It's official. They are letting us take Emilia home. She gets discharged from the hospital tomorrow morning. She is coming home with a near clean bill of health. The only extra issue we have is a feeding tube she will have to keep in for a week or two. Emilia takes a bottle, but eating requires a lot of extra effort on her part and she wears out fast. What she will not eat from a bottle goes into a feeding tube that runs from her nose into her stomach. It is not ideal, but it could be worse. After nearly two weeks of being in the hospital, I am anxious to get her home and to get back to life!
We feel incredibly blessed, not despite this event but because of it. We have so much to be thankful for that we have recognized because this happened. First of all, we are grateful that we live in a time where a condition that was a death sentence a few years ago is a relatively easy condition to repair. There are children in this hospital who will never live a normal life because of their health problems. We are thankful that Emilia will have no lasting effects from this. We have a lot of friends and family that love us. I always knew this, but I did not realize truly how many friends we had until they all rallied together to help us through this time. Holy cow, you all did so much! And you all did it so willingly. It eased the burden. We are thankful for the volume of people who jumped at the chance to love and care for our other children. We had more offers here than we have kids! We are thankful for the health we and our other children have taken for granted until now. More than anything we are thankful that in a few hours we get to take home our baby, and that we have the chance to love her and watch her grow and live her life. I want to thank every person individually who helped us through this, but there are too many of you. Please know, it meant the world to us. We love you all!
Thursday, August 18, 2011
Monday, August 15, 2011
Recovery Room
We have now been in a recovery room since Saturday the 13th. Apparently Emilia was up a lot that night crying her heart out, just like a newborn likes to do. I take it as a sign that she is returning to her normal self. Mostly she has been happy and peaceful, unless the nurses are getting her vitals or she has a wet diaper. Emily is her daytime nurse, and she says it is the nurses fault she doesn't like having a wet diaper because they change them so frequently. She has gotten used to them being dry. As a peace offering Emily is sending all the size one diapers home with us!
Tomorrow the doctors will do a swallow study to determine if Emilia still has the ability to eat normally. If all goes well with that, and if her echo looks good, we will be able to go home Wednesday or Thursday. Yay!
Yesterday Eileen and Nathan visited (Shelby's Grandma and her boyfriend). They have offered to let me use a spare care of theirs while I am here. After walking here from the Ronald McDonald house this morning, I am looking forward to having a car to get around. They will bring it by later today. My cousin Jade also came to visit and was nice enough to drive me to her house for dinner last night, and then drive me back to the hospital. It was good to be around her and her family. She has two little girls, a three-year-old and a 10 month old, and both are adorable. I love being around kids when I cannot be with mine. I am once again blown away by the kindness of others during this whole ordeal.
Tomorrow the doctors will do a swallow study to determine if Emilia still has the ability to eat normally. If all goes well with that, and if her echo looks good, we will be able to go home Wednesday or Thursday. Yay!
Yesterday Eileen and Nathan visited (Shelby's Grandma and her boyfriend). They have offered to let me use a spare care of theirs while I am here. After walking here from the Ronald McDonald house this morning, I am looking forward to having a car to get around. They will bring it by later today. My cousin Jade also came to visit and was nice enough to drive me to her house for dinner last night, and then drive me back to the hospital. It was good to be around her and her family. She has two little girls, a three-year-old and a 10 month old, and both are adorable. I love being around kids when I cannot be with mine. I am once again blown away by the kindness of others during this whole ordeal.
Friday, August 12, 2011
More Progress
Yesterday Emilia was awake a lot, and even seemed pretty happy. They were going to take out her breathing tube yesterday morning but the X-ray showed she still had a lot of fluid in her lungs. Finally last night her surgeon said "just take it out!" They did, and she has done great breathing on her own. Apparently the reason the X-ray looked so wet was because she was laying on a gel pillow. The moisture was showing up in the X-ray!
Pam has been Emilia's nurse the past two days, and she is a lot of fun. She laughs a lot, and seems to really like our little girl. She says we can hold her later on today after she gets one of her chest tubes out. This is the moment I have been waiting for! We have not been able to hold our little girl since early Sunday morning and it is killing us!
Nawlene is home with Carson now. We got to Skype with him last night. He seemed thrilled. It only made me miss him more. We sang him "Wheels on the Bus" which is his favorite song. Nawlene will stay with him until Shelby comes home on Sunday. The girls are with my parents heading to Fort Bragg. My mom said Lilly told her last night "I was missing my mom, and my sister was missing my mom, so we just hugged each other." Hearing this was both heart-warming and heart-breaking. We miss our kids, and I am still a good week or more from seeing them. Lucky Shelby will see Carson on Sunday and the girls when they come back on Tuesday.
