Two weeks after leaving the NICU, Flint and I are back at the hospital for his hernia repair. While any surgery is a little scary, this one is no big deal compared to his shunt surgery - THANK GOODNESS! This surgery is usually a one-day thing, but because he's so young and little he will stay overnight for precautionary monitoring.
Being here again has made me reflect on the events of the last 5 months, since we first started finding out about Flint's condition. I have experienced and learned things that I will never forget, and I sometimes feel like Heavenly Father created this whole experience to be a personal tutorial, catered just for me. Through Flint, I feel Him smoothing out my rough edges and providing just enough fire to mold me into more of the person He wants me to be. I've still got a long ways to go, but this experience is certainly helping me on my way!
I am learning that the time to prepare for hard things is now, BEFORE the hard moment strikes. In our life, we all will experience those moments where our lives take a dramatic change from where we wanted. From that point on, our life will never be the same. Who we are AT THAT MOMENT is the only tool we have to pull us through. When this all got really crazy, I had to run on the fumes of instinct. I didn't have the time or mental energy to even think about my actions. Whatever was my base instinct was all I could do. This trial was designed to expose me for who I really am and strip me down to my core. When all the non-important stuff was out of the way, it was very easy to see me for who I really am. Everything about me became magnified, both strengths, AND weaknesses. I am glad I had sufficient strength and faith to rely on the Lord, and I am even more grateful for His patience in dealing with my abundant weaknesses!
I am learning how important it is to look past outward appearances and behaviors and into the hearts of the people I come in contact with. I know that until he has hair, the first thing people will notice when they see Flint, is the shunt in his head. What breaks my heart though, is the thought that the shunt will prevent someone from seeing what a beautiful baby Flint is. They will get so caught up in "What is that weird thing on his head?" that they will miss seeing the real Flint. I know that this is going to happen, because it's exactly what I did when I first saw pictures of babies with shunts. All I could see was the one weird thing on the baby's head, and it kept me from seeing all the other beautiful things that made that baby who he was. I have since wondered how many times I have done that same thing with other people, in other situations? Whether it's a physical defect, a pattern of bad behavior, or even a difference of opinion, have I gotten so stuck on the one "distraction' that I fail to see who the person really is?
I am learning that people will find an infinite number of ways to serve when the need arises. We have been inundated by acts of service in our behalf! People have brought us meals, watched our kids, cleaned our house, chauffeured me around when I couldn't drive, sent care packages and treats, brought toys for our kids, made special mementos to help us remember this time, mowed the back acre of our yard, crocheted baby booties and blankets, visited in the hospital, sent notes, and the list goes on and on! So often, a friend would send a text to see how I was doing right when I was feeling discouraged. Friends and family who have lost babies have shared their stories with me, even when I am sure it must have been hard for them to relive so many of their experiences. I would imagine it must even be hard for them to read my blog and know that my outcome with my child was so different than their outcome was with theirs. Whether the person was a family member, someone from church, an old high school friend, someone from my mission, a coworker of Brock's, or a parent from Duke's football team, we have been humbled at the many people who have done all they can to walk with us down a road that was very lonely and frightening. Even knowing that people were following our story on this blog lifted our spirits and made this whole ordeal a lot easier to handle!
I am learning to just let the Lord be in control. Nothing about this whole experience is what I "wanted." I wanted a girl and I got a boy. I wanted a vaginal delivery and I got a C-section. I wanted a perfect and "normal" baby, but instead I got one who is going to have challenges. It amazes me now to realize that I even wanted that baby to return home to Heavenly Father so he wouldn't have to deal with such a challenging life. Instead of all those things I wanted, I got FLINT! And now, I can't imagine wanting anything other than him! I am so glad that I got what I needed instead of what I wanted, because what I needed has now become the thing that I most desire. In this situation, I had no choice other than to accept the things that I didn't want. Sometimes though, we DO get to choose whether we're going to do something the Lord's way and let Him be in control. I am learning that the times of real growth come when we choose to follow the Lord's direction, even when His way isn't the same way WE want.
Finally, the most important thing I have learned, is that when the Lord is involved, there is a LOT of room for miracles. When we first learned that Flint's life would not be the perfect one I envisioned, there were only two miracles that I thought could even exist: that Flint would either be healed completely, or that he would die soon after he was born so he wouldn't have to go through a lifetime of challenges associated with his disability. Neither of those miracles occurred, but time and time again over the last 2 months, I have seen other miracles worked in behalf of Flint and our family. When my doctor first told me about Flint's growth restriction and the placenta giving out early, she said we would hopefully "make it to 24 weeks because then the baby would be viable." I wanted a lot more than just "viable" and was in agony over what they would try to do to my baby if he was born that early and that small. My sister lost her baby at 32 weeks, and he weighed 3 pounds. I held him in my arms, and while he was very small, he still felt like a baby and not a doll to me. Because of that experience, I always felt like Flint would have a good shot at life if we could just make it to 32 weeks and 3 pounds. What a miracle when I delivered at 34 weeks and he weighed 3 pounds, 1 ounce! All through the pregnancy, we didn't know if he would make it here alive, and if he did, we didn't know if he would continue to live. There was a high likelihood that he would need to be intubated, and there were a whole slew of possible problems that he would have to face. Not only did he make it here alive (barely), but his respiration was great, and other than the shunt, he has had very little problems. So many miracles happened in getting his shunt placed. From insurance covering the flight, to having met one of the few pediatric neurosurgeons in the region just weeks before, to getting financial help with the trip from the Children's Miracle Network and Ronald McDonald House, to having help from many people at home and in Dallas to make it happen, and from Flint's tiny little body handling the surgery as well as he did, we have been reminded continually that there are LOTS of miracles to be had! As my OB doctor said recently when we were discussing why this happened with Flint: "There's really no WHY with this situation. This is just how Flint was made to be. He just was not bound for life on this earth without modern medicine." No, it is obvious to me that Flint would not be here without the help of medicine. But it is even more clear that he would not be here without the MANY miracles that Heavenly Father has worked in his behalf. I think that one of Flint's main purposes in life, is to show the world that miracles have not ceased. God is alive and well and intimately aware of our lives. He is all-powerful and uses that power to bless our lives. It is up to us whether we will recognize His hand in our daily actions. With God, there are always miracles to be had, if we just open our eyes to see them.
