Monday, December 21, 2015

Our Little Baby Part 2

Mike and I have had a very interesting, hard, crazy week. It is really weird how things can change so quickly in just a short amount of time.  I will warn you before you read any further that this post is long!!  Also I (Amy) wrote the first 4 paragraphs and Mike wrote everything else so hopefully it won't be too confusing.

On Tuesday Dec 15th I got home from work and one of my friends came over to just talk and to hang out. Mike called me shortly after she got there and asked if I had taken my blood pressure yet. I told him no and that I will just do it later. Jessica, my friend said no lets just do it now. I really didn't want to take my blood pressure because it really stresses my out every time that I have to take it. I just wanted it to be ok. So we took it with the little blood pressure machine that we had bought and my blood pressure was out of control high. So then we took it again to make sure and it was still super high. Just to make sure the machine was working right we then took it manually twice and both times is was very high. The doctor said if my blood pressure ever got higher then 150/100 I need to go into the hospital. My blood pressure this night was about 162/108. It was out of control. I called Mike and told him and we decided it was best to head on over to the Emergency room. (Thanks to Jessica for being there, we love you!)

We got to the emergency room and they hooked me up to the blood pressure machine, checking my heart rate and everything else..haha My blood pressure was all over the place. It would get around a good range and then about 15 minutes later it would spike way back up and all I was doing was laying down. It was really such a weird feeling because I felt completely normal the whole time. I did not have any symptoms of high blood pressure at all so to have my blood pressure be so crazy was really weird for me. In the situation I was in with the pregnancy, we knew this was a risk we just were not expecting it to happen within 4 days of finding out everything. Anyways, back to the emergency room, we saw the doctor and he pretty much was in shock that I had a Mole and a normal fetus inside of me. He really didn't know what do to so he called the on call OB. The OB was kind of the same, he told the ER doc to call maternal fetal medicine and see what the best thing was to do. We spent like 5 plus hours in the ER just waiting for the Doctors to communicate back and forth and to see what was the next step and what was best for us. In the end they decided it would be best for us to go up and be admitted to the hospital in Murray, IMC.

The OB doctor came down and talked to us about the situation and why they have decided this would be the best place for me. He pretty much said with how your blood pressure is right now, its just going to get worse and preeclampsia is going to progress really quickly because of the situation. Molar pregnancies are complicated, but it makes it even more complicated to have a Mole and a fetus. So he pretty much told us they want us up at IMC because they are better equipped with everything that we will need for this situation. He said after talking to the maternal fetal medicine doctor and going through all the possible options, they felt like we would have to terminate our pregnancy in order to keep me alive and for me to later on in life be able to have kids. When we heard this, we were in shock, we were numb and had no idea what to think. Shortly after this conversation happened we were discharged from the ER and they let us drive to IMC. We stopped by our house to grab a few things and then just held each other and cried for a few minutes and then we were on our way.

The drive up we were really quiet, I think we were just both trying to process what was actually going on and how it all just happened so quickly. We got to the hospital and it took me awhile to get out of the car. I just didn't want to go in, I knew when I went in this whole pregnancy was going to be over and it was really hard to handle. Finally we got in there, got into our room and I was hooked back up to the blood pressure machine. My blood pressure was still crazy and all over the place. They were planning on doing the procedure the next morning and so we decided well we should probably let our families know what is going on. Mike called both our parents and let them know, which was really hard and between me getting poked and IVs started and the blood pressure going it was just kind of crazy. The resident came in and talked to us about everything and what was going to happen and then things slowed down a little bit and we decided to get some sleep. About 30 mins later my cute parents walked into the room. We talked to them for a bit and then they decided to go and told us they would be back the next day. The hospital decided to move me up to another floor and thats where we stayed for the next 4 days.