Pam has been Emilia's nurse the past two days, and she is a lot of fun. She laughs a lot, and seems to really like our little girl. She says we can hold her later on today after she gets one of her chest tubes out. This is the moment I have been waiting for! We have not been able to hold our little girl since early Sunday morning and it is killing us!
Nawlene is home with Carson now. We got to Skype with him last night. He seemed thrilled. It only made me miss him more. We sang him "Wheels on the Bus" which is his favorite song. Nawlene will stay with him until Shelby comes home on Sunday. The girls are with my parents heading to Fort Bragg. My mom said Lilly told her last night "I was missing my mom, and my sister was missing my mom, so we just hugged each other." Hearing this was both heart-warming and heart-breaking. We miss our kids, and I am still a good week or more from seeing them. Lucky Shelby will see Carson on Sunday and the girls when they come back on Tuesday.
Wednesday, August 10, 2011
Emilia Update
Our little girl did great through the night. They tell us the first 12 hours are the most critical and once she has passed the 48 hour mark, she is pretty much out of the woods. Today they have taken out her catheter and one of her IVs. They think by tonight or tomorrow they can remove the breathing tube. Earlier today the nurse put a tube down her nose that goes right into her intestines, and they have begun feeding her that way a little bit at a time. These are all great improvements. She is also being given a solution of glucose and electrolytes, as well as some fats through her remaining IV. The fluid looks just like Mountain Dew. We joke that Emilia is already following in Shelby's footsteps!
Emilia is much more aware today, which is bittersweet. It is great that she is waking up, but she looks so uncomfortable. She cannot cry because of the breathing tube, but she can make all the same facial expressions she would if she were crying, it just comes out silently. This is heartbreaking for us, but again it all means she is healing.
I have felt surprisingly calm through this whole ordeal with our baby. Shelby and I were discussing why this is, and I think there are a multitude of reasons. For one, we have really felt everyone's prayers, and been comforted by them. I also think it is my personal blessing from Heavenly Father. The biggest reason is this. I felt inspired to have this baby, and I know she is an integral part of our family. She must come out of this OK because for whatever reason we need her.
Emilia is much more aware today, which is bittersweet. It is great that she is waking up, but she looks so uncomfortable. She cannot cry because of the breathing tube, but she can make all the same facial expressions she would if she were crying, it just comes out silently. This is heartbreaking for us, but again it all means she is healing.
I have felt surprisingly calm through this whole ordeal with our baby. Shelby and I were discussing why this is, and I think there are a multitude of reasons. For one, we have really felt everyone's prayers, and been comforted by them. I also think it is my personal blessing from Heavenly Father. The biggest reason is this. I felt inspired to have this baby, and I know she is an integral part of our family. She must come out of this OK because for whatever reason we need her.
Tuesday, August 9, 2011
Emilia's (and our) Big Adventure
Starting Friday, August 5th Emilia slowly started to lose her appetite. By Saturday morning we were starting to get a little concerned. After talking to the after-hour nurses at Treasure Valley Pediatrics, we decided to just watch her for the afternoon. Around 5pm she was still not interested in eating, and she had not had a wet diaper since earlier that morning. We took her to urgent care to be on the safe side. The doctor at urgent care sent us to St. Luke's in Meridian just to be on the safe side. The fact that she had not peed was cause for concern that she may be dehydrated.
Once we were at St. Luke's, the nurses tried to draw blood and put in an IV so she could get fluids. Apparently it is hard enough to find a vein in an 11-day old baby, but poor Emilia was so dehydrated, finding a vein proved to be almost impossible. After poking and prodding, the nurses finally called two transport nurse practitioners who specialize in babies. These ladies were amazing, and I felt instantly reassured with my baby in their hands. They were able to place the IV, and they decided to keep us overnight to monitor Emilia. At this point Shelby and I assumed she had a tummy ache, and they would hydrate her and send her home in the morning. Shelby stayed home with the girls and Carson and I stayed at the hospital with Emilia. Around 2am I got up to try and feed her, but she still wasn't interested. The nurse that was taking care of her noticed at this point that her breathing was labored and called the respiratory nurse. He was stumped and called the on-call pediatrician, Dr. Koplan. She immediately made the decision to send Emilia to St. Luke's in Boise to see a specialist. It was not until this point that I got nervous that something was really wrong with our baby. The same nurse practitioners that took care of Emilia in the ER transported her to Boise. In Boise they determined fairly quickly that it was her heart. This was around 5am. I finally called Shelby, which I wish I had done sooner. Watching Emilia being stuck and poked and intibated was not fun to deal with alone. Shelby called his dad who more than willingly came down to stay with the other kids. A couple of hours later they determined that Emilia most likely had a coarctation of the aorta, which is a fancy way of saying her aorta is too narrow, and her heart was having to work too hard to get blood to the rest of her body. This is why she did not want to eat. It took too much effort for her body to digest the food. While the condition is fairly common, it is not a surgery they perform in Boise, so they flew Emilia and me to SLC while Shelby drove down. And guess who transported her to SLC? The same nurse practitioners. It suddenly occurred to me that they had been on shift for close to 20 hours at this point. I asked them if they work the longest shifts ever and they told me they had grown attached to Emilia and had requested to take her. This gesture was incredibly touching to me, and only one of many very kind things people have done for us during this crisis.
