Friday, September 27, 2013
IT'S A MIRACLE!!
As I write this post, tears are streaming down my face, my heart is exploding, my shoulders feel as though the 10,000 lb weight I have been carrying has been lifted, and the words escape me. I received a call from Londyn's neuro plastic surgeon. He is completely in shock. Londyn's sutures have not fused. SHE WILL NOT BE HAVING SURGERY!!!!!!!!! Did you hear me!?!?! WE ARE NOT HAVING SURGERY!!!!!!!!!! I cannot even begin to describe how extremely overwhelmed with joy I am right now. She has once again been protected and we have received yet another miracle from God. She continues to shock me each and every day. As I write this she continues to repeat the words "mama... mama.... mama..." My heart swells. I am the luckiest mom in the world. This girl is amazing. We are so blessed. We love you all. Thank you for all of your love and support. You keep us going.
Wednesday, September 25, 2013
Here we go again...
Today I took our sweet Londyn to
the University of Utah to see a Neuro Plastic Surgeon. When Londyn had her first brain surgery, the
neurosurgeon placed a drain into her ventricle to drain out the fluid and blood
that had accumulated in her brain. He
didn’t check on her for a few days and ended up over draining her brain, which
caused her sutures (bones that form in your skull) to collapse in. They were
now overriding which gave her a very odd shaped head. Her pediatrician sent me
to this surgeon in hopes that we could help reshape her head by using a helmet.
There is a very narrow window you have to fix a babies head shape. Once the
baby turns 9 months old, your window has usually closed. Since she is now 7 ½
months we wanted to get on top of it. When I saw the surgeon today, he
discovered that her sutures have already fused. Some of these aren’t even
supposed to fuse until you are in your 20’s. He said at this point, we are way
beyond a helmet and that it would not be possible to fix Londyns head that way.
She is going to have to have a full cranial reconstruction L This entails cutting
her head open from ear to ear, taking out all of the bones in her head,
reconstructing the bones while they are outside of her head, and then placing
them back inside of her. This is a HUGE surgery and as you can imagine, we are
pretty scared and nervous to say the least. We could use any prayers or good
vibes that you can send our way. We are heartbroken that our angel has to go
through yet another brain surgery, but we know it is something that will be
good for her in the end. The surgery is
very important so that we can make sure that her brain growth is not inhibited
because her head is too small. This brings me to the silver lining in all this
(yes there actually is a silver lining.) When they did a CT scan on her brain
today, we saw that her brain has continued to heal and get better. It is an
absolute miracle and it is astounding to me how much she is being watched over.
We continue to see miracle after miracle with this child. We are so blessed to
have her.
Also,
recently the doctors have been very concerned about Londyn’s lack of weight
gain. She has been being very closely monitored by her incredible pediatrician,
GI specialist, and feeding therapist. We had a swallow study done to see if
there was a chance that she could be silently aspirating. It basically comes
with the territory of a baby with her same neurological make up that they at least
have some sort of abnormal swallow. After the swallow study, her doctors were
shocked to find that she has a totally and completely normal swallow. Once
again, she is a miracle. Her doctors have been throwing around the idea of
placing a feeding tube in order to give her the nutrition she needs. Her GI
doctor is not on board with that though. He has A LOT of faith in her and
believes that she can work it out. He obviously isn’t taking that option off
the table, but he is giving her every possible chance to prove that she can do
it on her own. It feels so good to have someone who believes in her and really
cares about her as a human being (not that all of her other doctors don’t.) Her
pediatrician also had her do blood work to see if she was anemic or malnourished
from the lack of food. Once again, she surprised him. Everything came back normal.
She has been so watched over and protected and I could not be more grateful. Please
keep our angel in your prayers. She could really use it right now.
Wednesday, September 4, 2013
Where we are now
I often get the question how is Londyn doing now? Where are you guys at with everything? How are you guys doing? Those are all fabulous questions. I never quite feel like I can answer them though because they would take FAR too much time to answer so I usually just go with the "We are doing okay" answer. The truth of it all is we are just trying to get through life one hour at a time. These past 6 months have been VERY HARD but they have also been incredibly rewarding.
I thought a great thing to do would be to tell you what a day in the Pando house has been like for the past few months.