We maybe got an hour of sleep that night because our minds were running wild. It was about 4 am when we got to the room and we didn't see the Doctor early in the morning like we had expected. We met Dr. Heuser at 11 am and she told us they were going to hold off for a bit to make sure they were prepared. We were relieved that we had some extra time to try and process all that was happening. At this point Amy's blood pressure had started to somewhat come down. I asked if this was a good sign and if we really had to proceed. She explained that preeclampsia is not very well understood but what they do know is it always gets worse and not better. She said because Amy's blood pressure was so high and unstable this early on they feared it would become fatal to her very quickly. She said at this point it had just become too dangerous to continue. This was very hard to hear considering we were still holding on to some sort of hope but at the same time this was the fourth doctor that had come to this same conclusion. She said she had been talking to GYN oncology and calling around to any physicians that may have any experience with this type of pregnancy and that is why it took her so long to come and see us. She also said that it would most likely take place Friday (this was Wednesday).

We almost felt it was torture at the time sitting there in the hospital waiting for this all to happen. Once we realized all the preparations they had to make before hand to make sure Amy was safe and that they would be able to keep her uterus we understood why we had to wait. This was probably the hardest day for us. We met a few of the other Maternal Fetal Medicine doctors there who all agreed that this needed to happen. As hard as it was to hear it was reassuring to know there was no conflicting opinions. Wednesday night Dr. Jones, our regular OB, came to see us. We were so happy to see him come through that door. Although every single doctor we met was extremely nice and sympathetic to our situation we knew Dr. Jones knew us and our situation. We had seen about 10 doctors at this point and were just happy to see a familiar face. Dr. Jones has known Amy for a long time and is a good family friend. We knew that we could talk to Dr. Jones not only about the medical aspect but also the spiritual and emotional aspect of what was happening. He stayed and talked with us for about 45 minutes about everything that was happening. He had the same opinion as all the other physicians that this is what needed to happen. We talked about just everything with him and felt so much better about the situation once we had spoken to him. It was after speaking to him we realized how much of a hand our Heavenly Father was really playing in all of this.

Dr. Jones was amazed at how fast everything happened. He said there was a series of events that shows that our Heavenly Father was watching out for us. First we decided to do the screening. He said most patients don't do it for whatever reason. Second he was amazed that we got into maternal fetal medicine as fast as we did. He said his patients in the same position we were (with an abnormal screening) were waiting three weeks to get in and see maternal fetal medicine. Because of a cancellation we were able to get an appointment in two days. Third we were actually taking Amy's blood pressure at home. Fourth he was very happy they transferred us to IMC because AF and UVRMC weren't equipped to handle this situation. When we last saw Dr. Jones at our 16 week appointment (Dec 1st) Amy's blood pressure was fine. Our next appointment wasn't scheduled until the beginning of January. If we hadn't of done the quad screen there would have been no reason for us to monitor Amy's blood pressure. Normal preeclampsia doesn't start until late in the third trimester. With molar pregnancies you're at a high risk for it to set in early. So we would of never known she had high blood pressure because she wasn't experiencing any physical symptoms. Who knows what could of happened if we didn't know to keep an eye on her blood pressure.

Wednesday night we had some more family come and see us which was nice. It was easier when we could keep our minds off of all that was going on. We went to sleep that night and able to actually sleep a few hours. Thursday was probably our best day emotionally since we had gotten to the hospital. In the morning we met two more doctors who did a procedure to begin dilating Amy's cervix. They as well reaffirmed how sorry they were and that this really was what needed to happen. Everyone of the doctors, nurses, and techs were so loving and caring. Each of them we could tell genuinely cared about us and what we were going through not just pushing us through. After that was done we went back to our room and most of the rest of the day was just people coming to see us. We were so grateful that so many of our family members and friends came to visit and support us. We also received so many messages, calls, and messages through our families members we are so grateful for. We truly felt all our your love and prayers for us and don't know how we would have made it through without them. After our visitors left we tried to sleep knowing Friday would be a whirl wind of a day.

