Thursday, October 27, 2011

Another week of appointments

Monday we had another appointment with Neonatology.  This was much more positive than the last meeting.  I even managed to make it through without bawling my eyes out, unlike last time =)  
We discussed how my birth plan is slightly contradicting.  I have that we want aggressive treatment but that we would also like her with us as much as possible.  This of course is not going to be possible if they are aggressively treating her.  I told her that my birth plan is sort of the best case / worst case scenario.  Best case she will only need slight help breathing when she is born and then she will be able to be with Steve and I.  Worst case they aren't able to help her and anything they try would only be doing things to her rather than for her and then we would want her back so she can be with us should she pass.  The middle is all gray.  If she has to be away from us to be helped then of course that is what we want to happen.  Quinn is the boss once she arrives and she will tell us what she needs and where she needs to be. 
Other than that we talked about some treatment options that she might need should she show that she is going to bless us with being around for any length of time.  Over all I am very happy with how the meeting went and the next time we see them will be when Quinn is here. 

Today I had an appointment with my mid-wife.  At 34w3d I am measuring 39 weeks, yikes!  How much bigger can I get?  I am hoping not much!!!  Quinn's heart sounded great and she kicked Theresa as soon as she placed the heart listening wand thing on my stomach =)  She is a feisty one, my baby girl!!

Other than that not much has been going on.  Still so busy I feel like I can't breath.  Saturday is another busy day but Sunday I should FINALLY be able to stay home all day and relax, I hope!!!  Next weekend is Steve and I's weekend at the Ritz!  I can not wait to just hang out with my honey and relax! 

Emotionally I think that Steve and I have both been doing pretty well.  There are still tears that come pretty much daily for me and I still have bitterness that I fight down with all my might but we are doing well.  I did have one day last week that I just couldn't keep it together very well.  Everything that my Bug did just made me think of everything that Quinn won't get to.  Even giving Ash a bath had me in tears the entire time.  My sweet little Bug stood up all wet and soapy and gave me a big hug when she saw me crying.  I must say that I have the sweetest baby girl!  I am so thankful for her.  Without her I don't know where I would be.  She makes me smile even through the tears and there are some days that she is the only one that can do that!!

Physically I have been feeling like crap.  My back is terrible and this child is killing my ribs to the point where when I cough I feel like I need to hold them in place or they will break!  I am exhausted but that is my own fault because I stopped taking my iron pills after they made me sick a few weeks ago.  I did buy some more this past weekend and am starting to try and take them again.  Sleep thankfully is not a problem.  I can't really move very well once I lay down but I am able to fall asleep and stay asleep for most of the night so I am very thankful for that!  Heartburn is also a big issue that sucks right now!  I am popping Tums like candy.  Must be all that hair they say that she has - although her sister had a lot of hair and I never had heartburn like this!!  

Thursday, October 20, 2011

Faking it

Things have been so crazy busy lately. Steve and I are lucky if we have one night a week where we are both at home. I could so use a few days to just sit and do nothing! We both are very much looking forward for our time at the Ritz to do just that, nothing! He asked what we were going to do and I told him I would be perfectly happy to lay in bed all.day.long! I know that we will do a little more than that but honestly, that is all I want to do. I need some down time before Quinn arrives because I don't know what her arrival will bring.
Being as busy as we have been not only makes me extremely exhausted but it also causes a whole other issue. Seeing as I am most obviously pregnant I get a lot of comments. People love babies which means that they love pregnant ladies too. This was one of my favorite parts of being pregnant with Ashlyn, I loved how nice everyone was to me and how they asked about the baby. This is now something I dread while being pregnant with Quinn. 99% of the time I fake it. I just give them what they want to hear. I tell them that it is a girl and her name is Quinn Elise and yes, we are so excited to be expecting another girl, blah blah blah. It is torture but it is easier than telling the truth. The few times I do tell the truth I get that pity look and then the awkward silence. I can't take it so I have to lie and fake being happy and it sucks.
This weekend was especially hard. I went to an overnight scrapbook weekend. It was a fabulous time and I needed it desperately. Just to hang out with friends and family and not think about anything was wonderful expect when I got the comments. Seeing as I was sitting in a room with all woman it was bound to happen that someone would ask about the baby. One lady pointed out that I was pregnant and asked the normal stuff, boy or girl, name…. I gave short answers but what am I supposed to say….. She probably thought it was a little odd but oh well. Another girl asked and just went on and on. She has 3 girls and how wonderful it is and how girly her house is, blah blah blah. I was so close to just blurting it out but I didn't want it to get around the room and then get pity looks from everyone the rest of the weekend. The oddest encounter was after we left the crop and went to dinner at Fridays. It was very late but it was packed. Before we left my sister and I went to the rest-room. As soon as I came out there was a girl sitting at her table who looked like she was just waiting for me. She asked me if I was having twins which I told her no. She seemed shocked. She asked when I was due and finished the question with, "any day now?". I said no that I was not due until December. Her and her friends were all surprised and said again how huge I was. Then she asked me December what. When I replied with December 5th I got the strangest response I have gotten yet… she asked me if she could touch my belly and pray for my baby. Odd. I didn't know what to say so I said yes so she did just that. At this point I am cracking up laughing, it is either laugh or cry so I laughed. She continued to pray and while I am laughing her friend asked me if I believe in the power of prayer. I told her that I did but I am sure she was wondering why the hell I was laughing then but what on earth am I supposed to do? I guess she wanted to pray for her because 12/5 is her birthday day.
I do feel at times that I am doing Quinn and all children with Trisomy a disservice when I don't tell them about her disorder. They aren't really getting to know my Quinn if they don't know they are just hearing about a baby that doesn't exist. My Quinn isn't your average baby and she never will be. She is special and has touched my heart in a way that I never thought was possible and am I robbing these people from that if I don't tell them? I don't know but the look that I see in their eyes when I do tell them the truth makes it to hard to face it. So I keep my secret and let them believe that I am a happy pregnant lady who's only complaint is that her back hurts and her ankles are swollen.

