A prayer for an unknown family

We learned this morning that one of the babies that our nurse was assigned to passed away. My heart is so heavy for the loss of this child's future and for the grief that the baby's family is surely enduring at this moment and will probably carry for quite some time, likely forever...

Lord, please accept this baby with open arms in heaven and allow his or her family to find comfort in knowing that all of the baby's pains and physical stresses have been eliminated.  Help them to have faith in your presence and to find your peace that passes all understanding. Amen.

Surprise Christmas Presents

Luke was the beneficiary of a few special gifts on Christmas day... we don't know who the gifts came from, other than they were donations for children spending Christmas in the NICU.  He also received a handmade card from a child in a school that neighbors the Cleveland Clinic.

How thoughtful and many thanks!

A Special Christmas Gift: Brothers Meet for the First Time

Our first time as a family of four!!

Matthew met his baby brother Luke today!  What an awesome Christmas gift!  He was a little bit jealous and a lot excited.  He alternated the two emotions by both giving me a pouty face and then he'd repeat "Baby Lu" and "Brud-ber" while he was smiling!  He also wanted to sit on my lap and pet Luke, pick him up (which I didn't let him do, although he tried!) and he kissed his belly.  Our visit was short - maybe only 40 minutes, but it was the most memorable Christmas I've ever had!

Me and my two babies!

Christmas Eve at the Cleveland Clinic

On the bright side, I'm here with Dustin and baby Luke. But after seeing all of our friends' posts on Facebook tonight about attending Christmas Eve service at church, pics of their kids wearing matching Santa jammies, plates of cookies and milk sitting out for the bearded guy and comments about being excited to wake up in the morning to celebrate with their families, I'm left feeling a bit sorry for myself since we are missing all of those things with Matthew tonight. Fortunately he attended church tonight with family, so that's at least reassuring, but I can't help but feel a little sad that we are stuck up here away from home. Hopefully tomorrow will make up for it since Matthew will be visiting us in the hospital and even better we will get to introduce him to his baby brother and on top of all of that, we will for the first time get to spend our first few moments together as a family of four!

For tonight however, I will just have to be happy with sitting in my hospital room watching Americas Funniest Home Videos Christmas Edition and the Duck Dynasty Christmas Special with Dustin knowing that our sweet new baby is safe and comfortable in another wing across the hospital and that our big boy is in the care of loving relatives. While I may be a bit envious of all my Facebook friends and their cozy family time tonight, I'm reminding myself that the spirit of Christmas isn't about Santa, it's about the birth of Baby Jesus and the story of God's love. Maybe more than ever, I know first hand tonight that God loves me... I have been blessed with a loving husband, two beautiful boys and a heart full of hope for our future!

Merry Christmas to you tonight, wherever you may be!

Mommy's First Impression

We've known for a few months that our son would have Down Syndrome.

I've had so much curiosity over what he might look like and to be honest I've been a bit terrified that he wouldn't look right to me or that I wouldn't think he was as beautiful as his big brother. In that first moment when I had a chance to look at his sweet little face, Down Syndrome was the last thing on my mind. He was so tiny and beautiful and I'll never forget how his little lips were pursed together and he kept sticking his teeny red tongue out over and over. Actually, upon my first impression, I couldn't even make out any facial features that indicated that he in fact did have Down Syndrome.

After a few hours when I was finally out of the recovery room and allowed to meet and hold baby Luke, I had a chance to complete a more thorough inspection.... I noticed some physical traits that I had read about as being consistent with Down Syndrome, including an unusually wide space between his big toe and second toe, his neck is quite short and the back of his neck is thicker than you'd expect to see. Furthermore, his ears are almost flat against his head and they seem to be set a little lower than usual. I didn't realize it was possible to have some but not all of the physical signs, but his eyes don't appear to have the tell-tale slant yet nor does he have the single palmar crease that I've read about over the last few months.

When I look at baby Luke I don't see Down Syndrome. When I look at baby Luke, I see a wonderful creation given to our family. I see a life with hope for the future. I see a baby who needs a family and likewise, a family who needs a baby. I see a son, a brother, a nephew and a grandson.

I'm not scared anymore about what the future might hold. I'm excited about the prospect of raising another child, I love being a mother and can't wait to nurture and raise the gift that God has given us. I DO think that baby Luke is every bit as beautiful as his big brother... we are extremely blessed to be parents of two awesome boys!

Baby Luke: 48 Hours Old

Baby Luke is 48 hours old.

He seems to be gaining some comfort with nursing, although his NG tube is still in since he seems too tired to eat sometimes. 

Baby Luke with his NG Tube

Cardiology was in for him this morning and it was really awesome to witness 3 cardiologists in one of the best heart hospitals pushed up around his isolette completing and discussing the results of today's Echocardiogram.  Apparently the PDA hasn't closed yet, although its getting smaller... As of now, this will be our barrier to getting out of here as how it closes will give us some real definition around how the heart will need repaired and exactly when we expect the surgery to take place.

Also, we had a disappointing result with his hearing screening... he didn't pass his hearing test for either ear  and will be referred to an audiologist for a comprehensive follow up exam following his discharge to verify his hearing.