Friday we woke up and tried to stay busy not thinking about all that was going to take place. We felt like after the procedure we would be an absolute mess. We had a few visitors then Amy's parents came by. Amy's dad gave her another blessing that was so tender and powerful it touched on the things that Amy and I were worried about the most and helped put us all at ease. As the time for surgery approached Dr. Heuser came in to talk to us. She is so awesome. She explained all the risks and concerns they had. She explained all the extra equipment available in the OR that she had because they were extremely worried about bleeding. She said molar pregnancies bleed a lot and sometimes the uterus will bleed uncontrollably and at that point they would have to perform a hysterectomy. They had been telling us this for a few days but at that point it's hard to hear because our chances of having kids could be gone because of this dumb mole. She said she would do everything possible to keep her uterus and explained all the extra devices they had to try if it started to really bleed. She also said she brought Dr. Gibbins in from the University of Utah to help as well as having a GYN oncologist there available if she needed him.

At this point we knew Amy was in good hands our biggest concern was our little boy. Even though we knew this had to be done we felt so bad for our little guy. We wanted to make sure he was respected and loved through this all with as much love as we would give him. As Dr. Heuser was getting ready to leave she again expressed how sorry she was and that she would take good care of both of them. This helped put us as ease a little bit then Dr. Gibbins came in. This was our first time meeting Dr. Gibbins. She had a special spirit about her when she walked in the room. She met us and said that Dr. Heuser had brought her in because of the difficulty with this procedure and the fact that none of them had dealt with this exact situation before. She began to discuss the risks again and the possibility of a hysterectomy. After she was all done she looked at Amy and began to cry. She said I just want you to know that our teams hearts break for you. We know this is a terrible thing to have to go through and we know how hard this must be. Then she said but I will tell you, if any of us were in your situation we would have to do the same thing but I'm so sorry. When she walked out of the room we knew that Amy and our little boy were in the best possible hands. We knew they would be respectful of him and love him as we did.

After that they took Amy down to surgery. They said total if all went perfect she would be out 1 hour 30 mins to 1 hour 45 mins with prep and all. After she had been down there about an hour they called to let us know it would be a little longer. Then we heard nothing for an hour then another 30 mins then another 30 mins. We began to get worried now that she had been in there 2 and a half hours that she must be bleeding and were worried. Luckily Amy's parents were there to keep me company so I didn't go crazy. After 3 hours finally Dr. Heuser came to talk to us. She said all went well. Amy was alive and she still had her uterus which was a huge relief. She said what took so long is Amy's ovary had swelled to about 5 inches in diameter (when it's suppose to be the size of an almond) and was pushing on the cervix which made it hard for them to use the instruments they normally use. They said because of the massive amounts of HCG the mole secretes as well as the normal placenta she gets these giant cysts which swell her ovaries. She said she began to make some calls and ask anyone for any other ideas so that she didn't have to open Amy up. Luckily after awhile someone had an idea that worked and they didn't have to open her up. After recovery she got back to us close to 5 hours after going in. We are so grateful these wonderful ladies took their time and took such great care of Amy.

Once Amy's parents had left and it was just us and Amy was awake enough, we began to talk. We had expected this to be the hardest part of this whole thing. We figured right after the surgery would be when reality set in that our little guy was gone. We both felt something so different though. Amy and I felt this overwhelming sense of joy. It was so profound it really overcame all the sadness. We had felt our boys happiness all along but never this intense. Whenever we thought about our little guy or prayed we felt how happy he was. We could feel his wonderful, tender, happy little spirit there with us. We kept looking at each other in amazement. It was so strong we couldn't deny how we felt. We felt that Heavenly Father gave us this as confirmation that he was in control and our boy was very happy with where he was at. It truly was amazing because at the time we thought would be the worst was actually the best we had felt this whole time.

We are so grateful for all the love and support we have received. We have never felt so overwhelmed by the love, support, and sincerity of the people around us. You are all so wonderful and we don't know what we would do without you! Thank you! Truly we don't think you'll understand how appreciated you were this week and continue to be. We felt your love and prayers and that is what helped us make it. Thank you!

