Monday, January 25, 2010
I'm going to have an ultrasound every other week and on the weeks that I don't have one they will do an NST. I feel much better about this, and everyone that is on my case and the palliative care team are meeting with me tomorrow after my ultrasound to make sure that we are all on the same page and that my wants and desires are being heard. I'm so glad that they will be checking him weekly rather than monthly so any change can be seen right away. His heart rate was around 130 today (was 150 on Friday), but it is still sounding good, and my blood pressure has gone down. When they did the ultrasound on Friday he was measuring about 22 weeks and was a little over 1lb, but most of his anatomy is measuring in less than the 3rd percentile and that percent has been steadily declining as time goes on. They will keep monitoring his growth, but it probably won't increase a lot because he only has one umbilical artery. I am so glad that everyone on my case is communicating better and we will all be meeting. If everything goes well and Eli keeps staying strong we will meet him in about 3 months, I pray this is the case!
Posted by LC at 3:31 PM
Friday, January 22, 2010
My appointment today was a complete disaster. First, when we arrived we were told to meet with the financial adviser to go over the costs of delivery. When we sat down in her office she told us congratulations and asked when I was due, obviously she had no idea what was going on and it was a little upsetting. The tech that did my ultrasound was one we had never met before, so she was seeing everything for the first time. I kept asking what she was seeing and if there was anything new that was appearing, and she never really told me what was going on. Then halfway through my appointment the power goes out, and to top it off when the backup generators turned on the fire alarms went off. We were herded down some stairs and into a hallway where we sat for about a half hour not knowing what was going on. People started leaving and we were told to call in on Monday and reschedule, of course we were not going to wait until Monday to find out what was happening. We finally found a nurse who knew us and she found the peri who did the echo at 20 weeks.
The tech. had left for the day and the computers were down so they were unable to know what was seen during the ultrasound. After talking to the peri for quite a while we were basically told that I have no choice but to carry Eli until he passes away or until I hit full-term. He didn't think that Eli was sick enough for me to be induced, and that would probably not change. This was really upsetting for me to hear and believe especially because I have hardly felt any movement, my blood pressure was higher, and if Eli were any worse he would not be alive. A lot of this has to do with politics, the hospital does not want to take the legal risk of inducing me because they don't want it to be considered a "termination," even though it would have the same outcome if we did it at 37 weeks.
We will be meeting again next week and probably do another ultrasound, but from the looks of it, I will have to either wait until Eli passes away or am induced in May to meet him. I was extremely upset after hearing all of this because it was not what I was told two weeks ago. Had I gone in yesterday I could have been legally induced, but since I hit 24 weeks today, that is no longer a possibility. I am devastated and I have no idea how I am going to get through the next 3 or 4 months. Thanks to everyone who was thinking of us today, I appreciate the support, and will definitely be needing it for the next few months to come.
Posted by LC at 4:38 PM
Thursday, January 21, 2010
In 24 hours I find out if I will be meeting Eli. I have a million things that I could be doing today, but instead I am just sitting around thinking and waiting. We want to have some type of funeral or service once he is gone, I should probably start planning that so I don't have to worry about it once he arrives. A local funeral home will be paying for everything, including a plot in the cemetery that is for children and babies who have passed. I think I will want this closure, but I am 20 years old, I shouldn't have to be planning a funeral for my own child. I wish I knew what was going to happen tomorrow, the anticipation is starting to make my body physically and mentally weak. I have no idea what I'm going to do if I have to wait another month to find out how this will end, I'm afraid it will put me over the edge. For right now I am going to try and stay busy. Through all of this I have picked up the hobby of photography, and I honestly think that it has helped me. Something about the art of capturing a moment and being able to keep it visually alive has given me a way to express my emotions when I don't know how to otherwise. I still am unsure of whether or not I will want to see photographs of Eli and his birth experience, but I will have them taken so that the memories are there if I ever want see them. Thank you for all of your support, it is truly heartwarming to have so many people surrounding me at this time in my life.
