Rough days

I never imagined that it would be such struggle to feed our child. Isn't that what being a baby is all about - eating, growing and thriving? Another unexpected piece of our new reality...

The last few days have been pretty rough. Owen needs to take in 20 ounces of fortified formula or 24 ounces of regular formula a day to gain weight. Our days are completely "consumed" by these numbers. We keep a food journal. At any given time, we know how much food he's had, how many meals he's lost that day and how many more ounces we have to reach our goal, which always seems to be just out of reach.

We feed him every 2-3 hours, holding him still and upright for up to an hour after each feeding to try to keep things down. Feedings have become so stressful for all of us. Owen cries, oftentimes trying to avoid the bottle. He's learned that this, which should be a positive association, is actually what produces such discomfort for him. It is so distressing to watch. Then there is the sound. The choking, throaty sound which means that the food is about to come up. To a parent who is so desperately trying to get their baby to eat and keep food down, this sound elicits anxiety, frustration and disappointment.

This last week, the vomiting increased significantly. We averaged 12-16 ounces a day with 4-5 meals coming up (this equates to somewhere around 12-15 vomiting episodes). We weighed him on Wednesday - he had lost half an ounce in six days. We became desperate so took the advice of a few folks, including the naturopath, and tried goat milk fortified with flax oil, B vitamins, folic acid, vitamin E... We were told that it is the closest thing to human milk. He spent the next day vomiting almost everything. We spent Thursday evening rehydrating him with water and got him back on the original formula.

We've tried breast milk (when that was still available), hypoallergenic formula, easy to digest whey formulas, various regular formulas, goat milk... We may or may not try a soy based formula. Admittedly, we're pretty convinced that WHAT he's eating is not the problem.

Part of our challenge is coping with the acid reflux (GERD). This is a MAJOR hurdle for babies even by itself. The other challenge is that because of the insult to his nervous system, Owen's body behaves differently. He is hypertonic in the extremities (arms and legs are spastic and the muscles stiff) and hypotonic in his trunk (muscles are more relaxed and less able to move things through). The latter complicates the GI system - everything from keeping food down to moving it through and eliminating it, becomes more difficult.

We've known for some time now that Owen will face a unique set of challenges. We are as prepared as we can be at this point to come up with creative ways to deal with these. But our biggest hurdle right now, and the most critical one, is to get Owen nourishment. He needs calories not only to grow, but to try to heal from his experience. And so we will continue to find ways to "feed" him - in every sense of the word.

On being a mom

It was several days after Owen was born, when we were still at Tacoma General, that I realized that I was a mother. The ambulance, the seizures, the emergency transfer from Harrison Hospital to Tacoma General, the NICU, the tests... these were the unexpected fragments of my experience that I was attempting to process each hour and each day. And then I was walking down the hallway at TG one day and said to myself, "I am a mom!"

So, what has it been like, so far, to be a mom? There are the challenges, for sure. A friend told me a few weeks ago that the first thing she realized as a new parent was that she had to let go of all of the expectations that she had - of her child, of the experience of parenting, of the process. I feel like this piece of advice is especially true for us, but I'm comforted by the fact that it is a normal part of parenting any child. It is also challenging to so desperately want to help your child make sense of this crazy world, but finding that sometimes, all you can do is provide them with a sense of trust, confidence and unconditional love and then allow them to decipher their experience in their own way. But that is the beauty also, that we each possess our own mysteries, our own sense of what the world means to us and that is what makes each of us who we are. These are the building blocks of our "selves." This process happens time and time again, as each child is conceived and born, and the outcome is different every time.

Motherhood means so many things... I get to kiss the soles of Owen's feet several times a day. They smell heavenly - a little sweet, like warm bread, and totally of baby. They are so soft and his toes curl in each time as he senses my skin touching his. When he is sleeping, I am provided with a quiet opportunity to carefully examine his features, reminded that he is a part of both Kelsey and I and a culmination of our love for each other. He has Kelsey's eyes, my chin... . When he is upset, my voice and touch provide a safe haven for him. They comfort him and remind both of us of the connection that we've shared for almost a year now.

I've realized that becoming a mother does not happen in a moment's time. It is a journey. Each of us will learn, change, grow. That I am able to have this experience is such a gift.

To see or not to see...

