Maddox turned 4 months on Monday! I don't think anyone, including me, really knows how big of a milestone that is for him. 4 months ago I didn't know if he was even going to make it through surgery, or if I could be strong enough to be his mommy. He did, I am.
I will find the camera and upload some pictures later.
So 2 nights ago I was downstairs scraping wall paper. Luke was at YM, Bailee's still at grammy and grampy's, and Maddox was asleep. I felt alone. It was too quiet and I had too much time to think. I thought of everything that I have gone through the past 4 months. This always makes me feel guilty, because I know how blessed I am. Others would gladly take my bad days over theirs, and a baby with lots of medical issues over no baby at all. I know that. But I had a little epiphany. It's ok for me to loose it now and then. It's ok for me to not be strong once in awhile. It's ok for me to feel sad and angry about what I am going through. It's ok for me to cry and let it all out. I don't have to bottle it all up to spare someones feelings. That doesn't make me selfish, it makes me human. So I cried. And I felt. And I prayed. And then I smiled and am moving on. I hope I do have another day like that.
Last Thursday we met with Dr. Pinto, Maddox's cardiologist. She confirmed my thoughts about moving forward with the next surgery. I can see my little guy declining, though it is subtle, and I'm ready for him to have the next one. I know it'll make a huge difference in his little life, and he'll feel better. So Maddox will be having his next open heart surgery within the next 3 weeks. Never would have imagined being glad about something like this. But I am. He'll be in good hands when we turn him over to Dr. Kaza, and he's in the Lord's hands. That's the important thing.
This is one special little boy and I am so proud to be his momma. Sometimes I wish the Lord didn't trust me so much, but I am happy he trusted me with Maddox. I wouldn't trade him for anything. I am also so thankful he blessed me with Bailee. I couldn't get through this without her. She is my best little buddy and brings a smile to my face every day. She makes me stronger and want to be better. Love that little girl and missing her so much! And Luke. He's just simply AMAZING. Each and every day I am grateful that the Lord brought us together. I am blessed. I am grateful.
Thursday, November 19, 2009
Monday, November 9, 2009
New Pics of Maddox!
So Nicole was up last weekend and was sweet enough to do some more pics of Maddox. I have been checking her site several times a day because I knew they would be AMAZING! And they are! Check them out by clicking HERE!
Sunday, November 8, 2009
Preparation
It's a miracle to me, as I look back over my life, how the Lord has prepared me for the things that happen. The timing of things both baffles and amazes me. I do wish I would take the time to write these things down more often.
A few weeks before Dad B. passed away our Bishop asked us to pray for our neighbors. He told us that there is a lot of pain and suffering among our ward members that we just don't know about. It touched my heart and I did take that challenge. I tried to remember my neighbors and ward members in my prayers, and also specifically asked for direction in how to serve them. In the days that followed dad's passing, I reflected on these prayers. It brought me great comfort knowing that our neighbors had been praying for us, even before this trial.
The weeks after Dad's passing were filled and busy. First with the funeral arrangements and the Bulkley family being here, Mom B. leaving for Hawaii earlier than expected, then with the Spencer family being with us and Bailee's birthday. I reflected a lot in those days about the plan of salvation and the way God prepares us for trials. I remember thinking specifically about the peace that I feel knowing that our family is sealed together, forever, and that no matter what happens we are family.
These weeks after Dad's passing were also the weeks leading up to Maddox's birth. I didn't know that I was being prepared for another trial, but the Lord did. Mom and Dad S. had been asking to take Bailee for a week or two before Maddox came so that I could rest and do whatever I thought I needed to do to prepare for his arrival. I felt so strongly that she should stay, that I needed this time with her. There were moments when I wanted to let her go, that I tried to convince myself that it was my 'anxiety' talking, and I actually felt selfish for wanting to keep her with me. However, deep down I knew that I needed her. We spent time talking about the baby, planning for his homecoming, and doing what I thought was necessary to prepare Bailee for this change in our lives. I tried to spend as much time reading to her, playing with her, and focusing on her. I wanted to remind Bailee how much I loved her and needed her.
The morning we went to the hospital I was a little overwhelmed. I actually kept putting off leaving for the hospital because I suddenly felt un-prepared for this new baby. I worried about leaving while Bailee was asleep. I didn't want her to wake up to find us gone, I didn't know if I had prepared her well enough. I was so happy to see her when Grammy S. brought her to the hospital shortly before Maddox arrived. I was sad when I knew that they would be taking our baby right to the NICU when he was born, and that she would have to wait to see him. I hadn't prepared her for that. She only saw Maddox briefly as he was rushed past her to the NICU. As the hours passed and we waited to have Maddox with us, Bailee and I talked and rested and watched Hannah Montana. And we waited.
When the Dr.'s came to tell us that Maddox was very sick and needed to go to PCMC, I thought of Bailee. How could I have prepared her for this? What do I say to her now? How can I answer her questions when I have so many questions of my own? How could I possibly rush off to be with Maddox and leave Bailee alone? How could I not? I again thought of our neighbors praying for us, and was grateful. I knew that those prayers would get our family through whatever was ahead of us. God had prepared us, and we would be ok.
I will never forget that first walk down the hall of the PICU. I looked at these parents next to these sweet little children and wondered how in the world they could look so calm and even happy. I was trying to imagine how they were dealing with such a trial, and my heart ached for them. How can you prepare for something like this? I didn't know if my son was going to live or die. I didn't even really understand what was wrong or what the Dr.'s could do for him. I certainly didn't know that those nurses and Dr.'s gathered around were truly angels. What I did know is that our family was forever. I was grateful to have that peace and knowledge come into my heart. Whatever was ahead of us would be hard, but with the Lord on our side we could handle it.
I was amazed at how quickly I became comfortable in the PICU and with the medical terms used to describe what was going on. Strange as it sounds, PCMC is a little piece of heaven on earth. Miracles occur their continuously and there is a spirit there like no where else I've been. As I came to know the nurses, dr.'s and other families around us I was continually reminded of how blessed we are. We saw a lot of hard things there, and it seemed so strange to me that I could actually be grateful for the trial we had. But I was. And I am.
Even through the scariest of times, which was definitely when Maddox had the infection, I felt such peace in the Lord's plan. I remember when we were taught about the feeding tube, the medications, and the pic line thinking how familiar this felt. I thought often that it seemed wrong to be so comfortable with this stuff. Why wasn't I more frightened? Where were the nerves? How was it possible that I was feeling confident about caring for Maddox and handling all of his medical needs? There's only one answer. The Lord has been preparing me for this my entire life. There are specific trials and experiences that I have had that are helping me now. Things that I was not grateful for, things that I had often wished had never happened. I couldn't see the big picture.
Some of this experience comes from being Tressa's sister. I helped my parents care for her. I learned about her medications and how to give them. Her medical needs were so common place and such a normal part of our life. I don't think I ever gave them a second thought. When the Oxygen concentrator was delivered to our home for Maddox it was familiar. I already knew all about this machine and how it worked. It didn't make me nervous at all. The medications weren't that difficult, and the feeding tube didn't feel like such a big deal.
Some other experience came from a time in my life that I don't really like to talk about. These were some of my darkest days, and ones that I had never found a reason to be grateful for, until now. In May of 2002 my boyfriend was diagnosed with cancer. I spent months at the hospital with him, and at that time became very familiar with the hospital and the way things work there. I had good and bad experiences. I was glad when that time in my life was over. Looking back now I can see how even that time prepared me for now. That experience combined with my experience with Maddox has given me a different perspective than I could have gained otherwise.