This Sunday, Flint is going to make a brief appearance at church (due to his prematurity and it being RSV season, his doctors have told us to keep him away from large crowds until Spring). In a special ceremony (kind of like a Christening), Brock and other worthy priesthood holders will take Flint in their arms and give him a special blessing for his life. This is something I didn't know if I would get to witness, and I am so looking forward to hearing a little more of what Heavenly Father has in store for our Flint. As Flint continues to grow, I am sure he will continue to teach me many lessons. I am grateful Flint chose to come to earth in this way, so he could help his momma be a better person. I am trying to learn, and hoping I measure up to the greatness of the spirit in this sweet little boy.
Tuesday, October 22, 2013
Friday, October 18, 2013
Getting Home
My due date was 6 days ago, and I'm sitting at home enjoying my beautiful, healthy 7 week old son. What a ride it has been! I am so grateful that Flint is home and that we are able to enjoy him whenever and however we want. We feel SO blessed!
Our last few days at the NICU went well as we just focused on making sure Flint was a good, consistent eater. I am so grateful that the doctors and nurses slowed down and weren't in a rush to get us out of there until WE were ready to get out of there! Of course, we all wanted Flint home so we could be together as a family. More than that though, I wanted him READY to be home. It took awhile of trying different things, but he finally got the hang of nursing and I was pretty confident that all would go well at home.
On Monday (the 7th), they told us we could "room-in" that night and we should plan on going home on Tuesday. You "room-in" by sleeping with your baby in a room across the hall from the NICU. It's kind of a dress rehearsal for going home, where you can make sure everything runs smoothly but if it doesn't, the doctors and nurses are there to help. We really didn't NEED to room-in, since Flint doesn't have any extra equipment needed for his day-to-day living. However, he had never nursed more than 3 feedings in a row, and no one was sure how he would do if he had to nurse more than that, so we felt it could only help us. We decided not to tell anyone we were probably coming home, because we had been scheduled for a room-in the week before, and then Flint had his eating setback. We didn't want to disappoint anyone again, especially our kids, so this time around we kept things to ourselves in case it didn't work out.
Rooming-in went great, and Flint ate like a champ the whole time! The only drawback to the whole scenario was that it reminded me why I have NEVER had a baby sleep in the same room as me. Oh my WORD! I forgot how noisy babies are! Flint grunted and squeaked all night long, and even though he only ate a couple of times that night, I hardly got any sleep. It was all worth it though, to know that Flint was finally ready to come home.
The next morning, Brock left the hospital and went to work, while our friend who stayed with the kids the previous night got them to school. I hung out at the hospital and waited on paperwork so we could be officially discharged. At about noon, the nurse had me take my stuff down to the van, so the only thing left to haul down was Flint. I got everything loaded in the van and came back up, expecting to be able to take Flint, when I was told there was a hold up. As the discharging nurse did her final evaluation of Flint, she found that he had a hernia that needed to be fixed. She had paged the surgeon on call and asked him to come look at it and see when he could fix it. She said he would probably fix it right then, which would mean Flint wouldn't be discharged that day. AGH! Can this kid ever catch a break? Not only was I disappointed about the possibility of not going home that day, but I was also worried that having the surgery would cause him to have another eating setback, right when he was finally getting everything figured out.
Luckily for me, there were no more surgical spots open that day. Plus, the surgeon agreed that it would be better for him to go home and get really comfortable with nursing BEFORE the surgery, so there wouldn't be any major setbacks there this time around. His surgery is scheduled for next Tuesday, the 22nd, and then hopefully this little boy can take a rest from pokes and prods!
By the time all this was figured out, it was already almost 3:00. My kids get out of school at 3, and our plan all along had been to be home waiting for the kids when they got there. Brock picked them up and then ran a couple of quick errands so I could have time to get Flint home and ready for the big surprise.
When I walked in the door of my home though, I realized that the surprise was on ME! Unbeknownst to me, six of my friends had contacted Brock and arranged to come clean my home while I was gone. They didn't know Flint was coming home too, they just felt inspired to help. What a blessing it was to walk into my home with my sweet new baby, and have it cleaned top-to-bottom!
I sat Flint down in his carseat in the middle of the living room and waited. Just a few minutes later, I heard the garage door open and the kids started coming in. I didn't say a word; I just sat there as one-by-one, they saw him, screamed with delight, and came over to have a better look. It was SUCH a sweet moment! These wonderful big siblings have been through a lot over the last several months, and it was so touching for them to finally get their time with their brother.
The last week and a half have been wonderful! We've all spent lots of time cuddling and holding him, and he is adjusting to his new home. Even though he's 7 weeks old, he's still developmentally only 1 week old, so he's doing all the typical brand newborn things. This means that between him and the 4 other kids and their schedules, I am getting very little sleep, but it is so worth it! I wouldn't trade it for anything, but now you know why it's taken me so long to get this update written and posted. We're busy enjoying life and adjusting to being a family of 7!
Because we didn't know if Flint would even make it through the pregnancy, I was never able to bring myself to set up his room. I just couldn't bear the thought of unpacking all the baby clothes and setting up his crib if he wasn't going to be around to use them. While it has added a measure of chaos to be doing all those things now, I am so grateful I get to do it at all! It amazes me that a couple of months ago I didn't know if Flint would make it and was even praying he WOULDN'T, because I thought his condition would be so grave. And now, he is home and looking and acting like any other baby would!