Genetics was also in this morning. Our geneticist seems to be hopeful that Luke might have the mosaic form of Trisomy 21 as he doesn't have all of the physical features you'd expect to see in a baby with down syndrome.  Mosaic Trisomy 21 is the rarest form of DS, only occurring in 2%-4% of individuals with the anomaly.  Research has shown that children with mosaicism reach certain motor milestones earlier than children with typical DS, such as crawling and walking alone. However, the speech development was equally delayed in both groups. On average their IQ has been found to be between 10 and 30 points higher than individuals with typical DS.  We won't know the actual results until the karyotype test comes back in 7 to 10 days. (**Update** The karyotype results did come back and Luke doesn't have Mosaic T21, he has full strength T21, although we still don't know if it's nondisjunction or translocation - we should find that out at our next appointment with the genetics team.)

We got a special approval today from the NICU director to allow Matthew in the unit tomorrow for 30 minutes to meet baby brother Luke for the first time on Christmas day.

Welcome Luke William!

Our second son is officially 24 hours and 8 minutes old... We've experienced a whirlwind over the last few days!

Around 10 PM Friday evening, the contractions started again... Considering I'd been checked that morning and wasn't dilated, I wasn't too concerned. I took a hot bath attempting to relax and after getting some relief, went to bed close to midnight. I awoke around 2 in the morning with painful, but manageable contractions and began timing them... They were consistently between 5 and 7 minutes apart and slowly became more painful, although I was able to breathe through them okay. By 3:30 I had started bleeding and decided to contact our planned delivery destination, the Special Delivery Unit at the Cleveland Clinic. The nurse transferred me to the doctor on call and after a short consultation, we decided that although my water hadn't broken, it was best to come to Cleveland to get checked as if I were to go to our local community hospital, it would likely have taken them 3 to 4 hours to get me transported via squad or life flight as the local doctors would have had to check me, make sure I was stable enough for transport, complete the paperwork and place the order for the transport, etc, etc.

We called Uncle Bob and Aunt Elaine to come stay with Matthew and also called our moms to let them know what was going on. Kyle came to get our dog Nelson and we were all set. Although I had planned to pack the night before, instead my mom came over and we sterilized bottles and continued to do more decorating at the new house. Dustin did put the pack and play together so baby has a place to sleep in our room when we get home, but as far as completing my goal of getting us packed and ready to leave... I didn't make much (or actually any) progress!

While we waited for family to arrive, Dustin and I got packed for the hospital... And it wasn't real fun completing the chore while I was having contractions! By the time we were finished, our reinforcements had arrived and we were on the road by 5:50 am. We'd had snow and freezing rain the night before and fortunately we had a short drive to get to 71. The back roads were less than ideal but the interstate was in good shape and we made it to Cleveland in about an hour... The easiest trip we've ever had getting up here... There was literally no traffic before sunup on a Saturday morning!  The only annoying part of the trip was that it seemed that during every contraction on the way up, we would drive over the bumpiest overpass on the highway in our truck that already rides a little rough, which made the contractions pretty awful!

On the drive up, we decided to valet the truck to save time, but the Clinic appeared to be running on a skeleton crew so early on a weekend morning and Dustin ended up parking it right in front of the main entrance and pushed me in a wheelchair to our destination. When we arrived at the SDU, they were ready for us and we were lucky to be the only patient in the unit. I was dilated 4 cm and was 100 percent effaced and by the time we settled in our room at 7:30, the doctor on call shared that we'd be having our baby shortly. He contacted our high risk doctor who asked us to wait for him to complete another c section he was getting ready to begin so that he could be there to deliver our baby. While we waited for him to arrive, we met with doctors from the NICU and pediatric cardiology as well as our anesthesiologist. The nurses in the SDU were awesome and they really helped me to feel comfortable and safe. After the doctor arrived, we had a short visit with him and I was able to walk to the operating room for my spinal. The spinal tap was really easy for the Anesthesiologist to administer and it was quick and basically painless. As compared to the epidural I had last time, I thought the spinal offered a better block and the surgery was much less uncomfortable than I remembered from the last time. The whole operation took about an hour.

When the nurse let me take a peek at Baby Luke, my first thought was that he looked a lot like Matthew (and Dustin, too) and I was struck that he had red hair! The nurse took him to another room and we were glad that we could hear him crying from a few rooms away! His apgar scores were an 8 and a 9 and he was stable enough that the nurse brought him back in the operating room so we could take some photos and see him again. Shortly afterwards, Dustin accompanied Luke and his entourage to the NICU where they weighed and measured him (he was 6 pounds 8 ounces, 18 3/4 inches long and had a head circumference of 12 inches) and also hooked him up to a 12 lead heart monitor.

Following my c section, I went back to my room in the SDU for a few hours to recover and before moving to the new unit where I will remain for the remainder of my admittance, the nurses snuck me into the NICU to hold the baby and make our first attempt at nursing.

I am still in shock that we have added another member to our family... Life is so incredibly amazing and the fact that two people can create another life is such a wonder. I am in love with baby Luke! I can't wait to get back over to the NICU and hold him again!