12-21-13: Brad and I went to Fetal Studio in the mall because we wanted to surprise everyone on Christmas and tell them what we are having! The Ultrasound Tech (who happened to be an OB) took us right back and I laid on the table. The moment the baby showed up on the screen he didn't hesitate to say, "It's a boy!" I was so excited for Mason to have a little brother! A moment later he kept zooming in on his head...then he asked if I had a 20 week anatomy ultrasound scheduled. When I told him we did he said that we should probably go in earlier to have the doctor take a look at baby's head. I asked him why and he only said, "I don't like the way his head looks. It is abnormal and there is too much fluid around his brain." I asked him again what that could mean but he said he couldn't tell me anything because he wasn't my real doctor.
That day was hard. I had never felt so scared and powerless in my entire life. After Mason went to bed that night I asked Bradly to give me a blessing. He did. I felt peace and comfort in a way that words can never express.
12-25-13: We announced to our families and everyone else that we are having another boy! We decided to leave the rest out until we knew what was going on.
12-27:13: I thought I would be anxious and nervous for 10:00 to roll around, but I wasn't. Mason and I just went about our morning as usual. He slept in, I got ready and ate breakfast, woke him up, got him ready, he pooped in the tub, I cleaned it up and we headed out the door. Brad met us at the doctor's office and they took us back right away.
The Ultrasound Tech asked us what had happened and told us she would take a look and let us know if she saw anything to worry about. I laid down and she began looking at his head. Within seconds she told us that he indeed had enlarged ventricles in his brain and there was too much fluid in his head for being 15 weeks along.
I nervously asked her what that meant exactly...
She told us that she was almost positive that he has a disorder called Holoprosencephaly which basically means his brain won't develop. The next thing out of her mouth is something I will always remember, in slow motion, "It is lethal."
My heart sunk. I sobbed.
She ran out of the room and said she was going to see if she could get us an appointment at IMC (the hospital a few minutes away that deals more with high risk pregnancies) right away. I couldn't contain the tears while she was out of the room. Completely heartbroken does not even begin to explain the hurt your heart feels when you are given that kind of news.
She came back about ten minutes later and said that they wanted to see us right away. As we were leaving the ultrasound tech gave me a hug and told me she was so sorry. I sobbed.
I knew Mason wasn't going to make it through another doctor's appointment so I called my mom to see if she could take him. Through tears I asked her if she could watch him and briefly explained the situation. My mom cried with me. She met us at IMC to pick up Mason and just hugged me...a hug from my mom is what I needed at that moment.
Brad and I headed inside, registered with the hospital and took the elevator to the first floor. It was awkward walking through a hospital with tears in my eyes, everyone looking at me like I was a little nutty, not understanding what I had just been told. We checked in and waited for only a minute or two. The ultrasound tech called us back and told us she would be taking some pictures and then the Perinatologist would come in and talk with us. She took pictures of his head and I just laid there trying to hold back tears. She then listened to his heart and just looking at it I knew it wasn't good. This poor baby boy's heart was beating in slow motion...a mere 52 bpm. Seeing her face as she checked it again and again was heart wrenching, I knew it wasn't good.
She left the room and the doctor came in. She sat down and was very straight forward with us. She told us that our baby has some very large abnormalities and asked us if we would like her to explain it in detail. Of course we did.
He has a disorder called A Lobar Holoprosencephaly and it is the most severe form. To put it simply, he has an extra 13 chromosome and the two sides of his brain have fused into one lump (instead of separating into the left and right side), completely surrounded my a large amount of fluid and will not continue to develop. His heart rate was also down so low and that is not a good sign for a baby. She also told us that the brain decides the face and because his brain would not develop, neither would his face. He won't have a nose and his eyes will most likely be fused together. I then asked her how long this baby would live and I could tell that she couldn't give me good news. She paused and said, "With his heart rate so low I would only expect him to be alive for another week or two at the most." I lost it all over again and reality sunk in...
She asked me if I wanted to do a D&C and I quickly told her that was not an option for me. I will let this sweet boy hold on for as long as he wants and then I will deliver him when his heart stops. I will go in for another ultrasound on January 3rd, if there is no heartbeat then our sweet baby will be delivered that day. I realize that this week will probably be the longest week of my life, but I kind of want it to last forever. I want to enjoy every last moment that I have this sweet baby inside of me.
They gave us a couple pictures to take home and told us to take our time leaving. I sat in the bathroom and cried a good cry before leaving...