Owen is visually impaired, which differs pretty significantly from blindness. All of the mechanics of his visual system work perfectly - his pupils, retina, optic nerve. Cortical visual impairment "occurs when there is damage or disturbance to the posterior visual pathways and/or the occipital lobes of the brain". It can be permanent or temporary and it is possible for vision to improve, especially in infants. The amount of potential repair will vary depending on the location, timing and extent of the damage as well as on interventions to stimulate the visual system. CVI is a condition that indicates that the brain does not consistently understand or interpret what the eyes see.

We have noticed that at times it seems as though his visual system is off-line and then at other times... we KNOW Owen is looking at us and trying to process the visual information. He will stare at our face or look around at our features and then rapidly close his eyes as if it is too much to process. When I mentioned this to the nurse practitioner who visited on Wednesday from Holly Ridge, she confirmed that yes, this is the way it is with children with CVI. Vision is sometimes "on" and sometimes "off" and can vary minute by minute and day by day. It takes a lot of focus and energy for Owen to try to process visual input and so closing his eyes in this manner is a sign he is taking a break from this intensity. An interesting note from the literature... "The vision of children with CVI has been described much like looking through a piece of Swiss cheese." Hard to imagine for those of us with no visual impairments but also easy to understand why this would be so confusing, especially for a baby who is trying to make sense of and organize his world.

Other characteristics of CVI:

• Children may exhibit poor depth perception, influencing their ability to reach for a target.
• Vision may be better when either the visual target or the child is moving.
• One third of children with CVI are photophobic, others are compulsive light gazers.
• Color vision is generally preserved in children with CVI (color perception is represented bilaterally in the brain, and is less susceptible to complete elimination).

Babies with CVI are easily over stimulated (visually) and need to be in a quiet setting in order to try to process visual information. There is a lot of great information out there on encouraging development of vision in children with CVI. We've also received information from Patty (the NP) at Holly Ridge and will no doubt be getting more once we are put in touch with the pediatric ophthamologist. One of our biggest challenges right now is getting Owen's pain and fussiness under control so that he does not spend all of his awake time attempting to deal with these issues and rather spends that time on development. He did have an excellent period of quiet alert time yesterday during which we presented him with several items to look at and touch (using the tactile sense to promote vision is one of the most effective ways to encourage visual development). We know he saw these items and were so encouraged by his attentiveness and willingness to visually explore the objects without looking away or tuning out. Will Owen see someday to such an extent that it will help him make better sense of his world? That is the question. We believe he will...

Love from Indianola,

S/K/O

Relief and Disappointment

The hallways of Childrens Hospital are becoming very familiar. It's good that they are decorated with trains, giraffes, fish and painted with bright, cheerful colors. It makes our repeated visits there seem somehow more positive, as if these creatures are the protectors of the all of the children who receive care there and the many colors meant to remind us of the broad spectrum of possibilities.

Grandma Janet's day with Owen was once again interrupted by another visit to the pediatrician, where Grandma Leslie met us so that we three could all advocate for Owen together. We were quite a motherly force. This was followed by a rush to make the 2:05 ferry, so that Owen could have the two GI tests done at Childrens Hospital in Seattle that would rule out pyloric stenosis and malrotation of the intestine. Grandma Leslie, with her extensive background in physiology and nursing, accompanied us as our translator, advocate, and nurturer.

The barium swallow ("upper GI") went as good as could be expected with a nine week old who hates being on his back while also being strapped down (with his arms extended above his head) and forced to eat. Can you blame him? The ultrasound that looked for pyloric stenosis was pretty easy and quick. The results of both tests were negative except for a diagnosis of decreased motility in the esophagus which the radiologist indicated is connected to the GERD (reflux).

Relief... Owen's weigh in at the pediatrician's revealed that he has gained 5.5 ounces in six days! That is right on target for normal weight gain at this age (about an ounce a day). He's been throwing up so much and eating less this past week - we thought for sure he would have lost weight. The fortified formula is obviously working. We were also very relieved that the tests at Childrens came back negative as each would have meant some form of surgery and further invasion of Owen's body.

Disappointment... The results of the tests leave us with two less things that we can point to and say, "THAT is the problem!" We are back to the initial thoughts of the discomfort stemming from GERD and the mind-body connection, i.e. Owen, given his history, being hypersensitive to pain and the goings-on in his body.