I look at life differently now. I try and enjoy each moment. I am learning that every trial and experience prepares us for the future, especially the hard ones. I am thankful that God loves us enough to prepare us and that He gives us the tools we need to overcome all things.
A few weeks before Dad B. passed away our Bishop asked us to pray for our neighbors. He told us that there is a lot of pain and suffering among our ward members that we just don't know about. It touched my heart and I did take that challenge. I tried to remember my neighbors and ward members in my prayers, and also specifically asked for direction in how to serve them. In the days that followed dad's passing, I reflected on these prayers. It brought me great comfort knowing that our neighbors had been praying for us, even before this trial.
The weeks after Dad's passing were filled and busy. First with the funeral arrangements and the Bulkley family being here, Mom B. leaving for Hawaii earlier than expected, then with the Spencer family being with us and Bailee's birthday. I reflected a lot in those days about the plan of salvation and the way God prepares us for trials. I remember thinking specifically about the peace that I feel knowing that our family is sealed together, forever, and that no matter what happens we are family.
These weeks after Dad's passing were also the weeks leading up to Maddox's birth. I didn't know that I was being prepared for another trial, but the Lord did. Mom and Dad S. had been asking to take Bailee for a week or two before Maddox came so that I could rest and do whatever I thought I needed to do to prepare for his arrival. I felt so strongly that she should stay, that I needed this time with her. There were moments when I wanted to let her go, that I tried to convince myself that it was my 'anxiety' talking, and I actually felt selfish for wanting to keep her with me. However, deep down I knew that I needed her. We spent time talking about the baby, planning for his homecoming, and doing what I thought was necessary to prepare Bailee for this change in our lives. I tried to spend as much time reading to her, playing with her, and focusing on her. I wanted to remind Bailee how much I loved her and needed her.
The morning we went to the hospital I was a little overwhelmed. I actually kept putting off leaving for the hospital because I suddenly felt un-prepared for this new baby. I worried about leaving while Bailee was asleep. I didn't want her to wake up to find us gone, I didn't know if I had prepared her well enough. I was so happy to see her when Grammy S. brought her to the hospital shortly before Maddox arrived. I was sad when I knew that they would be taking our baby right to the NICU when he was born, and that she would have to wait to see him. I hadn't prepared her for that. She only saw Maddox briefly as he was rushed past her to the NICU. As the hours passed and we waited to have Maddox with us, Bailee and I talked and rested and watched Hannah Montana. And we waited.
When the Dr.'s came to tell us that Maddox was very sick and needed to go to PCMC, I thought of Bailee. How could I have prepared her for this? What do I say to her now? How can I answer her questions when I have so many questions of my own? How could I possibly rush off to be with Maddox and leave Bailee alone? How could I not? I again thought of our neighbors praying for us, and was grateful. I knew that those prayers would get our family through whatever was ahead of us. God had prepared us, and we would be ok.
I will never forget that first walk down the hall of the PICU. I looked at these parents next to these sweet little children and wondered how in the world they could look so calm and even happy. I was trying to imagine how they were dealing with such a trial, and my heart ached for them. How can you prepare for something like this? I didn't know if my son was going to live or die. I didn't even really understand what was wrong or what the Dr.'s could do for him. I certainly didn't know that those nurses and Dr.'s gathered around were truly angels. What I did know is that our family was forever. I was grateful to have that peace and knowledge come into my heart. Whatever was ahead of us would be hard, but with the Lord on our side we could handle it.
I was amazed at how quickly I became comfortable in the PICU and with the medical terms used to describe what was going on. Strange as it sounds, PCMC is a little piece of heaven on earth. Miracles occur their continuously and there is a spirit there like no where else I've been. As I came to know the nurses, dr.'s and other families around us I was continually reminded of how blessed we are. We saw a lot of hard things there, and it seemed so strange to me that I could actually be grateful for the trial we had. But I was. And I am.
Even through the scariest of times, which was definitely when Maddox had the infection, I felt such peace in the Lord's plan. I remember when we were taught about the feeding tube, the medications, and the pic line thinking how familiar this felt. I thought often that it seemed wrong to be so comfortable with this stuff. Why wasn't I more frightened? Where were the nerves? How was it possible that I was feeling confident about caring for Maddox and handling all of his medical needs? There's only one answer. The Lord has been preparing me for this my entire life. There are specific trials and experiences that I have had that are helping me now. Things that I was not grateful for, things that I had often wished had never happened. I couldn't see the big picture.
Some of this experience comes from being Tressa's sister. I helped my parents care for her. I learned about her medications and how to give them. Her medical needs were so common place and such a normal part of our life. I don't think I ever gave them a second thought. When the Oxygen concentrator was delivered to our home for Maddox it was familiar. I already knew all about this machine and how it worked. It didn't make me nervous at all. The medications weren't that difficult, and the feeding tube didn't feel like such a big deal.
Some other experience came from a time in my life that I don't really like to talk about. These were some of my darkest days, and ones that I had never found a reason to be grateful for, until now. In May of 2002 my boyfriend was diagnosed with cancer. I spent months at the hospital with him, and at that time became very familiar with the hospital and the way things work there. I had good and bad experiences. I was glad when that time in my life was over. Looking back now I can see how even that time prepared me for now. That experience combined with my experience with Maddox has given me a different perspective than I could have gained otherwise.
I look at life differently now. I try and enjoy each moment. I am learning that every trial and experience prepares us for the future, especially the hard ones. I am thankful that God loves us enough to prepare us and that He gives us the tools we need to overcome all things.
"there is no strugle for which the Atonement of Jesus Christ is not sufficient."
Sunday, November 1, 2009
Happy Halloween!
BEWARE! Blog overload!
Bailee needed a nap before going trick-or-treating. She couldn't wait to get into her costume in the morning. Fun.
Bailee needed a nap before going trick-or-treating. She couldn't wait to get into her costume in the morning. Fun.
Our Room
Love our new room. I'm going to put a quote and some pictures in the headboard area. There's still a few things I want to do in here, but I love the colors and how it's turning out.
Moving Day
Yesterday was a bitter-sweet day. We are so sad that Grandma B. is moving, but so happy for her at the same time. In the morning we went up and got the big truck and then had lots of helpers in the afternoon. We really appreciated everyone's help.
More Pumpkin Fun
For family home evening last week we carved and decorated our pumpkins. Bailee didn't really like the goo at first, but got into it pretty quickly.
New Floor
Mom and Dad S. came to visit and helped us put in new flooring. We are doing this wood in the master bedroom, hall, and upstairs living room.
We got the bedroom and hall done, and will finish the living room next week. Thanks Mom and Dad!!!
Painting Pumpkins
About 3 weeks ago McKinley came over after dance class. (while Lyss and Steve were in Hawaii...jealous.) But anyways....
We had grown these cute little pumpkins and I decided to let the girls paint them. I carefully put little puddles of different colors on each of their plates. Lots of different colors. I was excited to see what they did with them......
Well, McKinley swirled them all together and came out with her favorite color. Purple!
We had grown these cute little pumpkins and I decided to let the girls paint them. I carefully put little puddles of different colors on each of their plates. Lots of different colors. I was excited to see what they did with them......
Well, McKinley swirled them all together and came out with her favorite color. Purple!
McKinley painted her feet and face purple. I got a little distracted with cleaning up the mess.
The important thing is that they had fun, right??
Now and Then
This was not the first view I wanted to share of the play room....but here it is. On Wednesday, McKinley came over to play after dance class. I heard them giggling and peeked in to find this.....
