Prayers for a Friend

Seren's condition remains generally unchanged. Her seizures had slowed down but yesterday they started to come with more frequency again. We still aren't sure what to expect from her. She's six weeks old now and so it becomes more obvious each day that she isn't making the progress of a child without neurological problems. We are going to be able to have her seen by a doctor at Duke that specializes in children like Seren who are born with multiple congenital defects. This doctor is going to be able to help us ensure that Seren lives the most comfortable life possible. We have been told that Seren's life expectancy may be very short. However for the most part she also appears generally healthy so we also have to plan to make sure she gets every therapy possible. We want to give her the best chance at being able to interact with her environment on some level for the time she is with us. She is growing very well and is already out of newborn diapers. She's definitely able to absorb nutrition! G loves going to visit her and asks "see Baby Seren," quite a bit. Going to see her has become one of our regular outings and I'm glad everyone is kind enough to allow me to bring him to visit her.

I'd like to ask your prayers for one of my dear friends who is in labor today with her little boy. We met online through a group of concerned mothers who had pregnancies with potential complications. She has been an encouragement to me throughout my pregnancy and after Seren's birth. Her little boy has a heart defect that was detected prenatally and which may require surgery. Please keep this family in your prayers for a safe delivery and a healthy son!

Pictures

Here are some pics of G kissing his baby sister and Seren having a nice little nap!

G is Two!

Two years ago tonight Grayson was born! My sweet baby boy came into this world six weeks early and amid much drama but he was a tough little guy and he did great. After Gray was born every morning became a childhood Christmas-when life couldn't get any better and yet it still did. I knew then he was a miracle but I don't think I fully appreciated it until recently. He's a delight-a special little kid and I love him to pieces. Since G's birth it has been a long two years for our family but I hope and pray every day that we are creating the best life for him, raising him to be the best he can be and hoping that he will grow up knowing and sharing God's love. Thank you to everyone who made him smile and feel special today. Happy Birthday Baby G! I love you.

Decorating and Little Things

It seems like I'm starting to understand the rhythm of our new life. I still am woefully behind on medical paperwork, bills, and of course, thank you notes, but hopefully I'm getting closer to living as a somewhat functional human being. Last week our big exciting news was that on Friday I was able to go with a dear friend and get Seren's pretty pretty room is all set up at her new home. She's all set up with everything that is pink, green and girly. Maybe I'm biased but I think she likes it. :) Seren continues to do much better than we had anticipated although it does seem that her apnea episodes/seizures seem to be increasing again.

All of her grandparents were in town for big brother Gray's second birthday so she had oodles of visits and love. She was even doing well enough that we let Grayson hold her and got some really adorable pictures. Dad's camera is chock-full of photos I will post BUT I have to wait until his computer gets out of the "shop" in order to get them (anyone notice a theme here?).

Photos!

I've finally gotten some photos uploaded. Grayson has been helping me pick out what which ones should go up. In these she's (1) fussing, (2) chilling, (3) hanging outside with mom and (4) posing in her pretty dress. These are all from weekend before last. I'll have some more recent ones from mother's day eventually (there's still that whole CD stuck in the computer problem we're working out! )

Four Whole Weeks?

I can't believe that its been four weeks since Seren was born-since life as we know it stopped and yet somehow flew by simultaneously. Since Seren can't be here in our home my daily life is generally the same. I get up with Grayson and go through our day. Physically, I feel just like I did last year this time. Its a routine that is entirely wrong. I should be tired from getting up every two hours with a baby. I should be trying to work out caring for both Grayson and Seren at the same time. I should be exhausted in that way that only a truly grateful mother can be-realizing that despite the fact its difficult, exhaustion for caring for your babies is the greatest blessing on earth. Instead, the only place that there's a huge difference is in my heart. I mourn for what Seren has been denied and what she will never experience. I mourn any pain she experiences from living. I wish I didn't know how far people can go to help a friend. I wish that I didn't know there were people that dedicated their lives to finding a way to reach incredibly disabled children in even the smallest of ways. I wish people hadn't touched my own life in such a way that I will never underestimate human goodness again.

