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.
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