Friday, December 30, 2011

Hypoxic-Ischemic Encephalopathy: Lilly's 6 month video


Lilly was born without a heartbeat, they did 17 min of CPR. As a result she has been diagnosed with Hypoxic-ischemic encephalopathy (HIE), Cerebral Palsy, GERD, Cortical Visual Impairment (CVI) and eats from a G tube.

A special thanks to Laura Story, Josh Groben, and Sarah MacLachlan for use of music

Tuesday, December 27, 2011

Loveless Christmas 2011

Here at the Loveless home, we had a good Christmas! I hope everyone else had a great Christmas too! I am so grateful for our Lord, Jesus Christ, and Our Father in Heaven!!!! I am so grateful for my church, "The Church of Jesus Christ of Latter-day Saints." I know it is true and it is my rock. I am grateful that our Father in Heaven put His only begotten son on this earth to be born for us, to live his perfect life, then to die for us. But it does not end there, He lived for us again, so we all may return to our Father in Heaven. I love my brother, Jesus Christ, and I am thankful for his sacrifice. I am proud to call myself a Mormon, I am grateful to Joseph Smith for restoring Christ's church!


To start off, on Dec 23rd, Rachael and her kids, Rocky and our family, met my dad and his wife, Tricia, at a pizza restaurant to exchange gifts and to hang out. It was a lot of fun, and I am thankful for that time I got to spend it with them!

On Christmas Eve, we went to my momma's house. Rocky made both the ham and turkey, and we brought it over. It was Sarah's and her kids (Kyle,11, Braden,9, and Katie,6), then Rachael and her kids (Caleb,10, Chase,8, and Ayslee,2), and Rocky, me, Kody,15, Lilly and Logan,5 months. We opened gifts. And may I say, I am very pleased with the gifts I got Rachael and Sarah! When we were teenagers, I bought Sarah a Barbie from the Dollar Store. The next day, Sarah embarrassed my mom and Paul with the Barbie meeting our new Bishop. So most years, I buy Sarah a Barbie from the Dollar Store. Well, the Dollar Store was out of the Barbies, so I got both of my sisters Barbie nail polish this year. Sarah LOVED the Barbie nail polish, but Rachael said it was not the same. Oh well, it was worth a try! They don't know, but the other idea was a recorder, and yes, we would have all played the recorder and have my mom yell at us! My mom hates it when us three girls get together! But we LOVE each other!

Anyway, after all the kids got their gifts from Nana, my mom, we ate dinner and talked. Then Sarah wanted to take a nap, so everyone else drove to my step dad, Paul's, grave. We lit a candle for him, to let him know that we all still love him very much and think about him. After we lit the candle, we sang "O Holy Night" for Paul, because it was his favorite Christmas song when he was alive. When we all packed back into the cars, I turned on the radio, and "Oh Holy Night" was playing on the radio. Weird!

We drove to Rachael's house, and we put in the "Nativity Movie." By the end of the movie, most of the kids were sleeping on the floor or couch. I made Rocky pick all Sarah's kids up off the floor and carry them out to the car, because they were all sleeping over at my mom's house and doing Christmas morning presents at my mom's. I dropped off my mom and a few kiddo's, but first drove past Paul's grave to make sure the candle was still going for him.




On Christmas morning, Santa came and dropped by a few presents and some stockings. He even dropped off Jeriah's (DJ) stocking, so we could bring it up to him.

Kody and Logan getting ready to open presents!

Lilly was not sure if she was ready to wake up

Rocky and me

This year has been really tough on us, because everything that has happened with Lilly's health and Jeriah being in a group home, Rocky going to school full time, and work full time, and I quitting my job, to be a full time mom to my kiddo's. I am so grateful for some people in my ward (church) that saw this, and helped us out. We were going to have a small Christmas, and we were fine with that. But anonymous friends from church helped us out for Christmas and it was a big Christmas for all of us. So thank you for all who helped out, even if we do not know who you are. But maybe you are reading this! THANK YOU!!! Also we had some friends that gave us some awesome gifts too! Like my friend, Virginia Burnett, that got the babies "You Can Read" movies and flash cards, and gifts for Rocky, Kody, Jeriah, and I. I have some really great friends! The Lord really watches out for us!


