May 5

Another day under the lights, but the Bili blanket is brought out as soon as we ask to hold her. She loves being able to open her eyes!

The big news we were waiting for: the dye from the first test is finally passed out of her system! They put the new dye through her G-Tube and have taken her initial x-rays; so far everything looks good! No signs of blocked or narrowed intestines, no other warning signs indicating that she would not be able to pass milk through her gut. We must wait for a full result to know when she can begin feedings, but our hopes are high!

We went to the Tulip Festival at Thanksgiving Point tonight with our children and all four of our parents. They pushed me in a wheelchair as I have still been having a lot of swelling in my feet and legs, and difficulty walking due to sore abdomen.  It's going to take a while to recover from the immense pressure of a triplets' worth of amniotic fluid.

Precious day, grandparents and kids at the Tulip Festival! This was my dream, all those weeks in the hospital, to do as soon as I was released, it was AWESOME that it worked out. Forgive me one vain comment: this photo was taken six days after birth, and I wish I had a dollar for every time this past week I have been asked when my due date is! LOL I know, I know, SO HUGE still, BUT I'm shrinking every day thank heaven! Now at 11 days, I look only pregnant with one baby, about 7 months.... woo hoo?

My Dad and Mom have been so sweet and protective of me, it has meant so much especially since Justin has been thoroughly preoccupied with the baby.  It will be so hard to say good bye when they leave to go back to Oregon in a couple of days.  I love this photo of him pushing me in a wheelchair through the tulip festival, with me giving a popsicle to my little guy.  He is reacting with surprise to the coldness of the treat. You know, some people might find this surprising or strange, but honestly the very hardest part about this entire experience is missing out on the changes and growth in my other children, especially my sweet little one year old, Gideon.  His delightful personality and silly smile are an absolute joy to me.

My three oldest are holding very still (a rare sight) in order not to frighten away the mother goose and fuzzy goslings who were ambling on the grass near the pond.  The kids, while still normal and squirrelly, have been champs through all of this, and patient with all of the changes and stresses in our lives.

May 4

Still under lights for treating jaundice, still on 0.4 litres of low level oxygen.

X rays show her system still has not passed the rest of the dye from the first test

Nurse tells us we can't hold her today because she needs time under the lights to break up her jaundice.

Nurse says she's had a couple of “low sats” this morning (warnings of low oxygen saturation)

We are present when doctors meet in a group for their daily “consult” at Audrey's bedside

Doctors override nurse's restriction to not hold Audrey today, they order a “Bili blanket” that can be wrapped around her while we hold her, which is best for her progress.

Doctors order her total fluids to be increased, we hope this will help thin her saliva.

Susie holds her for 30 mins, but Audrey becomes uncomfortable and fussy.

Justin calms her and holds her for 2.5 hours.

Audrey is repeatedly “high sat”-ing and setting off monitors to let them know her oxygen is near 100%, nurse finally turns off the monitor for high saturation-- it's nice to hear a good alarm for a change, and even better to have one more thing removed!

Nurse gets permission to remove the nasal cannula!! No more tube in the nose, no more help breathing!!

We learn that the TPN given intravenously is not a long term solution; it is usually given for less than two weeks because it is hard on the liver and can cause permanent damage over longer periods. This is discouraging news and increases our urgency to get the G tube working asap.

she has had no pain meds all day.

Justin and my dad pressing gently on Audrey's head and feet.  We were told by the nurses that that is a very comforting touch for an overstimulated post-surgical baby who needs to be in the bassinette for long hours.

Glycerin suppository given to try to help her pass dye and bilirubin out of her system, no immediate effect, but several hours later she has had multiple diapers... wonderful news!

7:30p oxygen tube removed! No more plastic in her nose!

The word did not reach the nurse to wait for us to do her bath-- Susie is devastated to learn that we just barely missed it. Baths are done MWF between 8-10p, and we contacted them at 8:15 and were simply unlucky that the nurse had done Audrey's bath right at 8. The nurse writes a note and tapes it to the bassinet for the Friday nurse to arrange to do it when we are there.

10-midnight “quiet alert” time in Susie and Justin's arms with Bili blanket, most awake and comfortable we've ever seen her.

Audrey “roots” for the first time and sucks on a pacifier for 60 minutes-- a big deal because she needs this skill to learn how to eat eventually. Many kids with EA have a hard time sucking on a bottle because they have learned to hate having things in their mouth and they don't associate food with a positive feeling. She is starting to figure out that we aren't feeding her. :)

May 3

X-rays showed her system has not yet passed all the dye out, so we have to wait to do dye test from the G-tube.