Thursday, October 22, 2009
Did I mention....
That Maddox gained another 5 oz this past week!! So excited. The bigger he can be before the next surgery, the better. Each oz is a blessing! He's eating from the bottle like a champ and growing like a weed, only much much cuter.
I have to scan and share a few more pics from Luke's younger days that I found. Maddox has his daddy's smile, so cute!
Bailee is becoming more of a diva everyday. I love it, except when it drives me crazy. :) The best thing I've done for her (well, probably not the truly best thing...and it may be more for me) is get her a closet space saver bar. It puts the clothes at her height and she LOVES it. My 3 year old hangs up her own clothes! And now that she can reach her dresses she gets dressed herself. This morning she put together a brown ensemble and came to me saying "Can we go somewhere today so I can go out in this outfit?" So cute. I need to take a picture. Bailee continues to love dance class and when we ask her to show us her dance she tells us it's a secret. I guess we'll have to wait for the recital. She's always dancing around the house and being Hannah Montana. When I asked her where she got her sweet dance moves I shouldn't have been surprised when she said "From Grandpa Spencer". That's a pretty typical answer. That's where she grew so big, because she drank her milk. It's where she got so smart, because he lets her watch Mickey Mouse Clubhouse whenever she wants. It's where she got so cute. Yeah, pretty much the answer for everything. This girl cracks me up (and Brad, just ask her) and I am loving this age. (except for when it drives me crazy. Oh wait, I already said that.)
Luke continues to work so hard. We appreciate his sacrifice and willingness. I know it's not easy for him, but he does his best and is incredible. He's got a lot on his plate right now, but if anyone can handle it, it's Luke.
More pics of the house projects next week! Getting super excited about getting things done! And did I mention that I can't wait to put up the Christmas tree?? But I will wait until Thanksgiving, I promise! It's going to look so good in our new living room!
Oh, and Grammpy???? Bailee really needs a real tree this year. If she says pretty please do you think you could bring her one??
I have to scan and share a few more pics from Luke's younger days that I found. Maddox has his daddy's smile, so cute!
Bailee is becoming more of a diva everyday. I love it, except when it drives me crazy. :) The best thing I've done for her (well, probably not the truly best thing...and it may be more for me) is get her a closet space saver bar. It puts the clothes at her height and she LOVES it. My 3 year old hangs up her own clothes! And now that she can reach her dresses she gets dressed herself. This morning she put together a brown ensemble and came to me saying "Can we go somewhere today so I can go out in this outfit?" So cute. I need to take a picture. Bailee continues to love dance class and when we ask her to show us her dance she tells us it's a secret. I guess we'll have to wait for the recital. She's always dancing around the house and being Hannah Montana. When I asked her where she got her sweet dance moves I shouldn't have been surprised when she said "From Grandpa Spencer". That's a pretty typical answer. That's where she grew so big, because she drank her milk. It's where she got so smart, because he lets her watch Mickey Mouse Clubhouse whenever she wants. It's where she got so cute. Yeah, pretty much the answer for everything. This girl cracks me up (and Brad, just ask her) and I am loving this age. (except for when it drives me crazy. Oh wait, I already said that.)
Luke continues to work so hard. We appreciate his sacrifice and willingness. I know it's not easy for him, but he does his best and is incredible. He's got a lot on his plate right now, but if anyone can handle it, it's Luke.
More pics of the house projects next week! Getting super excited about getting things done! And did I mention that I can't wait to put up the Christmas tree?? But I will wait until Thanksgiving, I promise! It's going to look so good in our new living room!
Oh, and Grammpy???? Bailee really needs a real tree this year. If she says pretty please do you think you could bring her one??
Tuesday, October 20, 2009
5 things to share
Bailee and I made homemade Drumsticks, you know the ice cream ones that are so yummy! Thanks to Kinsey for posting this great idea. Go here to see their creations and for step by step directions and pics.
I was preparing for my last YW lesson and was lead to this amazing talk by President Ucthdorf. It really helped me last week, and was just what I needed that day. I am sad to be released from YW, but I know it's the right thing for now. I really loved the girls and leaders, and am so grateful for being able to get to know them all! And I'm super sad to miss girls camp next year.
Luke was called to serve in the YM organization as the Teachers adviser, and released as a Sunday School teacher. I was now without a calling, and accepted the call to teach his class. It's a little scary to think that next year we'll be studying the bible. I don't know why that intimidates me, but it does. But I'm sure I'll learn something. So in preparation for my first time teaching this class, I was reading in D&C. The first scripture I read was this. The line that stuck out to me the most was "but if ye are prepared ye shall not fear". Crazy. I need this lesson too! It's something that I've been thinking a lot about lately and have seen this come to pass in my life. We've been truly blessed by trying our hardest to be prepared in all aspects of our lives. At this time, I'm especially grateful in the financial area. We've been saving what we can for a few years in order to buy a home, but when Maddox was born and we were surprised with some extra medical expenses, it was nice to know we would be ok. It wasn't what we had planned for, but we were prepared, and I'm grateful for that.
The moving and packing and shuffling and projects continue. Yesterday we moved entertainment centers, tv's, bedroom furniture, and couches. Thanks to Luke and Jake for the heavy lifting! Now the kids have a play room/guest room and Bailee thinks it's awesome. Mom and Dad S. are coming this weekend to help with floors and some other projects. I'll be glad to be done with the big projects and to finally get organized. I'll get some more pics posted as we finish some of these things up. We are sad to think about Mom B. leaving, but are happy that she'll at least be here a few days a week the next few months.
Trials. We all have them. I've learned a lot about them the past few months, and even the past few days. I think the most important thing I've learned is that no one's trials are the same, and none are harder or easier than another. They're just different. I've seen and learned some pretty hard things the past few months, and I'm grateful for mine....or I'd rather have mine than someone else's. And you can't pray them away, this is what life is all about. I wish I could take Maddox's heart issues away, but I know that we've all be blessed because of them. This is one special little boy, and I'm so grateful for him and all that comes with being his mommy.
I was preparing for my last YW lesson and was lead to this amazing talk by President Ucthdorf. It really helped me last week, and was just what I needed that day. I am sad to be released from YW, but I know it's the right thing for now. I really loved the girls and leaders, and am so grateful for being able to get to know them all! And I'm super sad to miss girls camp next year.
Luke was called to serve in the YM organization as the Teachers adviser, and released as a Sunday School teacher. I was now without a calling, and accepted the call to teach his class. It's a little scary to think that next year we'll be studying the bible. I don't know why that intimidates me, but it does. But I'm sure I'll learn something. So in preparation for my first time teaching this class, I was reading in D&C. The first scripture I read was this. The line that stuck out to me the most was "but if ye are prepared ye shall not fear". Crazy. I need this lesson too! It's something that I've been thinking a lot about lately and have seen this come to pass in my life. We've been truly blessed by trying our hardest to be prepared in all aspects of our lives. At this time, I'm especially grateful in the financial area. We've been saving what we can for a few years in order to buy a home, but when Maddox was born and we were surprised with some extra medical expenses, it was nice to know we would be ok. It wasn't what we had planned for, but we were prepared, and I'm grateful for that.
The moving and packing and shuffling and projects continue. Yesterday we moved entertainment centers, tv's, bedroom furniture, and couches. Thanks to Luke and Jake for the heavy lifting! Now the kids have a play room/guest room and Bailee thinks it's awesome. Mom and Dad S. are coming this weekend to help with floors and some other projects. I'll be glad to be done with the big projects and to finally get organized. I'll get some more pics posted as we finish some of these things up. We are sad to think about Mom B. leaving, but are happy that she'll at least be here a few days a week the next few months.