We've decided to take Owen to a naturopath, as a supplement to all of the other care he is receiving. Kelsey was given a great recommendation from a friend to see Ruth Urand in Poulsbo. We'll be talking to her about possible food allergies and other ways that we might me able to help Owen from this alternative perspective.

Off to shower and get ready for our 9 am appointment with the occupational therapist and physical therapist from Holly Ridge who are coming here to evaluate Owen for the early childhood development program. The nurse practitioner was here on Wednesday to do her assessment... We'll be meeting with all of them next week to discuss their recommendations for Owen. These are the things that feel good - knowing that there are tangible ways that we can try to help him.

Toast, Meep and OK...

As I type this, I am attempting to eat my partially burnt toast that is now cold and soggy. Nourishment has taken on a much different meaning these past two months. And as I type this, Owen sleeps soundly, snuggled up against Meep, the second generation creature, hand-crafted with love by Aunt Mary, that also comforted his papa when he was a child. The first generation Meep was loved to pieces - lietrally. Owen is such a physical baby - he craves contact and sleeps best when he knows that he's being cuddled. He loves to sleep with Meep.

We decided to launch the OK blog as we've come to understand that our journey with Owen will be a very unique one. We are so fortunate to have so many people who care about him and who ask for updates. We have so many emails that we've not yet replied to, phone calls we've not returned, and it can be difficult some days to find the time or emotional resources to continue to reiterate our story and our present circumstances. For those of you not familiar with blogs, you can subscribe to receive updates (at the bottom of the page) and can post your comments (immediately below) to share any thoughts you have. We'd love to hear from you.

We were back in the hospital four weeks ago, in late August - at Children's Hospital in Seattle. We went in with various concerns, including feeding problems (Owen was/is not gaining much weight), acid reflux and a suspicion that Owen could not see. We were able to get some of the feeding issues taken care of, get a confirmation that Owen is indeed visually impaired and that his EEG is still abnormal. The pediatric neurologist informed us that Owen has moderate neurological damage (moderate hypoxic-ischemic encephalopathy or HIE) - the cause of which will probably never be known.

In the past nine and a half weeks, we have had such incredible support from family, friends and community. We are so very grateful. Family continues to "feed" us in so many ways... Grandma Janet going to part time at work to help out each week (to get her "Owen fix"), Grandma Leslie and Grandpa Herb helping on Tuesdays to care for Owen (and do yard work, clean house, fold laundry, etc. etc), and Grandpa Mac and Nai Nai flying up regularly to lovingly hold Owen and fix gourmet meals. Aunt Laura flew out from DC in early September to spoil and love Owen. Uncle Mike has done an incredible job keeping things running smoothly at Grounds for Change. Speaking of GFC, the staff have been amazing - Greg, Mike W, Mike C and Andrea. Our little business could not have managed this without them. Our friends in Indianola and Seattle have been incredible as well. We've had meals and meals and meals (thank you Kelly and Kathryn for organizing), visits at the hospital and at home and so many hugs. We have friends and family advocating for Owen from afar (Melissa) and at home (Cousin Jen, Grandma Leslie). We've reached out and made connections in other ways, such as through the "special needs" forum at mothering.com. Through this, we have connected with families who have children with similar issues and histories and with this additional information, have been able to explore more specific treatments and therapies.

We will be going back in to Children's Hospital in the next few days to look into issues relating to GI problems that Owen is experiencing. He is in a great deal of distress and conintues to gain little, if any, weight. He begins the 0-3 early childhood development program this week, based out of Bremerton (30 miles way). They will evaluate Owen's needs and assemble a team of specialists (physical therapists, occupational therapists, nutritionists, developmentalists, etc) who will provide us with specialized tools to help Owen. At home, he is being given cranial-sacral therapy from a wonderful, compassionate woman, Mara Lindbergh, who lives and works here in Indianola. We massage him each day, hold him, play music for him (thank you, Jim Nason) and love, love, love him.

I hear the little bean calling now...

S/K/O

The OK Blog

Mom and Dad thought that it would be nice for everyone that cares so much about what is going on with me to have a singular and regularly updated place to go for the latest. Dad set up my blog (I think that he has always wanted to have a reason to say "blogosphere") but Mom is a much better communicator, so you know who will be driving this thing. I can feel the Big Love from all of you pouring into me every day to make me feel better.

XO, Owen