We really want everyone to feel like they can talk to us about our situation and our experience. We know that those on the outside looking in may not know what to say, or what to do, but please just don't feel like you can't talk to us or say anything. We are both more than happy to answer any questions people may have. If you are pregnant or have kids or whatever and you feel we will be sad or offended by this, we want you to know we aren't and will never be. Being pregnant and having kids is the most amazing gift and blessing our heavenly father has given to us. Please know we are  genuinely happy for you, we love you and want all the best in the world for you.

Through this whole experience we have seen the hand of the Lord guide us and keep Amy safe. We know that for some reason this all was suppose to happen. For some reason our little guy needed to be back up with his Heavenly Father and we needed to go through this trial. This pregnancy we experienced happiness we didn't know was possible as well as pain deeper then we had ever felt before. We feel that this will be a life long learning experience for us and that we will understand a little more every year. We know that our Heavenly Father lives and that he is taking care of our little boy now. We know that our savior Jesus Christ died for us so that he could be with us and succor us every step of the way this week and forever. Our savior may be the only one who truly knows how we feel right now and knows exactly what we need. We have felt this as we have been on our knees praying for comfort and peace through this journey. We have an overpowering sense of comfort, peace, and happiness with this whole situation. We are grateful to have the gospel in our life so that we know where to turn for peace. That when we felt so defeated, so vulnerable, and filled with sadness we knew who to look to. Because of our testimony in a Heavenly Father and in our Savior we were consoled when we felt like nothing would make it better. We know that they are there and that they love each and every one of us. They will help us if we turn to them.

We hope everyone has a very Merry Christmas and will remember our Savior at this time. Again we can't say thank you enough to everyone for the support, the texts, the Facebook messages, the phone calls, the visits, etc. We are truly blessed!

Mike & Amy


Saturday, December 12, 2015

Our Little Baby

Mike and I found out I was pregnant on Aug 31st 2015 and we were so excited!! There are always many things that go through your mind like miscarriage and if baby is developing ok and so on.. We decided to wait until we had our 12 week appointment to spill the beans to everyone. We had our 12 week appointment and everything looked good with baby so on Halloween we told our family and friends and it was an exciting time. The worst secret ever was keeping from them that I was pregnant, so we were very excited to tell them.

Time went on and at about 15 weeks I had a belly, like you could tell I was pregnant it wasn't really questionable, which I thought was a little interesting since this is my first pregnancy and I wasn't that far along. Everyone else thought it was weird too..many comments on how I look bigger then I should be and things like that. Honestly the comments didn't really bug me at first but after a while I started feeling like I may just be weird and just get huge quickly. I started feeling a little insecure about my baby bump and I tried to just brush it off and keep going, I was just happy baby was healthy and growing. I asked my Dr at my 16 week appointment if I looked huge. He said no to not worry about it, everyone is different and carries differently. He said I am just a small girl and the bump is just showing. I knew my 20 week appointment I would have an ultrasound that would look over the anatomy of baby and would measure him and then they would be able to see if I was measuring further along or if everything was normal. At my 16 week visit we also decided to do testing for spina bifida, hydrocephalus, and down syndrome.

About a week after I got the blood work done, the nurse called and said some of my tests were a little high for down syndrome so they wanted me to be seen by maternal fetal medicine. She said sometimes the test comes back high if you are having twins, you are further along then what you think, or the baby is in fact down syndrome. So we set up an appointment with the perinatologist and luckily they got us right in so we didn't have to wait for a long time to get some answers.