We got back to my mom's house and delivered the bad news. She cried, I cried and my little Mason sat perfectly content in his highchair eating Ramen. A while later my brother and dad came home from a fishing trip and we sat them down and, trying not to sob, I told them the news. A few hours later we went and told Brad's parents and sisters. Brad's sister Emily immediately sat down and just hugged me. She said to me, "You're an Angel Mommy! Only really special people get to be the mother of an angel." She will NEVER know how much those words mean to me.
12-28-13: Last night I didn't sleep. I laid awake crying most of the night and the rest of the night I was up with Mason who just doesn't sleep. Today I decided that I need to write down exactly how I feel about everything that is happening...
I am heartbroken. I am devastated. I am sad that I won't get to take this sweet baby boy home with me. I am sad that I won't get to hear his little voice. I am sad that I won't get to smother him in hugs and kisses everyday. I am sad that Mason won't get to have his little brother here on this earth with him. I am crushed that he has a brain disorder that is going to kill him. But I also feel privileged to be his mother. He is perfect. He only needed a body for such a short amount of time and now he gets to return to the loving arms of his Heavenly Father. He was so valiant that he didn't need to be tested here on earth, he has a one way ticket to the Celestial Kingdom and I get to be his mommy! I am so grateful I followed the prompting that we were supposed to have another baby. It was not in our plans, it was in Heavenly Father's plans. He knew that this baby boy needed his body RIGHT NOW. And he also knows WHY it needs to be right now. He has a bigger and better plan for him on the other side. I cannot be angry or upset that this is happening, instead I am choosing to look at the bigger picture and KNOW that I will get to raise our sweet boy one day, just not today. I truly believe that Heavenly Father will not give us something we cannot handle so I know that I can do this. It won't be easy and I won't be able to do it alone, but eventually I will feel peace. For now, I am sad and that it is OK. I am grateful for the Gospel and the knowledge I have of the Plan of Salvation and I am so grateful to be sealed for time and all eternity to my family. I am so blessed to be married to such an incredible man who knows just how to comfort me at a time like this, who is so much stronger than I am. I am thankful that he is a worthy Priesthood holder and I am thankful that he knows how to handle this. He must be pretty incredible to have a perfect little sister and a perfect son. Together, we will get through this.
12-29-13: I had a dream last night...a dream that seemed so real...a dream that I felt my sweet baby boy move inside of me. I woke up in tears because it felt so real. I think that Heavenly Father knows how badly I want to feel him move so, in a way, he let me.
1-2-14: Tomorrow is the day. Today could be my last full day of having this sweet boy inside of me. The closer it gets, the more it sinks in and the more nervous I become. Luckily, I have been blessed with an incredible family that has helped make this process easier.
My mom is amazing. I don't know how else to put it. Every single day this last week she has made sure that I wasn't alone. If Brad had to be at work then I was over at her house. She listened to me bawl, she gave me some incredible advice and made me the yummiest dinners. It has been so good to be able to just spit out everything I am thinking and feeling and have my mommy there to listen. Last night we were heading home and she sent me with a bag full of leftovers for the next day. When I got home I received a text from her telling me to make sure I emptied that bag. Part of me wondered how on earth she knew I hadn't done it yet, until I opened the bag. There, sat a small white box. I pulled it out and opened it. In the box, folded ever so neatly, was a tiny blanket she had made for this sweet baby boy with his name embroidered in the corner. She also wrote me a very sweet note, one that I will keep forever. I truly do not know what I would do without her.
Tonight was also special because I received a phone call from Grandma Bowles. Years ago she had a similar experience and gave birth to a sweet baby girl that did not live. She told me her experience and let me know that it was going to be hard, but Heavenly Father needs this boy on the other side. She also told me to give myself time to heal, both physically and emotionally. It is nice to hear that it is OK to take my time to feel better about everything. I am so blessed to have gained this incredible woman as my Grandmother when I married Brad. Her words mean so much to me and I love knowing that she will be waiting with a hug for me when this is all over.
1-3-14: When I climbed into bed last night I sobbed...I told Brad that I wasn't ready for this to happen, for it all to be over...
When I woke up I knew it was going to be a long day. I kept myself busy and tried not to think too much about it so I didn't have a breakdown...
I purposely didn't put on any mascara.
