This Way and That

For some reason this week I have been thinking a lot about a roller coaster Lance and I rode somewhere (I can't remember where exactly) that was indoors so you couldn't see where the ride was going. When the ride started, it jerked you from side to side instead of the up and down motion I had expected. It was an odd sensation. This last week has been a lot like that ride. We can't see exactly where we are headed and we keep getting pulled in all sorts of directions.

Seren's condition generally remains unchanged. She has had a few cardiac episodes that are most likely seizures. We know that this development is not encouraging for a long term prognosis but we have no definite information on exactly in what way she will be affected. Since we don't have a clear picture of what is going to happen physically, it has been incredibly difficult to put a plan in place for her long term care. However, should she be afforded the chance to leave the hospital, we have had a truly miraculous door open for us. Without going into details right now, I'll just say that I am now convinced that angels walk this earth. As we wait to see what the future holds, I cherish my quiet mommy time with Seren and the moments we spend with her.

G is doing well. We have been able to keep him on his schedule. I'm grateful for both his Mother's Morning Out program and his wonderful babysitter. Both of these outlets have allowed him to maintain a sense of normalcy and allow Lance and I time to focus on Seren.

We are growing fat on all the delicious food that regularly appears at our door and which helps even more than I can say (especially when we sprint into the house back from the hospital right at dinnertime). I won't mention any one person specifically in this blog since its a public forum and since I am afraid that I would forget a thank you and cause offense to someone inadvertently. As it stands, I will be writing thank you notes for the next ten years.
I always knew we were surrounded by wonderful and amazing people but the miles and miles (literally and figuratively) that our friends have gone for us and our beautiful baby girl are astonishing. Thank you. Thank you. Thank you. We love you dearly.

To everyone who has called or emailed-thank you. We try to keep up and respond to every communication but right now we are just not able. People have told me they are worried they won't find the right words or are worried they will upset us. Please know that just hearing from people is encouragement. I promise that every communication that we have received has touched, helped, aided and assisted us in this journey. We feel the prayers for Seren and I believe she can too. Thank you for your care and concern and for taking time to read about our precious baby.

Peace and love,
The Windleys

Scheduled Delivery

Today was the day Seren was scheduled to be delivered. I thought I would spend the last two weeks getting her nursery ready, preparing G to be a big brother and trying to rest. Clearly life had other plans! Seren continues to surprise, amaze and confound us. She had a busy weekend-she got to meet some girlfriends AND her big brother (who, for the moment he saw her, really seemed taken with her). She got some more grandparent time and lots of excellent medical care. Her physical prognosis remains uncertain. We have been told to plan for her future in slightly larger blocks of time than what we were told initially. Beyond that information we still are unsure of what to expect.

Although (for today) I won't begin to attempt to properly express how grateful we are for the love and care we have received in the last two weeks I do want to say how comforting it is to know for certain that our entire family is loved and prayed for. Thank you.

Yesterday when we went to the NICU to visit Seren we could tell her condition had deteriorated. We were told that she had a few respiratory episodes and a chest x-ray showed that her heart is enlarged. Her Doctor's are concerned that this will likely have a significant impact on her life expectancy.

In light of Seren's worsening condition, we decided to have her baptized as soon as possible. We emailed Bill from our church last night and he was kind enough to come to the hospital this afternoon to baptize our little girl. Both sets of grandparents were able to attend and make the event a special family occasion. I can't describe how much it meant to us.

I was feeling sad all morning, but as we started to celebrate her baptism I realized that this is Seren's life and that we shouldn't have her live it surrounded by fear and sadness. As parents we don't know how long any of our children might be with us and a mother's job is to give her child the best life possible in the time given. That is what I will do for Seren. Today, in celebrating an important part of her childhood, I was happy. I felt joy for her. I hope she felt love and joy too (and I know I felt the love of six continuous hours of cuddling before and after!)

Seren has not yet been alive for two whole weeks and yet she has brought out the good in more people than I could have ever imagined. I know that people have taken the time to pray for her. We have been told that she is on prayer lists from Chicago to Scotland and beyond. She has received so much love and so many prayers that I know she is special.