After we opened all our gifts, we went back to my mom's house, and she made us all French Toast. It was yummy! We all got ready, the kids all got dressed up really cute, and instead of us all going to our normal wards for church, we decided to all go a support my mom and go to church with her. We took up two benches at church on the sides. It was nice to go to Church as a big family! It was Rachael, her kids, Sarah's kids, Mom, and my family. The only two people we were missing was Jeriah and Sarah! It was really nice.

Then we drove over to Grandma and Grandpa Simons' house. Grandma and Grandpa Simons are Paul's parents. They treat us just like their own grandchildren. I love them so much! I am so grateful for them! I even LOVE to bug and tease Grandpa by tugging at his ears, cause he HATES it! LOL. Grandma just LOVES the twins, and loves to hold them. She was telling other kids, that was trying to hold Logan and Lilly, that this was her time with the babies, cause she does not get to see them all that much.

We did not get to visit too long with Grandma and Grandpa because we needed to see Jeriah. I wanted to make sure that he knows that he is loved on Christmas Day. My mom and my sister, Rachael, babysat the twins at Grandma and Grandpa Simons' house, so Rocky and I could visit him. I am very grateful for that. Jeriah got it approved by his therapist let his biological grandmother, Kitt, could come see him also for Christmas Day. So we picked up Kitt on our way.
Jeriah was sooo happy to see us! I think he was more excited to give us the gifts that he bought us than to receive any of his own gifts. DJ was so funny. He got Rocky and me earplugs for the middle of the night, so we would not have to listen to Lilly and Logan cry at night. Maybe one night when I make Rocky have baby night duty, I will use them. He also got Lilly and Logan a little stuffed bear, telling them that Jesus loves them. Then he got Grandma Kitt a poster of a whole bunch of dogs. We gave DJ his gifts, and part of his gifts were some gift certificates, I had to lecture DJ telling him that he had to spend the money on himself, and not get us anything with it. He tried to plead his case, but I would not listen. I did not want him to spend it on me, he needed it!

While we were up there, we played Ping Pong, played games and talked.
Jeriah and I

I got all my kids "Footie PJ's" for Christmas, Kody and DJ LOVED them! Look how cute he is in them!

To top off the day, when we got home, Rocky made me a bubble bath with some rubber duckies in the tub. He pulled up a chair, and put my laptop next to the tub for me to watch a movie. He put in a surprise movie in for me. He was being so sweet, trying to relax me, which was the best present of all. About 45 minutes into the movie, me sitting in the tub, he comes in and asking if I was relax. I told him, "Everything but the intense movie you put in for me." LOL. The movie "Black Hawk Down" is not a relaxing movie. He laughed cause he did not put two and two together at first. But it was the thought that counts! He paused the movie, and we watched it in bed together and fell asleep.
So that was the Loveless Christmas of 2011! I hope everyone has a GREAT NEW YEAR in 2012!!!


Video: Lilly loves her new toy!
video



Video: some good cute laughter that will make anyone smile from Logan
video


Video: a toy from Kids Who Count (Early Intervention) that Lilly likes

video

Thursday, December 22, 2011

Twas the night before Christmas (in the NICU)

Twas the night before Christmas

By: Unknown Author

Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
... In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;

A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

Friday, December 16, 2011

Hypoxic Ischemic Encephalopathy/ Cerebral Palsy

On December 14, 2011, Lilly and Logan turned 5 months old!

Lilly had a doctor's appointment today at Physical Medicine and In-patient Rehabilitation today. We went and saw Dr. Oki for the first time. The appointment was at 8:30 am, we left at 7:00 am thinking we would get there on time. But, of course, there was a car accident on I-15, so I sat in traffic, and walked into the clinic at Primary Children's Hospital at 9 am. They said they they only allotted me 60 mins, I could have my 30 minutes still, but they were very busy, and had another appointment at 9:30 am. So I took my 30 minutes. This was the initial appointment, and the whole time, Dr. Oki talked to me about Cerebral Palsy, giving me handouts, etc. I am glad that I already taught myself and researched things, and learned because of my Facebook HIE groups. I knew what she was talking about. She talked fast to get everything in, and gave me a lot of information. I learned some stuff, instead of it ALL going over my head!