Once we were in Salt Lake, we were told we would meet a lot of people, and they were not lying! The doctors and nurses have been fantastic. Michael is the nurse who has been by our side the most. He has a light hearted nature, and seems very capable.
I told Melissa Millward what was going on and word spread like wildfire. Our ward has been amazing. They have taken over our garden, chickens and home more than willingly, all the while praying for us and Emilia and even putting her name on the prayer roll at the temple. Everyone truly loves us and is concerned for us.
My dad came down to our house the morning we left to get the kids. We only had an hour to get them and us ready for this trip, knowing we would be gone at least 10 days. My dad bathed and dressed the kids for us and took them to church for the day. It turns out we have more people willing to watch our kids than we have kids! We were going to send one to Sarah, one to Summer, and one to Chris and Felicia. Summer more than willingly took Carson, and then Sarah insisted on taking both Rachel and Lilly.
Nawlene and Cody drove down from IF to SLC just to be with us during this ordeal, and have taken great care of us. Cody got us a hotel room at the Marriott for our first night here when we had no place to stay. They would both be with us at the hospital every second if we needed them to.
Sara Fry about had a heart attack when she got my message telling her what had happened and that we were going to be in SLC for a while. She went out and bought us a huge amount of fruit and other fresh food, along with snacks for Shelby. Not to mention volunteered us a place to stay while we are here for as long as we need. My cousin Jade also offered us her home. In fact she went way out of her way to contact us and let us know she would help in any way she could. I even have a friend from high school that upon hearing about our ordeal offered us his relative's homes.
On August 9th, at 1pm Emilia went in for surgery. We are anxiously awaiting the results, but have every reason to believe she will come out of it without complications. We love this little girl and want nothing more than to take her home with us very soon. They anticipate a 2 week recovery and then she will be just like new.
Once we were at St. Luke's, the nurses tried to draw blood and put in an IV so she could get fluids. Apparently it is hard enough to find a vein in an 11-day old baby, but poor Emilia was so dehydrated, finding a vein proved to be almost impossible. After poking and prodding, the nurses finally called two transport nurse practitioners who specialize in babies. These ladies were amazing, and I felt instantly reassured with my baby in their hands. They were able to place the IV, and they decided to keep us overnight to monitor Emilia. At this point Shelby and I assumed she had a tummy ache, and they would hydrate her and send her home in the morning. Shelby stayed home with the girls and Carson and I stayed at the hospital with Emilia. Around 2am I got up to try and feed her, but she still wasn't interested. The nurse that was taking care of her noticed at this point that her breathing was labored and called the respiratory nurse. He was stumped and called the on-call pediatrician, Dr. Koplan. She immediately made the decision to send Emilia to St. Luke's in Boise to see a specialist. It was not until this point that I got nervous that something was really wrong with our baby. The same nurse practitioners that took care of Emilia in the ER transported her to Boise. In Boise they determined fairly quickly that it was her heart. This was around 5am. I finally called Shelby, which I wish I had done sooner. Watching Emilia being stuck and poked and intibated was not fun to deal with alone. Shelby called his dad who more than willingly came down to stay with the other kids. A couple of hours later they determined that Emilia most likely had a coarctation of the aorta, which is a fancy way of saying her aorta is too narrow, and her heart was having to work too hard to get blood to the rest of her body. This is why she did not want to eat. It took too much effort for her body to digest the food. While the condition is fairly common, it is not a surgery they perform in Boise, so they flew Emilia and me to SLC while Shelby drove down. And guess who transported her to SLC? The same nurse practitioners. It suddenly occurred to me that they had been on shift for close to 20 hours at this point. I asked them if they work the longest shifts ever and they told me they had grown attached to Emilia and had requested to take her. This gesture was incredibly touching to me, and only one of many very kind things people have done for us during this crisis.