Trials. We all have them. I've learned a lot about them the past few months, and even the past few days. I think the most important thing I've learned is that no one's trials are the same, and none are harder or easier than another. They're just different. I've seen and learned some pretty hard things the past few months, and I'm grateful for mine....or I'd rather have mine than someone else's. And you can't pray them away, this is what life is all about. I wish I could take Maddox's heart issues away, but I know that we've all be blessed because of them. This is one special little boy, and I'm so grateful for him and all that comes with being his mommy.
Friday, October 16, 2009
If he's anything like me....
Maddox is 3 months old today! WOW! What a 3 months it has been, and as crazy as it sounds, it's been a wonderful 3 months. I remember thinking through the first few days that if Maddox was going to die, I'd rather it happen sooner than later. I didn't want to get attached to this little guy and then have to let him go. Selfish. I am so incredibly grateful for Maddox and I am grateful for each minute of each day that I have with him. He has been a blessing in a million ways, and our family is truly better with him in it.
I first heard this song one day as I was driving to Primary's to be with Maddox. I cried. All through my pregnancy I joked that this little boy would give me hell his whole life, after all, I was sicker than I had been with Bailee. I was wrong. Because Luke was such a sweet little boy I kept saying I hoped he was just like his daddy. Maddox is such a sweet and happy baby, but I never imagined he'd start his life off so much like his daddy. Mom B. found these pictures the other day and showed them to me. It was crazy to see Luke as a baby looking so much like Maddox.
Van and Luke
Luke's angels.
I first heard this song one day as I was driving to Primary's to be with Maddox. I cried. All through my pregnancy I joked that this little boy would give me hell his whole life, after all, I was sicker than I had been with Bailee. I was wrong. Because Luke was such a sweet little boy I kept saying I hoped he was just like his daddy. Maddox is such a sweet and happy baby, but I never imagined he'd start his life off so much like his daddy. Mom B. found these pictures the other day and showed them to me. It was crazy to see Luke as a baby looking so much like Maddox.
Luke and Maddox
Van and Luke
Luke's angels.
I wish I had pictures of Maddox's angels. That's the only way to describe the nurses and dr.'s at PCMC. Miracles happen there every minute, and it's in large part to the incredible people that work there. I truly believe that they are guided step by step by God.
I am so looking forward to the years ahead and watching Maddox following in many of his daddy's footsteps. If he's anything like Luke, he will be amazing.
I am so looking forward to the years ahead and watching Maddox following in many of his daddy's footsteps. If he's anything like Luke, he will be amazing.
Saturday, October 10, 2009
White Chicken Chili
I saw this recipe on Good Things Utah the other day. It sounded so good, so I had to try it. I really loved it. Luke liked the flavor, but isn't a fan of soups. Bailee thought it was spicy. I will be making it again though, and probably leave out the red pepper (or put a little less) for Bailee's sake.
So because Luke's not a fan of soups, he took some of this for lunch but just drained the broth and ate it on a tortilla. Yummy. For lunch today I made a plate of nachos using the left overs and also draining the broth. Love recipes like this, where you can cook once and have different meals. Enjoy!
2 (14 oz) cans chicken broth
3-4 chicken breast, trimmed of fat
3 cloves garlic
2 teaspoon ground cumin
2 tsp dried oregano leaves
1 tsp salt
1 tsp crushed red pepper
2 cans great northern beans
1 can white shoepeg corn
3 TBS lime juice
2 TBS chopped fresh cilantro
Add chicken, broth, cumin, oregano, garlic, salt, and red pepper to slow cooker. Cover and let cook for about 6-8 hours on low or until chicken falls apart. Shred the chicken with two forks. Drain and rinse the beans and corn and add them to the slow cooker. Add chopped cilantro and lime juice to slow cooker. Put cover back on and let cook for 30 more minutes until heated through.
And here's the link to the blog this recipe came from.
So because Luke's not a fan of soups, he took some of this for lunch but just drained the broth and ate it on a tortilla. Yummy. For lunch today I made a plate of nachos using the left overs and also draining the broth. Love recipes like this, where you can cook once and have different meals. Enjoy!
2 (14 oz) cans chicken broth
3-4 chicken breast, trimmed of fat
3 cloves garlic
2 teaspoon ground cumin
2 tsp dried oregano leaves
1 tsp salt
1 tsp crushed red pepper
2 cans great northern beans
1 can white shoepeg corn
3 TBS lime juice
2 TBS chopped fresh cilantro
Add chicken, broth, cumin, oregano, garlic, salt, and red pepper to slow cooker. Cover and let cook for about 6-8 hours on low or until chicken falls apart. Shred the chicken with two forks. Drain and rinse the beans and corn and add them to the slow cooker. Add chopped cilantro and lime juice to slow cooker. Put cover back on and let cook for 30 more minutes until heated through.
And here's the link to the blog this recipe came from.
Wednesday, October 7, 2009
Past, Present, Changes
My most recent home project has been the upstairs bathroom. I've been looking for a shower curtain, and stumbled across this one at Target. It was love at first sight! Love the trees, love the colors, love the owls and squirrels. To make it even better, one of CTMH's newest paper packets, Twitterpated, matches it perfectly! (You can check out the paper on my ctmh website!)
This frame probably looks a little funny.... But I covered it in the matching Twitterpated paper, and am going to put some cute pics in tomorrow. Unfortunately, neither of these pictures does the color of the bathroom justice. It is a really pretty green, if your a CTMH fan, it's sweet leaf. The pics look dark, but the bathroom is really bright and fun. Love it! (almost as much as Maddox's room!)
So did you figure out the difference in Maddox?? Besides that he's gaining weight (he's up to 11 lbs 9.5 oz) and getting taller (23 1/2 inches).... No feeding tube! That has been so nice, and kind of stressful at the same time. I have to keep track of every cc he takes in so we can be sure he's getting enough to gain weight. So far, so good, but it's harder than I thought it would be. We also saw the cardiologist last week. Things are pretty much the same, though his heart function is down slightly. They decided to go ahead and put him on a med to help increase the function. We'll keep following up, and hopefully not need to make any major changes or have any surgeries until the first of the year. He's almost 3 months old!!!! It's hard to believe, but we really are so grateful for every minute we have him.
So did you figure out the difference in Maddox?? Besides that he's gaining weight (he's up to 11 lbs 9.5 oz) and getting taller (23 1/2 inches).... No feeding tube! That has been so nice, and kind of stressful at the same time. I have to keep track of every cc he takes in so we can be sure he's getting enough to gain weight. So far, so good, but it's harder than I thought it would be. We also saw the cardiologist last week. Things are pretty much the same, though his heart function is down slightly. They decided to go ahead and put him on a med to help increase the function. We'll keep following up, and hopefully not need to make any major changes or have any surgeries until the first of the year. He's almost 3 months old!!!! It's hard to believe, but we really are so grateful for every minute we have him.
Wednesday, September 23, 2009
Maddox's Room
When we were looking for houses, I kept telling my mom I don't like to paint so I wanted to buy something that didn't need to be painted. She kept telling me that she loves to paint, and would come and help me when I was ready. So this past weekend she came up to hold Maddox and help me paint. This room was already blue, and I love the color. But because of Maddox's 'purple' blood, he always looks a little blue. Being in a blue room just makes him look that much bluer. I love the brown and blue look and had already crocheted him an afghan in those colors, so I decided to paint the room brown. I was even more excited when my mom told me she still had a gallon of brown paint from her last project. So before she came I taped off the blue and did a second coat. Here is the result!
