29 Weeks

Well, I made it another week. I know that a lot can change in any pregnancy in a week, make that a day, but for now, for today, we are ok. No protein in my urine, blood pressure was good (for me) and I am feeling a bit more optimistic about making it a bit further. We know the outcome, but my doctor pointed out with clarity today that without intervention (which is what we have chosen) any baby would not survive at this point, so if we want to give him the best possible chance we should continue as long as possible. I asked several questions today. The big question I had of course was monitoring him. My OB today told me that her ultrasound machine did not have the capability to monitor his issues so if we want to monitor him, we need to continue to go to the high risk doctors. Ok, well that essentially answered multiple questions that I think we had already somewhat figured out. The two offices are not communicating very well. She finally received the letter from the high risk doctor a week after she was supposed to. Why that is I do not know, but I think it is probably not personal to just me. When I told her the high risk office said they did not want to step on her feet, she actually rolled her eyes as if that was silly, and it did make me feel better. I asked her if she was concerned about the excess fluid and she said as long as I can breath, she is not too worried. I am ok with that right now because honestly, I enjoyed a visit without drama today. I also know draining that fluid does have its own risks.

We discussed how long I will carry him, she reminded me that if something happens to me I will deliver immediately, but otherwise I think we are aiming for 36 weeks. That is not that far away in the realm of things. Many babies with no obvious abnormalities on ultrasound die in the womb. Approximately 1 in 3000 pregnancies are trisomy 18 babies, but most of those are miscarried very early and thus never diagnosed. 1 in every 8000 live births are trisomy 18 births and 95% of all trisomy 18 babies are stillborn. 80% of trisomy 18 babies are female and of all pregnancies only 1% to 2% develop polyhydramnios. So we are really quite the medical anomaly I suppose. The high mortality rate is usually due to heart and kidney malformations, feeding difficulties, sepsis, and apnea.

My heart skipped a beat today

Today is frustrating, I am not going to lie I am feeling weak emotionally. I called the high risk doctor to schedule my next appointment since we did not end up inducing. I see them for several reasons but part of the reason is the ultrasounds because my regular OB has not done one since we found out about Michael and up until that point she had done one at every visit. I was told originally after Michael's diagnosis they would see me every three weeks. My OB doesn't have the same equipment which is another reason we go to the high risk doctor and today I found out the high risk doctors are releasing me. I assume they are doing this because they can not help Michael and she is capable of caring for me. I know that my OB just 2 months ago sent a lady that gave birth to a baby with trisomy 13 to these same doctors and that baby had more serious heart problems. They saw her on a regular basis and she had regular ultrasounds. So now, what they are telling me is that other than monitoring my blood pressure and listening to his heart, no one is looking at the fluid in my belly, his brain, his heart size or his kidneys. Most trisomy babies that make it to this point often die in utero towards the end. I would really like to meet Michael for a moment and now I feel like I have made the wrong choice for our care. I think somehow Michael has been forgotten. I am still convinced that comfort care is the right choice as I do not want him to suffer. Understand these are the only high risk doctors available in our area and they are located over an hour away so I actually do not have another option.

I am a believer that life is a series of choices and we determine the outcome of our life based on these choices. I have made some bad choices and some good choices, but regardless, the path I take, I have certainly on occasion made my road a bit more bumpy by my own accord. Well, initially I thought, well I did not choose this, but then who does right? That is obviously not the issue, BUT how I handle it is a choice and I have to remember that. I am not a victim, I am being given a choice as to how I will handle this everyday and more choices are to follow. I want to thank everyone for being so supportive and thoughtful and kind, I just can not thank you all enough. This has given me time to reflect and while I know I am going to have down moments and angry moments and moments that I do not understand, I feel some strange sense of confusion today. I need to work on that...

The Nutcracker

I cheated a little this weekend. Morgan's performance as a soldier in the Nutcracker was this weekend. She has been practicing for months, and was so excited and I was already feeling bad about not being there for her - I just could not miss it, so I broke out and I am so glad I did. The bedrest bandit and I paid for it a little the next day but completely worth it. I was careful, just sat and watched and left a little early to go back to the car so I wasn't on my feet. She was so cute and so excited. Bill brought her roses and my brother and sister in law sent her a beautiful floral arrangement and she was certainly the queen for the day. I did get to do her hair and makeup and it was just so exciting. The performance was so festive, it put us all in the Christmas spirit - a little... She actually told me she would have been very sad if I didn't go, so it made it that much better that I did.

Saturday morning Abbi had allstar soccer tryouts and she just found out this morning she made the team. Yay Abbi!!! I always feel guilty when I can't take them to practices, but I know it won't be that much longer in the realm of things.

