Ash Adams

Photographer

ashadamsphoto.com

CARRYING SKY

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Location: Anchorage, AK

Biography: Ash Adams is a photojournalist and documentary photographer based in Anchorage, Alaska and San Francisco, CA, who works primarily for national and international media. Adams' work has been featured in The New York Times, The New Yorker,... MORE

Jennifer chants with 10 of her...l after birth," she says.

Jennifer chants with 10 of her female friends during a Blessingway ceremony for her pregnancy. Jennifer's baby, Sky, was diagnosed in utero at 20 weeks with a serious heart complication that is compounded by another rare condition known as heterotaxy. Babies with heterotaxy and right atrial isomerism, Sky's defects, have roughly a 15% chance of surviving their first year of life. Many do not make it beyond the toddler years. Jennifer was encouraged by friends, her physician and her husband to terminate the pregnancy--she is a doula and childbirth educator and her husband is an firefighter, so the financial hardship would be incredible for their family which, between two marriages for each, includes 5 children ages 2 to 16. Jennifer decided to have her baby in the face of these challenges and wanted to commemorate the pregnancy and birth of Sky with a blessing ceremony, a belly cast, and journaling. She was told that her daughter may need open heart surgery immediately after birth and may not tolerate life on the outside of the womb. "They can tell form but not function until after birth," she says.

Jennifer chants with 10 of her...fe on the outside of the womb.

Jennifer chants with 10 of her female friends during a Blessingway ceremony for her pregnancy. Jennifer's baby, Sky, was diagnosed in utero at 20 weeks with a serious heart complication that is compounded by another rare condition known as heterotaxy. Babies with heterotaxy and right atrial isomerism, Sky's defects, have roughly a 15% chance of surviving their first year of life. Many do not make it to 5 years of life. Jennifer was encouraged by her physician and her husband to terminate the pregnancy--she is a doula and childbirth educator and her husband is an EMT, so the financial hardship would be incredible for their family which, between two marriages for each, includes 4 children ages 2 to 16. Jennifer decided to have her baby in the face of these challenges, and wanted to commemorate the pregnancy and birth of Sky with a blessing ceremony, a belly cast, and journaling. She was told that her daughter may need open heart surgery immediately after birth and may not tolerate life on the outside of the womb.

A communications director at R...ll need to have her baby here.

A communications director at Randall Children's Hospital in Portland, Oregon shows Jen where Sky will need to stay immediately after the birth. Because Anchorage does not have the surgical capabilities for babies like Sky, Jennifer will need to have her baby here.

"I know how rough things ...re she feels most comfortable.

"I know how rough things seem now. Sky has medical issues but she is perfect. You chose to give her a chance. Regardless of the outcome, this is what is right for her and you!" reads a card from Jen's friend Susan. Jen decorates her hospital room with a peace flag, cards, candles and other tributes created by herself and her friends to make her birthing space feel less sterile. Jennifer's previous two babies were born in a birth center and at home, so birthing in a hospital is not where she feels most comfortable.

Jennifer discusses plans for S...er to help speed things along.

Jennifer discusses plans for Sky's birth and after birth with her birthing team, with Barb Norton, her 'honorary mother' and a certified nurse midwife who flew down from Anchorage to be present for the birth. Jen is in early labor. Â She agrees to let them break her water to help speed things along.

Jen breathes through a contrac...altar Jen has started for Sky.

Jen breathes through a contraction while Barb continues to decorate the altar Jen has started for Sky.

Jen labors in the shower.

Sky's head emerges. Jen&#...fastest of all of her births.Â

Sky's head emerges. Jen's labor and natural birth was just a little over 2 hours, the fastest of all of her births.Â

Sky, moments after birth.

Jen reconnects with Sky while ...come and had remained distant.

Jen reconnects with Sky while the cardiologist evaluates her. After she delivered the placenta, Jen rushed down the hall to be with her daughter. Her husband, Aaron (right, back), missed the birth and stands cautiously behind, observing. Jen says she knew he wouldn't handle Sky's birth well, but was still upset that he hadn't come and had remained distant.

Aaron holds Sky for a moment a... days to determine next steps.

Aaron holds Sky for a moment after the cardiology team has finished their evaluations. Dr. Chang, Sky's cardiologist, found another abnormality with her heart in his evaluation, and has decided to watch her in the NICU for the next several days to determine next steps.

