Seattle, days 2-4

Sunday: Trevor and I slept in the window bed that is in Oakley's room. We met all the docs again the next day, and they asked a million questions that we didn't know all the answers to (we thought the answers were in the chart...could they not look there before asking???). We still had Mona and Bill here, so we escaped for a bit to shower, and pick up some groceries for snacks.
Mona and Bill left, after getting us coffees and saying goodbye to Oakley, and we started our permanent residency in Train zone, floor 3. We're supposed to have supervision for Oakley 24/7...which means little to no alone time for Trevor and I. We have to put ourselves on a list for volunteers to sit with him when we have errands to run when neither of us can be there, and neither of us are familiar enough with the area yet to feel comfortable driving very far alone.
Oakley's picc line (the IV that runs up his left leg to his torso, where his medications and fluids go in) looks pretty ratty, we've been babying it so that it lasts. I noticed his leg is purple, and thought I had put his diaper or outfit too tight. I loosened the diaper and changed his outfit just in case.
A few hours later, it's still purple, and his left leg is colder than his right leg. Certain it's not my fault now, I let the nurse know. The nurse looks at it, and calls in the IV team to look at it...they call for an ultrasound. Ultrasound doesn't find anything, but can't look at his whole leg, because of the dressing at the insertion point. Oakley's scheduled for a central line to be put in on Tuesday, so they think he can leave his PICC in until then, and just keep an eye on it.
Monday: scheduled for an ultrasound of his kidneys and blood vessels near his heart for Hickman line placement and because of his high blood pressure. Also on the docket: EKG, echocardiogram, some labs, and his bactrum (which is a prophylactic to avoid some type of pneumonia called PCP, and means barf-o-rama), and some labs. We get him to pee in a cup...twice. The nurses are impressed that they don't have to tape a bag to his junk. They draw some blood from him, and the echo gets done. EKG is rescheduled for tomorrow afternoon, but the echo reveals that his heart muscle wall is larger than it's supposed to be.
Cardiology will be consulted tomorrow. We try giving him his zenpep (pancreatic enzyme he has to take every time he eats) without opening the capsule; it works great the first time, he chokes the second time, the third time the capsule dissolves in his mouth and he ends up swallowing the beads anyway.
His ultrasound reveals that he has a blood clot in his left subclavian vein, so they'll go for the right. They want to start him on blood thinners, but not until after his surgery. They'll do Heparin in a continuous drip, and will probably switch to Lovenox when he's ready to go home.
His central line placement is scheduled for the morning, and they'll do a two for one deal and do a bone marrow aspiration while he's under. We talk to the bone marrow transplant team and to immunology, and they think he should have some extra weight before they do the transplant. They will have the coordinator see if that works for the donor, because they want a head start on graft vs host disease, so they will have a little ground that can be lost in case it starts up.
Tuesday: we have had Oakley NPO (not eating anything orally) since 2 am. He's hungry, tired and cranky. We go to the surgery floor and meet the team who will be putting in the central line and doing the aspiration.
They say they'll try for his right side, because of the clot on the left. Trevor and I are anticipating 2-3 hours of surgery, post-op, and recovery before we get to see him again. We take our dirty laundry to Ronald McDonald and take showers. We get a call from the cheif of surgery (who got called in because the original surgeon assigned to Oakley got called to an emergency surgery) who lets us know that both procedures went really well, and that Oakley would be heading up to his room in about 45 minutes.
They didn't remove the PICC yet, because his fluids are running through that, and they don't get new fluids until about 3 pm. They got the double lumen-which means he has two tubes running in to the vein, so he can have blood drawn at the same time as getting meds, or have meds running at the same time, without having them mix before entering his blood stream. They went in through his jugular, threaded the line in, and have it exiting his body just below his pectoral muscle.


Oakley in the tiniest hospital gown they have!



Fresh from surgery, covered in Betadine

 Check out my new line, Mom!

A nephrologist comes in and tells us they want to look at Oakley, to see why his blood pressure is so high. They do a doppler test on his kidneys, and also let us know they will be evaluating his medications for possible culprits. When she comes in, she has the whole team with her, and they say they would like to start him on a medication to lower his blood pressure, as well as do a radiation test on his kidneys to get a better idea of what exactly is going on.