We have a wonderful daughter. So today, I would like to ask a favor and request that you please join us in celebrating Seren. She is a child of God.

Update

There are only a few days in our lives when we wake up and know your life is going to be changed forever. When we woke up yesterday Lance and I both knew that the information we were going to receive would more than likely be very grim and change our lives as we knew it. We were correct.


We went over to the hospital at two to meet with the Neurology Team and the NICU team. I knew it wasn't a good sign the other specialities weren't there because it meant the Neurology findings were going to overshadow anything else that might affect Seren's life. We were told that Seren had a random gene mutation that affected the development of several major organs. Parts of her brain are formed improperly. This means Seren will be severely mentally and cognitively impaired. We know she cannot see and we are trying to determine if she can hear. We have not been given hope that she will make much progress.


Her heart, kidneys and tethered spine may all require surgical intervention in the future but there is nothing that needs to be done immediately.


There is nothing keeping her in the NICU but her inability to eat. Her temperature is improving. In the next few days a feeding tube will likely be inserted and we will be trained on how to use it. Seren will need 24/7 nursing care and we are trying to find the best way to obtain that for her. Thank you for your prayers as we try to navigate these difficult waters and try to maintain stability for Grayson as we give Seren the attention she needs.

The Waiting Game

Today I called over to the NICU at one o'clock and Neuro was still examining Seren. They decided to do a 24 hour EEG on her starting today at four. Since Neuro wasn't finished until almost 6 (they left and came back a few times) we are scheduled to meet with the entire medical team, including several of the specialists, tomorrow. I'm glad they are taking their time. I'd rather have the big picture all at once than to run off with tiny pieces. Its rough waiting but I understand the reason so that makes it a bit better. So-tomorrow. We should definitely have some answers tomorrow.

The good news. I figured out how to flip some of our pictures we took at Rex so here's a good look at Seren! And yes, that is a full head of dark and STRAIGHT hair!

Neurologists take Sundays off too

Today Lance and I went over to UNC expecting to receive an update on Seren's MRI from the head neonatologist. However, we were told that the MRI results were not a simple finding and we need to come back tommorow to meet with the Neurologist who can explain everything they found in more detail.

We were able to get updates on some of the other tests that have been performed since she arrived at UNC. The ultrasound of her sacral dimple did show a tethered cord which will need to be watched and may require surgery. I'm a little confused on the status of her kidneys but I think that the general message is that they are working pretty well. A VCUG test will be done in the next week to make sure they are formed properly. There is also some confusion over her hearing screening so that will be repeated in the next day or so as well.

Seren is still acting very sleepy during feedings and taking less and less via bottle so I am guessing we will be told a plan of action on her feedings going foward. Seren's temperature had been holding so for a short while she was in clothes and not under the heat lamp. She took a step back though so today it was back to the warmer. Maybe tommorow will show some improvement on that front. It was a pretty discouraging day as far as diagnosis/prognosis goes so I'm hoping that we will be prepared for the discussion with the Neurologist tommorow.

Again, thanks to everyone for their encouraging words and prayers, phone calls, emails, food and generally looking after us. I lack adequate words to tell you how much it means to us. You are gifts from God. Thank you.

Sunny Saturday

Since its such a beautiful day today, we decided that Lance should take the day to spend some father/son time with Grayson and make sure he's getting all the attention he needs. It was supposed to be a slow weekend day at the hospital and we thought Seren would just hang out until Monday so I just went to the hospital for a little mother/daughter bonding. When I got to the hospital the nurse told me that they had done Seren's MRI this morning. This procedure meant two things, one, Seren was groggy from the sedative and two, the biggest news yet on Seren's prognosis is available. I didn't want to get the news without Lance so I asked them not to tell me. We want to be told in person so we are heading to the hospital tommorow to talk with the head neonatologist. We are praying that the results will be positive and the Lance and I will be able to handle the news well.

Seren is still not eating very much. They try to feed her a teaspoon of formula at each feeding and she is only taking about half that much. A team of feeding specialists (who knew that even existed?) will be in next week to determine goals for her eating and whether or not she needs to be tube fed long term or not.

Thats about it for today. Thank you to our church, The Church of the Good Shepherd, for putting Seren on their prayer list and also to everyone who has put us on your church's prayer lists. It means the world to us. The help and support of our wonderful family and friends is helping us get through each day.