Two days after the birth, Jen ...to be able to breastfeed Sky.Â

Two days after the birth, Jen cleans bottles in the sink in the NICU room while Sky sleeps. Jen pumps to keep her milk supply up while she waits to be able to breastfeed Sky.Â

Story, 4, looks across the hal... Sage stays mostly with Aaron.

Story, 4, looks across the hall toward a crying baby in another NICU room. "Mom, you go," she says. "He needs boobies!" While Jen's small children, Story and Sage, 2, do not stay in the NICU overnight, Story visits often while Sage stays mostly with Aaron.

Jen bathes Sky for the first t...House, 6 days after her birth.

Jen bathes Sky for the first time at the Ronald McDonald House, 6 days after her birth.

Aaron lets Sky suck on his lip... that she's broken."

Aaron lets Sky suck on his lip while Jen prepares to nurse. Jen scolds him; Sky does not have a spleen, and so her risk of infection will be one of her constant struggles. "She looks just like a normal baby," he says a few moments later, "but you have to rememeber that she's broken."

Sage, Jen's 2-year-old so...e heading home to Eagle River.

Sage, Jen's 2-year-old son, snuggles with Aaron while Jen soothes Sky in their room at the Ronald McDonald House. Jen, Aaron, Story, and Sage stayed in the Ronald McDonald House for one month before heading home to Eagle River.

Sky swings in the kitchen at J... of unpacking and settling in.

Sky swings in the kitchen at Jen and Aaron's home in Eagle River. A week before leaving for Portland to have Sky, Jen and Aaron were evicted from their rental home without notice, so when they return from their month in Portland, they begin the process of unpacking and settling in.

Sky yawns after playing with J...s her she's overreacting.

Sky yawns after playing with Jen. "She becomes tired and breathless so easily," Jen says. After Sky returns home to Eagle River, she starts having what she describes as mini-TET spells, during which she turns blue and her SATs drop into the 60's. Jen is terrifed everytime, but Aaron tells her she's overreacting.

Jen nurses Sky while watching ...39;s first open heart surgery.

Jen nurses Sky while watching her children play. She gives Sky medicine around the clock while also monitoring her oxygen saturation and dealing with the stressful TET spells. She is told by her cardiologist in Anchorage that these will happen more frequently until it is time for Sky's first open heart surgery.

Jen is concerned about Sky at ...til she has her first surgery.

Jen is concerned about Sky at a routine caridiology appointment in Anchorage. While her oxygen saturation numbers remain low, she is told that this is normal for a baby with her condition and heart defects and that this pattern will likely continue until she has her first surgery.

Aaron looks over diagrams he a...fter Sky's heart stopped.

Aaron looks over diagrams he asked the cardiologist to draw him after Sky's heart stopped.

Aaron, tired from a long night...ike they were on a team again.

Aaron, tired from a long night of work, listens to Jen talk with the doctors in the Emergency Room at Providence in Anchorage. Sky's heart stopped in the early morning hours of July 4, so she and Jen were rushed by ambulance to the hospital. Aaron, who had been working the July 4 shift with the Eagle River fire department, is exhausted but engaged. Jen says it was the first day that Aaron "got it" and felt like they were on a team again.

Jen soothes Sky during a TET spell the night before her surgery.

Jen and Sky, preparing the morning of her surgery.

Jen watches as Sky is carried by nurse Hillary down to surgery.

Jen sees Sky for the first tim...e various tubes and machinery.

Jen sees Sky for the first time after surgery. She is on a ventilator and on a paralytic drug to keep her immobile. Medical staff explain to Jen the functions of all of the various tubes and machinery.

Sky, one hour after surgery.

Jen stays by Sky's side d...during her first week post-op.

Jen stays by Sky's side day and night for weeks. Sky experiences only brief moments of consciousness during her first week post-op.

Jen's bed at the Ronald M...er odds and ends in her place.

Jen's bed at the Ronald McDonald House. While Sky is in the PICU, Jen does not sleep at the Ronald McDonald House, but leaves Sky's footprints, a dress she wants to dress her in when she leaves the hospital, her pulse-ox, and other odds and ends in her place.

Jen lifts up Sky for the first time since surgery.

Jen holds Sky for the first ti...s on her scar," she says.

Jen holds Sky for the first time since the morning before her surgery. "I don't want to get tears on her scar," she says.