Dr. Oki wants Lilly to start Physical Therapy for her neck. I told her that we have Early Intervention, but she wants her to have Physical Therapy outside of Early Intervention and keep with Early Intervention too. We are going to try that, and see if it will help Lilly's neck before they think about putting Botox into her neck to try to bring her neck to the left too.

Dr. Oki also talked about hip dysplagia and scoliosis, because Lilly has a very high chance of developing later. So we need to keep an eye out for it. Also, we talked about our miracle drug, Baclofen. Lilly has been doing so much better since she was put on Baclofen. She had neurological irritability and cried and cried and cried, and NEVER slept before it. But it has helped a lot. It helps because of Lilly's Spasticity (muscles contracted, causing her muscles to be stiff, or Lilly making awkward movements, etc).

I told Dr. Oki that Dr. Knochel told me that he thinks Lilly has Mild Cerebral Palsy. She said "Well, I would say Mild to Moderate." I asked her the kind she thinks she has, she told me "Mild to Moderate Global Spastic Cerebral Palsy." She said Global because it is effecting her whole body, not just in one area. So I am wondering if that is the same as Spastic Quadriplegia Cerebral Palsy. Cause on Google I keep trying to find it under Global, and can not find anything. But a lot of information under Spastic Quadriplegia CP. Quadriplegia meaning it effects all 4 limbs. But I think she said Global cause her core/ trunk is weak.

I really hate this waiting game, trying to figure out what she will be able to do and will not be able to do! This sucks! I HATE the waiting game!!!! I know that Spastic Quadriplegia CP is the hardest kind of CP to learn how to walk, but it CAN be done. Just depends, and we will not know until later.

I also have done some research on Hypoxic Ischemic Encephalopathy (HIE), which means going without oxygen before, during or after birth. I looked up having a knot in her cord. Did you know that there is a 1% chance of having a baby having true knot in their cord. My doctors kept talking about it, like they could not believe it was there. Learning there is a 1% chance, I realize why! The weird thing is, both Lilly and Logan had a true knot in there cords. The difference in Lilly's cord, was that hers got tight and cut off blood and oxygen. Logan's cord never got tight. So he is fine. Which is interesting cause with my back, there is a 1 in a million chance of me getting a hematoma on my spine without a prior surgery. Well, I was that 1! And Lilly and Logan are in that 1%. I guess we just like to bet the chances. So I am thinking that I should get lottery tickets, and try to win with my chances! We do need a lot better house for Lilly, one that she can get around in a wheelchair, etc. Basement apartment just is not going to do it for her later, and can't afford a great place for her. So I might just play my chances for Home Makeover. LOL. I am a disabled veteran, I have adopted kids, and I have a disabled child. People get it for only one of those things, I have ALL 3! Not to mention, my husband has a Traumatic Brain Injury (TBI) and was in a coma due to a car accident when he was 15.

I LOVE the facebook pages that I am apart of for support for HIE. But I would LOVE to meet people face to face that are going through the same thing. I am trying to start something up for people in Utah. So we can get together, have mom's night out, play groups, couple dates, just hang out, etc. for people going through the same thing. That is my goal at least. It might take a while to start up. First thing I need to do is find enough people in Utah that has HIE kiddo's.

I was talking to a friend that is a NICU nurse at Utah Valley Hospital about it, and she said 2 months ago, they got a cooling machine. HIE babies get cooled right after birth to try to prevent the amount of brain damage. Lilly was cooled at Primary Children's Hospital. It would have been nice to only go to Utah Valley Hospital in Orem, instead of SLC! But regardless, they got it 2 months ago. Anyways, a lady that works there is going to help me, by sending families my way in the future, so we can help these families, after they find out that they have an HIE baby. I hope we can help some of these families. Cause having an HIE baby is not a temporary thing, that in a few years they can overcome. This is something that will effect our babies for the rest of their lives! For example, a premature baby might be behind for awhile, but unless there is other things, in a few years, they can catch up. Lilly will struggle with her brain damage (HIE) and CP for the rest of her life! Mary, my OT also said she would let other parents know too. I hope we can start this up!