At this point, Flint has a couple of follow-up appointments. He had his final retina check on Tuesday and everything looked good, so at this point we can check that off our list for awhile at least. He went to the pediatrician a week ago and weighed 6 pounds (he doubled his birth-weight in 6 weeks - what a TUB!). :) Next week he has his surgery, and then the week after he has a follow-up with the neurosurgeon, another with the pediatrician, and one more with the occupational therapist. After that week, it will mainly be the occupational therapist and neurosurgeon who will follow him, other than the normal well child exams with the pediatrician. The occupational therapist and neurosurgeon will continue to monitor his progress and get others involved if necessary as Flint grows and we get a better feel for how Dandy Walker will affect him. As we've said all along, this particular condition has a wide range of levels, from hardly any issues at all, to severely limited functioning. Only time and Flint will tell us where he falls on the spectrum.
In the meantime, we are loving time with him in our family. We all love him to pieces, and he seems to be thriving on that love in our home. It's a good thing he loves our home so much, because that's pretty much all he's going to see for the next few months. RSV is a BEAST with preemies, so we're not really going to take him ANYWHERE until Spring is here. It will be hard to juggle everything going on with one of us needing to stay home with Flint, but we are grateful we have that challenge!
We will continue to actively pray for miracles in Flint's behalf for a very long time, and are so grateful for all your support! I am just so amazed at the miracles that this little boy has already shown me, and I feel so blessed!
Our last few days at the NICU went well as we just focused on making sure Flint was a good, consistent eater. I am so grateful that the doctors and nurses slowed down and weren't in a rush to get us out of there until WE were ready to get out of there! Of course, we all wanted Flint home so we could be together as a family. More than that though, I wanted him READY to be home. It took awhile of trying different things, but he finally got the hang of nursing and I was pretty confident that all would go well at home.
On Monday (the 7th), they told us we could "room-in" that night and we should plan on going home on Tuesday. You "room-in" by sleeping with your baby in a room across the hall from the NICU. It's kind of a dress rehearsal for going home, where you can make sure everything runs smoothly but if it doesn't, the doctors and nurses are there to help. We really didn't NEED to room-in, since Flint doesn't have any extra equipment needed for his day-to-day living. However, he had never nursed more than 3 feedings in a row, and no one was sure how he would do if he had to nurse more than that, so we felt it could only help us. We decided not to tell anyone we were probably coming home, because we had been scheduled for a room-in the week before, and then Flint had his eating setback. We didn't want to disappoint anyone again, especially our kids, so this time around we kept things to ourselves in case it didn't work out.
Rooming-in went great, and Flint ate like a champ the whole time! The only drawback to the whole scenario was that it reminded me why I have NEVER had a baby sleep in the same room as me. Oh my WORD! I forgot how noisy babies are! Flint grunted and squeaked all night long, and even though he only ate a couple of times that night, I hardly got any sleep. It was all worth it though, to know that Flint was finally ready to come home.
The next morning, Brock left the hospital and went to work, while our friend who stayed with the kids the previous night got them to school. I hung out at the hospital and waited on paperwork so we could be officially discharged. At about noon, the nurse had me take my stuff down to the van, so the only thing left to haul down was Flint. I got everything loaded in the van and came back up, expecting to be able to take Flint, when I was told there was a hold up. As the discharging nurse did her final evaluation of Flint, she found that he had a hernia that needed to be fixed. She had paged the surgeon on call and asked him to come look at it and see when he could fix it. She said he would probably fix it right then, which would mean Flint wouldn't be discharged that day. AGH! Can this kid ever catch a break? Not only was I disappointed about the possibility of not going home that day, but I was also worried that having the surgery would cause him to have another eating setback, right when he was finally getting everything figured out.
Luckily for me, there were no more surgical spots open that day. Plus, the surgeon agreed that it would be better for him to go home and get really comfortable with nursing BEFORE the surgery, so there wouldn't be any major setbacks there this time around. His surgery is scheduled for next Tuesday, the 22nd, and then hopefully this little boy can take a rest from pokes and prods!
By the time all this was figured out, it was already almost 3:00. My kids get out of school at 3, and our plan all along had been to be home waiting for the kids when they got there. Brock picked them up and then ran a couple of quick errands so I could have time to get Flint home and ready for the big surprise.
When I walked in the door of my home though, I realized that the surprise was on ME! Unbeknownst to me, six of my friends had contacted Brock and arranged to come clean my home while I was gone. They didn't know Flint was coming home too, they just felt inspired to help. What a blessing it was to walk into my home with my sweet new baby, and have it cleaned top-to-bottom!
I sat Flint down in his carseat in the middle of the living room and waited. Just a few minutes later, I heard the garage door open and the kids started coming in. I didn't say a word; I just sat there as one-by-one, they saw him, screamed with delight, and came over to have a better look. It was SUCH a sweet moment! These wonderful big siblings have been through a lot over the last several months, and it was so touching for them to finally get their time with their brother.
The last week and a half have been wonderful! We've all spent lots of time cuddling and holding him, and he is adjusting to his new home. Even though he's 7 weeks old, he's still developmentally only 1 week old, so he's doing all the typical brand newborn things. This means that between him and the 4 other kids and their schedules, I am getting very little sleep, but it is so worth it! I wouldn't trade it for anything, but now you know why it's taken me so long to get this update written and posted. We're busy enjoying life and adjusting to being a family of 7!
Because we didn't know if Flint would even make it through the pregnancy, I was never able to bring myself to set up his room. I just couldn't bear the thought of unpacking all the baby clothes and setting up his crib if he wasn't going to be around to use them. While it has added a measure of chaos to be doing all those things now, I am so grateful I get to do it at all! It amazes me that a couple of months ago I didn't know if Flint would make it and was even praying he WOULDN'T, because I thought his condition would be so grave. And now, he is home and looking and acting like any other baby would!
