4/8/2016
"Dear Friends and Family,
This week Derek and I got the surprise of a lifetime: Our little baby boy will be born on MONDAY. As in three days from now! Over the past two months, my blood pressures have been consistently higher than normal for me....and even though I tried to rationalize them, the doctors are taking the numbers seriously and they are electing to deliver him at 37 weeks to avoid any further complications in either of us. As you can imagine, this has joyfully turned our whole world upside-down... our "May" baby has plans of his own!
We debated for a few days about how or if to tell all of you, but this morning we really determined that your love and prayers are going to help us get through what is bound to be an emotional and physically taxing time. Any thoughts, prayers, or fasts that you can offer us would be deeply appreciated. Baby Askham will not be able to have visitors for the first few days of his life, so we ask that you send your love from afar until we have a better idea of his progress. We promise to heavily document his cuteness through all-too-frequent facebook photos.
Today I am so grateful for Amazon Prime shipping (two-day shipping on all of our leftover baby needs...YES!), reeses cups, the guidance and direction of the Holy Ghost, my cheerful husband who has patiently helped me hang every piece of art in the nursery, and unisom for giving me a (much needed) panic-attack free night of sleep. I can feel the encouraging hand of all of you along with my Heavenly Father helping our family meet these challenges. We can't wait to celebrate the life of this little one with all of you!"
Peter's Update: 4/11/16
"Our little Peter Arie Askham was born today at 1:12pm weighing 6lbs 2oz and 19 1/4 inches long. He has blonde fuzzy curls and the biggest lips you can imagine! He and I have had a very busy day and we are both tired and recovering! Thanks so much for your prayers --they have calmed my heart and I have been able to relax and take some time to heal up. We will have more updates on his condition as the week progresses, but the most important thing is that he is here and happy and already melting our hearts!"
Peter's Update: 4/12/16
"Today I watched my little baby go into surgery. His operation took place at 1:30pm, almost exactly 24 hours after birth. It all seems so unreal-- I feel like he has been a part of our family forever, I can't believe he is only a day old! How does the heart feel this much love?
Our surgeon, Dr. Gross, is an incredible woman. I could tell the love she has for her work as well as well as these kids. I never thought I could trust anyone so completely with my child, but I felt entirely at ease. I know this is because of the prayers of so many that have softened my heart and allowed me to relinquish control. I thought I would be a basket case when this day came, but I have just been grinning from ear to ear! My baby is so well taken care of!
Peter's surgery was very successful and he is now in the recovery room with daddy. His spinal cord is now back where it belongs and the wound has been closed. Dr. Gross believes he may not need a shunt, but the team will continue to closely monitor his brain to determine the best course of action. Until then, we are focusing on working with the physical therapist to strengthen his legs, getting his tummy full, and just giving him lots of loves.
We so deeply appreciate all of the prayers that have been said on our behalf. There is no way to articulate the amount of excitement and peace we feel. Your prayers has transformed this trial into one of complete joy and I feel absolutely spoiled to be this kid's mom! I also cannot adequately express my appreciation for the kindness of all of you. Your little comments and messages have brightened my whole day. I love that I get to go through this experience with all of you! There have been countless angels, both seen and unseen, who have protected my baby. Thank you for being one of them! Love and hugs to you!"
Peter's Update: 4/14/16
"Today was unexpectedly the best day ever! Doctors gave the okay for Peter to be on his side (where as before he had to be on his tummy only) which meant that we now have the okay to hold our little one! I was so spoiled and held him for hours! Grandma got some time feeding him and then when dad got home from work, he got cuddles too! Little Peter was so calm and he loved being held.
Peter's stats are looking good too. He currently weighs 6lbs 15oz and is known as one of the best eaters in the NICU (he gets that from me!). He goes to the bathroom well on his own (I even got to change my first diaper today!) but the plan is still to catheterize him out of precaution until he is big enough to undergo further testing.
