found, most likely he would be put on a ventilator and moved to NICU. He did say a very small number of babies born with CDH do not have to be put on ventilators, but they usually make the assumption that they do because it's easier to take a tube out than it is to find out too late that the baby isn't getting enough oxygen to the brain, etc. Then once Caden is in NICU, he will be continued to be monitored for the next few days while they determine the best time to do surgery. Dr. Albanese said it is almost never before three days and sometimes it's much longer than that. It just depends on the baby and the situation. He said 70% of the surgeries they do for babies with CDH are done in the NICU as opposed to taking them down to an operating room. They feel it is must less risk for the baby that way so they don't run the risk of destabilizing a baby that is doing well in NICU during transport to the OR.

We asked about when we would be able to hold Caden and again, he said that really depended on how he was doing. He said it could be as early as the same day of birth, or it could be a couple weeks. But he said the doctors and nurses are very sensitive to the parents and want to encourage bonding as soon as it is "safe" for the baby. Any kind of touch or outside stimuli too soon could be detrimental to Caden's health. But they do want parents to be as involved as possible.

The other thing we talked about was whether or not we really needed to deliver at Stanford if Caden's heart is fine. Dr. Albanese said it really depends on our comfort level. He recommended talking to all the doctors tomorrow (CardioThoracic Surgeon, Perinatologist, and Neonatologist) to see what they recommended. And, in addition to that, we should talk to all our doctors back in Sacramento/Roseville and see what they thought.

Overall we were very happy with our meeting with Dr. Albanese. He was very generous with his time, didn't seem in a rush to get us out of his office and was willing to answer any questions we had. We left there feeling very positive about Caden's status. It also really helped us have more confidence in Dr. Silverman's assessment of Caden's heart. Since we had no frame of reference as to who this doctor was, it was nice to have more background information on him. And, we will be seeing Dr. Reddy, the CardioThoracic Surgeon, tomorrow morning. Dr. Silverman said he would be letting Dr. Reddy know exactly what he saw, or in this case, didn't see. And, we will see what Dr. Reddy has to add to the discussion regarding Caden's heart.

Once we were all done with our appointments for today, we decided to stop by Ronald McDonald House and see if we could have a little tour just so we could familiarize ourselves with and know what to expect. It is a really nice facility and they have 47 units available. They provide breakfast every morning which was a surprise to us. And, four or five nights a week they also have dinner. Different organizations come in and provide those services. The rest of the time, the kitchen is available for personal use and cupboard and refrigerator space are made available for each unit. They have an activity room for young children, a computer room with eight computers as well as digital cameras you can check out for use. It just seems like a really nice place. I think I could handle staying there for awhile, as needed. Of course that will depend on whether or not we end up delivering at Stanford or not. We still seem to have unanswered questions...

We are feeling incredibly blessed right now. We are praising God for the good news we have received today and have continued to receive throughout this pregnancy. But we ask for your continued prayers as we face another day full of appointments and consultations. It's an overwhelming experience and we still need God's help in deciding the best place to deliver Caden.

Ultrasound and MRI at Stanford

Yesterday, November 14, I drove over to Lucile Packard Children's Hospital at Stanford to have an ultrasound and MRI. I spent the night before with Greg's sister, Natalie, in Walnut Creek. Kyler was staying with her while I went for my tests. I was worried about traffic, so I left at 6:15 am in order to make sure and have enough time (it's only about 50 miles from Natalie's house to the hospital). But, traffic was fine at that time of the day and it only took me an hour to get there. So I found a little cafe in downtown Palo Alto and got some food, sat down, and read. It was nice to get there and be relaxed and not stressed about traffic or running late. About 8:15 I headed to the hospital. I was happy to see that they had free valet parking which I gratefully took advantage of! The less walking I have to do the better. Once inside, I had to find my way through the maze of unfamiliar hallways up to the Perinatal Diagnostic Center where my ultrasound would take place. I checked in half an hour early and they took me back almost immediately, which was nice.

The ultrasound technician was very friendly and very informative. She talked to me all throughout the scan and told me about the things she was looking at and what she saw, etc. That was nice because very often the techs are quiet and don't say too much to you. Of course, it made me wish all the more that Greg could have been there with me. I'm sure he would have liked to be able to ask questions during the ultrasound. She pointed out some fun things during the ultrasound as well. She showed me Caden practicing his breathing; you could see his chest moving up and down. And, when she was looking at his face, we could see him opening and closing his mouth. When he was opened his mouth, she pointed out that he was sticking out his tongue. It was nice to have an ultrasound be light-hearted at times instead of stressful as they have been.