The nurse comes in later and tells us the Doc on now (the hospitalist) wants to leave in Oakley's PICC because the Heparin isn't compatible with IVIG (intravenous immunoglobulin) which he gets once a month or with the fluids running through the other lumen (line). Trevor and I throw a fit, saying they can just put in an IV the one day a month he needs IVIG, but we don't want to leave a possibly infected line in our son. They remove the PICC.

Oakley is hurting from the surgery, but is getting morphine, which makes him as high as a kite and he's eating better than he has since we got here. He got a rash, but we don't know if it's from the dressing on his central line, or if it's from the chlorohexadine scrub down he got post-op. None of the medical staff seems to be concerned, or even interested, in the rash though.

Trevor and I miss Boise. The food isn't very good here, and we don't get free meals like we did at Saint Luke's. The staff is good, but not as amazing as the NICU staff we're used to. Also, nobody here has even heard of fingersteaks, and they are apparently not available in Seattle. We also feel guilty for even getting housing at Ronald McDonald, since we can apparently shower here at the hospital, and there are laundry facilities here. We sleep at the hospital, and we even have one of the biggest rooms at Seattle Children's (we even have a sunroom to ourselves).

Thanks for your prayers, positive thoughts, and patience (since we're pretty bad at keeping everybody up to date).

Love,

The Wallaces

Sorry for the Delay; but we're finally in Seattle!

Ok, sorry for it taking so long to post an update for you all. We finally made it to Seattle, after a pretty hectic week! We were initially supposed to come here on Wednesday, the 22nd. We got a call on Monday afternoon letting us know that the PICU (pediatric intensive care unit) at Seattle Children's was full, so we would be delayed until Friday (They wanted to put Oakley in PICU because he has an insulin drip, and isn't necessarily stable on his drip-so he would have closer monitoring there). Trevor hadn't left yet (he was going to leave Tuesday evening, after his mom got off work, so it was ok-we even got to spend our anniversary together. Trevor, Mona, and Bill wanted to be there when Oakley and I arrived, so they convoyed up on Thursday, and Trevor dropped me off at the hospital with my overnight bag that afternoon. Oakley and I were supposed to head up on Friday morning at 9:30 to the airstrip and fly on a fixed wing Cesna to Seattle, courtesy of Air Saint Luke's. Friday morning at about 4:30, we got a call saying that they didn't have room for Oakley, and that they didn't know when he could get into a bed there. The Neonatologist and nurses at Saint Luke's were pissed-they had called the day before at 3, and there had been a bed, so the Doc asked the bearer of bad news why they didn't just have us fly up then. After several phone calls and angry conversations, Dr. Crichton got ahold of one of Oakley's Docs in Seattle and they decided they would just place him on the Hematology/Oncology floor, and he told her that he would lay in Oakley's crib if he had to, in order to ensure there would be a room for us on Saturday morning.
So we finally got to leave Saturday morning. It was the first time Oakley had ever been off the 2nd floor of Saint Luke's in his 4 months of life. He was looking all around and especially interested in the different light fixtures in the elevator on the way down to the ambulance. His first breath of outside air was super smoky-it tasted like campfire because of the crappy air quality being caused by the fires surrounding the area. He slept the whole way to the tarmack, and when we moved him from the ambulance to the little airplane, he got sun in his eyes for the first time...he didn't like it. We covered his face with a quilt that was given to us by the NICU, and loaded him into the plane. He was just on a little board, so the EMT transport staff had more room in the cabin of the plane than they were used to. I got to sit up front, next to the pilot and view us rising out of the smoke, and got to see Mt. Adams, Mt. Rainier, and Mt. Hood as we got closer to Seattle. It was awesome. Oakley slept the entire flight, and then on the ambulance ride from the airport to Seattle Children's. Once we got to the hospital, he woke up, and was again intrigued by the lights. We wheeled him down to the 3rd floor, and were ambushed by doctors, nurses, nurse practitioners, and mauled with loves from Trevor, Mona, and Bill. He was quite overwhelmed and cried for most of that. He hid his face in my chest and I fed him, and he calmed down a little bit.
Once things were calmer, we looked around his room, and the accomodations are amazing. We really wanted him to have a window, as he was in an interior room in Boise because of his immunosuppression induced isolation. Here, he has a window (which is above our bed/bench for Trevor and I), he has a balcony room that is all windows except the ceiling and beam, and he has a view out of both! He has a tree and can see an outdoor play area, so Trevor and I were pretty excited for him. Oakley is still a little vampire though. When we walked him into the sunshine in the balcony area, he may as well have hissed and burst into flames.
We have a lot more backstory to fill in, as well as a mushy post about how much we miss Saint Luke's and all of our family and friends, and how cool everyone at the NICU was/is as well as a giant thank you to everyone! So stay tuned, we'll get to it eventually...