Lots of problems with her Replogle suction tube clogging up, nurses are fighting it all day, her saliva is very thick.

Placed under special “bili lights” to break up jaundice, she wears an eye mask all day.

Her movie star spa day. Tanning under the bright lights (for treating jaundice,) hangin' with her shades, sticking out her one little pink glove just to tell you once again who's bad. (The nurse had put that on her to keep her from grabbing her replogle tube, the one draining her saliva. She called it her "bad girl glove" and I was reminded of the Michael Jackson song.) Doesn't she look so cute and relaxed?

Her little sunglasses make me laugh. 

The mark in the middle of her chest is a birthmark. She has another one on her abdomen--- only Eden has a birthmark of all my kids. Could it be a girl thing?? :)

Oxygen flow in tube is gradually decreased to 0.8 liters, she is on “room air” levels of oxygen, just blowing it into her nose lightly to help her remember to breathe

Because she needs to stay under the lights as much as possible, we are allowed to hold her for only short periods of time while her tubes etc are being taken care of.

My parents' transmission dies on their van, just two blocks from dropping us off at the Ronald McDonald house for the night--considering they drove across three states to come see us, and there are a hundred miles between our house and the hospital, and we even had a spare car up here today, this was nearly ideal timing and place for such a major repair! What a blessing. We walk home, get our little car, and drive them up to the hospital so we can get the car we have borrowed from Justin's parents (to help us when we have to split up for Justin's work), and lend Mom and Dad our car for the rest of the week while their van is being fixed. The mechanics finish it Friday afternoon, in time for Mom and Dad to keep their original schedule returning to work and spend time with their parents for Mother's Day.

May 2

Susie is discharged from U of U hospital, we check in to Ronald McDonald House. To our surprise it is a beautiful Victorian home furnished similar to a bed and breakfast.

Picc line attempt #2 is successful! Audrey starts receiving thicker nutrition (TPN) through this new line, means her regular IV can be removed and not need to be re-poked every two days in a new spot

All four Grandmas and Grandpas get to hold her in succession. Susie heads home with her parents to pack for the coming weeks, sweet visit with kids over those two hours.

Audrey's oxygen tube is lowered to “room air” content, still needs it blown fairly strong into nose to remind her to breathe. Justin is there for her first sponge bath, little more than a hair wash. Nurse tells Audrey this is her spa treatment. Audrey tolerates it reasonably well.

May 1

Audrey graduated from the "iron lung" and is put on just a "nasal cannula" with oxygen being blown into her nose to remind her to breathe. Sometimes she still takes long-ish breaks and scares us all.

She has been receiving sugar and some nutrients via IV, but these are not sufficient for the level of growth a newborn needs, and require almost daily re-pokes.

Doctors get our permission to insert a “Picc” line, a tiny tube the width of three human hairs, that travels through her arm and lets out in the large veins near the heart, to be used for giving her thicker nutrition than can be given through a regular IV; we ask lots of questions and then approve it, however the first attempt is unsuccessful; a jog in her shoulder vein is blocking the line from getting through. Nurses will try the second arm tomorrow.

It's hard to leave her.  Late that night the nurse surprises us with a huge privilege.... she lets us hold Audrey for the first time.

April 30

4am, Susie knows she is in “real” labor, 4:20am time to push, 5:28am Audrey is born and immediately transferred to the UofU NICU for stabilizing, she scores a 9 (out of 10) on her “Apgar” score (a terrific sign of great health and vigor), breathing great on her own, weighs 6.7 lbs and 19.5 inches long, Justin arrives 5:45am and is immediately invited to observe her in the NICU.
6am Audrey is brought in to meet Susie, Justin gives her a priesthood blessing, then Audrey and Justin go with the Airmed team to be transferred to Primary Children’s Hospital.

1pm Audrey’s first surgery. Her EA/TEF is Type C, with a single fistula (unwanted tube) connecting the lungs and distal esophagus. Surgeons repair the fistula first. They then discover that the gap in her esophagus is too large to connect at this time. (After stretching, the gap is still 1.5 inches.) A G-Tube (feeding tube) is inserted directly into her stomach near her belly button to allow for later feedings. This will be how she will be fed for up to three years, depending on when her esophagus can be reconnected and how long it takes her to learn to eat successfully, but they will wait to start using the G Tube for now, until it is determined that she has a working digestive system. For now she will receive nutrition through her IV. Surgeons also observe that all of Audrey’s small intestines are grouped on the right side of her abdomen.