Our current goal is to get him moved from his current room in the NICU down to the "NICU Village" where mothers and babies can stay together to learn care before discharge. Today we learned that Peter is a great candidate and is next on the list to move to the village, we just have to wait for an open room. Not that we want to kick any other moms out...but if you could pray that we might be able to get one of these rooms so I don't have to go home without my baby tomorrow, I would appreciate it!
My heart is just bursting with pride! Our little guy is exceeding all expectations and we know that is because God has heard all of your prayers, along with our own. Thank you, friends!"
Peter's Update: 4/15/16
"Well folks, we had a really emotional day! I got discharged today and went up to see Peter. We had been hoping that we could move to the Village together, but Peter's doctor said that we would have to wait until Monday or Tuesday when we had a better idea about him needing a shunt. I was handling it all really well until we got my room all packed up and then I just sat and cried. I have been trying to be brave, but it is so hard leaving my baby and going home from the hospital sore and empty handed!
We went up to see Peter for a few minutes before running some things home...and then Peter's neonatologist let the team know that we WILL be going to the Village! If the neurosurgery team decides he needs a shunt, we may have to go back to the NICU for a day after surgery, but they saw no reason to separate us for the weekend. Peter was just as shocked as I was. I cannot tell you how happy I am! This is mommy bliss."
Peter's Update: 4/17/16
"Enjoying holding my baby boy again! It's my favorite part of every day! #mombun #nosleep#kangaroocare
Little Peter had a busy day today and Grandma, Derek, and I are all very sleepy! Since moving to the Village, Derek and I have become Peter's primary care takers and we are now able to do all of his hands on care without any supervision. During what we call "hands on," Peter is rotated from his tummy to his side, catheterized, given a diaper change, fed a bottle, burped, and then repositioned back on his tummy to allow his back to heal. This process usually takes about 30-45 minutes and must be repeated every three hours, so we get to sleep in two hour shifts. I love taking care of my baby, but I have also been so grateful for Derek's help. He is an amazing dad and serves us both in such a loving way.
Peter has had such good bladder control that his cathing was reduced from 8x daily to 4x daily. In even better news, the last few times I have cathed him, he vacated his own bladder before hand and the cath came up dry! The doctors and nurses believe that this is a very positive sign that he has control of the nerves that go to his bladder (in addition to full bowel control, which we already knew). We are cathing him as a precaution until we know more at his two month scan.
In other news, Peter's jaundice test came back normal (woohoo!), he got his first shot and was braver than mommy , and we haven't had any more acid reflux/choking episodes. Neurosurgery will make their decision as to whether Peter needs a shunt tomorrow morning. If he does, surgery will probably take place on Tuesday and we will likely move back to the NICU for recovery (and then hopefully head home!).
Over the course of my pregnancy, one of my promised blessings was that being a mother would fill me with joy. There are no words that can express how wonderful being a mom already is and it is worth every sacrifice. If I could tell anything to my 20-week self (when I had just found out about Peter's diagnosis), it would be that the love I feel for him would be so all-encompassing, that even the hardest trial seems miniscule. He is my perfect, happy, brave, sweet little boy who just so happens to need a little more help than other babies. I am so glad God let me be his mommy. I can't imagine life without him! So be kind to your 20-week-selves... life is always so much better than you think it can be."
Peter's Update 4/18/16
"Sometimes you need an ice cream sandwich and a snuggle.
Today was a great day filled with many triumphs! Peter got cuddle time with both mom and dad, I got to feed him for the first time (sayonara bottles!), and we saw plenty of movement in the legs today.
Despite all of the good news, Derek and I, along with Peter's neurosurgeon, decided to move forward with a shunt to treat the building hydrocephalus in Peter's brain. Right now he seems so perfect and happy it is hard to submit him to another surgery, but ultimately this shunt will allow Peter's brain to function properly in the long run. Without it, pressure in his skull would continue to build and eventually he would suffer brain damage (in addition to headaches, vomiting, lethargy, loss of consciousness, etc.). This is very sad for us because it meant that Peter had to go back to the high intensive NICU to be prepped for tomorrow's surgery. Peter's shunt will also be pretty visible for the first few years of life. Mommy got lots of pictures of Peter's beautiful round head today... when we see him tomorrow he will have a little lump in his skull and the cord that leads to his chest cavity will also be visible as a bump under his skin.