The day of the appointment came and I was a little nervous about what they were going to tell us, but knew that it was better to know what was going on then not. First thing they did was take my weight and blood pressure. My blood pressure was pretty high which was weird for me because my blood pressure has never been high so that worried me but I was pretty nervous as well so I think that may have something to do with it. Then we went and had an ultrasound. The Tech looked at baby and measured everything it was fun to see our little guy, he is always so active and moving all over the whole time. After about 30 mins of that the Dr then came in to discuss with us our lab results and the measurements of the baby. She said that the baby looked perfect and was measuring right and no sign of down syndrome. She then told us that the reason why my blood work was so weird and came back abnormal is because I have a Complete molar pregnancy with a coexisting live fetus. So what does that mean? Well I have a normal little baby growing, and then I have another placenta, with this growth of tissue pretty much. That other placenta is keeping this tissue or mole alive. So what happened essentially is that sometime during the fertilization process, the egg could have split and one placenta and fetus grew normally and then this other placenta formed but the little fetus never formed so now we are just left with this big ball of tissue. Yeah, Its weird. The Dr said that she has been practicing for 15 years and has never seen this, she has only read about it in textbooks, thats how rare this is. This placenta thinks it is keeping a little fetus a live, when its not really a fetus its what they call a mole. This situation is pretty risky and this is why we were given the option to end the pregnancy and we didn't hesitate to decline. We just saw our little healthy baby, how could we just end that. Why not give him a chance at life. The worst thing that will come from this situation is we will lose our baby and thats what we would be doing if we ended this pregnancy, so why not try and make it?

So what does this mean for me and the baby and what are some risks?  Well The molar pregnancy grows a lot faster then our little baby so when that gets too big my body will say, "oh it is time to deliver" and could start going into labor which when it does that our little baby will not be full term and not really ready to come out. Another thing that can happen is that I can get preeclampsia, or hemorrhage which is obviously dangerous for me and we could lose the baby if it is too early.  The mole could actually miscarry really at any point and then we would have to take the baby.  So really we are wanting this Mole to keep growing and to keep living for as long as possible. The mole also can be cancerous and so after this pregnancy I will have to be on some mild chemotherapy for preventative measures.

The Dr told us that the studies have shown that about 45% of women with this usually will make it to 28 weeks and then the baby has to be delivered. Either my body will go into labor, or its getting too dangerous to go any further.  The babies who were delivered at 28 weeks, about 70% of them lived and were fine. These are also old statistics since this is a rare case, they don't have much information on it.  So our goal is to make it to at least 28 weeks. She feels very confident that if we make it at least to 28 weeks the baby will be fine especially because how great modern medicine is. He will have to be in the NICU for 2-3 months to keep growing and to make sure he is healthy but in the end he will be great. Obviously if I can go longer then 28 weeks then that would be great as well we just have to see how everything is going.

 I am being monitored pretty closely at this point, I will be visiting with the perinatologist every 2 weeks to make sure things are looking ok and baby is still doing ok, as well as my normal visits with my OB, and with an Gyn oncologist because the mole can potentially be cancerous. I am also going to take my blood pressure daily to make sure it is normal, but other than that all we can really do is wait and pray that this mole will stay in a grow and not want to come out.  The perinatologist told me to continue doing my normal daily routines because it will help me get my mind off of things a little more and help time go faster.  She also said that this is why I do look a lot bigger than a normal 19 week pregnant lady, especially because this mole does grow a lot quicker. The top of my uterus is way above my belly button, where at this point normally, it would be either right at my belly button or a little under. So now we have the answer to why Im growing at such a fast rate.

This is a lot of information to take in and to understand, trust me we feel a little overwhelmed and kind of in shock that this is what is happening. Especially because my pregnancy has been very smooth and I feel completely normal. I have had no problems and barely any sickness.  We can only hope for the best and we feel very calm and at ease with the situation and the decision we have made to go as long as we can and keep this baby and we feel like things will all be ok. There is a lot to learn still and there will be many questions that we will have.

We wanted to post this so that all of our family and friends would be able to know what is happening and hopefully we can keep everyone updated a little easier this way. We know that it is all in Gods hands and we trust him 100% and have complete faith in him. We are so blessed to have this little boy doing so well. He is so loved and we want more than anything for him to be apart of our little family. We ask that those of you who would like, if you could keep our little baby in your prayers. We believe strongly in the power of prayer. In advance, thank you all for the support that will be given, we are very blessed with amazing family and friends.  We are grateful for modern medicine and the ability we have to know what is going on and that we can mentally and physically prepare ourselves for what is to come.

If you see me and I look huge, its because well, I am huge!! :) Growing a human and a Mole really makes things interesting.
Pray we can make it another 9 weeks at least!! :)

Mike & Amy