For the surgery, an incision is made between two of her ribs under her right armpit. Her right lung is deflated and she is put on artificial ventilation (iron lung), with a tube down her throat. When she comes back from surgery, she is kept on morphine to help her stay still-- every time she starts to ‘come to’ and tries to breathe on her own, she gets the hiccups! The nurses don’t want them to aggravate her incision, so they keep her under for a little longer and continue the artificial ventilation.

Susie's parents had already been half way here, driving from Oregon, the night before Audrey was born.  If things had gone according to plan they would have been here well before the birth, but it turned out great that they arrived just after she got out of surgery.  In the midst of all the stress of those first few days, it was wonderful to have them urge us to take a few moments for a treat here and there.  When I was discharged from the hospital, they helped me move into the Ronald McDonald House.  They made sure I ate regular meals and rested more than I otherwise would have.  Thank you, Mom and Dad, for watching out for my health in the middle of all of this.

Birth Story

Audrey's first name is for Audrey Hepburn, the lovely-inside-and-out actress who was made famous overnight in her debut lead performances both on stage and screen.

True to form, our own baby Audrey made her debut with a big splash and on her own schedule, bright and early on a glorious Saturday in the middle of a blizzard. I was awoken in the way I had become accustomed the past few weeks; with a painful contraction around 2:30am that told me it was time to visit the ladies' room. As typical, the contractions continued thereafter for a few minutes before settling down, and I fell back asleep. Most nights this would happen at least twice. This morning it happened at 2:30, at 3:15, and again at 3:45a.m. I lay there hoping this would be the last bad contraction, but another one came close on its heels. Finally I sighed and pushed the nurse call button. She went to get a monitor machine and by the time she got back I was immobilized by pain. She called Justin at my request, and five minutes later I felt the need to push. My awesome nurse knew I had had four babies, most without any pain meds, and bless her, she really believed me. She took the initiative and overrode protocol, grabbed another nurse and wheeled me over to Labor and Delivery at 4:23. The doctor on call tried to stop us in the hall and asked to go back to my room and check me, but relented when I moaned a definitive NOOOO. Labor and Delivery nurses gathered in the room and started to ask me lots of questions, to which I said: Drugs now. Talk later. They said they had to give me an IV. I think it took them about an hour to unwrap a syringe, and at least another hour to decide where to poke me, at which time the young nurse found a set of nerves on my wrist I did not know I had, and a way to make me scream worse than childbirth. I guess you could say we explored several options of pain management, including distraction. It took only two more attempts for them to find a suitable place for the IV, and a few long minutes later I was finally able to unlock my muscles enough for them to learn that yes, this baby really was coming, and no, there was not time to place an epidural in my spine after all. A few intense pushes later, and that sweet baby girl was sprawled out in front of me, looking as surprised and in shock as I was. It was 5:28am.

Brand new. She is about 20 minutes old in this picture.

This is about 15 minutes after birth.  She had just had an IV placed, and they put a suction tube in her mouth that will continually drain the saliva from the "pouch" (her short esophagus).

I never got to hold her; she was destined for bright lights and a devoted following. As she whisked off to meet her public, my OB was up to her elbows inside me doing her best to stop me from bleeding to death. Success ensued, and the evidence was cleaned away just moments before Justin walked in the door. He'd been having lots of fun of his own, playing in 8 inch deep snow on the freeway in his little commuter car. He was immediately welcomed to come meet Audrey and observe her progress in the NICU. A few minutes later he came in to see me as the vanguard to announce her imminent arrival. We quickly discussed her name so that he could give her a name and a blessing as per the tradition of our faith. Her name would be Audrey Rose Dianna, to honor some of the strong women who have laid a wonderful example for her. At last she arrived!! Head on her hands, calm and snug on her belly, dark eyes wide and looking around at all there was to see. She knew our voices. I was allowed to touch her and to kiss her tiny arm. Time stood still for a few precious minutes while we touched, we prayed, we cried quietly, and we felt the angels watching over us.

Our first meeting! They had taken her straight from birth to the NICU--literally, through a sliding glass window built into the wall-- and brought her out to see me after making sure she was ok, and placing her suction tube, IV line and monitors. Then they wheeled her in to meet me for a couple of minutes before she was transferred to the children's hospital across the skybridge. She was all snuggled in on this warming pad, but her eyes were wide open and staring all around at everything. It was very sweet. Justin said a special prayer over her to give her her name and ask a blessing on her.

 Evening of the first day. She loves her warm spot and this cuddly position.