My dad worked on the baby show a few weeks ago and got Maddox and Bailee new furniture. I'm so excited! The set he got Maddox will match the room so perfectly! (I'm going to be selling the changing table, so if you know anyone that needs one.....)
We also painted the master bedroom, but I'm not going to post pics until it's completed. It probably will look a little weird if you don't have my vision of the final product.
Our next project will be flooring. Have I mentioned how awesome my dad and his job is?? He got several pallets of lamenant wood flooring. He's going to help us do the master bedroom, the hallway, and the upstairs living room. So excited!!
We also painted the master bedroom, but I'm not going to post pics until it's completed. It probably will look a little weird if you don't have my vision of the final product.
Our next project will be flooring. Have I mentioned how awesome my dad and his job is?? He got several pallets of lamenant wood flooring. He's going to help us do the master bedroom, the hallway, and the upstairs living room. So excited!!
Our Home
This year our goal was to buy a house. We looked online for awhile and then finally decided to go out with our agent to look at properties just before summer started. We have really felt like now was the time and we needed to be making these decisions. We had the chance to look at a lot of properties, and we even put an offer on one, before Maddox was born.
When Maddox was born and the complications began, we thought maybe we wouldn't be able to get into a home this year. But we both still felt like we needed to be looking. I know it probably seemed weird to a lot of people that we were looking at homes in between all of the stuff going on with Maddox. However, when you know something is right, it's right and you go with it.
We actually found a town home that we loved and really wanted to put an offer on it. But because of the location and community, the only way for us to buy it was with cash or some higher interest rate financing. So it was back to the drawing board so to speak.
For months Judi has been asking us to consider purchasing their home, but we didn't think it was the right move for us. The whole house buying thing was becoming frustrating and contentious for us. Finally a few weeks ago the answer came. Judi told us she was going to give us one last spiel and then she'd leave it alone. It was just crazy how things changed. After that conversation we both felt like this was the right thing for our family. (The same thing happened when they asked us to live in their home while they went on their mission. We resisted and said no, and then suddenly we both knew it was right.)
So in a few short weeks we will be home owners. There are so many positive things about buying this home. We don't have to move again, we already know we love the neighborhood and ward, Judi will still have ties to the area, we're getting everything we wanted out of buying a home, but it mostly comes down to being an answer to a lot of prayers.
When Maddox was born and the complications began, we thought maybe we wouldn't be able to get into a home this year. But we both still felt like we needed to be looking. I know it probably seemed weird to a lot of people that we were looking at homes in between all of the stuff going on with Maddox. However, when you know something is right, it's right and you go with it.
We actually found a town home that we loved and really wanted to put an offer on it. But because of the location and community, the only way for us to buy it was with cash or some higher interest rate financing. So it was back to the drawing board so to speak.
For months Judi has been asking us to consider purchasing their home, but we didn't think it was the right move for us. The whole house buying thing was becoming frustrating and contentious for us. Finally a few weeks ago the answer came. Judi told us she was going to give us one last spiel and then she'd leave it alone. It was just crazy how things changed. After that conversation we both felt like this was the right thing for our family. (The same thing happened when they asked us to live in their home while they went on their mission. We resisted and said no, and then suddenly we both knew it was right.)
So in a few short weeks we will be home owners. There are so many positive things about buying this home. We don't have to move again, we already know we love the neighborhood and ward, Judi will still have ties to the area, we're getting everything we wanted out of buying a home, but it mostly comes down to being an answer to a lot of prayers.
(Judi was planning on getting the house painted before selling, so we got to pick the colors.) We've all been doing some cleaning, reorganizing, and painting. These are all things I would have helped her with to get ready to sell anyways, but it makes it more fun to be making it home permanently.
And since both kiddos were happy and dressed already, I decided to snap a few pictures.
Sunday, September 13, 2009
A day in the life....
I decided to take a few pictures of some of our daily routines.
After Luke goes to work, at least one of the kids get in bed with me. This morning (Friday), both did.
We start with a round of meds. Lasix and Aldactone to get rid of extra fluids, Zantac for stomach acid, and asprin to keep blood from clotting around his shunt. We do this twice a day.
Next up is the antibiotics (every 6 hours). We hook an iv pump to his pic line and run them for 30 minutes. With the flushes before and after, this takes about 45 minutes.
On Wednesday, Maddox's feeding tube was moved from his intestine to his stomach. We are now giving him bolous feedings every 2 hours. They take about 30 minutes. We were very happy to hear that he can stay on continuous feeds through the night until he begins feeding on demand. The red back pack holds his feeding pump and bag.
Now that he has food in his tummy, we get to do the baby spit up thing. Luckily it hasn't been as bad as I expected. But we do have to change clothes and blankets a couple of times a day. The next step will be bottle feeding. We have to take Maddox to a speech therapist before we can bottle feed him. When he swallow's the milk goes in the right place, but he really doesn't know what to do with the milk while it's in his mouth. It'll just take some time and practice.
Check out how nicely that scar is healing! It looks great, especially considering it had to be re-opened when he got the infection. The smaller scars on his belly are from the various drainage tubes he's had. Definitely has an outie belly button! (no thanks to the rt lines that were going in there for the first several weeks of life)
In between all of Maddox's routines, I still have a vibrant 3 year old. Bailee is a wonderful big sister, and such a big helper. She has been so patient with all of the attention Maddox needs. She often will pull out a game to play or her newest love, polly pockets (thanks Tami and Tressa), and play while I'm taking care of Maddox.
Honestly, her new love is her Ballet outfit. She wears it constantly! Bailee gets to go to dance class once a week with her best friend McKinley. I'll have to get a picture of them together next time. So adorable!
It's a good thing Luke is such an amazing dad and husband! He has been so great about helping with all of Maddox's needs, playing with Bailee, and taking care of things around the house as well. I'm so grateful for all that he does!
Next post.....remember how we've been house hunting this summer?? We're about to seal the deal. Pics and the story coming soon.
After Luke goes to work, at least one of the kids get in bed with me. This morning (Friday), both did.
We start with a round of meds. Lasix and Aldactone to get rid of extra fluids, Zantac for stomach acid, and asprin to keep blood from clotting around his shunt. We do this twice a day.
Next up is the antibiotics (every 6 hours). We hook an iv pump to his pic line and run them for 30 minutes. With the flushes before and after, this takes about 45 minutes.
On Wednesday, Maddox's feeding tube was moved from his intestine to his stomach. We are now giving him bolous feedings every 2 hours. They take about 30 minutes. We were very happy to hear that he can stay on continuous feeds through the night until he begins feeding on demand. The red back pack holds his feeding pump and bag.Now that he has food in his tummy, we get to do the baby spit up thing. Luckily it hasn't been as bad as I expected. But we do have to change clothes and blankets a couple of times a day. The next step will be bottle feeding. We have to take Maddox to a speech therapist before we can bottle feed him. When he swallow's the milk goes in the right place, but he really doesn't know what to do with the milk while it's in his mouth. It'll just take some time and practice.