We arrived at the hospital a few minutes early and I could feel my heart pounding...I wasn't ready for them to tell me that our sweet baby was no longer with us. The ultrasound technician called us back and I was sure my heart was going to beat right out of my chest. I laid down on the table and felt the warm jelly being squirted on my belly.
There he was.
I quickly asked her if his heart was beating and she told us it was!! My jaw dropped and so did Brad's and I felt relief...not something I was expecting to feel. Not only was his heart still beating, it had doubled since last week and was up to 109 bpm. Still not a good fetal heart rate and the prognosis is still the same, but I get to keep him with me for at least another week. The tech also did a 3D ultrasound and we got to see his face. With his disorder his face should not form -- eyes fused as one, no nose, cleft palate, etc., but our sweet boy has a perfect face and I about cried just looking at him on the screen, all snuggled up. The further along I get, the less his face will form, but for now, he looks perfect.
After the ultrasound my doctor came in to talk with us. She was baffled that his heart was still beating and couldn't give us a medical explanation as to why.
I am so thankful that my Heavenly Father is allowing me to hold on to my baby boy, even for just one more week. There are no words for the love I have for this little boy and I am just not ready to let go (Who am I kidding? Will I ever be ready?).
My sister-in-law, Emily, sent me a text and gave me a different perspective on things. She said that maybe he isn't holding on because I want him to, but because he wants a little more time with his mommy. I'd like to think he wants to spend just a few more days with me.
So, for now I will continue to enjoy every moment of being pregnant, realizing that it will end sooner that I had hoped, but knowing that this is all part of Heavenly Father's plan, things will work out and I will be OK.
1-8-14: Something about this last week has been different. Leading up to last week's appointment I was nervous and not really ready for it. This week I feel a little more OK.
At the beginning of the week Mason would constantly lift up my shirt, kiss my belly and then have a conversation with it. Melted my heart. The last couple of days have been different.
I was changing his diaper right before bed. He was half asleep when he suddenly jerked his head and looked up just over my shoulder. He very calmly just started waving and wouldn't stop waving. Of course I looked up over my shoulder and didn't see anything so I asked, "Is someone up there??" Without any hesitation, Mason responded, "Yeah." The very next day he was sitting in his highchair and Brad and I asked him where his baby was. He looked over to his "time out" stool, pointed, then waved. Moments like those make me grateful that the veil is still so thin for him.
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1-10-14: Yesterday we had another doctor's appointment. We anxiously waited for an hour before they called my name. The nurse took us back and said they were just going to listen for a heartbeat with the doppler. She tried to find his heartbeat for a few minutes with no luck. I had prepared myself for terrible news and here it was. I was surprisingly calm, but I could see that Brad was not OK. The nurse then told us that they had to be sure so we needed an ultrasound. She walked us back to the room and I laid on the table (I know the drill by now...this would be my seventh ultrasound in 17 weeks), the doctor turned on the screen and I immediately saw his heartbeat - slow, but it was there. Suddenly, my emotions went from one end of the spectrum to the other, from feeling complete sadness to pure joy. My baby boy was still in there, holding on as best he can! His heart rate was only at 64 bpm, but the doctor told us that a baby this small doesn't need a fast heartbeat to keep them going. Because his brain stem is completely in tact, he is receiving all the oxygen he needs and my placenta is working perfectly his heart may continue to beat for awhile...even up to full term. However, they cannot be sure. Our baby boy could let go tomorrow, hold on for a couple more weeks or even make it full term. No matter what, he will not make it and that is still hard to swallow.
Leaving the hospital I cried in the elevator and cried the whole way home. This experience is emotionally exhausting.
1-12-14: There is such a special sweetness in being able to feel your baby move inside of you. I think even more so because he is on borrowed time. Today, while sitting in sacrament meeting, I felt a very distinct kick. I could not contain my excitement and leaned over and told Brad, neither of us could wipe the smiles off our faces. Being told that I wasn't going to be pregnant long enough to feel him move and then feeling him move seems, to me, a miracle. I am so grateful that I have the opportunity to feel our sweet boy kicking before this experience is over. It is hard knowing that I will never get to see him move around, so feeling him inside of me gives me a feeling of peace. At least I get this, for however long it lasts.
1-15-14: Another day, another ultrasound. This time they completely skipped the doppler and took us right back for an ultrasound. The ultrasound tech was a very sweet older woman and she took her time with us. She started the ultrasound and there he was, still hanging on at 104 bpm. We got to just sit and watch him wiggle around and he even waved. I love being able to watch him move around. I never knew I could feel so privileged simply watching him move his arms and legs. Never again will I take the small things for granted...