Anyways, enjoy some pictures!
Logan is a chill baby!

My cute twins!

Lilly's G tube

No, the G tube does not hurt her

I finally caught this on tape! It is so cute!
video

Wednesday, December 14, 2011

Prayers for Lilly

I am trying to document everything, before I lose things. My friend, Rachel Farner, was at the hospital taking pictures and documenting everything for me. After she saw what happened, she went home and started a facebook page called "Prayers for Lilly." 975 people have "like" this page. Many are people whom I have never met, all praying for our sweet little girl! I want Lilly to know how LOVED she was from DAY 1!

I am going to try to save some of the post here:



About
Lilly's Story
Description
Words cannot even describe Emily’s excitement upon hearing the news that she was pregnant. After 10 years of infertility and adopting 2 sons, Emily was finally going to carry a baby of her own. A few weeks later joy overcame her family once again when she learned she was having twins!!!

Although Emily knew there was a chance of her miscarrying the babies she couldn’t retain her excitement and shared her news with every stranger that walked by. Fast forward to 20 weeks and Emily and Rocky learned the gender of their new babies, a boy and a girl. To celebrate, Emily brought gender suckers to all her college classes so all her peers could share in her excitement as she announced her news; Logan and Lilly were on their way.

A seemingly perfect twin pregnancy lead to an induction on July 13th, 2011. Emily was 38 weeks and very ready to meet her babies. After over 24 hours of labor Emily was stuck at 8 cm dilated and was faced with the decision to have a c-section or wait it out a few more hours, risking an infection. Her and her husband took it to the lord and felt that a c-section was the best thing for her and her babies. Within minutes of this decision Lilly’s heart rate monitor read 48 and they rushed Emily and the babies into the operating room to perform an emergency c-section. As Emily’s mother and I stood by waiting for the arrival of these new babies seconds turned to minutes as they struggled to get Lilly out. After 6 minutes a limp little girl, gray and lifeless entered this world followed quickly by her brother. A sense of relief came over all of us as we heard Logan let out his first cry but panic continued and we watched to medical staff struggle to revive Lilly. After 17 long minutes they were finally able to get her heart beating again and eventually it was beating by itself. Throughout the morning you couldn’t walk by a doctor or nurse who wasn’t distraught in tears.

Lilly is alive but her outcome is unknown. Due to the length of time that it took to revive her it is possible there will be brain damage but we do not know to what extent. She was life flighted to Primary Children’s Hospital in Salt Lake City, Utah where she will undergo more treatment. They will keep her on ice for a few days and observe her for seizures that would indicate severe brain damage.

After Emily woke up from the anesthesia her husband and doctors slowly broke the news to her of her daughter’s condition. Before taking Lilly they brought her into Emily’s room and allowed her to meet her daughter and say goodbye. Tears streamed down the faces of family, friends, and doctors as we listened to her father give her what will likely be the first of many priesthood blessings.

All Emily has asked is that I inform others of her daughter’s condition and ask for them to pray for Lilly.


***For those of you who have inquired about giving a small donation to help Emily and her family stay closer to Lilly's hospital, an account has been setup at America First Credit Union under the name Emily Loveless.
Emily has made no request for financial assistance, this is all being setup by family and friends.



July 19, 2011:


I got more information about the MRI they did on Lilly last night. She has a substantial of damage to both hemispheres of her brain. The MRI shows the brain releasing chemicals consistent with an injury due to a lack of oxygen to her brain, as well. The thalamus(core) of Lilly's brain has evidence of injury, but the left frontal lobe sustained the greatest amount of damage. This is the part of the brain that involves more of the "executive" functions such as decision-making, reasoning, and IQ.