At this point, Flint has a couple of follow-up appointments. He had his final retina check on Tuesday and everything looked good, so at this point we can check that off our list for awhile at least. He went to the pediatrician a week ago and weighed 6 pounds (he doubled his birth-weight in 6 weeks - what a TUB!). :) Next week he has his surgery, and then the week after he has a follow-up with the neurosurgeon, another with the pediatrician, and one more with the occupational therapist. After that week, it will mainly be the occupational therapist and neurosurgeon who will follow him, other than the normal well child exams with the pediatrician. The occupational therapist and neurosurgeon will continue to monitor his progress and get others involved if necessary as Flint grows and we get a better feel for how Dandy Walker will affect him. As we've said all along, this particular condition has a wide range of levels, from hardly any issues at all, to severely limited functioning. Only time and Flint will tell us where he falls on the spectrum.
In the meantime, we are loving time with him in our family. We all love him to pieces, and he seems to be thriving on that love in our home. It's a good thing he loves our home so much, because that's pretty much all he's going to see for the next few months. RSV is a BEAST with preemies, so we're not really going to take him ANYWHERE until Spring is here. It will be hard to juggle everything going on with one of us needing to stay home with Flint, but we are grateful we have that challenge!
We will continue to actively pray for miracles in Flint's behalf for a very long time, and are so grateful for all your support! I am just so amazed at the miracles that this little boy has already shown me, and I feel so blessed!
It's so tiring when you're trying to GROW! :)
Tuesday, October 8, 2013
He's Home!
That's right! Flint was discharged from the hospital today and we are SO excited to all be home together. I'll write more details later but wanted you all to know that your prayers paid off and Flint is enjoying the love of his family now. We are so blessed and grateful for the Lord's miracles on our behalf!
Friday, October 4, 2013
Retirement
This post is long overdue, and now that I have a few moments, it is time for a little tribute!
My mom was a stay-at-home mom until my youngest sister started school. When that happened, my mom became an elementary school music teacher, and boy was she good! She loved her job and the students she taught (most of the time), but after 20 years of teaching, she finally retired last year. Ahhh! The good life! My mom looked forward to lots of relaxing and vacationing, and basically just doing whatever she wanted, whenever she wanted.
Well, in the year since my mom retired, she has had a daughter lose a baby at 17 weeks of pregnancy, her mother-in-law died and her estate had to be settled, then her father died and his house had to be sold, and then finally I gave birth to a little boy who we weren't sure would even make it, but had brain surgery and is now thriving and adjusting to life. In every one of those situations, my mom showed up to help, mourn, support, and serve. These visits have taken her to Dallas, Utah on several occasions, and to our house TWICE in three weeks. I know that my mom would have LOVED to do other things during these experiences, and she had to sacrifice a lot to be able to help. But I also know these experiences ended up being some of the most sacred in her life.
I can't speak for the others she helped, but I can say that on my end of things, I didn't have to even ASK her to come, she just volunteered and did it. When I found out I was being induced, she and my dad jumped in the car immediately and made their way here to help. I will always remember when they walked into the hospital room after Flint was born, how Brock and I both collapsed in their arms in tears. We had been brave and strong all day and finally we had someone there to be strong for us. When Flint's surgery was finally scheduled, my mom and dad both drove up and spent the week taking care of them so Brock and I could both be with Flint and focus on him.
I have always been very independent and as an adult, never really needed my mom. I honestly think that is a tribute to the kind of parent she is, because she raised me to be able to take care of myself. However, this whole ordeal with Flint has had me running to her in tears on multiple occasions. And ALWAYS, she has been there to catch me when I needed it. She has listened when I needed it and shared wisdom when I couldn't come up with the right answer. She has given of herself by taking care of my kids so I didn't have to worry about them and not once did she even joke about it being difficult. I'm sure it was hard for her to take care of my four big kids when she's been "retired" from that kind of parenting for so long, but she jumped right in and didn't complain once.
No less deserving of this tribute has been my dad. He's always been right there beside my mom and has missed work and given up pay to be able to be here. He's helped me stand when it was hard to do it on my own. He's not afraid to cry with me and has helped me sort out my feelings and fears.
Most important, both of my parents have continually pointed me to the source of the only TRUE comforter, my Heavenly Father, and their wisdom and calmness have brought hope and faith to me when I struggled.
I am sure that Brock would say the same thing about the support he has received from his parents. I know they have been a calming and powerful influence for him as he has gone through this as well. We are both blessed by good parents who know what it means to truly parent. They know that parenting adult children means that there are some things that you DO retire from; they know it's not their business how we raise our kids, where we live, how we manage our money, or what jobs we choose to take. But for all the other aspects of parenting - the loving, supporting, listening, and "showing up," they know that is something they will never retire from! I really don't know how we could have managed the last 5 months without their support, and I felt I would be ungrateful if I didn't publicly acknowledge all they've done for our family.
Believe me though, I REALLY hope that the next year brings a much more relaxing retirement to my mom. Not only does she deserve it, but hopefully, that will mean that things have calmed down a little bit for all of us!
My mom was a stay-at-home mom until my youngest sister started school. When that happened, my mom became an elementary school music teacher, and boy was she good! She loved her job and the students she taught (most of the time), but after 20 years of teaching, she finally retired last year. Ahhh! The good life! My mom looked forward to lots of relaxing and vacationing, and basically just doing whatever she wanted, whenever she wanted.
