28 December 2012

Our first night home!

We were released from the hospital today! I sat in the back seat and watched Luke sleep the entire way home from Cleveland.  When we got home Matthew was so excited to see the three of us!  His greeting was really awesome!  He was also excited to see his baby brother!  Again, he sat in my lap and peered at Luke and petted him over and over!

We are so excited for Luke to be out of the NICU and to be home!!

27 December 2012

Day 6 in the NICU

Tomorrow will be a full week inside the walls of the Cleveland Clinic. So far this experience has been much better than I expected. Up to this point, baby doesn't have Hirschsprung Disease nor any other health complication that we are aware of except for his heart defect, which we were already prepared to deal with.

We were fortunate last night and tonight as well to be allowed to stay in a special room in the NICU called the Transition Room, usually reserved for families to share with their babies the night before they are scheduled to be discharged. I'm not 100% sure why they offered us this room as we had been set to stay at Ronald McDonald after I was discharged, but it doesn't really matter because its been really great to stay overnight with our baby. We've actually been in this room with him since 9:00 AM yesterday and its been a real blessing to have the opportunity to snuggle with him all day and to nurse on demand instead of following the rigid NICU feeding schedule... I'm not sure we could have a baby in the NICU and have a more natural feeling experience.

Tomorrow Luke will have his fourth echocardiogram since birth, with the others occurring this past Saturday, Monday and Wednesday. The reason he's had so many is because his Patent Ductus Arteriosus (PDA) within his heart is still open.

On both Monday and Wednesday, each day revealed that the PDA had shrunk some, but that it was in fact still open. Tomorrow we will be looking for the valve to have shrunk more, ideally it will be completely closed. The PDA as a defect is concerning, but Luke's cardiologists seem more concerned with how the closure will affect the final measurements of the right and left ventricles of his heart, which could necessitate a single ventricle repair versus a dual ventricle repair of his AV Canal. The single versus dual repair would be due to him having a mild imbalance in the sizes of the right and left sides of his heart... If the smaller side is too small to handle the appropriate amount of blood, it will be considered basically useless and the repair will be made incorporating only one side of his heart, known as a single ventricle repair. As of yesterday's echo, our cardiologists continue to believe that a double ventricle will be feasible, so hopefully tomorrow's echo will find the PDA to be closed and will verify our plan of a double ventricle repair.

We are getting geared up tonight to watch about an hour and a half worth of videos covering the topics of carseat safety, infant CPR and back for sleeping. Luke will also be receiving his Hepatitis B and RSV vaccinations tonight. Seems so odd to be giving shots in the evening... Similar to last night, he was circumcised at 9 PM! Life in the NICU is different than anywhere else!

Today I also was a bit concerned that my incision was becoming infected as it was warm to touch, I noticed that the steri strips were wet from some drainage and also the wound underneath appeared to be separating in the middle some. We called down to the SDU to see if one of the doctors would take a look at it and fortunately my doctor had just completed a c-section and was in the unit. He took a look at my incision and validated that it looked okay. With that peace of mind, we returned to the transition room.

Also today, our social worker came in to visit and shared information with us about Help Me Grow and the importance of early intervention. She also obtained prescriptions for Luke for both physical and occupational therapy from our neonatologist.

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.

25 December 2012

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!

24 December 2012

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.

23 December 2012

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!

22 December 2012

Baby Luke in the NICU following birth

Dustin took this photo following baby's arrival.... The NICU doctors ordered this test immediately following his birth, a 12 lead monitor to track his heart.

Meeting our Baby with Down Syndrome

Luke wasn't officially due to arrive until January 9th, 2013, but my c-section was scheduled for a week earlier on January 2nd, 2013.  Apparently, he didn't like either of those dates, so he chose his own and made an early appearance the morning of December 22nd, 2012 at 11:44 AM.  He weighed in at 6 pounds 8 ounces, was 18 3/4 inches long and had a head circumference of 12 inches.

Our first photo with baby Luke in the operating room

A close up of our brand new little guy

Mommy's first time holding baby Luke - in the NICU following the c-section

Heading to the Hospital

We're heading to the hospital!  Although he's not due to arrive for almost two weeks, I think we might be having a baby today!

21 December 2012

False Labor?

It's 4:30 AM and I can't sleep.

Yesterday I was 37 weeks and 1 day pregnant and I saw my high risk doctor for a regular check up.  All of the normal stuff checked out okay, I wasn't showing any impending signs of labor and we discussed "the plan" for baby's arrival as far as what time to be at the hospital the morning of January 2nd, where to go when we get there and what will happen after we arrive.

I began experiencing what I thought were Braxton-Hicks contractions around 10 PM last night and after a fitful few hours of rest (due to the repeating contractions), fully awoke around 2:30 AM to Matthew crying in his room.... while rocking him in my lap, I felt another contraction and decided to begin timing them after he went back to sleep.  After an hour, I'd been having contractions that were lasting from 50 seconds to a minute and twenty seconds and were coming every 7 minutes apart.... not sure whether or not to be concerned, I called the labor and delivery department at our local community hospital and spoke with the doctor on call.  She advised me that since my water hadn't broken, I should wait them out at home for at least another hour and if they increased in intensity (I'm calling them a 4 on a pain scale of 10) that I could head into the local hospital (and if I were in active labor, they'd transport me to Cleveland - although that process usually takes between 3 and 4 hours by the time they'd monitor me, get the paperwork completed for the squad and verify that I were stable enough to actually be transported), if the contractions remained the same or lessened in strength, I should come into the office in the morning and get checked or if my water were to break I should head straight to Cleveland as that's the planned destination for our delivery.  Since speaking with her about an hour and a half ago, I've showered and have continued to monitor the contractions.  They remain mostly unchanged, the intensity hasn't decreased, but hasn't increased enough that I'm overly concerned based upon what she had to tell me. 