I am having a hard time leaving my baby in someone else's care again and going home without my baby boy. I am worried about him being scared without mommy, and I feel pretty heartbroken about the shunt being more noticeable than I originally thought. Obviously he will always be my perfect boy, but I am sad that this surgery will be so noticeable to others. Please pray for us to be strong and that the three of us can all be comforted. I could use a little love ."
Peter's Update: 4/21/16
"Another milk coma brought to you by Boppy! Thanks so much for my Boppy, Shannon Burton Miller and Cami Burton Heywood! It has been a lifesaver and makes feeding time so comfortable for both of us!
Pediatrics decided that Peter is a perfect baby and they don't need to keep him in the NICU any longer! They have given us an apnea monitor so I don't have any freak outs about his breathing during the night and we have all been happy (tired) campers. We are currently back in the Village awaiting discharge planned for this weekend. I cannot believe we survived this challenge! I didn't think I could bear it. But as Derek said yesterday, things always end up better than we think they will. We are learning to put complete faith in God, even when it comes to that which is most precious to us. Our hearts are full of gratitude for all the help we have received. Every time I look at my miracle baby, my heart just swells with love for all those who prayed and wished us well. You have helped give me the best thing life has to offer. I can't wait to tell Peter about all of you someday. He will know he is loved!"
Peter's Update: 4/25/16
Peter is two weeks old today! He loves eating, sleeping, and being cuddled, and absolutely hates everything else He had his first check up today and weighs 7 pounds and is 20 inches long, 50th percentile. His head growth was up a bit but he is right in proportion with his other growth, so it seems the shunt is functioning well. Newborn clothes still swamp him, but probably not for long!
Peter seems to be doing all he should be, butDerek and I are still figuring everything out. In the NICU I was feeling so much relief that everything was going well, but now that we are home I have just been so worried about the rest of his future! I wish we could know everything right away, but we have a lifetime of uncertainty ahead of us and that has been a really overwhelming feeling....but that is just how every parent feels, I am sure.
P.S. When we were at the doctor's office, three people asked us if this is our first baby, and another guy remarked (as we were wolfing down some food while Peter slept) "you guys aren't hungry or anything, are you?" Apparently we look as frazzled as we feel. Heaven help us!
Peter's Update: 4/29/16
Even with footsies in casts, Peter is one good looking baby!
Good news and bad news today...
Bad news: Peter has a vertical talus in both feet that causes the toes to be pointed strongly upwards. He will need casts and surgery to correct the misalignment of his foot bones. Peter also has hip dysplasia in both hips that may need treatment after the series of leg casts if he doesn't grow out of it.
Good news: Peter was kicking so much that it took three of us to hold him down to put on the casts. The doctor said he has the strongest legs of any 17 day old baby he's ever worked on! He gave Peter an extremely positive prognosis and believes that he will be able to walk, run, and play sports after having his feet corrected. Even though he will have to be in various casts and braces for the next year or so, the doctor also believed that Peter should have no problem reaching his physical milestones like crawling and walking.
I also successfully accomplished my first errand without help and I am feeling pretty good about everything today!
Good news and bad news today...
Bad news: Peter has a vertical talus in both feet that causes the toes to be pointed strongly upwards. He will need casts and surgery to correct the misalignment of his foot bones. Peter also has hip dysplasia in both hips that may need treatment after the series of leg casts if he doesn't grow out of it.
Good news: Peter was kicking so much that it took three of us to hold him down to put on the casts. The doctor said he has the strongest legs of any 17 day old baby he's ever worked on! He gave Peter an extremely positive prognosis and believes that he will be able to walk, run, and play sports after having his feet corrected. Even though he will have to be in various casts and braces for the next year or so, the doctor also believed that Peter should have no problem reaching his physical milestones like crawling and walking.