When my doctor came in she sat down and still seemed shocked that he had a heartbeat. I asked her to confirm again that our baby boy was brain dead...that his umbilical cord was life support. She told us that was correct.
After she answered all of our questions she told us something that was tough to hear...the longer I am pregnant, the more dangerous it is for me. No matter what I will have to be induced using a special drug (different from Pitocin) and because I had a C-Section only 18 months ago there is a very good chance that my uterine scar will rupture. This drug (Cytotec) doesn't induce normal labor...it makes the uterus contract and stay contracted making it dangerous for me. Once I am 20 weeks pregnant it becomes even more dangerous...almost certain that the scar will rupture. She reassured us that it didn't matter if we induced today or four months from now, our sweet baby boy would not make it. He will not be able to live outside of the womb.
We left with a lot to think about...
18 Weeks Pregnant ~ My last belly picture
1-16-14: Brad and I decided that we need to listen to my doctor and make sure we are also thinking about my health and safety throughout this process. I called and made an appointment and my doctor was relieved. I will be induced on Tuesday.
1-21-14: 8:12AM I received a phone call from Labor & Delivery at IMC, they were ready for me to arrive. It hit me, this is really happening. We packed up all the bags and headed over to my mom's to drop off Mason. My mom gave us one last hug and we left. By 9:00am we had arrived and I was feeling OK with following my doctor's advice, just sad that this was going to be my last day (for awhile, anyway) with my sweet boy. We walked into Labor & Delivery and they took us back to our room. The nurse tried starting my IV, but after about five full minutes of fishing around under my skin she couldn't get it. I looked at her a few times with the look of, "What on earth are you doing to me?" and I am sure she was feeling the pressure. A few minutes later another nurse came in and got it on the first try. Thank goodness.
Shortly after they started my IV my doctor walked in the room. She sat down and asked me if I had any questions and let us know exactly what was going to happen that day. I asked her if Brad could cut the cord and if we could hold our sweet baby the moment he came out..she began to cry and I cried with her. She told me that she would do whatever we wanted, that this day was all about us and she was going to do her very best to make it as least traumatic as possible.
By 10:30am they had given me the first dose of Cytotec pills and then we waited. My doctor estimated that it would take between twelve and eighteen hours for the Cytotec to begin giving me contractions. Fifteen minutes later I was already feeling some very light cramping and a lot of protesting kicks from my little boy.
2:30pm the nurse came in, checked me and gave me my second dose of the drug and we waited some more. This time I was feeling quite a bit more uncomfortable and could feel the contractions getting stronger. The nurse kept asking me if I wanted something for the pain and I kept respectfully declining. I was not going to have an epidural.
While we waited for another four hours to pass we had a lot of visitors. Four different doctors, countless nurses and CNA's, a social worker (who was wonderful to talk with) and the bereavement coordinator. My nurse brought me a few gifts (I HIGHLY recommend the book, "Tear Soup" for anyone who has experienced loss) and the bereavement coordinator told me all about how they would take our baby boy and create molds of his hands and feet for us. I couldn't believe how sweet everyone was and how delicately they handled the situation. Somehow, they made the day seem a little bit easier...only a little bit.
6:30pm my nurse came in to check me and said that she could tell by the look on my face that my contractions were doing something, but they weren't showing up all that well on the monitor. She checked me and the look on her face was complete surprise. She slowly said, "All I feel is a bag of water!" She paged the doctor to come and check me and when she did I was fully dilated and the bag of water was still in tact (which they wanted it to be for delivery) and had started hour-glassing it's way through my cervix. My thoughts? "HOLY CRAP! So much for twelve to eighteen hours for this stuff to start working!"
The doctor decided to do an ultrasound just to see what was going on and we got to see our sweet baby's heartbeat. It was just barely beating...but it was there.
The nurse gave me one more dose of the Cytotec to try and speed things along - my doctor didn't want me to suffer through labor too terribly long. She asked me again if I wanted something for the pain and again I declined, I was doing this on my own.
8:30pm my doctor came in and checked me and said that I was indeed fully dilated, but our baby had not moved down any further. She wanted to give it another couple of hours to see if my body would help him come down. So we waited.
