Oliver is 1!

Thursday, September 1, 2016

 Oliver is the sweetest baby!  He is doing so well and is so smart.  He is walking and tries to catch up with the big kids.  He loves climbing.  I'm constantly having to get him off the table and counters.  He just recently started dancing when music comes on.  He loves to sing and make so many sounds.  He says Dada and Mama.  He pushes his little cars around the house and makes car noises. He loves just hanging out and tagging along with his sisters and brother.

Oliver turned 1 on July 7th!  As I was reflecting back on that day a year ago, it was very traumatic for me and I felt a roller coaster of emotions, but in the past year this baby has changed my life for the better, and I love him more than I can describe!

Last year I opened up a little about my feelings with Oliver and how difficult it was for me when he was born, but I'd also like to share some of the tender mercies of the Lord and how much peace and blessings have come in this past year.  I wrote this post almost 2 months ago, but debated wether I would post it for others or keep if for my own record.  I've shared some of these experiences with family and close friends, but I decided to put them here for others to see how much our Heavenly Father and Jesus Christ are aware of us in our daily lives and how much peace and strength can come during difficult and hard times. 

When we were naming Oliver, the previous names we had in mind just didn't fit once he was born. At the hospital Brendan's Dad gave me a priesthood blessing and one thing that stood out to me was that this baby would bring peace.  Oliver was a name that I had liked for Niels but didn't end up using.  As I was looking at the meaning of the name I just felt it fit.  Oliver means Olive tree in French.  The biblical olive tree symbolizes peace and fruitfulness.  When you extend an olive branch it signifies an offering of peace.   The next couple of months there were times when I felt so much stress and uncertainty.  I remember one night in particular when I was looking up information online on some of Oliver's symptoms and it all seemed so horrible.  I was crying and feeling depressed when I had an impression to go pick up my baby.  I went in the room and picked Oliver up out of the bassinet and an immediate peace washed over me and I felt that everything would be OK.  Since that experience there have been many other times that I  have needed and felt peace as I held little Oliver in my arms.

I would like to back up a little and share some of the struggles I was dealing with before Oliver was born.  After having Niels I felt very overwhelmed with my day-to-day tasks as a mother, and struggled to be happy with the everyday.  It wasn’t that I wanted to be doing something else, this was what I had always wanted to do, but it was so much harder than I ever could have imagined, as I’m sure most moms know. The housework never ended and the kids were constantly making messes.  I felt I would take 1 step forward and 2 steps back. I would finish cleaning a room and then find that the two previous rooms I cleaned were already a disaster.  Milk spilled on my mopped floor, urine all down the cleaned toilet, and every piece of clothing the kids owned somehow ended up on the bedroom floor during dress up.  Most of the time it looked like we didn't own a trash can or a laundry basket in the house.  I realized having your house spic and span with little kids wasn't realistic and that wasn't what I was going for, I just wanted it semi clean so we could walk down the hall at night without tripping on things that were all over the floor, and somewhat presentable if someone stopped by.  Going grocery shopping seemed like a simple task that I should be able to do, but the thought of it with three little kids gave me anxiety.  One kid always seemed to be either running away from me or throwing a fit, another kid had to go to the bathroom right that second, and the baby was screaming or needed to be fed.  There were times that I had to leave a whole cart full of food and get out of the store as soon as possible before I had a meltdown in public.  The reason I usually resorted going to the store with the kids in the first place was because it never worked out to go in the evening and then I was stressed out because I didn't have anything healthy to feed my family for dinner.  The worst part was that I just wasn't very nice at handling situations with my kids.  I felt like I was yelling too much and at the end of the day felt so upset about it all.  I really didn't know what to do to a have a better balance and to be happier with what I was doing in life.  So when Oliver was born I couldn't imagine what my life would look like from then on and how I could possibly handle such a stressful situation.  