Wednesday, October 12, 2011

Rough night

Yesterday was just one of those days.  I just couldn't shake the sadness that was nipping at me.  As long as I was busy I was okay but sit for one second and the tears were right there.  I made it through work, making dinner, cleaning up, but as soon as I sat down in Ashlyn's playroom to watch her play the tears were right there and I hate to cry in front of her.  I decided that I would leave her with Daddy and take a long hot shower.  I sat in the tub with the hot water hitting me and just let the tears come.   I allowed myself to just be consumed in the sadness.  I don't do this very often because it is very hard to crawl my way back out from the all consuming grief but I needed it last night.  I asked over and over again "why".  Why my daughter?  Why my family?  Why me?  Part of the "why me" is that I hurt.  Obviously I hurt emotionally but I also hurt physically.  Being hugely pregnant is not comfortable and Quinn has been killing my ribs for weeks now.  My back is killing me to the point where I have a hard time lifting my leg at times.  It hurts to try and bend because she is breech and right there digging into me.  I just all around hurt and you know what, it sucks!  It sucks that I am going through all of this physical pain and discomfort and I can't even say that it will all be worth it.  Of course it will be worth it that I will get to meet Quinn but that isn't enough.  I don't want to meet her and then be forced to say goodbye.  Or if we are lucky have to watch her fight for life in the NICU for weeks and weeks.  I don't want this to be my life  I want back what I was SUPPOSED to get! 
After crying for what seemed like forever in the shower I got out and put on a happy face to put Ash to bed.  As soon as she was down I went straight to my bed to cry myself to sleep. 
I know that I have to let myself be sad and cry but it is hard to face everything too.  It is so much easier to go on about my normal life and push the feeling back and try to be normal. 

We met with our counselor again on Monday.  She said that from what she can see we are doing remarkably well and she can really see that we have our priorities where they should be.  Right now that is taking care of us, as in Steve and I.  Ashlyn will always be taken care of but if we do not put an effort into it our relationship will not be.  We decided that once a week we want to do something just the two of us.  I also booked us a room at the Ritz in Cleveland for a night away before Quinn is born.  Once she is born regardless of the outcome we will be so consumed in her and our own feelings that we won't have the time for each other so we need to be sure that we get to spend as much time together now as possible.  Now I just need Quinn to stay put until after our stay! 

Saturday, October 8, 2011

Ultrasound

Sorry to take so long to post, we have been so busy that I just haven't had a chance.  I also needed a little bit of time to process everything.  Overall the ultrasound went really well.  I started out the morning dreading it though.  The thought of going back to the office had me on the verge of an anxiety attack.  I just didn't know how to face the place where my whole world changed forever.  I got up that morning thinking of July 20th.  I remember waking up from a bad dream that morning and telling Steve all about the dream as I lay on the table in the doctors office.  I remember sitting in the waiting room waiting to get called back and watching a news story of a man that lost his entire family when a sudden flood carried their car off of the road.  Steve and I talked about how terrible that would be and how neither of us thought that we could ever go on if we had to live through something like that.  I was so nervous on how I would react when i had to face it all again. 
We got there on Wednesday and thankfully didn't have to wait too long.  Well if you think that a half hour isn't a long time.  Right as they were taking us back Julie, our case manager from Children's Hospital was coming in.  The tech started the ultrasound and then Dr Stewart came in.  From what they could see the omphalocele only contains bowel.  I thought that this would be something that we should be really happy about but the doctor didn't seem to think it really mattered much.  He was really getting on my nerves.  I guess from his point of view even if the omphalocele isn't as bad as it could be she still has Trisomy 13.  I just wanted to celebrate this tiny little victory and felt like he was stealing it from me.   Other than that most everything else looked the same.  She does indeed have a Dandy Walker cyst and that is causing her head to be larger, around the 99th percentile.  She is weighing around 4 pounds and has a lot of hair.  My fluid is on the upper levels of normal and there are no signs that she will come early other than statistics.  So other than Dr Stewart raining on my little parade I had going on because the omphalocele is relatively small, it went well. 