11 days post-op, Jen holds Sky in their step-down unit.

Back in the room at the Ronald...lm as long as Jen is close by.

Back in the room at the Ronald McDonald House almost a month after Sky's surgery, Jen puts on make-up for the day while Sky sleeps. Sky suffers withdrawals and exhibits some post-traumatic symptoms but is calm as long as Jen is close by.

Jen changes Sky's diaper ...car, and drove Sky to Seattle.

Jen changes Sky's diaper in a rental car outside of Seattle Children's Hospital. Jen wanted to get a second opinion because Sky's case is so complicated, but it was difficult to get the paperwork through. So, after days of phone calls, she was able to get a referral to head in for consults at Seattle Children's through a doctor in Anchorage. She then made appointments, rented a car, and drove Sky to Seattle.

Dr. Sawin explains in detail S...e to Seattle after this visit.

Dr. Sawin explains in detail Sky's prognosis and his thoughts on how to move forward regarding a surgery Sky will need to attach her intestines to the bowel walls. Children with heterotaxy have a high risk for a volvulus, a life-threatening condition in which the intestines twist. Jen changes Sky's care to Seattle after this visit.

Jen and Sky sleep in a hotel i...fore heading back to Portland.

Jen and Sky sleep in a hotel in Seattle after a day of appointments, before heading back to Portland.

Sky, 6 months old, stands in h...er surgery several months ago.

Sky, 6 months old, stands in her activity center while Sage runs into Jen with a kiss. Sky's oxygen saturations dip here and there, but Sky has had no more TET spells since her surgery several months ago.

Jen and a friend embrace at a ...rom her friends on the matter.

Jen and a friend embrace at a gathering of her closest friends. Jen asked to meet to discuss some of the feelings she's been having about Sky's upcoming second open heart surgery and ethical dilemmas she has should Sky need a heart transplant. One of the babies with a condition similar to Sky's who Jen met through her daughter's illness had just been transferred to Seattle and is awaiting a heart transplant. Jen doesn't feel that it would be ethical to go through with a heart transplant if given the option and wanted to hear thoughts from her friends on the matter.

Jennifer changes a bandage whi...ther month while she recovers.

Jennifer changes a bandage while a nurse entertains Sky with a medical glove that's been blown up like a balloon. Sky was scheduled to travel down to Seattle Children's for surgery this week, but contracted RSV and was hospitalized for 4 days in Anchorage at Providence Medical Center. Sky's cardiologist in Seattle decided to postpone surgery for another month while she recovers.

Jen plays peek-a-boo with Sky ...r while she's sick."

Jen plays peek-a-boo with Sky in Sky's hospital crib on the last day of a four-day hospital stay at Providence Medical Center in Anchorage, AK. Sky was infected with RSV, a respiratory illness for which she receives costly monthly injections to avoid. Sky sat up on her own for the first time during this stay. "I love that they [Providence] let me stay in here with her to comfort her while she's sick."

Jen dresses Sky at a routine a...s Pediatric Cardiology Office.

Jen dresses Sky at a routine appointment with her cardiologist, Dr. Brekke, in Anchorage at Seattle Children's Pediatric Cardiology Office.

Jen comforts Sky as her Anchor...e eyes," Dr. Brekke says.

Jen comforts Sky as her Anchorage cardiologist, Dr. Brekke, tries to keep her distance while moving in to listen with her stethescope. "I know not to look her in the eyes," Dr. Brekke says.

"She does this," Jen...;s looking for my crown."

"She does this," Jen says. "We read this book called 'The Crown on Your Head,' and when she does this, I think she's looking for my crown."

Jen and Story play telephone i...ile Jen holds 9-month-old Sky.

Jen and Story play telephone in their kitchen in Eagle River while Jen holds 9-month-old Sky.

The family flies down to Seatt...lso waived their parking fees.

The family flies down to Seattle together this time for Sky's second open heart surgery. While waiting for a room at the Ronald McDonald House, Aaron bids on hotels on Priceline and is booked in a four-start hotel downtown, the Palladian. Upon checking in, they were upgraded without cost to a huge suite in the boutique hotel after the front desk personnel inquired as to the reason for their visit. They also waived their parking fees.

The family prepares to head ou... to enjoy their time together.

The family prepares to head out for a day walking around Pike's Place Market in Seattle. The location of their hotel is just blocks away, and with Sky's surgery just days away, they want to enjoy their time together.