Once we were in Salt Lake, we were told we would meet a lot of people, and they were not lying! The doctors and nurses have been fantastic. Michael is the nurse who has been by our side the most. He has a light hearted nature, and seems very capable.
I told Melissa Millward what was going on and word spread like wildfire. Our ward has been amazing. They have taken over our garden, chickens and home more than willingly, all the while praying for us and Emilia and even putting her name on the prayer roll at the temple. Everyone truly loves us and is concerned for us.
My dad came down to our house the morning we left to get the kids. We only had an hour to get them and us ready for this trip, knowing we would be gone at least 10 days. My dad bathed and dressed the kids for us and took them to church for the day. It turns out we have more people willing to watch our kids than we have kids! We were going to send one to Sarah, one to Summer, and one to Chris and Felicia. Summer more than willingly took Carson, and then Sarah insisted on taking both Rachel and Lilly.
Nawlene and Cody drove down from IF to SLC just to be with us during this ordeal, and have taken great care of us. Cody got us a hotel room at the Marriott for our first night here when we had no place to stay. They would both be with us at the hospital every second if we needed them to.
Sara Fry about had a heart attack when she got my message telling her what had happened and that we were going to be in SLC for a while. She went out and bought us a huge amount of fruit and other fresh food, along with snacks for Shelby. Not to mention volunteered us a place to stay while we are here for as long as we need. My cousin Jade also offered us her home. In fact she went way out of her way to contact us and let us know she would help in any way she could. I even have a friend from high school that upon hearing about our ordeal offered us his relative's homes.
On August 9th, at 1pm Emilia went in for surgery. We are anxiously awaiting the results, but have every reason to believe she will come out of it without complications. We love this little girl and want nothing more than to take her home with us very soon. They anticipate a 2 week recovery and then she will be just like new.
Wednesday, August 3, 2011
The "Fella-gator"
I took Emilia to the doctor for her first checkup. Everything looks great. She has lost a few ounces but other than that she is perfect. She now weighs 6lbs, 11oz and is 19.75 inches long. This puts her in the 25th and 35th percentile respectively. I forgot to bring her PKU slip so I had to take her back later that afternoon for the PKU test. When we got there Lilly said "Are we going to ride on the fella-gator?" It took me a few seconds to realize she was asking about the elevator.
Carson asked me for a drink yesterday. I told him to go upstairs and get one himself, and he did. A few moments later I heard him rustling around upstairs only to have him return with a bottle of canola oil. He was so excited because he thought he had found juice. We tried to explain to him that it was not juice but he insisted. Finally Shelby let him take a drink. Shelby asked if he liked it and the stubborn little thing nodded and asked for more!
Rachel has been into the game "what would happen if..." It is driving me crazy! In the last two minutes she has asked me the following: "What would happen if... you never drank water, you never stopped drinking water, you held onto the end of that fan and spin round and round, a bird was on the end of that fan and spins round and round, you didn't eat for one day, you didn't eat for 10 days, and you didn't eat for 100 days?" One of the problems is I am not always sure what the right answer is.
Just to once again showcase Lilly's tender heart, she has been very concerned over my treatment of Emilia. Emilia does not like her diaper changed, and cries when I do it. Lilly keeps telling me to stop it. If I don't, she plugs her ears because she can't stand to hear her little sister cry.
Carson asked me for a drink yesterday. I told him to go upstairs and get one himself, and he did. A few moments later I heard him rustling around upstairs only to have him return with a bottle of canola oil. He was so excited because he thought he had found juice. We tried to explain to him that it was not juice but he insisted. Finally Shelby let him take a drink. Shelby asked if he liked it and the stubborn little thing nodded and asked for more!
Rachel has been into the game "what would happen if..." It is driving me crazy! In the last two minutes she has asked me the following: "What would happen if... you never drank water, you never stopped drinking water, you held onto the end of that fan and spin round and round, a bird was on the end of that fan and spins round and round, you didn't eat for one day, you didn't eat for 10 days, and you didn't eat for 100 days?" One of the problems is I am not always sure what the right answer is.
Just to once again showcase Lilly's tender heart, she has been very concerned over my treatment of Emilia. Emilia does not like her diaper changed, and cries when I do it. Lilly keeps telling me to stop it. If I don't, she plugs her ears because she can't stand to hear her little sister cry.
Subscribe to:
Posts (Atom)