I carry emails reminding me that I will see Seren whole one day. That she, just like every loved child whose parents did not get the gift of time, will enter the kingdom of heaven where I can see her-whole and happy. Some days that promise is enough. For now I get to hold her and see her and love her and that is something for me. For her-I hope she knows or feels something. I hope she realizes that she is loved by her parents and her brother and her extended family and friends.

Since Seren has left the hospital she has greatly improved physically. Her heart failure seems to be leveling out. Her coloring is no longer pale but pink and rosy. She has not had nearly as many seizures. She has defied medicine in many ways and I can't be convinced her change is not due to her loving environment. All I can give her now is the best on this earth for her. That gift is really all any parent can give to any child I guess. Seren may be here only a short time or for a very long while. On any given day the only thing I know about Seren is that I love her so much that my heart is broken into a million different pieces. I'm glad she was given to me. I'm glad she's near me. I'm glad I can hold her and smell her and feel her. I'm glad I am her mother. I'm glad I had Mother's Day.

Happy Mother's Day!

Finally a picture! Here's one my dad got last weekend. I'll upload some more later but for right now we are off to let me play with my babies. Happy Mother's Day to all the wonderful mothers out there (especially my own). I love you mom!

Jennifer

Moving Day

Seren had a VERY big day yesterday. She "graduated" from the NICU and is no longer far far away in Chapel Hill. She's right here in Raleigh! We have been incredibly fortunate to find a facility that is close to our home that specializes in care for medically fragile children just like Seren. She has around the clock nursing care by a highly trained staff. We get to provide for her just as if she was in our home-clothes, diapers-all the fun and blessed things a family gets to provide for their new child. We can visit as much as we like, have private time with her and get to her very easily. It is truly an answer to prayer to know that our baby girl is so close to us and so safe and cared for. While we are not with her, (and I know I have said this before) I really do believe that she is being watched over by angels that just happen to walk on this earth.


Although Seren is still in congestive heart failure and her diagnosis is uncertain we are confident she is not suffering. Right now we take things day by day and take comfort in knowing that she is loved and receiving excellent medical care. We are blessed that we have been given this opportunity to know that we are doing everything possible for Seren. We are also looking foward into being able to establish a routine and create the new definition of normal for our family that allows everyone to receive the love and care they need to thrive.

P.S. Speaking of normal....if we can just remove the CDs that Grayson wedged into our computer last night I will be able to post some more pictures of Seren from this weekend. The outcome of that attempt is entirely dependent on Lance's mechanical abilities (I'd feel more confident about the success of that venture if our computer ran on two wheels).

A Very Busy Weekend

Seren's heart is continuing to deteriorate. On Friday night she gave the night staff quite a scare that resulted in Lance and I rushing to UNC. However, baby girl once again proved everyone wrong and showed some improvement. We were able to spend both Friday and Saturday night with her in a family sleeping room at the hospital. During the days. Seren met some more of her "girlfriends", and her primary nurse and I were able to put a bow in her hair and dress her up in some of her cute outfits and blankets. It was fun to enjoy some girly time. Over the weekend we have been able to get in lots and lots of family time with her. Grayson went over to see her again and we were able to get some formal portraits taken.

One of the biggest and best moments of the weekend was that we got to take Seren outside. Since the moment I was told Seren could not see or hear I wracked my brain of a sensory experience I could give to her. The main thing I could think of was for her to feel the sun on her face. I wanted her to experience outside. Yesterday we were able to put her in a snazzy NICU stroller and take her outside to the hospital garden for a while. The weather was perfect and I think she could tell she was somewhere new. I hope she liked it. It was a dream for her we were able to make come true.

We don't know what the future holds, but I feel we have made the most of these last few days. Above all else we have been assured that Seren is comfortable. It is something that gives us peace and allows us to rest. It is one thing for which we can be very grateful.