First Day at UNC

Today Lance and I went to UNC to see Seren's new digs and to meet with some of the medical team there. We were pleased with the environment and her nurses who had put her in a cute little cap. She was even unplugged from most of the monitors before we left so she got to have on her first clothes-a perfectly acceptable set of pale pink jammies!

We met with the ophthalmologist, the neonatologist and several fellows and residents in the NICU as well as the geneticist. Today Seren had an eye exam and an ultrasound on her sacral dimple and kidneys. We haven't received the full results of these exams but they seem to confirm the findings here in Raleigh. The geneticist didn't have great news for us but I did make him walk through which of her physical traits caused him concern from a genetic syndrome standpoint. They were actually a lot fewer than I thought he would say so that made me feel a bit better. The largest concern is her eyes which are also connected to the brain. Next week we will get an MRI of Seren's brain in order to determine if there are any malformations. We could use every prayer in the world that her brain is intact. This would remove a large hurdle for her and greatly improve her prognosis.

Transfer to UNC

Yesterday was a very exciting day for us because the Neonatologist at Rex was going to try to let us spend some time with Seren in my room! I looked forward to it all day since it was going to let us be a normal family without nurses and wires connected to the baby when we looked at her. However, at four o'clock he came in with some bad news. Seren had a seizure lasting about one minute which added to the concerns about her health. Although we had previously thought her neurological function was normal, the seizure made him decide to do an ultrasound on her head. The preliminary results of the ultrasound showed some fluid around her cerebellum and an enlarged artery in her brain. We were worried about the seizures so since eight beds had to clear before we could get into Duke we decided to check and see if UNC had room for her. They were able to take her immediately.

Lance and I were able to go to the NICU and hold Seren for about an hour and a half before the transfer even though the nursery was technically closed. We really appreciated the nurses letting us have that time. The transfer team arrived and it was a little disconcerting to watch them do their evaluation before they left but we did feel she was in great hands, They loaded her in an isoloete attached to a stretcher (called Tar Heel One!) and took her to Chapel Hill. I left the hospital last night and we are going over there this afternoon to check in on her. My understanding is that the nurses can tell us each morning what tests are scheduled for the day and the Doctors will call us with results. Today she is scheduled for an MRI and then a 24 hour EEG to monitor her brain activity related to the seizures. The EEG is a 24 hour test so once she starts that test that will be all she does for 24 hours.

She is generally comfortable and sleeps well. They keep her warm and cozy in the NICU so I know she is looked after. I wish she was here with us, her family, but I know she is in the best hands possible right now.

Seren's Story

On Monday, April 13, 2009, I went in for my 37 week checkup at my OB's office. She noticed that the heartrate was a little low and ordered a non-stress test. Although the baby's reactivity was ok the base heartrate was low so she sent me to the hospital triage to have the heartrate monitored for several hours. While I was in triage the heartrate remained low but steady, and, because I had slightly low fluid at a previous visit the Doctors ordered an ultrasound. The Ultrasound showed the fluid level was at a three and I was scheduled to have Seren by c-section three hours later.

Before Seren was born we knew her heart and kidneys had some abnormalities but nothing that was considered major. However, after she was born we found out that her corneas were opaque and at least one eye had an optic nerve that was dead. As of right now she has a u-shaped field of vision in one eye where the doctors believe she can see some shapes and light. We initially thought this would be Seren's biggest hurdle.

Seren has not been able to eat because she can't figure out how to suck. This isn't altogether uncommon in newborns but they need to figure it out eventually or this is a sign that their neurological function is impaired. She is currently being fed through her nose and receiving nutrition that way.

An eye exam by a pediatric opthomologist showed that Seren has a condition in her eyes called Peter's Anomoly. Seren's heart and kidneys are functioning well, however, they each have anomolies, that, combined with her eye condition lead Doctors to believe she has an overlying syndrome that would explain the presence of all of these medical conditions in one child. On April 16th Seren suffered a seizure that has raised a new set of concerns. We had her transferred to UNC where several tests are being run to determine a definitive diagnosis and plan of treatment.