Posted by LC at 11:46 AM
Friday, January 15, 2010
By this time next week I may be preparing to meet Eli. I'm so incredibly nervous, and I don't know how I'm going to get through this next week. I feel sick to my stomach, I can't sleep, I can't eat, I just want to know that all will be okay. I hate the unknown. A part of me wants Friday to come quickly, but then a larger part of me doesn't want it to come so I can cherish every last minute I have feeling Eli inside of me. Either way I won't be getting good news on Friday, it will either be time for him to come (and go) or it will be more waiting and not knowing. Sometimes I still think all of this is some horrible dream that I will eventually wake up from, and I wish that were the case. I don't know what to do in the next 7 days, what are you supposed to do? I don't want to wait for my son to pass away, I don't want to go through anymore pain, I just want a healthy son.
Posted by LC at 10:23 AM
Thursday, January 7, 2010
My appointment today was bittersweet. Eli's heart rate is doing well and has gradually lowered to 150. I am measuring on the small side, I should be measuring around 22 weeks and am currently measuring around 17 weeks. This could mean that his growth has slowed down or even stopped since my last appointment. I will be having an ultrasound in 2 weeks when I will be 24 weeks along, which is the viability date. If the peri finds a medical reason to induce me, which is likely, we will go ahead with the birth. They are hesitant to say whether or not he will make it through the labor, which is probably going to be very long and strenuous, but we are praying that he will survive and we will be able to spend some time with him while he is still living. If there is no reason to induce we will wait a couple weeks and go back in for another ultrasound, repeating the process until they find a reason. I am feeling a little relived that we have somewhat of a plan, but I am also sad and anxious. Knowing that I may only have a few weeks left with my little boy is such a strange feeling, but I want to cherish every last minute I have with him. I pray that he stays strong. I hope that I will be able hold him while he is still living, I want to hear him cry, I want to feel his warmth. No matter what happens in the next couple weeks, I will embrace him and love him. This little boy has changed my life and I am so blessed to have him, even if it is for a short amount of time.
Posted by LC at 5:22 PM
Wednesday, January 6, 2010
I feel so bad that I haven't been updating this blog. I haven't even taken a belly picture for a few weeks. I think this has to do with the news that we heard at my last ultrasound. It is so hard for me to think about what is going on with Elijah. I used to picture him in my mind as I fell asleep at night, and now I don't even want to have the image of how he really looks in my mind. Does this mean I love him any less? I don't think so.I still picture how he would look without all of his defects, and this is the image I want to keep in my mind. I have an appointment tomorrow to start going over my birth plan for when he arrives. We still have no idea when we will meet Eli and whether or not he will be alive when we do, and this is absolutely killing me. I hope to update more often, and will try and take another belly picture soon, I think in the future I will want all of these keepsakes.
Posted by LC at 9:34 AM
After several ultrasounds and two CVS tests, it was confirmed that our son, Elijah, had Trisomy 13. He had several defects such as extra fingers, cleft palate, no lenses (eyes), enlarged kidneys, two vessel cord, the right side of the heart appeared to be larger than the left, and a few more things. Although Eli had many complications, he was both perfect and beautiful to us. He has opened up our hearts to what love truly means. We were not sure if he would make it to term or through labor. Around 35 weeks it became obvious that Elijah's growth was slowing down. I was induced at 37 weeks, and Elijah Alexander was born at 2:30 am, April 25, 2010, weighing 4 lbs. 15 oz. He was absolutely beautiful. He lived for 12 beautiful hours, and at passed away peacefully at 2:30 pm, April 25, 210.
- I have such an amazing family, I am so blessed. My husband Jon and I have a beautiful daughter named Dylan who is constantly making us smile. We also have a son, Elijah, who has changed our world and touched our hearts. Even though he is an angel now, we will always embrace and celebrate his life.