Now a year later I'm the happiest I've ever been as a mother.  I've been able to more fully love each of my children and cherish them.  I feel that the Savior has helped me to have more of an eternal perspective in my life and realize what's most important.  I've had moments like that in my life before where you stop and have a change of focus.  For example, maybe I'm stressed out about going somewhere and I look terrible and then I see a man walking down the road struggling to walk.  It brings me back to what's most important.  Instead of stressing about how I look and to remember to be grateful for body that I've been given that can do so many things.  Or I would be making a cake and stressing out about something not looking right or tasting right and then my kid comes in screaming and needs stitches and all of a sudden the dumb cake you were stressing about isn't important.  I feel like Oliver continues to help me have that eternal perspective.  So many little things that don't matter in the grand scheme of things.  Before in my life there were so many things that seemed important that I stressed about that were getting in my way of being happy.  I'm sure most people have seen the quote on Pinterest that says, "Good moms have sticky floors, messy kitchens, laundry piles, and happy kids."  I hated that quote!  I can't stand sticky floors, and I wouldn't have it.  But I've learned to let things go.  Anyone that has listened to me complain knows that we have a minimum of one milk spill a day over here.  My kids would cringe and apologize when they spilled something because they knew what my reaction would be, but now most days I just say it's ok and we use the towel, or shirt, or whatever is usually on the ground and wipe it up and keep going (or sometimes it doesn't get wiped up and it just dries on the floor.)  My kids are still getting used to my new reaction and always seem to say, "It's OK mom?  You're not mad?"  Of course I'm still working on my patience, and you will still find me yelling at my kids at times, which I've already done twice while typing this.  I felt Niels touching my legs and found he was using a blue marker to draw all over my calf, and a couple minutes ago he peed on the carpet in his room.  I'm starting to feel like a hypocrite, so I'll stop writing about the patient mom I am.  Just ask Brendan how my patience is if you want the full truth :), and just know I'm making progress. 

I also feel there were lots of high expectations I had set for myself that I had to realize were too high, or just not realistic for me at this time in my life, for example, having myself and family put together and looking a certain way (it's ok to go out in public not having showered for a few days and my kids hair not brushed), pinterest parties, healthy gourmet meals, running marathons, beautiful house, going on a target run with 4 little kids in tow.  Most of these are things I enjoy doing, but I've had to slow down in life and realize there is a time and season for everything.

I've been able to develop more Christlike attributes.  The kind outpouring of love from friends and family after Oliver's birth really touched me, and made me want to be a better person who looks outward.  I had friends that would bring meals, babysit my kids, and text to check up on me all the time.  One friend randomly stopped by with two full bags of food from Trader Joe's.  The closest Trader Joe's is 40 minutes away and she said she was there and thought of me and didn't know how often I got up there so they bought their family favorites and brought them to us.  When I closed the door, I just started crying.  How thoughtful!  How often when I'm out shopping or running errands am I thinking of other people?  A friend gave a lesson in church recently about looking outward, and I felt so inspired by it.   We are so much happier when we are looking outward and less focused on ourselves, when we are sympathizing with others, giving people the benefit of a doubt, being less judgemental, and more loving and compassionate people.  There were times before when I would know of a hardship someone was going through, but didn't know what I could do to help, so I ended up doing nothing, but because of my experience I know how much just a written note means.  

