home from hospital

Whew. It was a long three days at the hospital. Mostly for Dalia, of course. The breathing tube was removed on Tuesday morning at about 10. She didn't cry at all - though her throat was so swollen that she could barely make a peep. And I do mean "peep." When she did finally try to say something, "help, Mama", she sounded like a squeeky baby bird. The day was spent with her in Tal's arms or my arms. Trying to get liquids into her, lots of sleep. We moved to the regular peds ward, Baird 5, and fortunately had our own room. Ate ice cream, slept, tried to play, cried, tried to stand, swaggered. Lots of "Hurt, hurt, owee," while pointing at her mouth or her ankles, where the IVs were placed.

In the afternoon, Dr. Rasczka, the infectious disease specialist paid us a visit. Turns out that there are only a handful of documented cases of INH (her medication) related to low platelet counts. And it turns out that her TB diagnosis is even in question (for reasons I won't go into). So, we may have been giving her INH for 3 months for nothing. But we don't know yet... we don't know for certain why her counts were so low. A big, thorny, painful mystery.

We slept through the night. Dalia on top of Tal, who slept on one of the pull-out chairs. I went to sleep on what was supposed to be Dalia's crib/bed, about 4 feet up in the air. Nurse Sarah came in at 11 PM and had a good laugh - and found another pull-out chair for me. We were awakened at 6:30 AM by a someone with a cart ... who came to take Dalia's blood. Ok, I thought, this is the interferon TB test. She took some blood, walked out the door, and I could hear her raving about how great a patient Dalia had been. Dalia looked a lot better to me - and I made up my mind that we were going to get her discharged that day. Only problem was, she wasn't drinking. We ordered a few bowls of soup.

Med students came in. Residents came in. Dr. Laub came in. Some vials showed up and sat on a chair. Then... another phlebotomist to take her blood. Wait a minute... didn't we already go through this?! So frustrating. The first time was to check her platelets, which were normal. This test was the TB test. I was pissed that the residents didn't have it together enough to only take her blood once. I asked the phlebotomist to come back when we knew that there weren't going to be any more tests for little D. An hour later, we called her. Tal and I, along with 2 nurses and 2 Child Life social workers with a cart full of bright lights, fans, and bubbles to distract Dalia, took her to the "procedure room" to get the other sample. It had gotten to the point that anyone coming into the room scared her.

It was good to be home, though we were all exhausted. Dalia was like a normal sick kid for about 24 hours, not much energy, though enough for Elmo. Since then, she's lived on Hummus (which she calls, "Humma"), soup, mashed potatoes, smoothies, and pediasure (ingredients: water, sugar...). Unfortunately, food is coming out her nose still. Not sure what this means but we are dreading another surgery sooner than we had thought.

Thursday, I went back to work - a shell. I am still exhausted.

Henry went to Maine and is already having a blast - kayaking, buying used books at the library, sailing, playing guitar. Yesterday, Tal, Calder, Dalia and I picked 14+ pounds of blueberries. We didn't even get to the raspberries!! Later in the afternoon, when Tal and Calder were at work doing some renovations on the chicken coop... Calder stepped on two nails. Another trip to the hospital! Poor kid - he is tough. Now he is on crutches, using his already injured leg to move around to protect his newly injured leg. Tal pointed out I'm the only on not injured. Fingers crossed....

cleft palate surgery

It's 6:30 AM on Tuesday in the Pediatric Intensive Care Unit and here we are with our little D. Dalia's surgery was yesterday. Both the ear tubes and the palate repair surgeries went well, nothing unusual, though her ears were terribly clogged with fluid on top of hardened layers of old fluid. But. She lost a lot of blood during the surgery, which lasted 4 and 1/2 hours rather than 2 1/2. After 3 hours and not hearing anything, I started to get worried. They think that her bleeding is a side effect of her INH medication (for positive TB), which causes a decrease in platelets. Her platelet count went down to 40; normal starts at 150. So...they kept her in the OR, gave her a blood transfusion and a platelet transfusion, then moved her to the PICU, with a breathing tube, sedation medicine in a drip and more as needed if she "wakes up", IV fluids and anti-inflammatroies.

