Dustin and I spent New Year's Eve snuggled up in our living room watching movies and holding and playing with our boys. Luke is not doing much other than feeding and sleeping, but that makes him a prime candidate for cuddling while watching TV. Matthew is in love right now with a box full of plastic balls and a pop up tent he received for Christmas from Aunt Dori and Uncle Nate and also with Mom and Dad's iPad. He spent most of the evening playing with those three items. On the iPad, he enjoys playing a farm animal peek-a-boo game that we've downloaded and he and Dustin generally had fun playing it and goofing around on the floor with other toys.
Matthew was in bed by 8:30 and Luke by 10 PM. Matthew slept through the night (as usual) and Luke was up again to eat at 1 AM and again at 2:30 and 5:45.
Today, we have pretty much relaxed around the house. We activated a free trial for Netflix and watched a few movies this afternoon. For lunch, Dustin made cookies, a ham and cheesy potatoes and for dinner, I made mashed potatoes, pork and sauerkraut. It's almost time for Matthew's bath... but for now, he and Dustin and sitting on the couch eating grapes while I hold baby Luke and stare at his sweet face!
As I look forward to 2013, I pray for good health for our family. I will ask God everyday to watch over our boys and Dustin and I and to help us share the love that we receive from others. In addition, I ask for Him to grant me a deeper understanding of technology and medicine and for the faith to cast my cares on His shoulders.
01 January 2013
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!!
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.
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.
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!
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!
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!
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!
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