When we first brought Londyn home, we were on a 3 hour schedule. We were on that schedule because thats what the NICU did and thats what Londyn was use to, so every 3 hours we would change her diaper, feed her, give her her meds, and I would pump her milk. We couldnt ever just have her breastfeed because we needed to see how much milk she was getting. The schedule was incredibly exhausting. It would take Londyn anywhere from an hour to an hour and a half to eat so by the time she finished, and I pumped her milk, it was just about time to start over again. It was exhausting.
Most recently, our schedule has been somewhat like this...
12:00am-2:00am wake Londyn up and feed her
7:00am Londyn wakes up for the day. She needs her meds, I change her diaper, do her stretches (which consists of stretching her feet, ankles, shins, hamstrings, and right hand. She then eats
8:00am I begin work. I work from home so there is a lot of multi tasking that goes on throughout the day. Whenever Londyn finishes eating, I lay her down on her play mat to play with her toys
9:00am Londyn starts her tummy time (which is very crucial therapy for her)
10:00am I change her diaper again and do her stretches (each time we change her diaper, she is supposed to do her stretches).I try to feed her again and then continue working
1:00pm try to feed her again
2:00pm I bathe her and try to clean up around the house a little
4:00-5:00pm I finish working and then feed her again
6:30pm I start cooking dinner (sometimes this doesn't happen and sweet Blake makes dinner)
7:00pm Blake gets home from work and helps me with dinner or tries to help get Londyn to eat. She gets her meds again
10:00pm Londyn typically throws up each night around 9:00 or 10:00 so we typically spend time cleaning up, bathing her, getting her ready for bed and then feeding her again. We then put her to bed.
(I should add that Blake and I both work two jobs and Blake is currently going to school. He works so hard so that we can have a good life.)
Obviously this is a very variable schedule. That is just roughly what each day is like. I usually take her to atleast one or two doctor appointments a week. Sometimes there are more. Last week she had five appointments. I take her to the pediatrician every Thursday or Friday for a weight check and every few weeks she has a therapist that comes to our house and meets with us.
As you can see from above I talked A LOT about eating. Our lives have become consumed with Londyn's eating. This is her number one struggle and we have not been able to pinpoint why yet. She has been seeing a G.I. doctor for the past couple of months and we have tried all kinds of medications, formulas, fortifiers, and different mixes of all of the above. Londyn is the best baby in the entire world until you try to put a bottle in her mouth. She will basically scream and cry until you just give up. We typically spend anywhere from 10-12 hours a day trying to get her to eat. It is not uncommon for us to spend 2-3 hours trying to get her to eat 3 oz. It is also not uncommon for one of us to be in tears by the end of the day. Almost every single night, we will get in the car and drive around for about 45 minutes because for some strange reason, she will eat in the car. Up until this last week I use to pump exclusively for her so basically my life was to pump, then feed her, pump, then feed her. I made a deal with myself that if I could just make it until Londyn was 6 months old, I would feel good about being done feeding her breast milk. It was VERY hard with all of the stress just to keep my milk in, let alone produce enough milk to keep up with her increase in eating. I sometimes feel guilty or like I failed at breastfeeding, but I did the best I could.
As of right now Londyn currently weighs 11lbs 13 oz and she is 29 inches long. She is EXTREMELY long and just continues to get longer and longer. She currently still wears 0-3 month clothing but has to wear 9 month pajamas because she is so long (she may have to start wearing 12 month jammies soon.) We are currently in the process of trying a different kind of formula. Her doctors think that she is extremely allergic to protein and cows milk. Unfortunately for us, the formula is outrageously expensive and supposedly insurances WILL NOT cover it. Our pediatrician is working with us to battle our insurance company to see if we can get them to pay. He said we will probably have to pay for the first couple months, but hopefully we can get it covered after that. We are also seeing a feeding therapist to help us try to figure out ways to help Londyn to like eating more. What they think happened was she has a very high pain tolerance because of all that she has been through, so although she was likely in pain all day long from her food, she only cried when we would try to feed it to her because she knew it would hurt her. So now, we have to try and help her see that eating isn't a horrible thing that causes pain. We are hoping it doesn't take too long for her to understand because we are going a little INSANE. We try to stay as positive as we can but the truth of it is, it sucks. It is by far the most frustrating thing I have ever dealt with. It is a trial that never lets up. We don't get a break from it. There is no way to understand it unless you have tried all day long to feed her. Its very hard. Londyn is also very particular about who feeds her. She typically only wants momma to feed her which is rough when I need a break. I feel like she has gotten a little better recently about eating for other people, but she still prefers mom.