When she was done with the scan, she paged the Pediatric Radiologist, Dr. Barth. It was nice to see a radiologist because up until that point, we haven't had one look at any of our ultrasounds. He reviewed the ultrasound and then came in to meet with me and go over some things with me. He said it looked like from the reports he had received that initially there had been some concern regarding the shape of the skull and other potential neurological problems. He said from what he could see, and they had great images, there was nothing wrong with the brain or the skull and that everything was completely normal. He was very confident about it. This was so reassuring to hear because at our previous ultrasound the Perinatologist hadn't seemed 100% confident about it. But, Dr. Barth was very confident so that was great!

Then we started talking about the diaphragmatic hernia. We looked at the diaphragm on the left side of the chest and everything on that side looks great. You could clearly see the line of the diaphragm and the location of the organs below it like they should be. Then we looked at the right side of the chest and we looked at the partial line of the diaphragm and where it ended. He showed me where the liver was pushing into the chest cavity. But from the images he could see, he thought the hernia looked "minor" and that there was only a small portion of the liver in the chest cavity. When I asked him what that meant, he said it was definitely less than half the liver in the chest cavity. However he did want to see what the MRI showed to be completely sure of the severity and also get a good look at the right lung and it's development. In the ultrasound the view of the right lung was blocked by the liver so he couldn't give an accurate assessment.

Lastly, we looked at the heart. He didn't get into too much detail about the heart. In fact, he hardly talked about it at all. He said the best diagnostic tool for that is the fetal echo which we are scheduled for next Tuesday at Stanford. But the one thing he did mention is that it appeared there was fluid around Caden's heart. I don't remember Dr. Van Gundy, our cardiologist, mentioning this to us before. So I'm not sure if I just don't remember, or if this is a new development. Hopefully we'll get more clarification once we have the echo. Dr. Barth did ask me if I planned on delivering at Lucile Packard Children's Hospital and I said we hadn't made our final determination, but probably. He said, in his opinion, because we are dealing with the cardiac abnormalities in connection with the diaphragmatic hernia, he would definitely recommend delivering there. So, again, another push in that direction.

Once I was done with the ultrasound, I went down to wait for the MRI, which was scheduled for 11. I ended up waiting a long time for it and by the time they finally got me in it was probably 11:45. I have never had an MRI done before and was a little concerned about being in a small tube because I have some claustrophobia. But I figured I would do whatever I needed to do in order to accurately assess Caden's diaphragmatic hernia. So in I went... It really wasn't too bad except they kept having me hold my breath for various images. Sometimes I would have to hold it for 13 seconds all the way up to 33 seconds. None of which is too terribly long. But because I had to do it so many times, I was feeling a little light-headed like I wasn't getting enough oxygen. They tried to give me a little bit in between each breath holding session, but sometimes they were closer together than I would have liked. All in all though, the MRI was pretty non-eventful. One of my biggest concerns was that Caden wouldn't hold still and they wouldn't be able to get the images they needed. After all, there isn't really anything I can do to keep him from moving around. And, the whole time I had been waiting for the MRI, Caden had been moving around like crazy. But during the MRI, it seemed like he was really calm and didn't move around too much so I was relieved about that. They had said if the baby moved around a lot it could lengthen the time by half an hour or more because they would have to re-take images in order to get good pictures. When it was over, the technician had me write down my cell phone number and told me that Dr. Barth would be calling me with the results as soon as he had finished reviewing all the images. The tech also told me that they got amazing pictures and that Caden had been very still which was great. Even so, I think the whole MRI took almost an hour. I left the hospital right around 12:45.

By this time I was completely dehydrated and starving! They wouldn't let me eat or drink anything after 9 am because they didn't want my digestive tract in motion during the MRI. And since they had taken me back for my ultrasound early, I hadn't had anything to drink since before 8:30. That is too long for me to go without water. So as soon as I was done, I started gulping water from the water bottle I had with me. Then I went down and waited for the valet to bring me my car and I drove to downtown Palo Alto to get some food. Thai food was very appealing to me so I stopped at Thai restaurant. Before they brought me my food, I had gulped down two glasses of water and was still feeling dehydrated. But gradually I started feeling better. And, getting some food in me helped as well.

Once I was done eating, I got in the car and drove back to Natalie's house. I didn't expect to hear from Dr. Barth that day, I figured it would probably be Monday before I heard anything. So when he called me later that afternoon, I was so surprised. He had great news to share!!! He said there really was only a very small piece of the liver in the chest cavity like he had suspected in the ultrasound. And, the even better news was that he said it looked like the right lung had developed fairly normally. He said it probably wasn't 100% normal because of the liver, but he thought it would be very functional. He even added that he wouldn't expect Caden to have any breathing or respiratory problems due to the diaphragmatic hernia. He said there could be some breathing problems related to the heart defects, but in regards to the hernia, he thought it was great news. He said given the fact that our baby has a diaphragmatic hernia, this is the best possible scenario we could be looking at under the circumstances, and he thought fixing the diaphragm would be an easy fix. Such incredible news!!!