July 20, 2011:

I spoke with the neurologist today. We went over the pictures of the MRI. He showed me that although Lilly's injuries mi ght have an effect on her motor ability, but shouldn't have that much of an impact on cognition, reasoning, and IQ if any. Now, that doesn't mean that everything will be okay--we are still not out of the woods yet. She also had her catheter removed, a tube from her umbilicus taken out, and a PICC line put in. She is also being fed a small amount of Emily's breast milk. The doctors are also weaning her off of the ventilator. Today was a good day!


July 21, 2011:

Our little Lilly Bean is doing very well. She got her UAV tube removed last night and a PICC line put in. She is alert and is looking forward to having her breathing tube removed tomorrow. With so much support from friends and family, not to mention prayers and fasting, it is almost impossible not to improve. Her eye color is becoming apparent and is an exact match to her mother's. Lilly received her first bath last night (compliments of Emily), as well. She is still a little groggy from her seizure medication, but hasn't had a seizure or seizure activity in the past 3 days. Please keep sending prayers to our Heavenly Father, because her road to recovery is still going to be a big task for such a little lady!

July 22, 2011
Yesterday, we left with the news that Lilly was going to get taken off the ventilator the first thing this morning. Emily, Logan, and I were excited that this was taking place, but were also a little scared due to the fact that she, basically, flat-lined the last time this was attempted. The three of us woke up early this morning, so we could arrive at the hospital as soon as we could. When we got there, I went back to see her first and they were just finishing the procedure. Lilly Bean was wide-eye, alert, and wiggling around in her bed. I heard her hoarse cry for the first time. I will mark this day in my calendar as "one tube closer to home and a cry for joy".


July 23, 2011
Today, Lilly Mae had a pretty relaxing time. She got to hang out with her dad most of the day. During their visit together, he was able to hold her for the first time and also feed her, as well. Rocky had her in his arms for almost 4 hours today and is looking forward to getting to do that more often. Emily arrived late, because Rocky forced her to stay home and rest. When she was rested, she was able to be involved in "Kangaroo Care" which is skin-to-skin contact for over an hour. Our little Lilly Bean was able to practice sucking on her pacifier. This was also a day in which dad had to opportunity to change a few dirty diapers(the first of many), with some good and some looking like World War 3. Lilly enjoyed seeing her father struggle in this tricky task. She is ready to go to sleep now and be involved in her first holiday, "Pioneer Day", tomorrow. Today was a good day.

Daddy wrote:
I never knew that I could love someone as much as I love my Little Lilly. I have only had her in my life for less than a day, but I would give my very life to see that she lives.
· · · July 15 at 12:29am ·