My little papoose, as he was getting strapped to his board

Oakley and I, right after he got to leave his room!

Owyhee Mountains, just above the smokeline

Feeding challenges

So, one of the difficulties Oakley's disease causes is malabsorption-his digestive system just doesn't pull all the nutrients, calories, or water from his food as it goes through his body. He was on TPN (which is IV nutrition, it stands for "Total Parental Nutrition") for the first few days of



First feed!



his life, and didn't get to nurse from me at all-I hadn't even been allowed to hold him yet. The doctors finally gave the go ahead for him to try to eat on April 22nd, and his nurse, Miranda, called our room on the NICU floor excitedly to let us know we could now not only hold him, but try to give him a bottle of my expressed colostrum (the pre-milk that comes in for a few days before the



first time he got to eat, I was so happy to hold him!



 real stuff comes in. it's super nutrient packed and helps the body pass the meconium-black tarry crap-in the baby's system)! Trevor and I were so excited, we took the fastest showers we'd ever taken and threw on clothes to go down to his room and hold our son for the first time. He had been sucking on a pacifier for a couple of days, so he had the mechanics pretty figured out. I sat in the rocking chair in his room as Miranda had me put a pillow on my lap and then brought his teeny tiny body to my arms. The bottle was almost bigger than he was, but he was so excited to eat for the first time. He sucked that bottle loudly down, and Trevor and I laughed. "He really is our kid, see, he wants to be a fat kid so bad, he's a fat kid at heart!" He didn't have the big, chubby cheeks that babies are born with that helps squish their tongues into a taco to eat properly, so when he ate, he slurped and it sucked his cheeks in like a fish face.



The bottle is almost as big as his head!



I was finally able to do something for my son, he was getting the fruits of my long hours of pumping, and I finally felt a little bit of self-worth as a mother. From there on, producing as much milk as possible was my mantra. I drank Mother's Milk tea to improve my supply, and I started pumping every 2 hours or so to make my body a living, breathing, one-woman dairy. I quickly became a super producer and had several bins in the freezer of the NICU overflowing with baggies of my milk and I was able to attempt breastfeeding...but only twice. Those attempts did not go well, at all. The first time, I was  ready, surrounded by pillows, topless and very full of milk. Oakley was very hungry and irritated about the IV that had just been placed and had delayed his feed. They handed him to me while he was crying and hungry, and my body started to let down. I soaked him, the pillows, and myself thoroughly, but he was unable to latch on due to his lack of suction, because he didn't have the buccal pads (chubby cheeks) that help curl his tongue. The nurse was trying to help, but because I was so full, she thought I was engorged and that there was no way we could squish my boob into his mouth. Oakley was crying, I was crying, and everything was soaked in breastmilk. It was a traumatic experience. The next feed, I pumped beforehand so my supply wouldn't be literally overflowing. He still wouldn't latch, and lactation came in to help. We used a nipple shield to help aid, and that helped, but he was upset yet again right before the feed, because he had just had to have blood drawn for another test,



Dad, holding Oakley for the first time.



 and had been given a subcutaneous insulin shot. I was dismayed, because it seemed like right before all of his feeds, there would be something bad or painful that would happen, and I didn't want him to associate contact with my skin to pain or trauma. The doctors also decided that breastfeeding was no longer going to be an option, because they still had been unable to get his bloodsugars in check, and they wanted to be sure of how much Oakley was getting, and his stool was just as prevalent as my milk supply.  Oakley had such violent diarrhea that the GI specialists thought he wasn't able to digest my milk. They thought his body was incapable of breaking it down into a simple enough form to use in his body, so his body was "dumping." Dumping is when your body not only doesn't absorb nutrients from what you're consuming, but also is releasing it's own stores trying to to digest it. So basically, he was putting out more than we were putting in. He didn't have any excess to start with, so it was very vital that we not let him further his emaciation.