Aaron comforts Story after a s...039;s really stepped up."

Aaron comforts Story after a small tantrum in a store with a heart-shaped chocolate sucker. "This is all very hard on them," Jen says of Sage and Story. "Aaron has really stepped up as a parent to them in all of this. He's really stepped up."

Jen looks to see how Sky's three teeth are coming in.

Jen paints Story's nails ...holding Sky at the Palladian.Â

Jen paints Story's nails while holding Sky at the Palladian.Â

Jen spends a few last moments ... not be understood until then.

Jen spends a few last moments with Sky before she is taken for her second open heart surgery at Seattle Children's Hospital. Before the surgery, Dr. Chen, Sky's surgeon, outlined a few of the options they would have once they were in, but exactly what they would be able to do would not be understood until then.

Jen and Sky observe the orangutans at the zoo.

Sky plays at home in Eagle Riv...r fine and gross motor skills.

Sky plays at home in Eagle River, almost one month after her third open heart surgery. "Cognitively, she's all there," Jen says, "but we have some things to catch up on developementally." Sky is almost a year old but has not started crawling yet, and is still working on her fine and gross motor skills.

Jen drives with Sky to pick up...nd attend to her more quickly.

Jen drives with Sky to pick up ingredients to make her a birthday cake on her birthday. Although safety regulations suggest that parents place children in car seats in the back, Jen drives with Sky up front so that she can keep an eye on her and attend to her more quickly.

When Jen, Story, and Sky retur...rgery and is now 7 years old.Â

When Jen, Story, and Sky return home from picking up the ingredients for her birthday cake, Jen is surprised to find a beautiful cake in her kitchen that was made by a close firend, Susan. (Story couldn't wait for cake time and put her finger in it the moment she saw it.) Jen was working at the birth center where Susan delivered her baby, Jenny, who Susan named after Jen. Jenny was born with a heart defect that Jen noticed shortly after Jenny was born. Jenny was flown to the same hospital in Portland where Sky had her first surgery and is now 7 years old.Â

Jen plays with Sky on the floo...ws that she's home."

Jen plays with Sky on the floor of their kitchen at home on her birthday. "She is just so happy, and just so filled with joy," she says. "I feel like she really knows that she's home."

Jen inspects Sky's scar o...ls a little differently."

Jen inspects Sky's scar on her birthday. "It's different now versus after the first surgery," she says. "Each time they go in it heals a little differently."

Jen and the kids play with Sky on her birthday.Â

Jen nurses Sky while Story and...art does strange things."

Jen nurses Sky while Story and Sage play with whistes on Sky's birthday. "Today is really emotional for me," Jen says. "It's weird but I was sort of dreading it. A wounded heart does strange things."

Sky watches her siblings play ...elieves is likely from stress.

Sky watches her siblings play in a water balloon fight outside. Jen is fighting a migraine that she believes is likely from stress.

6 days after she turns one yea...his makes my heart soar."

6 days after she turns one year old, Sky starts crawling. "I am living this time with her with my whole heart. I know it's not going to last, and I don't care," Jen writes in a private Facebook post to the women she refers to her 'tribe.' "I'm not going to let anything darken her shine right now. Aside from getting her vitals/numbers and weight and meds, I can almost pretend she's normal. I constantly feel like I'm forgetting to do stuff for her because I'm not used to her needing to little. The biggest change of all is she's gaining courage to explore life beyond my arms. This makes my heart soar."

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Thumbnail of Jennifer chants with 10 of her _il after birth," she says.

Thumbnail of Jennifer chants with 10 of her _ife on the outside of the womb.

Thumbnail of A communications director at Ra_ill need to have her baby here.

Thumbnail of "I know how rough things s_ere she feels most comfortable.

Thumbnail of Jennifer discusses plans for Sk_ter to help speed things along.

Thumbnail of Jen breathes through a contract_ altar Jen has started for Sky.

Thumbnail of Sky's head emerges. Jen�_ fastest of all of her births.Â

Thumbnail of Jen reconnects with Sky while t_ come and had remained distant.

Thumbnail of Aaron holds Sky for a moment af_l days to determine next steps.

Thumbnail of Two days after the birth, Jen c_ to be able to breastfeed Sky.Â

Thumbnail of Story, 4, looks across the hall_e Sage stays mostly with Aaron.