Yesterday we woke up late (oops) and Bill brought all the Christmas decorations in but since I can't decorate they are still sitting there. At least they are inside now so the girls know we have good intentions. Bill took off in the afternoon to go up to his friends farm for a few hours for some much needed alone time I think. He was running both kids in circles all weekend, and we all need so much from him right now that I think just a few hours of quiet time was needed.

Nothing much today, just hanging out feeling Michael do flips and trying to convince him to turn. I am amazed at how active he has become considering I feel like I swallowed a big water baloon. He must be getting a little bigger...

Breath of Heaven

This has been one of my favorite Christmas songs for years so please do not think for a second I am comparing myself to Mary, but I always cry the first time I listen to that song - every year without exception. This year, it made me cry a little more.

Bill brought the girls home from school early today because Morgan is in the Nutcracker and has dress rehearsal tonight and Abbi is on an allstar soccer team and they have practice tonight. Anyways, they came home and Morgan and Abbi was so excited because a package came from www.stringofpearlsonline.org and I let them open it with me and it was this basket full of keepsakes for making memories with Michael. I received a care package from a friend almost immediately after we received our diagnosis. Her son was stillborn last year and we are pregnant and due around the same time. She sent me a bunch of reading materials for pretty much everyone in the family along with some similar suggestions. I know things will not keep him with us and I know everyday I am pregnant is one day less I have with him, so these things and these gestures mean everything to me. The emails I get from people, are so amazing and I sometimes do not respond but never because I do not appreciate them. I am so thankful for everyone and everything, but still I am on this journey.

Bill asked me what I wanted today - not in a bad way, in a what are we aiming for way, and I answered (funny enough) I want Michael healthy so we can keep him. He is so sweet, he said well, we don't get to keep him so keep thinking. I think a lot...

I formed you in the womb I knew you; Before you were born I sanctified you. Jeremiah 1:5

I get a fair amount of questions regarding our decision to continue the pregnancy with Michael, we are because we feel we are not God and He has to make that decision. While I appreciate everyones concerns, Michael is not suffering. I am uncomfortable, but my health is stable for today, Bill and I have made this decision...together, one breath and one day at a time.

The Birth Plan

So today, my focus has been on preparing a birth plan for Michael. It has to be very specific, what we want, what we don't want for him and for us. The doctors for example do not want to monitor the baby during delivery in case he dies and I think right now I would rather know how he is doing. We know he is breech, so it is going to be very difficult. We do not want them to take Michael for the normal baby things such as ointment in his eyes, but we do want simple measures taken to keep him comfortable such as suctioning. We do not want him to be revived. If he lives then we may want IV's for medication to keep him comfortable such as seizure medication or morphine. I do not want him kept in the morgue, I know at that point he will be gone, but I hate the thought of him being cold and alone, and I just know it will be too fresh for me to be completely rational. I know from being in the hospital already that I really want everyone to know what is going on. So I think I want some type of sign on the door. I certainly do not mind talking about Michael, but I also know that sometimes it is not as easy depending on my state of mind. I really hate feeling like I have shocked or saddened someone. I think (and I know I have said this before) the one thing I will certainly always know in my heart is how precious life is and not that I did not know it before, but I have to walk this walk, I do not want to scare some poor woman that has just found out she is pregnant. I am so blessed to have had three healthy normal and really carefree pregnancies with healthy children as a result. If we have anytime at all with Michael, it is likely to be brief, so I want to make the most of it for all of us.

I am getting very uncomfortable with the excess fluid. It is causing me to have regular contractions every evening and I just wonder if this will cause me to potentially go into labor on my own? Again, I feel guilt tonight. I feel guilty continuing and yet, I feel guilty not continuing. My daughter had a chorus performance tonight and I had to miss it because I am on bedrest - this is pretty complicated...

Roller Coaster

This has been a roller coaster ~ that really is the best way to describe it. I often feel like with three doctors, they have three opinions and they do not always communicate or agree. After not sleeping and worrying and the entire mess inside my head (which is not very pretty right now) I went in today to schedule my induction and... it's not going to happen right now. I am still on bed rest, my blood pressure remains high, but not out of control. Most importantly Michael's heart sounded great and my labs all came back normal. The doctors report from Pensacola last week, never made it to my other doctors office, so I got to tell her my take on the visit and results from last week. I had my sister in law with me and I really think I was clear. I told her one cyst was gone but there was a little more fluid around the other cyst. His kidney dilation did not look worse. His heart is of course a big concern right now, but even that is not "lethal yet", it is enlarged a little bit more and the hole is a little bit bigger. The biggest problem is that his growth has slowed considerably which is to be expected with these chromosomal issues and the excess fluid surrounding him. This doctor also told me that he will likely remain in a breech position because the chromosomal issues also will likely not signal him to get into the correct position for delivery.

