Monday, March 23, 2015

Just hatched

 photo 1February 2015 010--birth announcement_zps4wepxrxr.jpg
Our sweet Penelope Mae is now 9 weeks old. I can't believe 2 whole months have come and gone. Our little baby is just as easy as ever. When we brought her home from the NICU she slept through the night the first night. We thought it was a fluke, but she has slept through without waking once from then on! She goes to sleep with us at about 1030-11 and wakes with us at about 7-730. It is amazing! Of course I get up to pump every few hours and to send her food through the feeding machine she is still on, but all the while she stays asleep. 

Penelope rarely cries, and sleeps quite a bit off and on from wake up time to about 3-4 in the afternoon. From 4-bed time she is awake most of the time. By the time 7pm rolls around she will cry a few small sweet cries, because she is over stimulated by her surroundings, and sisters. She continues to be tired, and can't get herself to really fall asleep until we do. Her fussy time is from 7-11pm (if you could even call it a fussy time) She is one word. easy. finally I have a baby that is truly easy going. If you know me you know that the newborn stage for me is really really hard. Both of the girls were colicky for the first 4 months of life. I am so thankful that Penelope is so sweet and easy, because if she weren't my life would be so much more complicated. 

 photo 1March 2015 226--_zpsc2dcbsrf.jpg
We found out through testing that Penelope has a rare chromosomal abnormality called uniparental disomy 20 (UPD) which means that on her 20th chromosome she received two chromosomes from one parent (we don't know which of Adam or I yet) instead of one from each. We have no idea what this could mean for her since it is so rare. we have an appointment to meet with a specialist at Stanford June 22nd, and can hardly wait to know more information. 

People ask me all of the time how I'm doing, and really I don't know. Some days I am fine, and I think she will be just fine, and some days I'm just not sure. I wonder will this mean she will be slower than average? or will she function on an average level? I have no clue. I have tried finding information online as to what to expect, but there is very little out there, and the things I do find are general. The not knowing scares me, and I worry for her daily. 

 photo 1March 2015 238--_zpsenp7ofnn.jpg
I do feel so blessed that she doesn't seem to have anything wrong with her body. Her heart and organs run smoothly, and she has never had seizures or anything like the other chromosomal issues people have. The thing that worries me is that she doesn't have a strong desire to eat, and that her intake by mouth is hit or miss. Sometimes she absolutely loves to nurse, and will do it for 20 minutes or more. Then sometimes I can't get her to even open her mouth. When she does nurse it is very weak, and doesn't pull out much. I pump every three hours to provide her milk, and I plan to try to keep my milk supply high just in case she starts to really nurse, and be able to wean off of the ng tube. We have no idea how long she will be on it, It could be 2 months or ten?! I wish I could understand what is happening with her. 

 photo 1February 2015 010--_zps4g76f5ec.jpg
Do you remember THIS post? I really should trust my instincts on things more. I was right to feel worried this time around. Not that the worry really did any help, because I have been very surprised at the outcome of all of this. 

 photo 1March 2015 271--_zpseajotku1.jpg
Also THIS post?  "In a healthy pregnancy I usually get sick around six weeks on the dot. and the sac was measuring at only 5 weeks, They questioned if my dates were right, and I am 100% sure they are. They didn't think the pregnancy was going well, nor would it progress. They scheduled me in for another ultrasound 1 week later to confirm miscarriage and I went back in feeling a bit more symptoms but the pessimist in me was not hopeful. This time the baby and sac were bigger, and there was a heartbeat!! but  They found that the Baby is measuring a bit small (like Piper did) and the sac did not look good. She told me that when this happens it usually indicates a chromosomal abnormality and the body often times rids itself of the baby. She also said that she has seen it go both ways, and I could continue to carry the baby with possible abnormalities or  with nothing wrong. "
 photo 1March 2015 016-_zpspyjlsxjy.jpg

I remember at that time that they thought I would lose Penelope I said a prayer, and begged Heavenly Father to please let me have this baby, I wanted her no matter what was wrong, I would love her no matter what. I have my little miracle, and I feel so happy that I have been so blessed to know her. 

 photo 1February 2015 019-_zpsce0kdiy4.jpg

I always worried about Penelope. I knew something seemed off, but really didn't believe it. I knew there was nothing I could do, so I just tried to ignore my constant worry. I never really knew something was actually wrong with her. This has taken me by surprise. I wish I knew what to expect, but until I do I will just enjoy how perfect and angelic she is, and how lucky I am to have her here with me.  

1 comment:

  1. What a sweet little thing! I think about your family a lot and wonder how you and she are doing. I hope all works out for the best! I love your maternity pics from the previous post! What a beauty you are!