They put him on an elemental formula to see if it could help him and give him nutrients. This devastated me. The little amount of help I was able to provide my child was gone. It was hurting him worse than it was helping. Now, when I got up in the night to pump, it would put me into a deeper and deeper depression. Not only was I unable to help my kid, I was hurting him. I was not able to provide anything for my son that wasn't already being provided by trained nursing staff. He didn't need me. I was useless. Everytime I pumped, it reminded me that not only did I not have my son with me at home, but he wasn't even eating what I pumped. it seemed pointless, but I had already defined myself as this milkmaid...the lactation staff in the NICU is awesome. They deal with the entire spectrum of moms in the NICU. They have women who don't produce enough, or any, milk and then when they try to build a supply, they're too stressed because of having no milk, a cyclical stress-no/low milk supply-stress ordeal. They help mothers who are going to lose their baby, and provide them with a coping mechanism of being able to express their milk to donate for other babies in their lost child's name. They deal with everything from inverted nipples to rock-hard engorged boobs and help them to bond with their babies in a way that noone else can.



I'm smiling behind the mask, this was the first time I got to hold my son



They advocate for moms who want to breastfeed, and they were my battalion when I needed them. Oakley's diarrhea and dumping didn't get better on the elemental formula. He went from being a kid who would eat as if he didn't know if he would ever be able to eat again to not eating at all one day. He would cry when you put the bottle in his mouth. We tried different nipples, holding him different ways, we were at a loss. So the doctors had a feeding tube put in, and he was fed that way. So now, not only was he not getting my milk, but he had lost the joy of eating. They would try and get him to eat the bottle, and he would choke and sputter and act like he was drowning, then they'd put the remainder down his tube. He rebounded and started doing well with his bottle feeds, but we delayed removing the feeding tube because we had drawn a mustache on the tape strip that held it to his face, and it was too funny to remove.

The diarrhea was still so frequent though, that the doctors decided to hold his feeds for a few days to give his gut the chance to regrow or regenerate, so that he might be able to better absorb. Oakley was not happy about that. He was 4 lbs 8.3 oz of pure fury. His tummy was growling and he just wanted to eat, even though he was getting lots of nutrients through his IV. They decided to let him satiate the oral need after 3 days of NPO (no products orally) with 15 ml of pedialyte for his feeds. They wanted to  slowly introduce food so he wouldn't shock his system and stress his gut. The next day they allowed 5ml of milk to be added. They wanted to do 5 ml of the elemental formula, but I was adamant that they use my breast milk-it would give him my immunities and help build his-and with the help of my battalion of lactation consultants backing me up, we won that battle.

A blur of a week

The next few days of Oakley's life were hectic, dramatic, and pretty near killed Trevor and I. One morning when we went to see our little guy, we got a lesson in Biology on neutropenia. Neutrophils are apparently white blood cells that fight off infection. We have 5 different kinds of white blood cells, and 3 of them are infection fighters. As it was taught to me, there are Marine-type cells that are big, tough, and do most of the fighting (Neutrophils), there are Army Reserve-type cells that get called in as reinforcements if it's something the Marines can't handle on their own (Eosinophils), and there are Boy Scout-type cells, that when all Hell is breaking loose, get called in to help with the fight (Basophils). That morning all of Oakley's Marines had been killed off, as had all of his Reserves and most of his Scouts. She told me she had never seen any baby with the numbers Oakley was displaying. He had no immune system at all, getting a cold could kill him.
His blood sugars were still puzzling everyone as well. Babies aren't born with diabetics, in fact, it is super rare for babies to show symptoms of diabetes before they're 6 months old. Despite all of that, Oakley was having high blood sugar after high blood sugar. He kept receiving doses of insulin to try to keep him stable.
All this meant was specialists. That first weekend we met with GastroInterologists, Hematologists, Genetecists, and of course the awesome Neonatalogists and Nurses that Saint Luke's had on staff. They had to do a bone marrow aspiration to see if his body couldn't make white blood cells, or if it was, but something else was killing them off before they matured. A bone marrow aspiration is a horrible thing and I hope that none of you ever has to have one done. They gave Oakley morphine for the procedure, then they took a giant needle and jammed it into his pelvis via his buttock area and sucked out the little blood and marrow that was there. They also needed a piece of the marrow itself (a spongy kind of chunk inside the bone). They didn't get enough to run all the tests that the had wanted, but they got some. They also just about drained the kid of all his blood for a bunch of other tests that they wanted to run. He had a blood transfusion afterward to replace some of what they took. At the end of getting all this stuff, they were able to take out his UAC and UVC-well, actually the UVC started to come out and was no longer viable, so they removed that earlier).