Well, in the year since my mom retired, she has had a daughter lose a baby at 17 weeks of pregnancy, her mother-in-law died and her estate had to be settled, then her father died and his house had to be sold, and then finally I gave birth to a little boy who we weren't sure would even make it, but had brain surgery and is now thriving and adjusting to life. In every one of those situations, my mom showed up to help, mourn, support, and serve. These visits have taken her to Dallas, Utah on several occasions, and to our house TWICE in three weeks. I know that my mom would have LOVED to do other things during these experiences, and she had to sacrifice a lot to be able to help. But I also know these experiences ended up being some of the most sacred in her life.
I can't speak for the others she helped, but I can say that on my end of things, I didn't have to even ASK her to come, she just volunteered and did it. When I found out I was being induced, she and my dad jumped in the car immediately and made their way here to help. I will always remember when they walked into the hospital room after Flint was born, how Brock and I both collapsed in their arms in tears. We had been brave and strong all day and finally we had someone there to be strong for us. When Flint's surgery was finally scheduled, my mom and dad both drove up and spent the week taking care of them so Brock and I could both be with Flint and focus on him.
I have always been very independent and as an adult, never really needed my mom. I honestly think that is a tribute to the kind of parent she is, because she raised me to be able to take care of myself. However, this whole ordeal with Flint has had me running to her in tears on multiple occasions. And ALWAYS, she has been there to catch me when I needed it. She has listened when I needed it and shared wisdom when I couldn't come up with the right answer. She has given of herself by taking care of my kids so I didn't have to worry about them and not once did she even joke about it being difficult. I'm sure it was hard for her to take care of my four big kids when she's been "retired" from that kind of parenting for so long, but she jumped right in and didn't complain once.
No less deserving of this tribute has been my dad. He's always been right there beside my mom and has missed work and given up pay to be able to be here. He's helped me stand when it was hard to do it on my own. He's not afraid to cry with me and has helped me sort out my feelings and fears.
Most important, both of my parents have continually pointed me to the source of the only TRUE comforter, my Heavenly Father, and their wisdom and calmness have brought hope and faith to me when I struggled.
I am sure that Brock would say the same thing about the support he has received from his parents. I know they have been a calming and powerful influence for him as he has gone through this as well. We are both blessed by good parents who know what it means to truly parent. They know that parenting adult children means that there are some things that you DO retire from; they know it's not their business how we raise our kids, where we live, how we manage our money, or what jobs we choose to take. But for all the other aspects of parenting - the loving, supporting, listening, and "showing up," they know that is something they will never retire from! I really don't know how we could have managed the last 5 months without their support, and I felt I would be ungrateful if I didn't publicly acknowledge all they've done for our family.
Believe me though, I REALLY hope that the next year brings a much more relaxing retirement to my mom. Not only does she deserve it, but hopefully, that will mean that things have calmed down a little bit for all of us!
"Normal"
Five weeks ago today Flint was born. These past five weeks have been the fastest, craziest, scariest, happiest, busiest, most anxious, most relieving, and most frustrating weeks of my life! I can only imagine how Flint would summarize those same five weeks, if he had words to articulate his experience! I am SO grateful that things are progressing well and that we are ALMOST out of the NICU and into our home.
Flint has four issues that have made his start here on earth a challenge: he's a preemie, he was growth restricted, he has Hydrocephalus, and he has Dandy-Walker. Any one of those issues bring challenges, but put them all together and it is a little daunting. Thankfully, the fact that he's a preemie and was growth-restricted in the womb will not have any long-term effects on Flint's progress. The effects of the Hydrocephaly and Dandy-Walker will play a larger role as he continues to develop, but at this point, we really have no idea how severe their impact will be. Granted, it is very minor compared to the challenges that some people live with throughout their life, but it is still hard on Flint and scary for his parents as we try to figure out what it all means for everyday living. At this point, nothing has come easy for Flint, and I'm not sure that anything ever will. Only time will be able to answer that question.
Flint is doing well, and I'm learning to be patient with the process and most importantly, to adjust to a new "normal." Nothing about this experience has been what is normal for me and the births of my first four children, and I'm learning that that's OK. I'm adjusting my expectations and trying to not be afraid of the things that I don't know with regards to Flint. Most days, it is easy to not be afraid and just love my sweet little boy. There are other days though, that require every amount of mental and spiritual exertion on my part so I don't fall into despair and fear. It's a blessing that those scary days only happen once in awhile, but I'm learning that they will probably be a fairly constant part of life now that Flint is here. I think that one of Flint's most important jobs here is to help me remain in a constant state of prayer. So far, he is fulfilling that mission spectacularly!
One of those scary times happened a couple of days ago. Before Flint got his shunt, his progress was very slow. Things really halted for awhile because the pressure on his brain was affecting so many other things. Many of the normal reflexes that babies are born being able to do, Flint couldn't do because it was just too early. The main one of these was sucking. Before his surgery, his feeds were primarily all done through a tube but right before we left for Dallas, he started getting the hang of eating from a bottle. He would still get very worn out from the exertion it took, but he was still progressing. Once he recovered from the shunt surgery, he really put things together and started finishing almost every bottle with ease. I was so excited because it seemed that soon I'd be able to start breast-feeding, which was really the last little bump we needed to get through at this point in time. We got back to Amarillo on Monday night, and on Tuesday they had me breastfeed him for the first time. He figured it out like a champ! He didn't do it all that long, but he had no problem latching on and still ate for a good 10 minutes. Considering that it is a lot harder to nurse than it is to drink from a bottle, I was so excited that he had the energy to go that long. The nurse practitioner on duty said he was about ready to go home and that we should plan on "rooming in" with him Wednesday night and then he could go home Thursday. We were so excited that they felt like he was good to go, but I was also a little anxious and worried. I hadn't seen him be consistent with his feedings yet, and I was just worried about how he and I would do once we were home with no one around to help if things got bad. I didn't sleep well Tuesday night, while I worried about how things would go once he was home.