She did wake up a few times when we were here last night. Man, is that little girl strong! As the nurses said this morning when switching over shifts, “Dalia gets up with a bang. I had to ask the parents to help hold her down. It took four people to hold her til we gave her the Versed.” “Dalia’s got game!.”

And since writing… she just woke up again for many minutes, blew through all kinds of additional sedation while Jeanne added more. The respiratory specialist is here, too. The pediatrician last night said “she’s a professional,” i.e. she takes a lot of sedation…

All of her nurses here, Pat (male), Katie (overnight) and now Jeanne have been wonderful. Her hair was sticking straight up and full of gunk -- blood, saline, who knows - it was punk rock. Katie washed it over night and she looks much better.

The positive aspect of her being sedated all night is that she wasn't able to squirm around and use her tongue to fidget with her palate. Palate had a chance to heal a bit. What we are hoping for is that the blood is clotting properly (and not going in to her lungs) so she can breathe on her own without bleeding.

So far so good. The (second) anesthesiologist from her surgery stopped by, as did Dr. Laub, her surgeon. He took a look in her mouth - looks good.

Sunday night (before surgery) we didn’t sleep too well as Dalia decided to wake up from 2-3:30 to have some conversation about the previous day’s events. “Horsey. Dalia. Horsey. Neigh!” then a review of select body parts: “Toe. Leg. Arm, Nose. Hair. Hair. Hair.” then family “Nana. Gaga. Dalia. Guh Guh. Hen. Cawker.”

We got to the hospital at 6 AM thinking that her surgery was at 7:45 AM. Turns out it was at 10:45. Dalia, her usual good-spirited and curious self, had a blast looking through magazines at colorful photos, practicing her words, looking at the art up and down the halls, going around the revolving doors, and then playing with the wonderful toys once we waited in the pre-op area. We played with 2 Child Life specialists, and our friend Gretchen came to visit again.

Tal and I spent the night in the “teen room” up on Baird 5, the pediatrics ward where Dalia will likely be moved to today. Amidst the playstations, the tv, the fusbol game, the air hockey and books, we slept on the pull-out couch. The nurses let me into the Ronald McDonald House family room this morning -- what a pleasure. I took a shower and made some tea for me and coffee for Tal, then rushed down to see Dalia.

Over the weekend, I thought, “Dalia’s biological parents must be some kind of amazing people. I could never have created this kid!” Sometimes I get really sad for them. But then I realize that those are my emotions. Maybe they were relieved to place Dalia in others’ care. I will never know. All I can do is be grateful, and hope that when they think of her, they believe that she is well loved and healthy, their special little girl.

… more later.

first haircut, carousel, shelburne museum

Dalia has had a very full two days! Yesterday, she had her first haircut. Her bangs were growing out, and she looked so cute with a barette in... but she pulled out the barrette after 5 minutes. So, with the weather so hot, the bug bites many, and surgery coming up, I thought it would feel great to cut it all off. SO adorable, and wicked cool. Now she has super short hair just like Mama's stylish friend, Liz.

Daddy and Calder were away at a soccer tournament for the weekend but got back in time to watch the World Cup Final. Henry spent the weekend doing lots of reading. Last night, Dalia and I went down to the East Middlebury playground for an hour or so and had so much fun on the animals, the slide, climbing all over the place. We met some other nice little girls -- Aspen, from Granville, and 2 older girls from E. Midd who were collecting tiny frogs, the size of the tip of my finger, that were on the basketball court next to the playground.

Today, Ginger, Ralph, Dalia and I went up to the Shelburne Museum in Shelburne. This is a destination, for anyone considering coming to Vermont. shelburnemuseum.org . We went to see the exhibit "Alzheimer's: Forgetting, Piece by Piece", an exhibit of quilts about people who have/had Alzheimer's. The first quilt I approached was an image of three trees, that looked much like the Tree of Life symbol in Judaism. The leaves of the trees had words that related to the artist's father's life, his interests, and his gradual losses from Alzheimer's. I read one line of the description of the quilt and started to cry. I had to just look around at some of the quilts before I could go back and read. I found much to remember about my Dad's dementia and Alzheimer's. I also found much to appreciate about how he was throughout, and the last year of his life. In front of one wall was a counter top, a few chairs, some colorful slips of paper, and a large cardboard wall-hanging that looked like a honeycomb. Visitors could write notes, roll up the paper and put it into the wall. I took a piece of paper, with Dalia on my lap, and wrote "Dear Grandpa Don, We remember you. Love, Dina and Dalia, your Granddaughter."