I am not ready to have this baby.  My to-do list it still way to long and I haven't even begun to prepare to get me packed for an extended stay at the hospital nor do I have Matthew packed for his time away from home.  I'm going to continue to rest/relax as the doctor suggested for now and if baby doesn't arrive this morning, today will be the day that I get the basics prepared for us to be away from home.

**Update** It's been almost 12 hours since I wrote this post and I went to the doctor this morning to get checked out... I'm happy to report that the contractions weren't productive and didn't cause me to dilate overnight.  Hopefully I still have the 12 days I'm expecting to have between now and when the baby arrives and I can get to a place where I feel comfortable and ready to be away from home.  My plan for tonight?  Make some serious progress on that to-do list that has been haunting me!

16 December 2012

Accepting the love of others

Last week I was beginning to feel overwhelmed. 

The baby will be here in a few short weeks, Christmas is around the corner with shopping, wrapping and decorating still needing completed in our house.  My lower back and carpal tunnel syndrome have been creating significant pain and physical discomfort for me lately, keeping me from having a peaceful night's sleep in quite some time.  Because of my back, Dustin has been transporting Matthew to and from the sitter pretty regularly and I've been noticing that Matthew has been choosing Dustin over me for playtime, comfort, kisses, etc. and while I've been grateful that Matthew has a father who loves him and that he can count on, I have to admit that it's made me feel a bit left out. 

There was a short span of a few days last week where I felt pretty down in the dumps and really questioned if God had chosen the "right" mother to be our new baby's caregiver?  Do I have it in me to learn all that will be required?  Will I be the best advocate?  How on earth will I manage therapy, more specialists and learning how to care for our new baby in addition to my already lengthy list of to-do's?  I thought on it for a few days and had really been struggling with my level of confidence in myself. 

Thursday evening, I was reminded that we're not in "this" alone.  A couple who are long time friends of ours called the night before to see if we'd be home as they had something to drop off.  We were looking forward to seeing them as it had been a while since we'd had a chance to visit.  When Thursday evening rolled around, we learned that our friend had submitted our names and story to become beneficiaries of a fundraiser organized by she and her co-workers every year... we were selected as one of six families to receive a more than generous monetary gift to help us offset our upcoming expenses related to baby's condition.  We were humbled, touched and grateful.  We hope to be staying in Cleveland, either at Ronald McDonald House or if they are full, a local hotel to be near baby while he is in the NICU and their gift should really help us to manage that expense much easier. 

After a bit of reflection, I was reminded that we are not in "this" alone.  The love of Christ has constantly been shared with us through family, friends and even through the generous hearts of people we've never even met, just like from my friend's co-workers at Weaver Leather

Love and support is all around, we just have to be open to accepting it!

13 December 2012

36 Weeks and Counting

Today I had my last appointment with our cardiologist before we see her again following baby's arrival.  She had some pretty awesome news for us!  No, the heart defect hasn't miraculously corrected itself, but this may have been the next best thing!  We've learned over the last few months that baby's heart has a mild imbalance, which had been potentially putting him at risk of eventually needing a single ventricle repair - a less than ideal fix.  Also, there has been a slight regurgitation with one of his valves, not something that we've been overly concerned about, but have been monitoring nonetheless.  Both of these issues looked much better today!  While his heart is still presenting some imbalance, it's evened out some.. to the point that a two ventricle repair should be feasible and the regurgitation was not visible during today's echo!  Wonderful news!

Following the echo, I had an appointment with our perinatologist.  Today, we completed another ultrasound and we learned that the baby has gained almost 2 pounds since our previous ultrasound a month ago, with him now having an estimated weight of 5 pounds, 8 ounces!  This should put him on track to weigh between 6.5 and 7 pounds at birth! 

11 December 2012

Lessons Learned from a Twin

My baby brother is an almost senior at Ashland University.  Tonight he brought a friend from school to visit with us whose twin brother has Down Syndrome.  This guy was was awesome!  He shared how growing up with his brother taught him some wonderful qualities (as I expected), like acceptance, to not judging others, the value of respecting people for their differences, etc. etc.  He also shared that they are 23 years old and that following high school his brother completed a post-secondary college program that taught trade skills and that he has two jobs now, one at Taco Bell (which he loves because he gets to interact with people) and also at a workshop where he helps to make wooden benches.  He told me how his brother loves having a routine and helps out a lot around the house, cleaning and making some of his own meals... his favorite food to cook is omelets!  He also told us about a special olympics type of program called "challenger" in the Massilon / Canton area where he spent a lot of time growing up playing baseball and basketball (he also had AV Canal and the amount of exertion required for the challenger activites was appropriate based upon his heart) and how he's a huge Browns fan now.  I was interested in any tips he'd have for us in raising our other son, Matthew and pretty much, he just suggested that we treat them both the same and bring Matthew up to love, care for and protect his brother.. all things we would have done anyways.  He had such an amazing love for his brother  and it was really encouraging and uplifting to learn about their lives!