Aunt Donna wrote on: http://tributeballoon.com/balloon/show/1075893?rct_ch=share&rct_id=1822088802&rct_t=1310724512&track=sharelink
twins Logan Danger and Lilly Mae.... July 14th, 2011 Logan was born a healthy bouncing baby boy, Lilly was born in a struggle for her life. This is an excerpt from an update from Lilly and Logan's Nana....Emily had been in labor for over 20 hrs. when Lilly's heart rate suddenly took a dive down. They took Emily in for an emergency C-Section. It took them 6 mins to get Lilly out, she was lifeless and had no heart rate. They did CPR and Meds on her for 17 minutes before her heart started beating on it's own. They flew Lilly to Primary Childrens Hospital. They are doing some kind of cold therapy there in hopes that they can slow down any kind of damage to her brain that may have occurred. They will be able to do a cat scan on her in about 5 days and then hopefully we will know more about her condition.... I ask that you send this balloon to your friends so that we keep more and more prayers going up for Lilly!!
7/16/11 Update from Lilly's Daddy....
Our little Lilly Bean was strong enough to get taken off the ventilator, but she has been having some episodes where her breathing and heart rate will immediately drop, so she still has an air tube in her nostrils She also has seizures every once in a while, but they are lessening in number and severity as we go along... Please throw up your prayers. 7/19/11 Another update from Lilly's Daddy.... I got more information about the MRI they did on Lilly last night. She has a substantial of damage to both hemispheres of her brain. The MRI shows the brain releasing chemicals consistent with an injury due to a lack of oxygen to her brain, as well. The thalamus(core) of Lilly's brain has evidence of injury, but the left frontal lobe sustained the greatest amount of damage. This is the part of the brain that involves more of the "executive" functions such as decision-making, reasoning, and IQ.
My little Lilly Bean is so beautiful. She has taught me so much without even saying a single word. If she makes it through this trial without any major long-term effects, that would be great, but if my wife and I have to care for her all the days of our lives, we are up to the task.
7/21/11 A new and promising update from Lilly's Daddy!!....
A Good Day for Lilly!!!
I spoke with the neurologist today. We went over the pictures of the MRI. He showed me that although Lilly's injuries mi ght have an effect on her motor ability, but shouldn't have that much of an impact on cognition, reasoning, and IQ if any. Now, that doesn't mean that everything will be okay--we are still not out of the woods yet. She also had her catheter removed, a tube from her umbilicus taken out, and a PICC line put in. She is also being fed a small amount of Emily's breast milk. The doctors are also weaning her off of the ventilator. Today was a good day!
By: Rocky Loveless
July 23, Another update from Lilly's Daddy...
Today, Lilly Mae had a pretty relaxing time. She got to hang out with her dad most of the day. During their visit together, he was able to hold her for the first time and also feed her, as well. Rocky had her in his arms for almost 4 hours today and is looking forward to getting to do that more often. Emily arrived late, because Rocky forced her to stay home and rest. When she was rested, she was able to be involved in "Kangaroo Care" which is skin-to-skin contact for over an hour. Our little Lilly Bean was able to practice sucking on her pacifier. This was also a day in which dad had to opportunity to change a few dirty diapers(the first of many), with some good and some looking like World War 3. Lilly enjoyed seeing her father struggle in this tricky task. She is ready to go to sleep now and be involved in her first holiday, "Pioneer Day", tomorrow. Today was a good day.
By: Rocky Loveless
July 26, 2011 A new update <3
Today, Lilly got her PICC line taken out and is now feeding on Emily's breast milk only, although she is still being fed through a tube that goes into one of her nostrils and down her throat. We have been talking to the staff and they have determined that Lilly Bean will have a G-Tube inserted into her stomach that we will feed her through due to the fact that she cannot swallow and has no gag reflex. This will be inserted while she learns how to eat orally. Her g-tube may be in for a few weeks or the rest of her life. Please pray for her as she goes through this procedure.
By: Rocky Loveless
8/6/11
Latest update from Lilly's Mommy...
My Lilly Mae is home at last! She shocked the doctors and nurses by doing so well so fast. I know it is because our Heavenly Father listened to all our prayers! Thank you so much. Her twin brother, Logan was so happy to see her. He just keeps starring at her. Even sucks on her fingers! She still has a way to go. She is on oxygen, suction, and a g-tube. But overall is doing well. We LOVE our Lilly Mae!



Back to Prayers for Lilly: (This is not nearly even half the post, but some with it documenting things that happened)


I wanted to give a few updates from Emily. Lilly is coming off the ventilator today! They ran an x-ray and it does show some brain damage but they won’t really know much until Monday when they do the MRI. She has also had some seizures but they are improving so that’s a great sign. Emily is optimistic and trusts that whatever God’s plan is for Lilly it is something that they will embrace with a smile.
· · · July 16 at 12:17pm ·




    • · · · July 17 at 12:20am



      Lilly Bean had a really rough night last night, around 2am, I got a call from one of the doctors saying that they put her back on a ventilator, because she had a seizure that stopped her breathing and her heart. They had to rescusitate her by doing chest compressions. Please pray for the strength to thrive and get better. She has already taught me many things. Pray that her days are lengthened so I can teach her.
      · · · July 17 at 9:23am ·

      Primary childrens hospital is treating me so well! It is against the rules to hold your baby hooked up the way she is. It took them 45 min to prep but they let me hold her! Against rules for children to be in NICU, Logan was the exception for today! Very emotional, at worth it! I love them!!!- Emily
      · · · July 18 at 9:30am
            • · · · July 18 at 9:31am ·