Another exhibit featured old artwork and a carousel from Circuses past. The best part for Dalia was a real carousel! We rode on a white horse with blonde hair. Such fun; she didn't want to get off. She fell asleep on the way home. When she woke up, sprawled out on the couch, her first word was, "Horsey!." Here's to many more horsey rides, Dalia!

OT, ST, swimming in the pond

These are busy days for young Dalia. She has had visits from Sandy, the ocupational therapist, and Alisa, the speech therapist. I've missed out on the visits, having started back at work full time, but Tal is here, and has taken notes and me in. OT at this point involves Dalia using her mouth, her tongue and teeth and gums in new ways so that she can eat more efficiently and control her drooling a bit. We have a mirror on the table so she can watch herself eat, and we have lots of rubber toys for her to chew on, and for us to play tug-of-war with. She's got a Nuk, which looks like a mini rubber version of a medieval torture device, except it feels great in her mouth. Tal ordered some toothbrushes that vibrate. She loves it all!

Her language acquisition is very advanced, but she has problems with some pronunciation. She usually says "Na Na" instead of "Mama" but is getting better at the Ms. We are to work with her on B sounds and P sounds. We also are supposed to be working with her to get her to blow bubbles, to work on some of the aspiration sounds. She continues to surprise us with all of her words and combinations. Tal made a list and came up with 300 or so words... this in less than 4 months in the US!

Like everywhere in the Northeast, it has been so hot here... which makes it all the better for swimming! Dalia has been playing in her kiddie pool on the deck all the time. All weekend, she ordered Tal and me to dive into the pond over and over again, imitating us counting, "One, Two Three, Go!" and making a pushing motion with her hand. Minutes after we came out, she would say, "Na na? Na na? ..." until I jumped in again. Finally... Ginger managed to entice Dalia into the water by laying a towel out into the water, which made Dalia curious enough to climb on top of it. Yea! We've been having great times watching the huge frogs at the pond and listening to them talk to each other.

Today, Dalia woke up saying, "owee, owee, hurt, hurt." Somehow, we hadn't noticed a huge sliver on the bottom of her foot - and now, she couldn't walk on it. Tal decided to take her to the hospital to have it removed. Shots of Lydacaine later... major extractions and lots of screaming ... and all better.

Tonight, while she was watching "Elmo's Shapes and Colors", I was folding laundry as she was playing with a tiny stuffed animal lamb. She pointed to the t-shirt and said her version of "off", so I took the t-shirt off. She held out lamb's shirt and placed it gently in the laundry basket.

And now, this Monday will be Dalia's second surgery to repair her cleft palate and to put tubes into her ears. We will report from the hospital, if not sooner!

journey to Lake Superior, Grandma Patty's

I realized one night while trying to stay awake hoping Dalia would fall asleep that even though this blog is called "all about Dalia", it is really more about my experiences of her and with her. I hope some day she will tell her story using her own words and perspective.

Dalia and I ventured to Bob's Cabins on the shore of Lake Superior, MN, on June 17th. My family takes an annual trip to Bob's over Grandma's Marathon weekend every year. It was paradise. Bob's has 13 simple cabins spread out over the rocky shoreline on this Great Lake. On the North Shore, the air has its own rich clean piney smell, the light takes hues unlike anywhere else. From our cabin perched right above the shoreline, through our wide windows, we could hear the waves on the rocks and the loons at night.

We flew from Burlington to Newark, missing our connection as the plane left late, and when we were finally about to land, wheels down, suddenly the plane looped back up into the sky. Wind shear. So, we circled Newark while I said goodbye to arriving on time. Fortunately, we were put on a later connection, but it meant 2 hours to kill in the busy Newark A terminal... with a very well-rested and wound-up Dalia! We plopped our backpack and stroller down in the wide hallway for people exiting and entering from security to other terminals, under a huge Eagle. Dalia quickly learned the word "eagle" and said it over and over, while pointing to the eagle's eye. We made friends with an adorable 18-month old boy who was on his way to Omaha We chased each other around, I pulled Dalia out from the middle of the hallway. I pulled up my jeans, again. Put my hair back in the ponytail.