I was so happy to see his little tummy without those tubes, it felt like progress toward an end. This picture was taken after the tubes were gone, it was April 24th, Oakley was 5 days old.

Day One-Mom's side

After our first time meeting Oakley, I was determined to do anything in my power to help him. We went upstairs to the Mother/Baby floor. The nurses were nice, but everyone was asking about the baby. They wanted to know if we knew if anything was wrong ahead of time, if he was our first baby, etc. I knew they meant well, but every time we heard the questions, it stung a little more. They got me a pump to express my milk for when Oakley would be able to eat, and I pumped and pumped and pumped some more. It was the only thing I could do for my baby. I couldn't cuddle him, couldn't soothe him, nothing. I had a very hard time while I was pumping, because I knew you were supposed to think about your baby while you are pumping, but all I could think of was how close to death he looked. We ate and got some sleep, and the nurses told me they would wake me every 3-4 hours to pump, as if I had a baby waking me to eat. I got woken up once. I apparently told the nurse not to wake me again, because I was too tired. What did wake me, however, was the healthy baby that was in the room next to mine. I woke up, and just bawled. There should be a law against having a healthy baby in the room next to someone whose baby might not make it out of the hospital. I couldn't stop crying, and one of my nurses came to check on me. I told her the whole story, and she told me she was a NICU nurse that was actually floating on the Mother/Baby floor. She told me she would get me hooked up with the right people in the NICU, and she even called down to my baby's room nurse to check on Oakley for me. She found out that he had been extubated (no more breathing tube down his throat!) and told me she thought I should go on down there and take another look at him and spend some time with him.
I'm so glad that I did. Seeing him without the breathing tube was like seeing a whole different baby. His chest didn't seem to move as eradically as when he was on the tube, and the nasal canula wasn't intimidating. I had to wear an isolation gown and gloves and a mask that time, he was in isolation. He was being watched for lots of different diseases and infections, and they didn't want to chance him getting any other babies sick. He also had no immune system of his own to speak of, so it was kind of a two for one kind of kickback.
I sat and stared at him for a long time. He even opened his eyes a little bit, and I could see there was a life in this listless body. I talked to him so that he could hear my voice and maybe recognize it from when he heard me from the womb. I don't know if it made him feel better, but I felt a weight lift off my heart. I realized this kid was fighting, and I wanted to fight alongside him to keep him alive. I wanted to be his accomplice in kicking whatever was holding him down. I finally had hope.
Trevor was supposed to start training for his new part-time job the next day, and we slept pretty well. I felt guilty for getting so much sleep as a new mom, since everyone was always warning me about how little sleep I'd have once the little one arrived. I still feel guilty that I can sleep 8 or 10 or even 12 hours if I want to, because someone who is trained to take care of Oakley is up with him so that I don't have to be.
That next morning the calls started, and the text messages, and the facebook messages, and the emails. Everyone and their dog wanted to know what was going on, if we had any updates, telling us they were there for us, wanting to come see the baby...it was too much almost instantly. We stopped answering our phones, and started avoiding the world. Everytime I answered the phone, I immediately regretted it, because they would sting me with all of their questions that hurt to answer. Trevor's Grandmother came to my room. I got up and told her we could go see the baby if she wanted to. She was surprised as we started heading toward the elevators instead of the nursery. She asked why the baby wasn't upstairs with me. I was internally furious at Trevor for sticking me with explaining this to his Grandma, while he was at his training. I ended up causing her to cry with all the saddening information about her Great-Grandchild. She composed herself as we scrubbed in to the NICU, and was a trooper when putting all the isolation garb on. When she saw him, I could see the terror in her eyes. I knew she was going through exactly what I had experienced only hours before. She thought he looked like he was pretty much already dead. I didn't blame her, he looked like a baby eagle at that point. He was scrawny and awkward, and had saggy skin covering his emaciated body. His hair was a fuzzy, nondescript color, and his skin was grey.
Trevor's Grandmother didn't spend a long amount of time there in the NICU that day, but I stayed for the next 4 hours. I had my hand in the porthole, with my fingers tracing his fingers and getting him to grasp mine. I was falling in love with this little bird of a person, and I wanted to assure him that I was there for him.

