A Different Boat

Lately I just can't get enough cuddling time with Wesley.  He's gotten more independent where sometimes he just wants to be put down to play rather than needing to be held all the time.  So when he is content to be held, I just can't soak up that time enough.  The best is when he's just woken up in the morning or from a nap.  He's so rested and happy but content to just be held.  My neck is sore from just looking down at him as I hold him.  I try to take pictures of him in my arms but it never captures him the way I see him.  I just can't imagine him being more perfect.  I find that a weird contradiction because I'm saddened by the fact that he won't get to be "normal" and I want nothing more than for him to be healed, but at the same time I feel he is so perfect.  I can't imagine him being any different than he is and I love him more than I know how (I know every parent says that :) ).  I keep waiting way past his bedtime to pu...

Wesley's growth has been a concern since he was about 1 week old.  Every baby looses some weight after birth but Wesley was barely back to his birth weight when he left the hospital at one month old.  When he was born, he was in the 28th percentile for weight but he Quickly started falling behind with everything he was going through.  We anxiously waited as the night nurses weighed him every day.  We'd cheer if he was gaining weight (even a few grams) but were discouraged if he lost weight.  One of the big requirements for him to go home was to regain his birth weight.  We started telling ourselves while he was in the hospital that his body was working so hard just to survive that it wasn't worried about growing or developing and that is why he was behind developmentally and weight-wise.  Well... since we left the hospital, Wesley's growth issues have not resolved.  A friend of ours very graciously let us borrow their infant scale so we can monit...

Well Wesley's feeding status has moved from nightmarish to just bad dream-ish. First of all our new insurance decided after several rounds of paperwork that Wesley's formula is indeed a medical necessity so they will cover it, YAY! Praise God. The longer we've had Wesley on just the formula the more his rash has gone away. It still is heart breaking to not be able to breast feed him since that was such an awesome bonding time, but I keep telling myself it is better for him in the end. I still have days though where I long for that intimate time with him and wish I could go back. Another good from today was he took 10 of his 20 ounces he is supposed to get a day through a bottle. This is huge for him since he was hardly taking anything through a bottle just a month ago. We still have a long way to go for him to be free from using his g-tube but this is finally some movement in the right direction. I'm still jealous of people whose babies take 5+ ounces at a time or ...

For one of my college classes we took the Myers-Briggs Personality Test.  I came out as an INFJ  which I found to be quite accurate.  It describes the weird mesh between being a "math person" and someone who spends a lot of time caring about people.  As I reread the description while writing this blog, I am encouraged by it's description of me as a parent. INFJ is a natural nurturer; patient, devoted and protective. They make loving parents and usually have strong bonds with their offspring. They have high expectations of their children, and push them to be the best that they can be. This can sometimes manifest itself in the INFJ being hard-nosed and stubborn. But generally, children of an INFJ get devoted and sincere parental guidance, combined with deep caring. I hope and pray that this is true of me.  I feel deeply bonded with Wesley and I hope my "high expectations" manifests in me getting Wesley as much help as possible to reach his full potential. ...

Yesterday evening I was finally able to get in touch with Wesley's neurologist to get some followup information from his last appointment.  Well, good news is she agrees that doing another MRI is a good idea.  Bad news is her reasoning.  The whole time with Wesley we've been chasing symptoms trying to find the root cause of his issues.  Originally they thought it was his blood, then a metabolic disease, then his liver, an infection, then my blood, and so on.  It's the chicken and the egg deal all over again, what is a cause and what's an effect.  Well the entire neurology team at Children's looked at his MRI together on their fancy huge screens and all agreed that his bleeding in his brain was a result of lack of oxygen and blood flow.  It seems counter-intuitive that lack of blood flow would cause bleeding but apparently that's how it works.  So, his stroke was a result of his heart not beating.  She also said that the damage to his brain l...

I've been so busy with our impromptu trip to GA that it's been a while since I've blogged.  I feel like there is so much to tell.  Wes in napping right now so hopefully I can get you all somewhat caught up. I still can't believe that it actually happened that we went to Georgia with only 2 days notice.  I truly see it as God ordained because I am not the type of person who just jumps on an airplane without planning extensively, let alone to do so with a baby for the first time.   I ended up packing a carry on suitcase on top of the stroller, car seat, and diaper bag that I already was carrying through security because I didn't want to check all of Wesley's medical supplies and risk them getting lost. Wednesday Julie took me and Wes to the Anchor Center and then to the airport.  She was able to get an escort pass and walk us all the way to our gate which relieved so much of my apprehension about flying alone with a baby (God really was taking care of...

So the trip happened thanks to a lot of very kind people. The medical supply company guy who offered to make a delivery to Bailey (even though they normally will only ship stuff to us) si we could have enough supplies and formula to last the trip. The pharmacist who have us the with insurance price on Wesley's medication even though our insurance wouldn't pay for it. Julie who not only agreed to take me to the airport last minute but sat through Wesley's therapy, drive around the entire DIA parking garage looking for a spot, and walked me all the way to my gate so I didn't have to go through security alone. Southwest airlines for letting me put Wesley in his car seat in an empty seat without paying extra so I didn't have to hold him in my lap the whole time. And to top it off the old navy vet who thanked me for Colby's service to our country and said he admires "my spunk" for carrying 2 suitcases, pack n play, stroller, carseat, and Wesley to th...