Check out how nicely that scar is healing! It looks great, especially considering it had to be re-opened when he got the infection. The smaller scars on his belly are from the various drainage tubes he's had. Definitely has an outie belly button! (no thanks to the rt lines that were going in there for the first several weeks of life)
In between all of Maddox's routines, I still have a vibrant 3 year old. Bailee is a wonderful big sister, and such a big helper. She has been so patient with all of the attention Maddox needs. She often will pull out a game to play or her newest love, polly pockets (thanks Tami and Tressa), and play while I'm taking care of Maddox.Honestly, her new love is her Ballet outfit. She wears it constantly! Bailee gets to go to dance class once a week with her best friend McKinley. I'll have to get a picture of them together next time. So adorable!
It's a good thing Luke is such an amazing dad and husband! He has been so great about helping with all of Maddox's needs, playing with Bailee, and taking care of things around the house as well. I'm so grateful for all that he does!Next post.....remember how we've been house hunting this summer?? We're about to seal the deal. Pics and the story coming soon.
Sunday, August 30, 2009
Home again.....
Here is Maddox on July 23rd, just after returning from his first open heart surgery. He was 7 days old.
And here is our family on August 23rd. One month after Maddox's first surgery, 7 days after the 2nd surgery (removal of the infection).
Bailee loves her little brother. Unfortunately, she is sick right now and not allowed any where near him. (August 22) So he's missing out on her special kisses.
And here is a picture of Maddox from today. He is such a sweet baby! We are so grateful to have him home, and our family all together.
We are doing this whole new born thing backwards though. He sleeps pretty much through the night right now, but when we get the feeding tube out that will change. We will have to get up every 2 hours and feed him. One of these days we'll get into a routine and figure all of this stuff out. Right now we are giving him meds 6 times a day. 4 of those times are via a pic line using a syringe pump. Yikes! So much for never wanting to be a nurse.
Seriously, we are so grateful to be home and to have Maddox finally here with us. We've got a long road ahead of us, but I figure if we could make it through the past 6 weeks (and we did) than we can handle whatever is coming.
Tuesday, August 25, 2009
Finally!
We are going home tomorrow, right after the 11 am meds. That's how the next 5 weeks will be scheduled, around the meds. I am so excited to get home! Maddox is doing amazing. I know I keep saying this, but he is so much better than when we took him home 2 weeks ago. (wow, that seems like forever ago.) His color is amazing, he's not cranky, (though he may get cranky when he has to see me every day instead of the variety of nurses and drs) he just looks and feels so much better. So I'm counting down the hours! I have to demonstrate my med giving skills 2 more times before they let us leave, and then do it again when the home health nurse comes. I'm becoming a pro. :)
I PROMISE I will get pics posted soon, just as soon as I figure out how to be a mom to 2 kiddo's at the same time. Seriously, can't wait. I totally missed out on the 'sleep when the baby sleeps' and laying around for 6 weeks to recover. (yeah right, like any mom really gets to do that) So instead we'll take walks around the neighborhood and go to the park, avoid places (especially in doors) with lots of people and germs, and find a few signs to post (we love you, but keep your germs.) I'm thinking of getting one for Maddox that says "I know I'm cute but please don't touch or breath on me".
So here we go again....
I PROMISE I will get pics posted soon, just as soon as I figure out how to be a mom to 2 kiddo's at the same time. Seriously, can't wait. I totally missed out on the 'sleep when the baby sleeps' and laying around for 6 weeks to recover. (yeah right, like any mom really gets to do that) So instead we'll take walks around the neighborhood and go to the park, avoid places (especially in doors) with lots of people and germs, and find a few signs to post (we love you, but keep your germs.) I'm thinking of getting one for Maddox that says "I know I'm cute but please don't touch or breath on me".
So here we go again....
Monday, August 17, 2009
I stand corrected...
The last post should have been titled "Maddox is 4 weeks old..." not a month. To celebrate his Month birthday, we brought him to the ER and re-admited him to PICU. Yesterday evening they opened up his chest and scrubbed out a nasty infection. It was really crazy, that was the first time that Maddox wasn't stable through this whole process. After giving him 2 doses of antibiotics they decided to go in and explore the insicion sooner rather than later. We were relieved when it was over and things went better than expected.
The good news was and continues to be that Maddox's little heart is still functioning well. Better than could be expected during/after and infection. We really are at the best hospital with the best team of dr.'s and nurses. Now we'll start the process of weaning him off the vent and pain meds, but that shouldn't take as long as before.
It was comforting to see some familiar faces when we arrived at the PICU yesterday, nurses, dr.'s and the family of a patient. Our hearts and prayers our with the Frandsen family at this time. I cried more for them yesterday than I did for us. I knew Maddox would get better, it just will take time. For them it was a wait and pray situation, hoping for the best. They are part of our PICU family, and we'll always be grateful for knowing them, and the support we felt from them.
The good news was and continues to be that Maddox's little heart is still functioning well. Better than could be expected during/after and infection. We really are at the best hospital with the best team of dr.'s and nurses. Now we'll start the process of weaning him off the vent and pain meds, but that shouldn't take as long as before.
It was comforting to see some familiar faces when we arrived at the PICU yesterday, nurses, dr.'s and the family of a patient. Our hearts and prayers our with the Frandsen family at this time. I cried more for them yesterday than I did for us. I knew Maddox would get better, it just will take time. For them it was a wait and pray situation, hoping for the best. They are part of our PICU family, and we'll always be grateful for knowing them, and the support we felt from them.
Wednesday, August 12, 2009
Maddox is a month old tomorrow....
and we'll be celebrating at HOME!
Yesterday the dr.'s told us we might go home one Wednesday. So we made all the necessary preparations, prayed, crossed our fingers and toes, and spent another night at the hospital. This morning we woke bright and early and waited for the team to do rounds and give us the final verdict. Even after they said yes, we'll send you home.....Luke and I weren't ready to believe it until we were unhooked and out the door. And they really did send us home.
We've been home for a couple of hours now. It's been pretty quiet. Luke went to work for the afternoon, Bailee is with her cousins and will be coming home with Grandma any minute now.
Maddox is still on an NJ feeding tube (it's in his intestine, not his stomache). So a home health nurse came and set me up with a pump for feedings. I feel pretty comfortable with the feeding and the oxygen. Shortly after the nurse left however, I noticed some air in the feeding tube. Not a good thing. So I checked out the pump and there is milk everywhere! Of course while I'm discovering this Maddox wakes up, cries, and I have a hard time getting him to settle down. I finally just shut off the pump and rocked Maddox until he went back to sleep. I had to replace the bag that holds the milk and we got that going again.
The oxygen should be delivered soon and hopefully they'll set us up with a concentrater, a really long hose, and something small and portable.
Tomorrow we start the first of many dr. visits. We'll go to our family dr. and make sure Maddox is up to date on his immunizations and all that good stuff. In two weeks we'll see the cardiologist and also have another swallow study done. The one Monday went pretty well. Maddox didn't fail it, but he also didn't pass with flying colors like we'd hoped. They went ahead and moved his feeding tube to NG (in the stomache) and told us to plan on staying longer so they could wean him to a bottle. When I got back to the hospital Tuesday morning they had decided Maddox was breathing too quickly and they put the tube back to NJ. At first I was a little bugged because I don't think they gave him enough time. BUT, after thinking about it and talking to a couple of nurses I am glad this happend. Now Maddox can have a few more weeks to recover and put some more weight on before we try anything new. I think it will be good for him.
Hopefully we'll be able to settle back into life and get back into a routine. Bailee is going to need some re-training. Spending 4 weeks with her 2 grandma's and no mommy around has her thinking she rules the roost. She is super excited that 'her baby' is home. It'll be fun (hopefully) to see her interact with Maddox.