I am often asked what our goal is and I can say with more clarity now that I still do not know.

Can we hold him?

The kids just left for school and Bill has a hearing in Pensacola which is about an hour away, so it is very quiet right now. We are expecting some kind of winter storm today, southern style, so no snow, but, cold, wet and windy, generally yuck. I just brought the dogs outside and since I can not walk them, they punish me by ignoring me and who could blame them, they are dogs and I am supposed to play with them and I am obviously NOT doing my job.

Well here is a little rant, I just called my doctors office and they hung up on me three times before they finally answered and then when I asked them if I should take my test directly to them or the hospital, the nurse acted like I was bothering her. Perhaps I am a little sensitive, but it has been a little frustrating with that office. I do not call them very often, I can actually count on one hand the number of times I have called. When I do call, I always have trouble getting them to call back. The first time I was in the hospital, I ended up with a $6000 hospital bill that could have been avoided, but no one would call us back. I called on a Wednesday at 8:00 am and left messages and called back multiple times and finally at 5:00 pm we had to go to the emergency room. This visit was because of the flu and I could not keep anything down. I ended up getting fluids via I.V., but a simple script probably would have prevented the whole dehydration thing. It may be my doctors staff, but it is hard to have this kind of diagnosis and well I MAY be a little hyper sensitive : ). I thought initially it was our circumstances and it would not matter who it was, but my husband really likes the high risk doctors and the staff. It is a completely different feeling when we go to these different doctors, I have to agree. The high risk office answers the phone, calls us back, the genetic counselor actually gave us her cell phone just in case, she set up hospice, just really above and beyond. The ultrasound tech gave us extra pictures and called him by name. Maybe it is because they deal with these outcomes on a regular basis. I also think my regular doctor and her office compare me to this incredible woman that just gave birth to a trisomy 13 baby about 2 months ago. She is absolutely an amazing woman. She had a very high profile pregnancy. Newspapers and a public blog (my husband has not even read mine) and I am glad she did, it is very helpful to me as well, but I am not her and although our outcome is the same, our circumstances are different. Polyhydramnious, bed rest, high blood pressure... I just have a few additional issues and feel like I failed a little by not carrying him as long. Michael is also breech and I am measuring about 5 weeks further along than I am because of the fluid and he is measuring 2 weeks behind.

My oldest daughter asked me what was I going to do after Michael was born. That is a very good question. Do I have to answer that one, or can I have a get out of jail free card for now? I don't know when I will be ready to return to reality, but I know enough to not have expectations. I know I do not want any medication to dull the pain. I know I need to deal with my grief somehow and I know I need to help my girls deal with their feelings as well. I know my husband is broken hearted and he will deal with it completely different than we will. I know my brother and sister in law, have to go through this process and I know our parents will too. It is raw on so many levels because it reminds each one of us that death is very much a part of life. It reminds us how precious our children are. It reminds us how important our siblings are. It reminds us of how grief can be debilitating.

So today, my husband ran my 24 hour urine test to the hospital, my sister in law took Morgan to dance, came back, took me to the hospital outpatient lab for blood work then, made us dinner, my husband came back to the hospital after picking Morgan up from dance and we went to get soup before going back home. Meanwhile, my sister in law has 2 small children and Bill runs a law practice so wow! I can't thank them enough, they are not even complaining. We stopped briefly at the pharmacy on the way home and I walked in with Morgan and a very nice lady asked me when I was due. Morgan looked up at me with a scared look upon her face. I answered her. I answered her and smiled AND I did not cry. I knew what Morgan was feeling though. That feeling of are we being honest? Of course we are. I am pregnant, it is a boy and I am due in a few months. Can you imagine being nice, asking a very pregnant woman an innocent question and she launches into a sad story or worse she cries? Ummm no, see I am getting better, I think.

Michael woke me up with some serious kicks last night and I tried to savor every moment and then as I laid there everything kind of hit me. After each one of my children were born I remember thinking how perfect they were. I remember knowing that absolute unconditional love. I also remember holding them and watching them fall asleep in my arms and knowing exactly how they moved inside me based on all the little stretches they made. Morgan asked me tonight if she could hold Michael when he is born. I had a moment. You know that kind of moment, when you try really hard to answer and not cry. I told her that it was going to be very difficult for Michael to live through labor. She asked again why God wants him back and Abbi told her God loves him so much that he needs him back and then Morgan cried. She then asked me again if she could hold him and I told her of course you can. I told her he will be very tiny. I then told her that he cold hear her and feel her when she touches my belly. She loves to talk to him and they both kiss my belly goodnight when they go to bed and goodbye in the morning when they go to school. I feel so big (and look pretty big too) so I keep reminding them how tiny he really is...