Wednesday morning, I got a phone call from the NICU. Flint had a bad night and had not eaten well. They had finally decided to put the tube back in so they could feed him. When a baby only weighs 5 1/2 pounds, you can't just let them not eat! I showed up to try to nurse him again, hoping it was just that he decided he LOVED nursing and didn't want the bottle, but he would have nothing to do with me or the bottle. He wouldn't even suck on a pacifier! He acted like he had no idea what to do with something when it got in his mouth. He just cried and cried, and there was very little I could do to help him. The doctors and nurses couldn't figure out what to do but they all assured me that he'd get through it and figure things out.
This was a huge low point for me. The fact that he had been doing so well in this regard, and then suddenly slipped backwards so much, made me wonder if this was Flint's normal. I didn't know why he was doing it and wondered if this was a normal preemie thing, or if this regression had something to do with Dandy-Walker. I became quite fearful as the realization hit me that Flint may struggle with EVERYTHING he ever does, and there could be a whole lifetime of him taking 2 steps forward and 1 step back. I realized I had kind of been living in a state of denial since he was born, with regards to the issues that Flint will have to deal with for the rest of his life. The neurosurgeon in Dallas gave us a lot of hope when we met with him back in August, but I also don't know how realistic he was being. He explained that Dandy Walker kids can be very functional, and even told us that he's got one kid who was the class valedictorian and another who plays college sports. That's wonderful, but this is also the same doctor who told us Flint would be recovered from his surgery and home one day later! He's also the same guy who told us that he puts one shunt in that lasts them their lifetime and you hardly ever need to do any revisions or mess with the shunt again. Well, the more research we've done and the more doctors we've talked to, the more we know that it is HIGHLY unusual to NOT need more surgeries on shunts as time goes on. They are highly susceptible to breaking, infection, getting knotted, or just not working right, and people with Hydrocephalus almost ALWAYS have multiple surgeries. The more I've interacted with Dr. Weprin, the more I've learned he is the eternal optimist. This is good for many reasons, but I have come to the place where I also need to know REALITIES. In my mind, what Dr. Weprin told us as "best case scenario" became the norm, and I put all my eggs into the "Flint's going to be just fine and not have any problems" basket. The problem with this, is that when anything doesn't go right or according to my experience with "normal," it is horribly discouraging and causes me great worry for his future. This was definitely the case for me when I left the hospital that afternoon.
I called home in tears, and had a good talk and cry with my dad. I shared all these fears and worries with him and asked "Is this ever going to feel normal? I'm so tired of being worried and anxious about him. Will there ever be a time when I don't have to worry about Flint and his progress?" My dad cried with me as he said, "Unfortunately Jessica, it probably won't be easy for a really long time. I'm so sorry it is this way, but it is very likely that Flint is going to have to fight really hard with everything he has to do."
While this all has been hard for me to process, I am also grateful that I am at this point now. I definitely still have high hopes for Flint, but I am also coming to terms with the hard stuff that MIGHT be a part of his life. I am accepting more and more each day the fact that Flint has a birth defect that may very well limit him in life. I am researching more some of the specifics that he may struggle with, something I haven't wanted to do before because of how much it scared me. I guess what I'm saying, is that I am becoming more comfortable with who FLINT is. I am realizing that his "normal" path very well may be different than I wanted it to be. It may be different than mine, or my other kids', or any other person I've ever met in this life. However, it is exactly the path that it is supposed to be, and Flint is going to be the best one to show me what that path is. I have also noticed a change in what I pray for. Instead of just asking for blessings for Flint, I am now asking for help for ME. I need blessings like more courage, more faith, more hope, more wisdom, and more strength to handle whatever challenges this little boy brings to me. Gratefully, those prayers are definitely being answered!
Coming to terms with Flint's disability doesn't change the fact that I am still very hopeful about his future. He has defied the odds so many times in the past 5 weeks and I am still confident that he can continue to do so. I'm just in a better place now to accept things if he doesn't.
The good news is that Flint eventually sorted things out and after the one bad day on Tuesday, he has done great again. The occupational therapist came to work with him and see what the problem was, and she really feels like he was just worn out from breast feeding and the other things he's been through. She reminded me that he is still recovering from a major surgery and is going through a lot of changes as he prepares to go home. The last two days he's really been able to stabilize again, and has taken his bottles great when I'm not there and has nursed well when I am. I decided that until he is ready to come home, we are now at the point where I need to be with him as often as I can so he has lots of opportunities to master nursing. My good friend Julie is watching the kids all day for the next few school days so I can just camp out here at the hospital and nurse him when he needs it. This is a good thing, because today he started to slip backwards again. This time, everyone was more prepared for it, so when he started fighting me during his feeding, I immediately called the nurse practitioner in to help. I didn't want him to get so frustrated and worn out that he regressed as badly as he did the last time. She was wonderful and sat with me to help calm him down and help him get better organized. She pinpointed a few things to do to help him, and Flint was able to finish the feeding from his bottle. I asked her if this was a preemie thing or if it was more of a Dandy-Walker or shunt thing. She assured me it was a very normal preemie thing and it's just part of him sorting things out. I feel very confident that he will get it all figured out soon and can come home. I'm not make any promises, but I'm pretty hopeful that we'll all be under the same roof sometime in the next week! When that happens, I promise you all will be the first ones to know!
I called home in tears, and had a good talk and cry with my dad. I shared all these fears and worries with him and asked "Is this ever going to feel normal? I'm so tired of being worried and anxious about him. Will there ever be a time when I don't have to worry about Flint and his progress?" My dad cried with me as he said, "Unfortunately Jessica, it probably won't be easy for a really long time. I'm so sorry it is this way, but it is very likely that Flint is going to have to fight really hard with everything he has to do."