That night I asked Steve how he felt about the appointment overall and he surprised me when he said sad.  I was expecting that he would feel like I did that we had one small victory so this took me by surprise.  I asked why and he said that when Dr Stewart was talking about how much hair Quinney had he sort of looked at him and smiled and it just made him sad.  Of course this broke my heart. 

Tuesday, October 4, 2011

Ultrasound tomorrow....

... I really don't even know how I feel about it yet.  I am slightly nervous but very anxious.  I am afraid of what we might find out but I need to know.  I need to know how she is doing and why I am measuring so big.  I need to know how extensive the omphalocele is and if there is anything else that we need to be aware of before she comes.  I am nervous that he might say something else is wrong.  I have been doing good to keep busy and not dwell on it coming up but as it gets closer I am getting more and more nervous.  I pray that there might be something good to see tomorrow.  I don't know that I am hoping for any improvements but at least nothing else going against her.  I don't think I can take anything else. 

Monday, October 3, 2011

Maternity Photos

Our maternity proofs are online if you care to look.


1. Go to our web site at www.downtownphotoshop.com
2. Click on the Client Proofs  button on the far right side of the home page
3. Click on the file called Portrait Session Proofs (You will need a password!)
4. Click on your file titled  10-1 PF
5. When asked for a password, put in Maternity (Case sensitive!)
I feel like I look more fat than pregnant in the ones where I am sitting but oh well.  I really wish that I liked one that has Quinn's name spelled out in blocks but I look unnatural.  There are some really good ones though and I must say that my Bug is absolutely adorable!  If you look closely you will see that Peepers made it into some of the shots as well.  If you don't know Peepers he is a Meerkat that she loves!  She was totally not interested in getting pictures done though.  I didn't really figure that she would be though, she is just too busy to pose!
 
Let me know what you think of the pictures if you get a chance. 

Saturday, October 1, 2011

October 1

Exactly 2 years ago today my life changed forever.  After a year of trying, many broken hearts, too many doctor visits and tests, and a round of fertility drugs, I found out that I was pregnant.  I was ecstatic and terrified.  I was so afraid that something might happen and I might loose the pregnancy.  I prayed and prayed and prayed that we would have a healthy happy baby.  20 weeks later we went for our "big ultrasound".  I was a complete nervous wreck.  A friend of mine had found out at her 20 week ultrasound that her baby had Potter's Syndrome and that there was no chance of survival.  With this still being very fresh in my mind I was terrified that something might be wrong with my baby as well.  Thankfully, our ultrasound showed a healthy baby girl and we couldn't have been happier. 
When we got pregnant with Quinn everything was different.  We weren't really trying to get pregnant at all.  We figured that it would once again be difficult for us to get pregnant so when we did so fast it was sort of hard for me to take in.  I knew that I was but then I also couldn't really wrap my head around the idea of it.  Our children would only be 18 months apart and that was also hard to imagine.  As hard as it was to accept the idea I was still thrilled that we would be completing our family.  Our plan all along was 2 and done so this was it.  This was my last hurrah. 
When we found out about Quinn's diagnosis I felt guilty and I told Steve that I wondered if it was because I didn't pray enough for her to be healthy.  I was so consumed with fear with Ashlyn that something would go wrong but with Quinn I just took it for granted that she would be healthy.  Everything was so easy with Ashlyn that I assumed that it would be easy with Quinn too.  I didn't beg God to make her healthy like I did with Ash and I wondered if that was why this was happening.  Even after we found out that we were high risk for Down Syndrome I still didn't pray like I had with the first pregnancy.   I know that God didn't give Quinn this disorder because of me.  I know that in my mind but sometimes in my heart I still feel that guilt.  I can't go back and even if I could it wouldn't change anything.  My baby would still have this genetic disorder and I would still be heartbroken for her and for us. 
2 years ago today I became a mom to one baby.  Today I am a mom to 2 baby girls who I love more than life itself.  I would give absolutely anything to switch places with Quinn but I can't.  There is absolutely nothing I can do for my Quinn-bean except love her with everything I have and that is exactly what I am doing.