Neurosurgery:
Blake and I took Londyn to the Primary Childrens emergency room in June because we thought that her shunt was malfunctioning. They did a couple of brain scans to see what was going on. The neurosurgeon came in so ecstatic when she saw her brain scans. She told us that somehow, someway, Londyn's brain is miraculously healing. When Londyn had her brain surgery, her doctors told us that they could not fix that damage that had already been done, but that they could try to preserve what was left of her brain. I broke into sobs when the neurosurgeon pulled up her brain scans. I knew exactly what I was looking at and I knew it was something that we never expected to see. The doctor told us that they were completely amazed at what had happened and that they could not explain it. She said that after looking at her scan, she was very encouraged that Londyn would make a recovery. She said, "It may take a few years, but I believe that Londyn will make a recovery from this."
Last Friday I took Londyn to have her eyes checked at the Moran Eye Center. The ophthalmologist said that Londyn sees just fine. We were so happy to hear that.
Physical Therapy:
Londyn will be seeing a physical therapist a couple of times a week to help her to gain strength and recover from her stroke. She also has a therapist that comes to our house from early intervention to follow her development.
Overall, the doctors are completely astonished with how well she is doing. She continues to improve each day and beat every odd that is placed in her path. She has far exceeded any and all expectations that her doctors had for her. She is an incredibly social baby and has a way with drawing people to her. She LOVES playing with her toys on her play mat and loves to go on walks or rides in the car. She brings us more joy than we ever knew was possible.
Although things have been incredibly hard and exhausting for us, whenever I feel like I am ready to give up, I remind myself of the deal that I made in that very sacred chapel on February 16, and then I am ready to continue on.
I thought a great thing to do would be to tell you what a day in the Pando house has been like for the past few months.
When we first brought Londyn home, we were on a 3 hour schedule. We were on that schedule because thats what the NICU did and thats what Londyn was use to, so every 3 hours we would change her diaper, feed her, give her her meds, and I would pump her milk. We couldnt ever just have her breastfeed because we needed to see how much milk she was getting. The schedule was incredibly exhausting. It would take Londyn anywhere from an hour to an hour and a half to eat so by the time she finished, and I pumped her milk, it was just about time to start over again. It was exhausting.
Most recently, our schedule has been somewhat like this...
12:00am-2:00am wake Londyn up and feed her
7:00am Londyn wakes up for the day. She needs her meds, I change her diaper, do her stretches (which consists of stretching her feet, ankles, shins, hamstrings, and right hand. She then eats
8:00am I begin work. I work from home so there is a lot of multi tasking that goes on throughout the day. Whenever Londyn finishes eating, I lay her down on her play mat to play with her toys
9:00am Londyn starts her tummy time (which is very crucial therapy for her)
10:00am I change her diaper again and do her stretches (each time we change her diaper, she is supposed to do her stretches).I try to feed her again and then continue working
1:00pm try to feed her again
2:00pm I bathe her and try to clean up around the house a little
4:00-5:00pm I finish working and then feed her again
6:30pm I start cooking dinner (sometimes this doesn't happen and sweet Blake makes dinner)
7:00pm Blake gets home from work and helps me with dinner or tries to help get Londyn to eat. She gets her meds again
10:00pm Londyn typically throws up each night around 9:00 or 10:00 so we typically spend time cleaning up, bathing her, getting her ready for bed and then feeding her again. We then put her to bed.
(I should add that Blake and I both work two jobs and Blake is currently going to school. He works so hard so that we can have a good life.)
Obviously this is a very variable schedule. That is just roughly what each day is like. I usually take her to atleast one or two doctor appointments a week. Sometimes there are more. Last week she had five appointments. I take her to the pediatrician every Thursday or Friday for a weight check and every few weeks she has a therapist that comes to our house and meets with us.