Thumbnail of Jen bathes Sky for the first ti_ House, 6 days after her birth.

Thumbnail of Aaron lets Sky suck on his lip _r that she's broken."

Thumbnail of Sage, Jen's 2-year-old son_re heading home to Eagle River.

Thumbnail of Sky swings in the kitchen at Je_s of unpacking and settling in.

Thumbnail of Sky yawns after playing with Je_ls her she's overreacting.

Thumbnail of Jen nurses Sky while watching h_039;s first open heart surgery.

Thumbnail of Jen is concerned about Sky at a_ntil she has her first surgery.

Thumbnail of Aaron looks over diagrams he as_after Sky's heart stopped.

Thumbnail of Aaron, tired from a long night _like they were on a team again.

Thumbnail of Jen soothes Sky during a TET spell the night before her surgery.

Thumbnail of Jen and Sky, preparing the morning of her surgery.

Thumbnail of Jen watches as Sky is carried by nurse Hillary down to surgery.

Thumbnail of Jen sees Sky for the first time_he various tubes and machinery.

Thumbnail of Sky, one hour after surgery.

Thumbnail of Jen stays by Sky's side da_ during her first week post-op.

Thumbnail of Jen's bed at the Ronald Mc_her odds and ends in her place.

Thumbnail of Jen lifts up Sky for the first time since surgery.

Thumbnail of Jen holds Sky for the first tim_rs on her scar," she says.

Thumbnail of 11 days post-op, Jen holds Sky in their step-down unit.

Thumbnail of Back in the room at the Ronald _alm as long as Jen is close by.

Thumbnail of Jen changes Sky's diaper i_ car, and drove Sky to Seattle.

Thumbnail of Dr. Sawin explains in detail Sk_re to Seattle after this visit.

Thumbnail of Jen and Sky sleep in a hotel in_efore heading back to Portland.

Thumbnail of Sky, 6 months old, stands in he_her surgery several months ago.

Thumbnail of Jen and a friend embrace at a g_from her friends on the matter.

Thumbnail of Jennifer changes a bandage whil_other month while she recovers.

Thumbnail of Jen plays peek-a-boo with Sky i_er while she's sick."

Thumbnail of Jen dresses Sky at a routine ap_;s Pediatric Cardiology Office.

Thumbnail of Jen comforts Sky as her Anchora_he eyes," Dr. Brekke says.

Thumbnail of "She does this," Jen _9;s looking for my crown."

Thumbnail of Jen and Story play telephone in_hile Jen holds 9-month-old Sky.

Thumbnail of The family flies down to Seattl_also waived their parking fees.

Thumbnail of The family prepares to head out_t to enjoy their time together.

Thumbnail of Aaron comforts Story after a sm_#039;s really stepped up."

Thumbnail of Jen looks to see how Sky's three teeth are coming in.

Thumbnail of Jen paints Story's nails w_ holding Sky at the Palladian.Â

Thumbnail of Jen spends a few last moments w_d not be understood until then.

Thumbnail of Jen and Sky observe the orangutans at the zoo.

Thumbnail of Sky plays at home in Eagle Rive_er fine and gross motor skills.

Thumbnail of Jen drives with Sky to pick up _and attend to her more quickly.

Thumbnail of When Jen, Story, and Sky return_urgery and is now 7 years old.Â

Thumbnail of Jen plays with Sky on the floor_ows that she's home."

Thumbnail of Jen inspects Sky's scar on_als a little differently."

Thumbnail of Jen and the kids play with Sky on her birthday.Â

Thumbnail of Jen nurses Sky while Story and _eart does strange things."

Thumbnail of Sky watches her siblings play i_believes is likely from stress.

Thumbnail of 6 days after she turns one year_This makes my heart soar."

Private Story

CARRYING SKY

Updated Sep 2016

Topics Black and White, Documentary, Editorial, Photography, Photojournalism, Pregnancy/Birth

Jennifer Allison found out at 20 weeks pregnant that her baby, Sky, would be born with a rare syndrome and multiple defects in her heart and other organs. She was told that Sky would have a 15-20% chance of surviving the first year of life. She isn't religious, and between she and her husband, already has 5 children. But she knew that having her baby was the right choice for her, to whatever end. "I told her that I would carry her as far as she wanted to go," she says.

Sep 24, 2015

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