So I need to rant for a minute before I finish packing for our trip. What gives insurance companies the right to lie about coverage and not be held responsible.  Before everything with Wesley, my experience with insurance companies consisted of paying co-payments when I went for regular doctors appointments.  Since Wesley was born, we've had 3 different insurance companies.  Kaiser covered pretty much everything but both United and Tricare have been trouble.  First, United Healthcare pre-approved Wesley's medical supplies and when it came time for billing, they claimed it wasn't a "covered benefit."  So now we've received medical supplies (at extremely inflated prices) that we have to pay for because apparently insurance companies don't have to live up to their word.  Second, Tricare assured me that one of Wesley's prescriptions would be covered.  They said they could put in an "override" because of the way the medication has to be made in...

In an interesting turn of events, I will be flying with Wesley to Atlanta on Wednesday.  Colby has been at Ft. Benning, GA for the last 2 weeks doing some Army training.  He will be there until mid-July at the earliest.  For the entire time he is there he has no phones or internet so our only correspondence can be through snail mail.  However, he gets this coming weekend as his only weekend off.  I asked him before he left if he wanted me and Wes to come out to visit him and he told me no (because he thought it would make it harder to be away longer after that).  So this afternoon I get a bizarre text message from a number I don't recognize saying, "Mrs Bowser, I went to PRC with your husband.  He is still there and asked me to send you this message.  He will fly into Atlanta by noon on Thursday and rent a car.  He will return no earlier than Sunday evening. If feasible."   I was so confused by this because it didn't make sense for Colb...

So I got what I think is the final statement from the hospital outlining the charges for Wesley's stay (just him, not me).  Thankfully Kaiser is good insurance and everything only cost us $300.  Any guesses as to the total damage before insurance?  I'll give you some details to help with your guesses. 30 days in NICU 1 Surgery (nissen, g-tube, liver biopsy) 3 blood transfusions 2 EEGs 1 Echocardiogram 4 Ultrasounds 11 X-Rays 1 Barrium Contrast Study 1 MRI Consultations with at least 5 specialists Too many medications and blood draws/tests to count I have a small prize for the closest guess (I think this contest is a little bit of Colby's morbid humor coming out in me).  I'll give you until Tuesday morning to make your guesses (through comments on here please).  If I told you the total amount yesterday then you are obviously disqualified from guessing, sorry. Good luck guessing and "may the odds be ever in your favor."

Along with all the written reports about Wesley's imaging, we also got a DVD with all of the pictures.  Here is a view of his brain from his MRI on December 27th.  The black part on the right is blood inside his brain (from his stroke).  On the left you can see his eye (pretty crazy looking huh).   Besides seeing the obviously bleeding in his brain, the doctors were also concerned about a few smaller spots of bleeding and some other parts that just "didn't look right."   The neurologist told us that as the blood gets reabsorbed into his brain material over the course of several months, the brain material either scars and dies or heals.  They don't typically repeat MRIs for stroke patients because an updated image doesn't change any treatment or give an accurate prediction of their future capability.    The visual/scientific part of me really wants a new MRI so I can what progress he has made.  I want to know how much of his brain died...

Since we went to the Stroke clinic on Tuesday, I've been spending entirely too much time googling medical terminologies.  The problem is, all the medical records we get sound like they are written in code.  I consider myself a relatively educated person so the fact that I can't get through a single sentence of Wesley's page long MRI report without having to look up at least one word seems ridiculous.  So to understand the medical reports, I either need a doctor with me interpreting each word (where as most doctors just briefly summarize) or I end up googling to satisfy my need to understand exactly what is going on with my son.  There are 3 main directions for my latest batch of googling. 1: I got copies of all of Wesley's imaging (x-rays, ultrasounds, and MRI) that was done while he was in the NICU.  Several of the reports note an "enlarged heart."  I know that there are some things the doctors talked about that I don't remember but I thi...

While most things that Wes has struggled with are improving with time (heart rate, lung function, development, hearing, vision, etc.) feeding is the one thing that just keeps getting worse.  He started off in the NICU on IV TPN (total pediatric nutrition).  Once his lung function improved, they gradually started feeding him breast milk through a feeding tube and then through a bottle.  At first he surprised everyone with how well he was doing.  He was up to full feedings within a couple of days and was tolerating everything great.  He was doing great and we were starting to think we'd get to take him home soon. Then the vomiting started.  Now I know most babies spit-up some but this was shooting across the room projectile vomit.  They did abdominal ultrasounds and x-rays to look for an explanation but everything came back normal (great that he doesn't have a bad malformation but frustrating that there are no answers).  They put him b...

Wesley had an appointment today with the "Stroke Clinic" at Children's Hospital.  They do clinics for various issues kids have where parents get to meet with a team of doctors all at once instead of explaining the same things over and over to each doctor separately.  Today was with a Neurologist, Hematologist, Physical Therapist, Research Specialist, and a Social Worker.  They honestly didn't have anything much to say.  They glanced at his MRI images from December and looked at his developmental progress.  They were impressed with how much he has advanced since they saw him 2 months ago so that was encouraging.  They are doing some tests but gave the impression they didn't think the tests would reveal anything.  They drew 6 blood samples (14mls of blood out of a little tiny baby!!) to test for 5 different blood clotting disorders and 1 other disorder that causes holes to form in the brain (they think this one is a long shot but worth testing for)...