As you can see from above I talked A LOT about eating. Our lives have become consumed with Londyn's eating. This is her number one struggle and we have not been able to pinpoint why yet. She has been seeing a G.I. doctor for the past couple of months and we have tried all kinds of medications, formulas, fortifiers, and different mixes of all of the above. Londyn is the best baby in the entire world until you try to put a bottle in her mouth. She will basically scream and cry until you just give up. We typically spend anywhere from 10-12 hours a day trying to get her to eat. It is not uncommon for us to spend 2-3 hours trying to get her to eat 3 oz. It is also not uncommon for one of us to be in tears by the end of the day. Almost every single night, we will get in the car and drive around for about 45 minutes because for some strange reason, she will eat in the car. Up until this last week I use to pump exclusively for her so basically my life was to pump, then feed her, pump, then feed her. I made a deal with myself that if I could just make it until Londyn was 6 months old, I would feel good about being done feeding her breast milk. It was VERY hard with all of the stress just to keep my milk in, let alone produce enough milk to keep up with her increase in eating. I sometimes feel guilty or like I failed at breastfeeding, but I did the best I could.
As of right now Londyn currently weighs 11lbs 13 oz and she is 29 inches long. She is EXTREMELY long and just continues to get longer and longer. She currently still wears 0-3 month clothing but has to wear 9 month pajamas because she is so long (she may have to start wearing 12 month jammies soon.) We are currently in the process of trying a different kind of formula. Her doctors think that she is extremely allergic to protein and cows milk. Unfortunately for us, the formula is outrageously expensive and supposedly insurances WILL NOT cover it. Our pediatrician is working with us to battle our insurance company to see if we can get them to pay. He said we will probably have to pay for the first couple months, but hopefully we can get it covered after that. We are also seeing a feeding therapist to help us try to figure out ways to help Londyn to like eating more. What they think happened was she has a very high pain tolerance because of all that she has been through, so although she was likely in pain all day long from her food, she only cried when we would try to feed it to her because she knew it would hurt her. So now, we have to try and help her see that eating isn't a horrible thing that causes pain. We are hoping it doesn't take too long for her to understand because we are going a little INSANE. We try to stay as positive as we can but the truth of it is, it sucks. It is by far the most frustrating thing I have ever dealt with. It is a trial that never lets up. We don't get a break from it. There is no way to understand it unless you have tried all day long to feed her. Its very hard. Londyn is also very particular about who feeds her. She typically only wants momma to feed her which is rough when I need a break. I feel like she has gotten a little better recently about eating for other people, but she still prefers mom.
Neurosurgery:
Blake and I took Londyn to the Primary Childrens emergency room in June because we thought that her shunt was malfunctioning. They did a couple of brain scans to see what was going on. The neurosurgeon came in so ecstatic when she saw her brain scans. She told us that somehow, someway, Londyn's brain is miraculously healing. When Londyn had her brain surgery, her doctors told us that they could not fix that damage that had already been done, but that they could try to preserve what was left of her brain. I broke into sobs when the neurosurgeon pulled up her brain scans. I knew exactly what I was looking at and I knew it was something that we never expected to see. The doctor told us that they were completely amazed at what had happened and that they could not explain it. She said that after looking at her scan, she was very encouraged that Londyn would make a recovery. She said, "It may take a few years, but I believe that Londyn will make a recovery from this."
Last Friday I took Londyn to have her eyes checked at the Moran Eye Center. The ophthalmologist said that Londyn sees just fine. We were so happy to hear that.
Physical Therapy:
Londyn will be seeing a physical therapist a couple of times a week to help her to gain strength and recover from her stroke. She also has a therapist that comes to our house from early intervention to follow her development.
Overall, the doctors are completely astonished with how well she is doing. She continues to improve each day and beat every odd that is placed in her path. She has far exceeded any and all expectations that her doctors had for her. She is an incredibly social baby and has a way with drawing people to her. She LOVES playing with her toys on her play mat and loves to go on walks or rides in the car. She brings us more joy than we ever knew was possible.
Although things have been incredibly hard and exhausting for us, whenever I feel like I am ready to give up, I remind myself of the deal that I made in that very sacred chapel on February 16, and then I am ready to continue on.
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