After Oliver was born, I really tried to focus on the positive, but it was hard at first, and I really wished I didn't have to go through this.  This was something very difficult for me to go through, but I felt my eyes were opened to lots of other hardships people were also going through and it gave me great strength.  I had signed Hazel up for Fall soccer and wasn't sure how it would work out getting her to games and practices by myself with all of the kids and Oliver was only 6 weeks old.  We went to her first soccer practice and I was sitting on the grass with the kids when Oliver started getting fussy in the stroller.  I had him covered and was a little stressed about taking him out to feed because people stare when they see him.  There was another mom on the grass behind me, and I heard her say to her daughter she was going to feed her baby.  I turned around and saw that her baby had a bilateral cleft lip.  I fed Oliver and when I put him on my shoulder to burp she could see his face, and she asked me how old he was and started talking to me.  I asked about her baby and if he was going to have surgery.  She said he was supposed to have it at 2 months but she wanted to wait until he was a little older and he was having surgery next week.  He was almost 5 months.  She was also up at Primary Children's Hospital in the Craniofacial clinic.  This was her 4th child, and she found out about her baby's cleft lip and palette only a week before her baby was born.  Oliver has a cleft nose and other things, but even though they don't have the same complications, we were going through very similar things in our lives.  We could relate with taking our babies in public and the stares you get, expectations of how our babies would look after surgery, worrying about hitting milestones in their development, how they would be cognitively, and many other things.  I had never run into anyone that had a baby with facial anomalies, and I felt Heavenly Father knew how much I needed to talk to someone that was going through something similar.  Another mother on the team was going through chemotherapy for breast cancer and was undergoing surgery for a double mastectomy.  The soccer coach of that same team had a lame arm, and wrote the team an email explaining that some of the kids had asked about it and so she shared her story.  She was born with epilepsy and as she got older it got a lot worse.  Whens she was 18 the doctor said she could either have the surgery to correct it which would cause her to be a vegetable or she would die before she was 30.  During her 19th year shortly after her 18th birthday she had the first of five brain surgeries, the fifth and final one did not cause her to be a vegetable but did paralyze her left arm.   She had gained a lot of use back in her arm but not the hand and wrist.  There was a time where her life and future looked so bleak and here she was now a mother of 6 coaching her daughter's soccer team.  I didn't feel like this was a coincidence that we were all on that same team together.  It gave me strength during that time to see other people and their struggles and strength to get through hard things.

I mentioned in a previous post how I felt that I would really have to rely on my Savior more than ever to get through this.  My relationship with my Savior has grown so much this year, as I've had to increase my faith in him and look to him for comfort and peace.  He knows us better than we know ourselves.  With my already hectic life I didn’t know how I could possibly take on more and get through each day, but with him I have been able to do more than I thought possible.  With his help I have been able to grow and become more like him in developing Christ like attributes.  I still have burdens to bear, but he has lightened them and been with me to bear them up. Because of him I have found joy in the everyday.  Because of him I have felt peace during uncertainty. Because of him I have felt comfort while watching my baby suffer and bear physical pain I’ve never experienced myself, but know that the Savior has felt all of his pain and can succor him.  From the hymn How Firm a Foundation it says, I’ll strengthen thee, help thee, and cause thee to stand.  He truly has done that for me. Because of him I know I can do hard things. I love my Savior and know he is the Savior of the world.   

We've been through a lot together this past year, and I love this little family of mine.

I'm getting emotional as I type this, because I remember so well how I felt in this picture.  I had been crying so much, and the last thing I wanted to do was take a picture, but I remember thinking if my baby doesn't live much longer I will regret not taking pictures at his birth, so I tried to smile and carry on.

Oliver's Medical Update

I wanted to give a little update on Oliver since we have met with most of his doctors recently.  In May we met with the surgeons, Dr. Siddiqi and Dr. Kestle for a follow up.  They said Oliver seems to be doing well.  Dr. Kestle didn't think we needed to do an MRI of his brain or see a neurologist because he has been developing so normal.  Dr. Siddiqi changed his next surgery to when he is 2 years old to repair his nose.  I think we will also do the front of his forehead then.  They will blow up a balloon under his skin to stretch it and then pull up his hairline.  I think they will also shave some of his forehead at that time to make it more symmetrical.  Dr. Siddiqi also referred us to the Hanger Clinic to get a shaping helmet for Oliver's forehead.  They usually use helmets to shape the back of flat heads, so we weren't sure how well it would work for Oliver's case.  The back of your skull is a lot thinner than the front of your skull, so it is not as easy to mold, and Oliver is also a little older than most babies when they get a helmet, which is around 5 months old.  The helmet doesn't work like braces or hurt the baby, it just puts gentle persistent pressure on areas and allows space in other areas for the growth to go into, in Oliver's case the right side of his forehead.  So they want to have the right side of his forehead come out a little bit more and then in surgery shave down some of the left side to make it more symmetrical. Hopefully that makes sense.  I wrote this post a while ago, so I'm updating it now to say that we are done with the helmet.  Oliver wore it for 3 months and there wasn't really any difference made.  I hated that he sweated all the time and his head stunk, but the protection from his climbing and falls was nice.  When I told Hattie Oliver was done with the helmet, Hattie insisted that he wear it or else he would get hurt.