A quick look back-from Mom

You know how most moms get to look back on their labor and delivery with emotions about all the things that went well or that didn't? Well, even though I had a doozy of a labor and delivery, most of those memories are kind of muddied with things that happened shortly thereafter. When Oakley was born, his cord was too short for him to be placed on my stomach for me to see/touch him. He didn't breath right away, but he arched his back and wailed his arms like he was drowning. The NICU team was called in immediately, and they ended up doing chest compressions and intubating him. All of this happened within 5 minutes of birth.
They carted him away to put in lines through his umbilical cord stump, and let me get a quick glance at him before they left. I didn't know what to think-he certainly wasn't the big fat baby that Trevor and I had expected. The placenta had been delivered and my OB, Dr. Archibald, was showing me all of the calcifications or infarctions that it had. He thought this might explain why Oakley was so tiny (4lbs4oz and 18 3/4 inches long). Trevor followed the NICU team and watched them work on Oakley for a bit, then left because they needed to do his lines in a sterile environment and Trevor needed a well deserved break.
I then had all of the excited family members coming into the room to congratulate me (they were all pretty disappointed and scared. They were so excited to meet their Grandson, nephew, whatever relation; and were given the awkward task of congratulating and empty-armed new mom). At this point, I was filled with a lot of weird emotions. I was so ecstatic to not be pregnant anymore-the biggest relief was delivering that placenta, which felt like removing a poisoned cloak- and yet I felt this disappointment for not being able to bond with my baby at all. I hadn't been able to touch him yet, let alone get those first few moments of nursing him and comforting him from his traumatic entrance. I also felt guilt. Not being able to comfort him or nurse him immediately because he was undernourished, I was supposed to be taking good care of him while he was trying so desparately to grow, but I had failed miserably. How could something be going so terribly wrong inside of me, and yet I was oblivious?
There was a barrage of questions, "What pain medications did you take at the beginning of your pregnancy?" "Do you have any kind of family history that could be adding to this?" "Did you ever get sick while you were pregnant, the flu? A cold? High fever?" They drew my blood to check for bacteria, viral infection, disease. Then they ask me how I'm feeling. "Do you need something for the pain? Can I get you anything? Can I help you to the restroom?" Everybody's asking me all these questions, but can't explain what's wrong with my baby.
I eventually get to go upstairs to the recovery floor (without a baby) and get put in my room. It's got all this great stuff for the baby, the nurses try to be really nice, but everyone keeps asking questions. "Have you eaten anything? Can I get you some more ice water? How are you feeling? What's your pain at on a scale from 1-10? Do you plan on breastfeeding? Who have you chosen for the baby's pediatrician? Can I take your vitals? Did you know that he was going to be sick or was it a surprise? Upload pics of baby?" Pictures of the baby? Oh no! We didn't take any pictures of him in the delivery room. But do I really want to remember how he looked in the delivery room? Probably not, but now I don't have the option to show him someday how far he's come.

Once we were all checked in, we went down to see Oakley in the NICU. We scrubbed in, where we had to wash up to our elbows and scrub for 2 minutes (which while actively scrubbing, seems like forever) to go back and see our baby. He was in a corner room, in an elevated plexiglass bassinette with porthole doors on each side and a top cover that was able to be lifted off. He was so isolated, so small, and looked like a concentration camper. He was still intubated, and his little chest was inflating and deflating so fast, it looked like he was having a panic attack. I looked at the nurse and asked, "What's wrong with him?" She kind of hesitated, then started, "Well he had a little trouble breathing on his own and-" "No, not the breathing tube, I mean the rest of him. Why is he so small, what's wrong with him?" Then Dr. VanLooey came in and saved her from having to answer. He told us that they were running a ton of tests to find out was caused everything. He called it IUGR, which stands for Intra-Uteran Growth Retardation, and also said something about his blood sugar levels. He had wires hanging off of his body that told them his heart rate, how he was breathing, that oxygenated blood was getting to his extremeties. He had tubes coming out of his belly button that looked like a bow and trailed off to more tubes, those were his UAC and UVC (umbilical artery and vein catheters). Trevor and I went back to looking at our son. I scanned his facial features to see if the wine I'd had before finding out I was carrying him had given him fetal alcohol syndrome, no. I looked at his feet, they seemed massive in comparison to the rest of his tiny body. He was crossing his big toe over the second toe and it amazed me, I held one foot, and it was longer than my middle finger. he had an identity band tethered to his foot. His name was Baby Boy Samanatha Wallace-they didn't know his name yet! His hands were so cute, they had long graceful fingers-didn't get those from me-with perfect little fingernails. His head was so weird though. Like a hot air balloon, the conical, slender part was his chin, and then it just opened up to a big dome of a head. He had head sparing. So when he wasn't getting nutrients in utero, at least his head was getting what it needed. I started to cry. It was all so much to take in and try to process. I'm sure you're feeling like that too if you've gotten this far. So I will leave it off right there. I've added the earliest pictures I have of Oakley. They are from the morning after he was born, no tubes in his nose!