While this all has been hard for me to process, I am also grateful that I am at this point now. I definitely still have high hopes for Flint, but I am also coming to terms with the hard stuff that MIGHT be a part of his life. I am accepting more and more each day the fact that Flint has a birth defect that may very well limit him in life. I am researching more some of the specifics that he may struggle with, something I haven't wanted to do before because of how much it scared me. I guess what I'm saying, is that I am becoming more comfortable with who FLINT is. I am realizing that his "normal" path very well may be different than I wanted it to be. It may be different than mine, or my other kids', or any other person I've ever met in this life. However, it is exactly the path that it is supposed to be, and Flint is going to be the best one to show me what that path is. I have also noticed a change in what I pray for. Instead of just asking for blessings for Flint, I am now asking for help for ME. I need blessings like more courage, more faith, more hope, more wisdom, and more strength to handle whatever challenges this little boy brings to me. Gratefully, those prayers are definitely being answered!
Coming to terms with Flint's disability doesn't change the fact that I am still very hopeful about his future. He has defied the odds so many times in the past 5 weeks and I am still confident that he can continue to do so. I'm just in a better place now to accept things if he doesn't.
The good news is that Flint eventually sorted things out and after the one bad day on Tuesday, he has done great again. The occupational therapist came to work with him and see what the problem was, and she really feels like he was just worn out from breast feeding and the other things he's been through. She reminded me that he is still recovering from a major surgery and is going through a lot of changes as he prepares to go home. The last two days he's really been able to stabilize again, and has taken his bottles great when I'm not there and has nursed well when I am. I decided that until he is ready to come home, we are now at the point where I need to be with him as often as I can so he has lots of opportunities to master nursing. My good friend Julie is watching the kids all day for the next few school days so I can just camp out here at the hospital and nurse him when he needs it. This is a good thing, because today he started to slip backwards again. This time, everyone was more prepared for it, so when he started fighting me during his feeding, I immediately called the nurse practitioner in to help. I didn't want him to get so frustrated and worn out that he regressed as badly as he did the last time. She was wonderful and sat with me to help calm him down and help him get better organized. She pinpointed a few things to do to help him, and Flint was able to finish the feeding from his bottle. I asked her if this was a preemie thing or if it was more of a Dandy-Walker or shunt thing. She assured me it was a very normal preemie thing and it's just part of him sorting things out. I feel very confident that he will get it all figured out soon and can come home. I'm not make any promises, but I'm pretty hopeful that we'll all be under the same roof sometime in the next week! When that happens, I promise you all will be the first ones to know!
Wednesday, October 2, 2013
Leaving Dallas
We are back in Amarillo and I have needed to update this
since Flint's surgery. I haven't gotten
around to it yet though, because things have alternated from "We're way
too busy and have no time to update" to "We finally have a chance to
breathe and relax and we don't want to spend that time doing anything other
than enjoying our kids." I feel
compelled to write here though, because I feel like Flint has a story to tell
and I'm the only one who can write it down.
So even though it's been a few days, here's how things ended in Dallas:
Flint came through surgery SO well and recovered quickly. His head size went down a centimeter the first night and continued to decrease for the first few days. It has since gone back up a little, but the doctors all assure us that it's pretty normal to have fluctuations while his head adjusts to the shunt. Brock and I spent the week in Dallas relaxing and holding our sweet little man and did all we could to provide some comfort while he recovered. I have been SO excited with how the shunt looks. You can definitely tell it's there, but it is nowhere NEAR as obvious as I thought it was going to be. With a little more fat and hair on his head, you won't even notice it's there! At this point with the shunt, we just have to watch for signs of infection. If an infection occurs, it is most likely to happen during the first 6 months after it was placed. So between him being a preemie and more susceptible to sickness anyway, and having the shunt, we are praying that we can get through the upcoming winter without any problems.
We were so happy that his recovery went so well and especially that it was fast, because we HAD to be back home by Saturday. My daughter’s birthday was Saturday and my parents needed to be able to get back home too. You can imagine our relief then, when on Friday morning, the doctors felt that Flint was recovered well enough to return to Amarillo. They assured us that transport would be scheduled for us as soon as they cleared everything with Flint’s doctors in the NICU here at home. Brock and I left the hospital Friday afternoon, waiting to hear when exactly we were leaving Dallas, and went to the Ronald McDonald house (where we stayed) to clean up and check out. We got everything squared away there, and then returned to the hospital so I could catch a ride home with Flint. Brock was going to leave to drive home as soon as he said goodbye to Flint. As we entered the NICU again and proceeded to scrub in, the Neonatologist in Dallas came up to us and told us that the Amarillo NICU didn’t have room for Flint until at least Monday so we were stuck in Dallas until then. I immediately started to cry (not unusual for me these days) because I just knew we had to get home, and now we were stuck. I no longer had a place to stay and Davis was going to be heartbroken that I wasn’t home for her big day. We walked into Flint’s room and started to explain what was going on to the nurse. I bawled and bawled while I told her that Brock would drive home to be with our daughter, but that I was now stuck there for the weekend. Our nurse finally just said “I know it’s a long drive, but why don’t you leave Flint here and both of you drive home for the birthday. Then you can catch a flight back here on Sunday and stay here until Flint is ready to go home.” It was a hard decision, but we quickly felt like that was the right thing to do. Having four older kids and one baby in the NICU means I am constantly trying to decide which kid needs me more at which point in time. It’s a huge balancing act and it’s hard to make ANY decision without feeling guilty. I am grateful for the Spirit to help me know WHO I need to be with and WHEN, but it is still hard to have to divide my time and attention in this manner.