So, a lot of people want to come meet our little guy. And we want to show him off. BUT, we have to be so so so careful and avoid him getting sick. We really appreciate the thought, but for now we're going to have no visitors rule. Hopefully as he get's better we'll be able to loosen that up some, but really--until after his second surgery (sometime after November) and recovery it will be extremely limited. Any kind of infection would be extremely bad for Maddox. We appreciate everyone understanding this, and helping us out.
I promise more pictures soon!
Yesterday the dr.'s told us we might go home one Wednesday. So we made all the necessary preparations, prayed, crossed our fingers and toes, and spent another night at the hospital. This morning we woke bright and early and waited for the team to do rounds and give us the final verdict. Even after they said yes, we'll send you home.....Luke and I weren't ready to believe it until we were unhooked and out the door. And they really did send us home.
We've been home for a couple of hours now. It's been pretty quiet. Luke went to work for the afternoon, Bailee is with her cousins and will be coming home with Grandma any minute now.
Maddox is still on an NJ feeding tube (it's in his intestine, not his stomache). So a home health nurse came and set me up with a pump for feedings. I feel pretty comfortable with the feeding and the oxygen. Shortly after the nurse left however, I noticed some air in the feeding tube. Not a good thing. So I checked out the pump and there is milk everywhere! Of course while I'm discovering this Maddox wakes up, cries, and I have a hard time getting him to settle down. I finally just shut off the pump and rocked Maddox until he went back to sleep. I had to replace the bag that holds the milk and we got that going again.
The oxygen should be delivered soon and hopefully they'll set us up with a concentrater, a really long hose, and something small and portable.
Tomorrow we start the first of many dr. visits. We'll go to our family dr. and make sure Maddox is up to date on his immunizations and all that good stuff. In two weeks we'll see the cardiologist and also have another swallow study done. The one Monday went pretty well. Maddox didn't fail it, but he also didn't pass with flying colors like we'd hoped. They went ahead and moved his feeding tube to NG (in the stomache) and told us to plan on staying longer so they could wean him to a bottle. When I got back to the hospital Tuesday morning they had decided Maddox was breathing too quickly and they put the tube back to NJ. At first I was a little bugged because I don't think they gave him enough time. BUT, after thinking about it and talking to a couple of nurses I am glad this happend. Now Maddox can have a few more weeks to recover and put some more weight on before we try anything new. I think it will be good for him.
Hopefully we'll be able to settle back into life and get back into a routine. Bailee is going to need some re-training. Spending 4 weeks with her 2 grandma's and no mommy around has her thinking she rules the roost. She is super excited that 'her baby' is home. It'll be fun (hopefully) to see her interact with Maddox.
So, a lot of people want to come meet our little guy. And we want to show him off. BUT, we have to be so so so careful and avoid him getting sick. We really appreciate the thought, but for now we're going to have no visitors rule. Hopefully as he get's better we'll be able to loosen that up some, but really--until after his second surgery (sometime after November) and recovery it will be extremely limited. Any kind of infection would be extremely bad for Maddox. We appreciate everyone understanding this, and helping us out.
I promise more pictures soon!
Wednesday, August 5, 2009
Still here, or there, or somewhere in between.....
I really thought my next blog would be that we were moved out of PICU and into a regular room. But I suppose some of you will want an update anyways....
So Maddox is doing awesome. He is still breathing faster than they would like, but what else is new. I think his breathing slowed a little after they took him off the high-flow oxygen, it was pretty irritating for him. Who likes air blown up their nose and random squirts of water in the nose and eyes?? Anyways, they have him on 100% oxygen right now, which is what he would come home on, and he's doing well with that. I need to get a picture of him today, not wrapped up, so you can see that he looks like a baby now. Compared to when he had his surgery, he has like no tubes. Just his oxygen and feeding tube. So that's exciting.
Today they may move him from picu to the floor, but we'll see. I'm trying to be patient, that's the next step though. And the one thing that's in between picu and coming home. Just waiting for a call from the nurse to see what the plan for the day is.
Bailee got to hold Maddox on Sunday and she was thrilled. She would have held him for hours if she could have. Now she's even more excited for 'her' baby to come home. No pictures today, but I'll put some more soon.
So Maddox is doing awesome. He is still breathing faster than they would like, but what else is new. I think his breathing slowed a little after they took him off the high-flow oxygen, it was pretty irritating for him. Who likes air blown up their nose and random squirts of water in the nose and eyes?? Anyways, they have him on 100% oxygen right now, which is what he would come home on, and he's doing well with that. I need to get a picture of him today, not wrapped up, so you can see that he looks like a baby now. Compared to when he had his surgery, he has like no tubes. Just his oxygen and feeding tube. So that's exciting.
Today they may move him from picu to the floor, but we'll see. I'm trying to be patient, that's the next step though. And the one thing that's in between picu and coming home. Just waiting for a call from the nurse to see what the plan for the day is.
Bailee got to hold Maddox on Sunday and she was thrilled. She would have held him for hours if she could have. Now she's even more excited for 'her' baby to come home. No pictures today, but I'll put some more soon.
Monday, July 27, 2009
Ahead of schedule
Well, Maddox is really doing great, and Dr. Kaza says he's ahead of schedule. It seems a little weird to say that, considering he has this major heart issue and just had open heart surgery.
2 weeks ago we were worrying about what house to put an offer on and learning the language of real estate. Now we're learning the language of the medical world. 2 weeks ago words like hypoplastic left lung, ventilator, chest tubes, SATS etc. weren't even in our vocabluary. Today they seem as normal as anything.
I walk into the room and start checking monitors. Taking note of any changes, asking questions about medications. Feeling great about things like removal of tubes and sensors, amount of oxygen being given reduced, medication dosages reduced, and after 11 days Maddox finally getting some milk in his belly. It's easy to feel hopeful even excitment at this moment.
And then I walk out of the room. The baby next door is having another 'down' day. We've made a connection with his parents, feel like we can realate to each other. His heart defect is different, but meds and machines are very similar. We are cheering each other on, feeling the sadness of a down day, reveling in each little improvement.
Just down the hall is another hypoplastic left baby. Yesterday he was doing well, and mom was happy with progress. Today I stopped in to say hello and was met with tears. He has an infection and that is extremely critical and scary for these babies. The infection goes straight for foreign material, which in this case means the tube placed in the heart durring surgery.
Two doors down there was a 3rd hypoplastic left baby. His parents received the unimagineable news of his being the worst they'd ever seen. They had to make an extremely tough decision. Saturday they took him home to love him for the little time they can.
This has been a very humbling 11 days. I've seen a lot. I've heard a lot. I've learned a lot. I've prayed a lot. We've made decisions about things we never dreamed about. We've considered posibilities that never crossed our minds. We've walked a path that many have walked before, and many will walk again. We have experienced great love, fasting, prayer. Incredible strength, charity and kindness. Grattitude for the little things as well as the big things have overwhelmed us.
I have learned something about trials as well. We all have them, and some may seem worse than others. Several months ago, I cried as my brother and sister in law lost their sweet baby girl. I couldn't imagine anything more difficult. I felt such sadness for their family, and such grattitude for my healthy baby growing inside. Several weeks ago Dad B. passed away and I felt relief for him and grief for Mom. Losing your spouse seemed like the most difficult thing you could deal with. Last week I thought deciding to take your baby home and love him, knowing you wouldn't have him for long, would be the hardest thing to face. Today I realized that trials are trials. We all have them. They are all difficult. But I know this. The Lord doesn't give us anything that we can't handle. These trials make us stretch and grow and learn. Without them there would be no progression. So it's ok for me to enjoy these great milestones Maddox is reaching, and at the same time be sad for those precious babies around us who are having 'down' days. I can pray that they will be strengthend through their time of trial and look forward to celebrating their next up day.