An itinerary

Hello loved ones! Trevor and I will be updating this blog as frequently as possible to give everyone a chance to learn (or not learn) all about the process that our family is going through. We will try to post pictures, videos, and probably more medical crud than you will want to see, but at least you won't be lacking for information on us.
I will post later on to give a "catch up" so that the proper backstory is filled in, but that will be quite an undertaking, and I don't know if I'm game to relive all those feelings right now.
So, here's what is on our plate today:
As of yesterday morning (I'm writing this at 4 AM, and don't get his weights til about 8) Oakley weighs 10 lbs 6.9 oz or 4731 grams. We are scheduled to go to Seattle via Saint Luke's charter plane on August 22nd and he will be in the care of Seattle Children's Hospital, Seattle Cancer Care Alliance, Fred Hutchison Cancer Research Facility, and UW School of Medicine. Trevor will drive our car up, and it sounds like he will be convoying up with his mom. I get to fly with Oakley since I'm the primary food source and way more comfortable on flights and small planes than Trevor is.
When we get to Seattle, Trevor and I hope to stay at one of the three Ronald McDonald houses that are within walking distance of the Children's Hospital.
The duration of our stay is very much dependant on how well things go with the transplant, but the doctors in Seattle said it could be anywhere from 3 months to a year, so we are throwing ourselves into this and neglecting all else. Trevor's mom will live at our home while we're gone, so we won't have to worry about the mortgage (Thank you Mona! That takes so much stress out of the equation.) and I am currently on a leave from work, that I hope to extend since I've got quite a few medical issues of my own going on. Trevor has delayed going back to school, we've had quite a lot of other things going on, it got swept under the rug for now.
The tentative schedule of events in Seattle is currently to have Oakley examined thoroughly so that they can find his normal and know what to expect from his body when undergoing chemo. They'll also put in a central line. It's a semi-permanent IV that will allow blood to be drawn and meds to be given with no pain. It is a surgery, but with all the stuff going on with him, it's definately worth it all.
After the initial couple of weeks of testing and healing from getting the line put in, he will start chemotherapy. One of the docs here said it would be 3 different meds, but I don't remember the names; but he won't have to have radiation. They want to start chemotherapy on September 8th.
The transplant date should be around September 13th, pending the donor is available on that date. He actually had 3 perfect matches! The first choice one is a 27 year old male from somewhere here in the States, and there are 2 in Europe that we have as back ups in case anything falls through with guy number 1! We are so overjoyed at our fortune in finding donors, we were dismayed when we found out neither of us would be able to donate, even if we were good matches, because of our blood clotting disorders and Trevor's diabetes.
Back to the itinerary, they then start monitoring Oakley to see how well his body accepts the donated cells. The biggest complication of transplants is graftversushost disease, and I haven't done any homework on that, but it sounds fairly explanatory: graft-meaning donated marrow (or any donated organ; eye, kidney, lung, etc) duking it out against the body's own cells because the host cells don't recognize the new kid as a good thing. This monitoring chunk of time could be as little as a month, or could last 4 or more; it's difficult to predict.
After that, he goes to a less round the clock type of monitoring and would be outpatient. At this point, we would be in house B at Ronald McDonald; which is actually apartments that are kept hyper-sanitary and clean because they are for bone-marrow transplant recipients and their families. He would still be within walking distance of the hospital, but it would be the first steps of "normalcy" that we will experience as a family. We would be going to several appointments a week during the outpatient phase, so we will still have to be in Seattle. This portion could last as little as 30 days, but as long as 6 months or more.
We then get to come HOME! We'll still have a zillion doctor's appointments, and probably a million or two people wanting to kiss us and the baby, but we will still have to be hyper sensitive about germs and illnesses and all the other things that could pounce on his weakened immune system, so I hope you understand if we don't let you kiss Oakley when you see him for the first time.
Well, this seems like a novel, not a blog...that's probably why I never really got into Twitter. My nurse told me to go to bed, so I'll save this and take heed. Good Night!