We met with the opthamologist in June, and Dr. Young said that she can tell he is favoring his strong eye more and increased his eye patching from 1 hour a day to 2 hours.  We will still wait on glasses because she wants him a little older because his prescription keeps changing, and we didn't know how long he would be in the helmet.  We also discussed his dermoid cyst in his left eye, and she said we would probably remove it when he is 5 or 6 years old.  We took a week off from patching to get Oliver used to his helmet and now we can't get him to wear his patch.  He keeps tearing it off as soon as I turn my back.  They said to keep putting it back on, but it's like a bandaid so it won't stick and I have to keep putting new ones on.

We also met with the geneticist in June.  The genetic testing we did for frontonasal dysplasia came back negative.  That was really the closest match with his symptoms.  She showed me some pictures of some other syndromes and abnormalities, but she said he didn't look like the pictures and have the same symptoms, so we ruled those out.  We decided to do two more tests that are chromosomal tests, but are low yielding results when you do not have any developmental delays.  They will do a microarray test that looks for duplications or deletions in chromosomes.  If that comes back normal, than we will do exome sequencing which is fairly new in genetic testing and tests thousands of genes.  Those are both likely to come back normal, and if they do then I guess we really won't have any answers as to why Oliver was born with some of his malformations.  I just got a letter from our insurance saying they won't approve the microarray test because he does not have any developmental delays, but Dr. Dugan is working on appealing it, so we will wait to hear from her.

We just met with an ENT, Dr. Meyers, and an audiologist for the first time today.  Oliver has had a goopy eye since birth, and the Opthamologist tried clearing his tear duct during his surgery in January, but she said it seemed to be clogged when it drained down into his nose.  The ENT said we could do a procedure where they drill out some of the bone to open it up, or we could wait and see if it gets better.  We are going to wait because it has improved since birth already.  It used to be sealed shut every time he woke up, but now it is just a little goopy on his eyelashes.  Dr. Meyers said he was also going to speak to Dr. Young (the opthamologist) and see what she thinks.  Oliver also breaths loudly because he has a deviated septum.  I thought they would fix the deviated septum when they reconstruct his nose, but Dr. Meyers said they wouldn't fix it until he is a teenager because doing it earlier would affect the growth of his nose.  We also discussed Oliver's ears.  He has had fluid in them at both his 6 and 9 month check ups with our pediatrician, but he has had colds at both appointments.  Oliver has had back to back colds for the past couple of months, which has concerned me.  It seemed more understandable in the winter when the other kids had colds too, but now it is summer and he continues to have colds the poor baby.  He had fluid in his ears at the appointment, but it looked like there was pus also, which made him think he had an ear infection, but Oliver hasn't had a fever, or hasn't been fussy more than normal or touching his ears at all.  He has had a runny nose though with green snot. Because he has a deviated septum it seems to be interfering with the drainage of his sinuses, so he continues to have chronic sinus infections.  We went across the hall and did a hearing test with the audiologist and his hearing is diminished, which is normal if there is fluid in your ears.  We are just trying to decide if the fluid has been sitting there for months and isn't draining or of the fluid is from the colds that he happens to have every time he gets checked.  He said it can take up to 3 months sometimes for the fluid to drain by itself after a cold.  At the appointment we decided to wait three months and come back and get a hearing test again to see if the fluid has drained and how his hearing is before we make any decisions about tubes.  We are going to be praying that he can get over his current cold and not pick up another one because it is so hard for him to stay well and we need to see if it's the cold causing the fluid in his ears.
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