We made it to Minneapolis, went to pick up the rental car. Mama is exhausted at this point, pushing the cart with the luggage, and Dalia on top. We get to the car, a Nissan cube, 90 degrees out. Ahhh, Minnesota air, Minnesota humidity. I look in the back seat and the car seat is there, shiny new, but not attached. Since I had never put a car seat in before (Tal does this), I panicked. I did the best I could, but am thankful now that I didn't ever stop abrubtly as Dalia may have gone flying! Bad Mom. Thirty minutes later. stuck in downtown ST. Paul rush hour, her bottle falls, "goggle? goggle?" then I hear the back door open and see Dalia's foot playing with the door handle. AH! I pulled over, put the blinkers on, shut the door, tightened the seat, and turned on the door lock.

Thankfully, Dalia was her usual easy-going self for the rest of the 3 1/2 hour drive up to Two Harbors. We had a good time, singing, talking, Dalia playing with the plastic animals that GinGin had given her.

The weekend was beautiful. Dalia met all of my family, learned everyone's name -- quickly. Cousin Vivian, friend Lizzy, and Cousin Sela were all on hand to be Dalia's big sisters; Grandma Patty "Grahmma" was there to reunite with her honey, Aunt San, Lizann, Susan "Soo Sah", Uncle Adam "Adah", cousin Peter, Ned, Tom and Sally Patterson were all there to watch, play and love on Dalia.

The lake is between 35-40 degrees in the summer. Many of us jumped in -- an annual tradition -- off the sacred rock. Dalia was not affected by the cold. She waded into the water, stood there, sat in the water, played with rocks, oblivious to the temperature. She just wanted to be in the water.

The first day, she pointed to the bottom of Susan's shoes, and said, "heart." Sure enough, there was a big red heart imprinted on the sole. The next day, while walking, she looked at the bottom of her own shoes and said, "heart." Another day, Sela's blue Keens were sitting outside. Dalia pointed to the shoes and said, "Sela." A little dog named Sweetie Pie who lives at the property ran over to Dalia one day and ran on top of her and over her many times. Dalia was understandably a little scared - and cried. Five minutes later, she said, "Puppy, puppy." She decided it was time to go see the dog again and face her down. Brave girl.

Grandma Patty finished the half with a very strong time -- with many of us cheering her on. Congrats, Mom!

Sunday was Father's Day. I was missing Grandpa Don so much. This was the first year being at Bob's without him alive. I felt him there, and will always. I felt the strong Dad, the Dad that ran so many Grandma's marathons, seeing him on London Road and at the finish, with his group of running ladies, "Don's Dollies" surrounding him. The Dad I knew before the dementia and Parkinsonism. I remembered my Dad in the later days, too, sleeping, calmly eating his yogurt, swinging the wiffle ball bat and falling like a tall tree, only to say, "TFO" ("too f*&#ing old"), and was grateful for ALL of the years he was with us.

We went back to Patty's on Monday (I was sad to leave). Tuesday evening, we had the unveiling of my Dad's graveside marker and the marble bench with "Wolkoff" engraved on it. So many friends and family came out. Dalia was oddly quiet throughout. I felt similarly removed, a little numb. So hard to go back to that spot where many tears fell, but so important to do so. Afterwards, we all went out to my Mom's for dinner and conversation.

Everyone there had in some way gone through the long wait for little Dalia Ruth along with us. And now to be able to introduce her to these core people in my life, people who were so close to my Dad -- for whom she is named -- and who are points of strength for my Mom, felt so natural and whole to me.

The trip wouldn't have been complete without swimming in the Willow River... with Dalia. I carried her over to the shallow sandy side where we walked against the current, and with the current. We walked with the fish, past the crawfish and river clams. Such a joy to be there. Perhaps my most blissful moments with Dalia were on the last day up at Bob's Cabins. We woke up early, and Dalia said, "lake, lake!" We went down the lake, she played in the freezing water, then came back to me, and sat on my lap, on the rocks, without moving. We both just sat there together, looking out at the lake, with Dalia in my arms.