I also successfully accomplished my first errand without help and I am feeling pretty good about everything today!
5/9/16
Peter's Update:
Peter's Update:
Our four generation photo with Peter's GrandmaAskham and Great Grandma Warner.
Today Peter is four weeks old! He had his follow up appointment with Dr. Gross (his neurosurgeon) and it went really well! His head growth is right on track with no signs of a shunt malfunction. The stitches on his back, tummy, and head are all healing wonderfully and Dr. Gross told us we don't have any more restrictions. Up until now he has only been allowed to be on his back for 30 minutes at a time, but now we can go for longer walks and car trips, and he can also use his baby swing and play on his back as much as he wants! He has had a lot of trouble being on his tummy since getting his legs casted so this is a huge relief to me! I thought this day might never come, but here it is... my arms finally get a break
Last night, Peter also gave me the best mother's day gift ever and slept in his crib all night! Normally after about five minutes he would just scream and scream until someone held him, but it seems as though he is starting to understand that being in the crib is not a bad thing... and boy, do I feel well rested! We just adore him!
4.11
"I'm one month old today!"
Peter is 7 lbs 2 oz, and 22 inches tall! He loves having cuddles with mom and dad, eating, and car rides. He is loving being able to sleep on his back but still is convinced that diaper changes should be outlawed by the Geneva Convention. Peter has filled our lives with love, laughter, and sleep deprivation, and we wouldn't have it any other way!
Peter's Update:
5/20/16
5/20/16
Today was a really exhausting day. It's been a lot to take in! We went for Peter's casting appointment today and had some bittersweet news: the casting in Peter's left foot has successfully moved the talus into the proper position, but the right has been more stubborn. Instead of casting again and again, Dr. Chong thought that we should all take a break and see what happens as Peter grows and strengthens his muscles. We are thinking we probably will end up doing surgery to pin the talus bone in its proper place, but Peter has healed so far ahead of the curve that he is actually too small to be a good candidate for the procedure now. We are going to go back in three months to assess his foot position and see what needs to be done. My heart hurts thinking about surgery right now, so I am just trying to focus on all of the positive and also pray that somehow Peter might be healed before that day comes.
In the meantime, Peter got his first set of AFOs to help preserve the positioning that the casts achieved until we decide what to do. Aren't they adorable? The orthotics doctor had to custom shape the smallest ones they had to fit Peter's newborn feet. They have little elephants on them but they are so small the pattern doesn't really come through. He just has to wear them at night, and we will go back once a month to get new ones to accommodate his growing. Peter will likely use braces like this for walking when he gets old enough. These will be our best friends
In other news, Peter smiled at me for the first time today and even gave me a few smiles since! He is just the sweetest thing. I also wanted to thank everyone for checking in on us and sending love! I have been so exhausted going to all these appointments that I feel like I haven't been able to adequately respond to each of you. Hopefully now that we have fewer appointments I will feel more up to socializing with you all Thank you for your prayers. Have a blessed day!
Peter's Update
5/28/16
5/28/16
Is it okay that my best friend is a baby? He gets me.
"...I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." Ether 12:27
This scripture came to mind as I've tried to collect my thoughts today. I was reading some past Facebook posts about our pregnancy and Peter and I am just in awe! There were some good moments of faith, but I also remembered how sad and absolutely heartbroken I felt to go through this trial. Tonight I sit here happily cuddling on the couch with my little family and I am full of so much gratitude. I never thought I would make it to this point! Our lives are happy, joyful, full of love, and NORMAL. God has healed my heart in so many ways.
A month ago I remember thinking that the "me" that found out about my son's diagnosis on December 18th was just so little and fragile, and here I am thinking the same thing about that "me" from just four weeks ago. I guess it just proves that God is continuously working on the hearts of those that have faith in him. I had been praying so desperately for healing for my little guy that I had forgotten that I needed some healing too. Heavenly Father has blessed me with what I didn't even know I needed and sent me my little angel to fix all those broken pieces with silly smiles, warm hugs, and a drooly chin. Peter brightens all my days and makes every sacrifice worth it.