Anyway, we felt like we needed to take our nurse’s advice. We kissed Flint goodbye, knowing he was well taken care of and wouldn’t even notice we were gone. Then we hopped in the van and drove home, arriving with just enough time to assemble Davis’s birthday treat and wrap presents before going to bed for a small rest. We spent the next day celebrating her birthday and going to football and soccer games for Duke and Gage. I was so glad to be home for everything, but by the end of the day I was exhausted! My original plan was to ride back to Dallas Sunday morning with my sister’s family, who was on their way home after a vacation in Utah. After a long and exhausting day though, I decided to just fly when I found a cheap ticket on Southwest. So less than 48 hours after leaving Dallas, I arrived back at the hospital to find Flint resting and doing well. I spent that night there in the hospital with him and then we FINALLY got to fly back to Amarillo Monday afternoon.
Overall, it was a humbling experience to be in Dallas. The people that work at the Children’s Medical center are amazing! They are so skilled at what they do, but they are even better at the personal way they treat you. That hospital is a place where kids with REALLY big problems go and all the employees treat you with tenderness and kindness. I am so grateful for that hospital, but I hope I NEVER have to go back again!
We are glad to be home, even though Flint is still in the NICU. He’s doing well, but still has some issues to work through before he can come home. Tomorrow I’ll try to write more about how he is doing at this point but right now I am too tired to keep writing. More updates to come! Please continue to pray for us! Flint’s struggles are not over just because his surgery is. In fact, in many ways, I feel like the hard part is just beginning. Only time will tell!
The Ronald McDonald House, where we stayed. What an amazing facility and organization!
The NICU was located on the 7th floor, also known as the "Longhorn Floor." Coincidence that such excellence and care was offered on the floor associated with Longhorns? I think not!
Some of the sweet nurses who took care of Flint (and his mom and dad!).
Flint came through surgery SO well and recovered quickly. His head size went down a centimeter the first night and continued to decrease for the first few days. It has since gone back up a little, but the doctors all assure us that it's pretty normal to have fluctuations while his head adjusts to the shunt. Brock and I spent the week in Dallas relaxing and holding our sweet little man and did all we could to provide some comfort while he recovered. I have been SO excited with how the shunt looks. You can definitely tell it's there, but it is nowhere NEAR as obvious as I thought it was going to be. With a little more fat and hair on his head, you won't even notice it's there! At this point with the shunt, we just have to watch for signs of infection. If an infection occurs, it is most likely to happen during the first 6 months after it was placed. So between him being a preemie and more susceptible to sickness anyway, and having the shunt, we are praying that we can get through the upcoming winter without any problems.
We were so happy that his recovery went so well and especially that it was fast, because we HAD to be back home by Saturday. My daughter’s birthday was Saturday and my parents needed to be able to get back home too. You can imagine our relief then, when on Friday morning, the doctors felt that Flint was recovered well enough to return to Amarillo. They assured us that transport would be scheduled for us as soon as they cleared everything with Flint’s doctors in the NICU here at home. Brock and I left the hospital Friday afternoon, waiting to hear when exactly we were leaving Dallas, and went to the Ronald McDonald house (where we stayed) to clean up and check out. We got everything squared away there, and then returned to the hospital so I could catch a ride home with Flint. Brock was going to leave to drive home as soon as he said goodbye to Flint. As we entered the NICU again and proceeded to scrub in, the Neonatologist in Dallas came up to us and told us that the Amarillo NICU didn’t have room for Flint until at least Monday so we were stuck in Dallas until then. I immediately started to cry (not unusual for me these days) because I just knew we had to get home, and now we were stuck. I no longer had a place to stay and Davis was going to be heartbroken that I wasn’t home for her big day. We walked into Flint’s room and started to explain what was going on to the nurse. I bawled and bawled while I told her that Brock would drive home to be with our daughter, but that I was now stuck there for the weekend. Our nurse finally just said “I know it’s a long drive, but why don’t you leave Flint here and both of you drive home for the birthday. Then you can catch a flight back here on Sunday and stay here until Flint is ready to go home.” It was a hard decision, but we quickly felt like that was the right thing to do. Having four older kids and one baby in the NICU means I am constantly trying to decide which kid needs me more at which point in time. It’s a huge balancing act and it’s hard to make ANY decision without feeling guilty. I am grateful for the Spirit to help me know WHO I need to be with and WHEN, but it is still hard to have to divide my time and attention in this manner.
Anyway, we felt like we needed to take our nurse’s advice. We kissed Flint goodbye, knowing he was well taken care of and wouldn’t even notice we were gone. Then we hopped in the van and drove home, arriving with just enough time to assemble Davis’s birthday treat and wrap presents before going to bed for a small rest. We spent the next day celebrating her birthday and going to football and soccer games for Duke and Gage. I was so glad to be home for everything, but by the end of the day I was exhausted! My original plan was to ride back to Dallas Sunday morning with my sister’s family, who was on their way home after a vacation in Utah. After a long and exhausting day though, I decided to just fly when I found a cheap ticket on Southwest. So less than 48 hours after leaving Dallas, I arrived back at the hospital to find Flint resting and doing well. I spent that night there in the hospital with him and then we FINALLY got to fly back to Amarillo Monday afternoon.
Overall, it was a humbling experience to be in Dallas. The people that work at the Children’s Medical center are amazing! They are so skilled at what they do, but they are even better at the personal way they treat you. That hospital is a place where kids with REALLY big problems go and all the employees treat you with tenderness and kindness. I am so grateful for that hospital, but I hope I NEVER have to go back again!
We are glad to be home, even though Flint is still in the NICU. He’s doing well, but still has some issues to work through before he can come home. Tomorrow I’ll try to write more about how he is doing at this point but right now I am too tired to keep writing. More updates to come! Please continue to pray for us! Flint’s struggles are not over just because his surgery is. In fact, in many ways, I feel like the hard part is just beginning. Only time will tell!
Immediately after his surgery
Aunt Katie got to come visit!
Sweet angel boy, ready to go home!
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