2 weeks ago we were worrying about what house to put an offer on and learning the language of real estate. Now we're learning the language of the medical world. 2 weeks ago words like hypoplastic left lung, ventilator, chest tubes, SATS etc. weren't even in our vocabluary. Today they seem as normal as anything.
I walk into the room and start checking monitors. Taking note of any changes, asking questions about medications. Feeling great about things like removal of tubes and sensors, amount of oxygen being given reduced, medication dosages reduced, and after 11 days Maddox finally getting some milk in his belly. It's easy to feel hopeful even excitment at this moment.
And then I walk out of the room. The baby next door is having another 'down' day. We've made a connection with his parents, feel like we can realate to each other. His heart defect is different, but meds and machines are very similar. We are cheering each other on, feeling the sadness of a down day, reveling in each little improvement.
Just down the hall is another hypoplastic left baby. Yesterday he was doing well, and mom was happy with progress. Today I stopped in to say hello and was met with tears. He has an infection and that is extremely critical and scary for these babies. The infection goes straight for foreign material, which in this case means the tube placed in the heart durring surgery.
Two doors down there was a 3rd hypoplastic left baby. His parents received the unimagineable news of his being the worst they'd ever seen. They had to make an extremely tough decision. Saturday they took him home to love him for the little time they can.
This has been a very humbling 11 days. I've seen a lot. I've heard a lot. I've learned a lot. I've prayed a lot. We've made decisions about things we never dreamed about. We've considered posibilities that never crossed our minds. We've walked a path that many have walked before, and many will walk again. We have experienced great love, fasting, prayer. Incredible strength, charity and kindness. Grattitude for the little things as well as the big things have overwhelmed us.
I have learned something about trials as well. We all have them, and some may seem worse than others. Several months ago, I cried as my brother and sister in law lost their sweet baby girl. I couldn't imagine anything more difficult. I felt such sadness for their family, and such grattitude for my healthy baby growing inside. Several weeks ago Dad B. passed away and I felt relief for him and grief for Mom. Losing your spouse seemed like the most difficult thing you could deal with. Last week I thought deciding to take your baby home and love him, knowing you wouldn't have him for long, would be the hardest thing to face. Today I realized that trials are trials. We all have them. They are all difficult. But I know this. The Lord doesn't give us anything that we can't handle. These trials make us stretch and grow and learn. Without them there would be no progression. So it's ok for me to enjoy these great milestones Maddox is reaching, and at the same time be sad for those precious babies around us who are having 'down' days. I can pray that they will be strengthend through their time of trial and look forward to celebrating their next up day.
Friday, July 24, 2009
Maddox Update
Maddox is doing great. The surgeon, nurses, and dr.'s have great reports to give. Maddox is shedding fluids super quickly, so they actually cut back his lasics (which help him pee off the fluid) tonight. They are thinking they will be able to close his chest on Sunday, which is super exciting. He really looks good too, considering.
So I guess we really haven't explained the surgery. This was the first of 3. For this stage one surgery they accomplished 3 things: first put in a gore-tex tube to help blood flow from the right side of the heart to the lungs, and allows the aorta to move blood to the body; 2nd they repaired the coarctation of the aorta- it was too small so they made it bigger; 3rd they removed some tissue to create a bigger space for the blood to mix.
So now that the first surgery is complete, we can start looking towards bringing him home. After they get his chest closed, they will begin feeding him milk via a feeding tube. The next step will be taking him off the ventilator and weaning him from a medicine that helps his heart contract. They say recovery is between 2 1/2 weeks and 4 weeks, so we still have a ways to go, but things are looking good.
Bailee seems to be handling things well. I know it's going to be harder as the weeks go on, but we've been blessed to have so much help from Grandma B. and Grammy and Grampy, not to mention the rest of the family and friends. We really appreciate all of the help from everyone.
We'll keep updating. Thanks for all of the well wishes and prayers. We know that they help!
Hypoplastic Left Heart Syndrome
So I guess we really haven't explained the surgery. This was the first of 3. For this stage one surgery they accomplished 3 things: first put in a gore-tex tube to help blood flow from the right side of the heart to the lungs, and allows the aorta to move blood to the body; 2nd they repaired the coarctation of the aorta- it was too small so they made it bigger; 3rd they removed some tissue to create a bigger space for the blood to mix.
So now that the first surgery is complete, we can start looking towards bringing him home. After they get his chest closed, they will begin feeding him milk via a feeding tube. The next step will be taking him off the ventilator and weaning him from a medicine that helps his heart contract. They say recovery is between 2 1/2 weeks and 4 weeks, so we still have a ways to go, but things are looking good.
Bailee seems to be handling things well. I know it's going to be harder as the weeks go on, but we've been blessed to have so much help from Grandma B. and Grammy and Grampy, not to mention the rest of the family and friends. We really appreciate all of the help from everyone.
We'll keep updating. Thanks for all of the well wishes and prayers. We know that they help!
Hypoplastic Left Heart Syndrome
Thursday, July 23, 2009
Bailee meets Maddox
Tuesday afternoon Bailee got a special visit from a new friend here at PMCM. Joy takes one on one time with siblings of patients and talks to them about what's going on. Bailee got to pick a 'Hospital Buddy" to take care of while mom takes care of Baby Maddox. Joy showed her all about the stickers and tubes on Maddox, how they give medicine and talked to her about the Dr.'s. Bailee was pretty serious (as usual) but really liked her 'teacher' and 'class'. Next we went in to see Maddox. Bailee was so cute about it! She talked to him, but was disapointed when he didn't talk back. (Even though we have talked for weeks about how babies don't have words yet.) She told him she loved him, and she got to rub his head and touch his feet. Bailee thought it was pretty cool that Maddox was using the blanket she picked out and had the baby Mickey she bought for him. It wasn't a long visit, but I really think it helped her. She got to see where we've been and spend a little time with her baby. 
We also got to take our first family picture with the new addition.Tuesday, July 21, 2009
Look Mom, no Tube!
I got to the hospital yesterday morning and had a wonderful surprise! They took out the ventilator! I was so excited. Maddox was awake quite a bit and had his eyes opened for awhile. It was amazing to have him looking at me and the world around him. I loved every second. I also got to here him coo and cry. I never thought that I would look forward to the crying, but it nearly made me cry. With the vent in you could see that he was crying but no sound would come out.
The surgeon came in yesterday afternoon, Dr. AK, and gave me another explanation of the surgery. He also let us know that he'd be doing it Wednesday morning. I never thought you could be happy knowing your child was scheduled for open heart surgery, but it really is a relief to know it will be over soon. Tomorrow will be a long day, the surgery is about 6 hours, but I really look forward to the recovery and the chance to bring him home. Recovery time is expected to be from 2 1/2 weeks to a month.
Thank you so much everyone for the love and support. We have truly felt the prayers and fasting of so many. It's a feeling that I'm not sure I've felt before. We have been overwhelmed by the love that has been shown and we are so grateful to be surrounded by so many wonderful people.
Thank you so much everyone for the love and support. We have truly felt the prayers and fasting of so many. It's a feeling that I'm not sure I've felt before. We have been overwhelmed by the love that has been shown and we are so grateful to be surrounded by so many wonderful people.
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