Later that night I talked to all my family to give them the update and when I was talking to my sister, Cheryl, I commented on how great it was that Caden was calm and quiet during the MRI. She said she had prayed for that specifically all week long. She wanted to make sure they were able to get good images of him so she had been praying for that specific thing. God is so good to us and he answers even the simple prayers like keeping an active baby in utero calm during an MRI. Right now we feel so incredibly blessed to be in the position we are now. We still feel there are a lot of unknowns as we wait to meet with the specialists next week. But we are so happy right now and feel so much hope and optimism. It's a far cry from where we started and we are blessed!

On another note, when I got home on Saturday, there was a message on our home answering machine from someone at the Cardio Thoracic surgeon's office saying they needed to reschedule our appointment for next week. I am currently scheduled for 9 am on Wednesday, November 19. Please pray that we are able to reschedule the appointment during the time we are over there on Tuesday and Wednesday. I left a message for them today and asked them to call me back as soon as possible and hopefully we can get it taken care of. So, prayers for getting that done would be much appreciated.

Dr. Sweeney, OB Appointment

Today, November 12, I had a regular OB visit with Dr. Sweeney. I had been looking forward to seeing her so I could talk to her about several things. First of all, I gave her an update on the consultation with Dr. Gates, the pediatric surgeon from UC Davis. And, then we talked about the appointments set up with Stanford. One of the main concerns I wanted to address was the possibility of Caden being born as early as 34-35 weeks according to Dr. Gates. I asked Dr. Sweeney if I should be on bed rest now and she said I should definitely be taking it easy. But I really wanted to know to what degree, how strict should I be. So, she said she wanted to check my cervix to see how it felt before giving me any specific directions. First she measured my stomach and I measured right on exactly where I should be. I was glad to hear that since people keep telling me they think I'm too small. And, Caden's heart beat sounded good as well. When she was done with that, she checked my cervix and told me some unfortunate news; it is very short and very soft. Not good for me. It means that she put me on bed rest/restricted activity beginning today. Caden has been extremely low my entire pregnancy and I have been feeling a LOT of pressure in my pelvis, especially in the last couple weeks. As Dr. Sweeney put it, gravity works. The more I'm up, the more gravity will pull Caden down and the more chance of my cervix beginning to dilate. The good news right now is that I haven't started dilating yet.

So, now we are left trying to figure out how we're going to make this work. After all, Greg is in Florida this week so I'm on my own. But, I will be going over to Greg's sister's house tomorrow in Walnut Creek. That will help me out for Thursday night and Friday. And, I don't plan on coming home until Saturday morning, so that will get me to the weekend. Then Greg will be home Saturday afternoon and can take over other. But there are still several more weeks in which we have to figure out how to work out the logistics of what to do with Kyler. Dr. Sweeney told me the parameters of my bed rest are that I absolutely cannot lift Kyler or other heavy object. She said no errands, house chores or preparing meals. She said driving is okay and that I can go to appointments, etc. But I need to limit the time on my feet as much as possible and spend as much time lying down or sitting as possible. So we'll see how we make this work. After talking to my mom, she thinks she might be able to come down and help me for a little while between a couple of her trips but I'm waiting to hear back from her on what she thinks she can work out.

The other thing I talked about with Dr. Sweeney is what I should to if I go into labor before I relocate to Stanford. She said if I go into labor, I should head straight to Sutter Roseville to deliver there. She said she would deliver Caden and she knows our situation. They have a NICU there and would be able to stabilize him and then transfer him to Stanford via helicopter or ambulance as needed. She said this is obviously not ideal because it would be better to deliver at Stanford where they could control everything and have everything lined up already for NICU, surgeries, etc. But, if I was to go into labor here, the best bet would be to go where the people know me and my situation. We just hope this isn't the scenario because we don't want Caden born this early. I will do everything in my power to keep him inside me for as long as possible.

Please pray for us as we try to work out all the details of me being on bed rest and still making sure all Kyler's needs are taken care of. I'll try to update the blog again after I have my ultrasound and MRI at Stanford on Friday.