Within the hour my contractions became much worse and I could feel much more pressure in my "hoo-ha." I paged the nurse and asked her to come check me. She walked in quickly with my doctor and they told me it was time to start pushing. Oddly enough, pushing felt so good, almost a relief from the pain. My doctor had to break my water because he just wasn't coming down any further. The moment my water was broken everything became more intense! While I was pushing they put some pain medication in my IV, but it didn't start working until after I had pushed him out. I was glad it didn't because I am grateful that I got to experience feeling him be born.
9:36pm our sweet baby Lincoln was born. Dr. Heuser quickly checked for his heartbeat but he was already gone, back in the loving arms of his Heavenly Father. She let Brad cut the cord and they gently placed Lincoln on my chest.
I sobbed. Brad sobbed. And in that moment time seemed to stand still. Our little Lincoln was perfect, absolutely perfect. My doctor grabbed his little blanket and helped us put the diaper and hat on him that my mom had made for him. They were a perfect fit. I could not seem to control my tears, this was the most bittersweet moment of my life. Bitter because I knew he wasn't coming home with us and sweet because I knew exactly where he was. Everyone left the room and we sat, soaked in our tears, holding our baby Lincoln. I didn't know what else to do besides cry...my heart was broken. My body physically ached and all I could do was hold him, kiss his tiny head and tell him how much I loved him.
Awhile later my doctor came back in the room and told me that I needed to deliver the rest of the placenta. Sometimes when being induced before full term the placenta will not detach making it hard to deliver. I handed Lincoln to Brad and began to push again. After trying everything...including my doctor's hand (easily worse than child birth), she told me we had to do a D&C.
They told Brad that he could not be back there while I was in surgery so he stayed in our room and had some alone time with Lincoln. I am so grateful he was able to spend almost an entire hour with just he and Lincoln, I think it was the best thing for him.
In the OR they gave me an epidural and started the D&C...a very weird experience. About ten minutes later my doctor was finished and told me everything went great. I was wheeled back into my room after they cleaned me up and there was Brad, sound asleep, with Lincoln laying on his chest. My doctor and I both began to cry. He is the sweetest daddy I know.
They left again to give us more time with Lincoln and as 2:00am rolled around Brad and I decided that it was time to hand Lincoln over to the nurse...for good. We knew the longer we waited, the harder it would be and we didn't want to jeopardize any autopsy results. The next time the nurse came in we slowly told her that we felt it was time to hand him over. She was so sweet and asked us if we were sure, I could only nod my head. As she gently lifted Lincoln off my lap and walked away with him I wept. I completely fell apart and my sweet husband just held me. I will never forget that moment...
My sweet nurse gave us the time we needed before wheeling me up to the Mom & Baby Unit.
3:00am I was finally in my room, they let me eat and I passed out. I was exhausted...more so emotionally than physically.
1-22-14: I didn't sleep much, I don't think anyone sleeps in the hospital. Being poked and prodded every fifteen minutes makes it hard to really sleep.
6:00am I woke up and the nurses checked my vitals. My blood pressure was 104/42 and my nurse had a minor heart attack. She made me sit up to try and get my blood going. I had to remind her (again) that I have low blood pressure and I had just been asleep so of course it was going to be lower than usual. They brought me breakfast at 7:30 and I didn't touch it...hospital food sucks. I let Brad eat it and he went and bought me breakfast from the cafeteria.
That morning Brad and I talked about the night before. We are so grateful that we were able to spend so much time with our sweet Lincoln. I will always cherish those few hours, knowing that was the last time I got to hold him until we meet again.
My doctor discharged me that morning and told us to take our time leaving. We had my mom bring Mason to the hospital because I was having a hard time being away from him...I just wanted to hold him and give him a love. When he walked in he gave me a very concerned look and walked right over to Brad. He didn't like that I was in the hospital bed...it is like he knew something sad was going on. A few minutes later I got up to use the restroom and he finally let me hold him, I just needed to get out of bed I guess. A hug from my Mason almost brought me to tears.
Around lunchtime we left the hospital and headed home. I felt empty. I felt as though I had left a part of me behind and my heart hurt.
When we arrived home Mason was already asleep so I went upstairs and we laid in bed and took a much needed nap. Mason woke up a couple of hours later but Brad took him and just let me sleep. I needed it.
The rest of the night I just wanted to hold Mason. He went to bed at 6:45pm (still exhausted from all the playing he did at Grandma's) and I finally got to shower. I sobbed all over again...I miss my sweet baby Lincoln.
I climbed into bed and cried myself to sleep.
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