We have many Gethsemene moments ahead, I am sure, but just as God has taught me to grow in spiritual strength a little at a time, I believe he will prepare a way for our son to continue to grow in physical strength little by little. And as we press forward line upon line, I know that someday both Peter and I will be together in our Father's kingdom completely perfected in all ways. Until then, I am savoring every moment with my little miracle!
Peter's Update
6/6/16
6/6/16
Peter's a little traumatized from today's visit to the doctor...
He's actually been a champ today, all things considered! He had a check up with his orthopedist today who found he still had some minor dysplasia (I know, it's been back and forth and back and forth) so we are in this crazy contraption for a long time- an estimated 6 months with check ups every week (heaven help me). I am super bummed and cried at the doctor's office which I do NOT like to do, but I am trying to look at this as just another challenge that we can tackle. The better I am at keeping the brace on him all the time, the faster this dysplasia will be corrected....so we are both getting lots of cuddles tonight and maybe tomorrow we will both feel a little braver!
I feel like I only have enough energy to keep our heads above water and I am having a struggle mustering the daily strength to call various offices for appointments, talk with insurance, meet physical therapists, do our play time, stretch his little legs, bond during cuddles, mail paperwork AND THEN everything that needs to be done just to keep the household fed, organized, and afloat. Even MAKING a to-do list drains my energy-- Oh how I long for the energy of my youth. Peter and I need a Hawaiian vacation before we can be expected to do any more stupid three hour appointments. I wish spina bifida could wait for a day.
Peter's Update: 6/11/16
Peter is two months old!
He loves spending time outside, taking rides in the car, and listening to music! He can smile, babble, and hates sitting still. We love you little man!
He loves spending time outside, taking rides in the car, and listening to music! He can smile, babble, and hates sitting still. We love you little man!
Peter's Update 6/15/16
This goofy guy had to get his shots today and has wanted mommy-snuggles ever since! We also got some great news that the hip dysplasia has already improved greatly (likely only looking at weeks in the brace, not months!) and the small heart murmur he had at birth is no more! I am so grateful that Heavenly Father has magnified the efforts of Peter's doctors to ease our burdens. I love my little boy!
Peter's Update 6/24/16
This new brace certainly doesn't leave anything to the imagination!
We met with our new orthopedist today and we just love him. He has such a calm, pleasant demeanor while also really thinking critically about our situation. He gave his opinion about some of the choices our previous doctor made and we both agreed to move forward, treating all these little issues more aggressively to lay the best foundation possible for our man.
Part of our new plan was getting a different dysplasia brace that didn't play into the uneven muscle development Peter already has. I like this one better (even though it costs as much as my first car 😮) and I am excited for the change. We will have a check up in a month to see how treatment is going!
In other news, I've been a little run down this week and Peter has been pretty fussy (so maybe he is fighting a bug too?) but honestly this morning I woke up feeling so much better about our situation. There is nothing that I wouldn't do for this little boy and I am so glad he is ours to keep! Thanks for the prayers, love, and reminders to BREATHE. We are doing it!
Peter's Update: 7/11/16
Peter is three months old!!! Approximately 12 pounds and 23.5 inches long. 📏
He has become very social and loves to chat with mom and dad. He smiles, laughs, blows spit bubbles, and loves to suck his fingers or fist. Peter loves his playtime out of the brace and takes advantage with a lot of kicking, punching, rolling (with help) and even some scooting... it's hard to keep up with him all the time! The only thing he doesn't like is when we hold still We love you, Peter!
He has become very social and loves to chat with mom and dad. He smiles, laughs, blows spit bubbles, and loves to suck his fingers or fist. Peter loves his playtime out of the brace and takes advantage with a lot of kicking, punching, rolling (with help) and even some scooting... it's hard to keep up with him all the time! The only thing he doesn't like is when we hold still We love you, Peter!