Pediatric Surgeon Consultation

On Monday, November 3, Greg & I met with Dr. Gates, a pediatric surgeon located in Sacramento who performs surgery at UC Davis. Our consultation with him was regarding primarily the diaphragmatic hernia and not related to the cardiac issues so we have to keep that in mind when we relate what he shared with us. He also had only received a report from our last ultrasound and not all of them and he didn’t have any details on the cardiac issues that are involved.

However, in talking with him, he seemed to be very optimistic about Caden’s outcome. He said that right side diaphragmatic hernias are usually less severe than left side because there are less organs with the potential of being up in the chest cavity. This was different than we originally believed so that was good. He also said that depending on the severity of the hernia, how much of the liver was in the chest cavity, would determine how they would do surgery. They can either enter from the chest cavity and push the liver down and close the diaphragm, or they can enter from the abdominal cavity and pull the liver down and close the diaphragm, or they can possibly do thorascopic surgery and repair that way if it is minor enough.

We also talked about how common it is for babies with diaphragmatic hernia to be put on ECMO (extracorporeal membrane oxygenation), a machine that gives the blood oxygen outside of the body. We thought it was fairly common, but Dr. Gates told us it is only about 5-10% of babies with diaphragmatic hernia that have to be put on it. We were really encouraged by that information.

We also talked about what to expect when Caden is born. First of all, he did say they really prefer babies to be born vaginally as opposed to C-section, because the pressure of being pushed through the birth canal improves lung function which is really important to babies with diaphragmatic hernias. This was good news to us because we really wanted to avoid C-section if possible.

Then Dr. Gates said that as soon as Caden is born, they would take him immediately to NICU and put him on a ventilator, assuming he couldn’t breathe well enough on his own. From there, they would take x-rays to determine the severity of the diaphragmatic hernia and continue to monitor his blood-gas levels to see when he would be ready for surgery. They watch for a certain ratio to make sure his body is ready.

In Dr. Gates opinion (taking into account only the diaphragmatic hernia), the best case scenario would have Caden in NICU for as few as 10 days. His worst case scenario would mean a NICU stay of up to three months. Of course, we don’t know how the cardiac piece impacts this information. If all goes as he expects, he would anticipate a positive outcome with Caden leading a pretty normal life. Of course, he definitely feels we need to meet with cardiothoracic surgeons in order to get a complete picture of outcome probabilities.

All in all, we felt it was a very good consultation and we liked Dr. Gates a lot. We are very glad we were able to see him before we go to Stanford and meet with all the specialists there. It just feels like we are more informed and can ask more specific questions. The only other thing we talked to Dr. Gates about that causes us some concern is about how babies with diaphragmatic hernia are often born early, as early as 34-35 weeks. So, me going on bedrest at 35 weeks might not work out. And, the plan to relocate to Palo Alto at 36 weeks could be problematic if I’ve already had Caden. So, we will definitely be talking with the doctors at Stanford to see what their opinion is. Please keep us in your prayers as we continue our journey.

Stanford Consultations

Over the past couple weeks, I have been in contact with people at Stanford Children’s Hospital trying to set up appointments for consultations. We are currently scheduled for appointments on November 14, 18 & 19 with a pediatric surgeon, cardiothoracic surgeon, perinatologist, neonatologist, ultrasound, MRI, fetal echo, non-stress test, genetic counselor and a social worker.

Unfortunately, because of the timing of things I will need to go down to Stanford on the 14^th by myself (Greg will be in Florida) to get the ultrasound and MRI. The radiologist needs to have enough time to read the results (particularly of the MRI) and pass the information on to the pediatric surgeon, cardiothoracic surgeon and the neonatologist before we meet with them the following week.

We are so fortunate that Greg’s sister lives in Walnut Creek and is able to take the time off to watch Kyler while we do all these appointments. I will stay with her on the 13^th before my appointments on the 14^th and she will keep Kyler until I am done. Then, when Greg & I go down together, we will be spending the night of the 18^th in Palo Alto between our two days of appointments. Natalie will be able to watch Kyler the whole time. It sure does take a lot of stress off us for sure!

I talked with the social worker from Stanford on the phone on October 29 and she was very helpful. She is kept in the loop of everything we are dealing with and works with us to make sure we have everything we need. She also put us on the waiting list to stay at Ronald McDonald House right by the hospital. There are always more families than space available so she wanted to get my name on the waiting list to begin my stay on December 21 or 22 which is when I will be 36 weeks.

This whole process has seemed a bit overwhelming at times but I am trying to stay organized about it all. It helps me feel like I am doing something useful. And, the people at Stanford have obviously worked with many families in similar situations so they have their systems figured out.

We just ask for your continued prayers as we go through this consultation process. We are looking forward to having a second opinion on Caden’s condition. And we hope to be able to make a final determination on whether or not we will be delivering at Stanford.