Cabin fever has officially set in at Jakobe's house! No worries, though; a well timed introduction of a birthday gift from Grandma Dixie Ogilvie is the perfect remedy. Thanks Grandma Dixie!
Hi! It's me,Jakobe!
I was invited to Luck Schools today by my Nurse Dawn Ogilvie's son Kaiden Ogilvie to share my story and teach about Treacher-collins syndrome. It was really fun! First I helped Kaiden with a presentation in his biology class about genetics. I think he was the only one to bring in someone to help. Especially someone with something so rare. You know, like 1 in 50,000 rare!
After that we visited the 6th grade classes that read the book and watched the movie Wonder. They asked lots of good questions, were very nice to me, and learned no matter what, always choose kindness and show love.
I hope I get asked to go visit other schools and kids. It sure was a lot of fun! I got to fist bump and make new friends. I even told my new friends we were "new friends" in sign language!
I haven't had a nap yet and I'm tired so I'll see you later!
Dear Jakobe Lover's and Supporter's,
Yesterday morning Jakobe woke up with low oxygen levels and appeared very uncomfortable; next step is respiratory distress. With quick action of an aggressive neb treatment and a significant amount of suctioning, his oxygen level and heart rate returned to base line(normal).
However, as the morning progressed and after more neb treatments, Jakobe was still unable to recover his breathing to normal. Heidi Johnson's mother's intuition along with Nurse Dawn Ogilvie's afternoon assessment on her day off, the decision was made to go to the Children's Hospital ER.
Jakobe was admitted to the hospital for observation and culture results. Thus far he is negative for RSV and influenza. The doctors are pleased with Jakobe's progress but not comfortable with the level or speed in which he is progressing. Therefore we are staying for at least one more overnight.
Spending the first seven months of his life here, all current doctor visits and services received here, and his previous surgery and PICU stay in November, Jakobe continues to capture the hearts of his Children's Hospital care givers and hospital support team. Now he is able to show his love and "almost 2yr. old" personality with all his sign language.
When learning of his cares and future endeavors before we brought him home at 7 months old, we learned numerous hospital stays were going to be part of the journey; and a journey it has become. A journey of tenacity, education, risk and reward, accomplishments, fear, faith, hope, love, and relationship.
Heidi, Jakobe, and I are greatly influenced by the unique relationship we share with each of you. Please know we walk this journey together connected in, by, and through prayer and deep faith in our shared God with each of you. You and the gifts you share in all the forms they come are received in love and are wholly cherished.
This hour we rest in restless peace, cradled in your prayers, and wrapped in love from above that is ever present in our relationships with you and in our quarantined hospital room.
Jesus loves you.
Jakobe has been named and claimed by the waters of baptism!
Our hearts are filled with gratitude for Chad Rademacher and Sara Bolton Rademacher's family's commitment and desire to be Jakobe's God Family. Moreover, we are filled with thankfulness for our Living Water church family that welcomed us with unconditional love in the old pole building on Birch ave we all called church several years ago. Their love, support, and guidance continues as Heidi and I live into our call as church planters and now parents. It felt good to be home.
May we all sleep the peaceful sleep our Jakobe sleeps this afternoon, resting in the promise that comes with holy baptism.
Jesus loves you,
Hello Lover's and Supporter's! It's me, Jakobe!
Guess what? I have lot's of stuff I want to share with you. First, I am having a fun hair day this morning in my tractor jammies! Second, I haven't been sick the whole month of January! In fact, I haven't been sick since before Christmas. I got sick before Christmas and almost went back to the hospital but Mom, Dad, and Nurse Dawn Ogilvie took good care of me and I was able to stay home.
But what I'm super excited to tell you is that not only have I been walking a lot, I have been learning lot's of sign language! My speech therapist, occupational therapist, and birth-3 person came out this week together and spent time with me, Mom, Dad, and Nurse Dawn.
They tell me I am "completely off the charts" for language and language development. I know way over 100 signs and am putting small sentences together in sign language. They say this is awesome because I'm not even 2 years old yet.
I get at least 3 neb treatments a day and each treatment takes almost 1 hour so I sit in my highchair and watch "signing time with Alex and Leah" during my treatments. Also, Signing Time is always on the t.v. during the day and most of the evening. I don't watch it all the time during the day but it is the way I hear and see my language to learn how to talk with my hands.
My care team says it's how I get "immersed in my world of language." Most kids learn voice words by being immersed in family, school, and outings. I am immersed in family and outings too but hardly anyone is using sign language for me to just learn along the way. So I need to see it as much as possible.
I'm not even two yet but my speech therapist told us we need to start putting two adjectives together with a noun because I'm so smart. I thought it was funny because he was trying to say "sticky orange ball" in sign language as an example to mom and dad and Nurse Dawn but he really said "sand old hot". We all laughed. Even me. I laugh a lot. It just doesn't make any noise!
Well, that's about it for now. Thanks for loving me and supporting me. My mom and dad say all the time they can feel the prayers and appreciate the support.
Dear Jakobe Lover's and Supporter's,
Jakobe had a good weekend. Throughout the day on Saturday and Saturday night, Jakobe's health improved significantly. That is, his secretions were back to almost "base line" and his breathing was managed by scheduled meds and nebs alone. Albeit an aggressive med and neb regimen. Considering his improved health, yesterday (Sunday) mid-morning we performed another trach change that included keeping the trach out for a period of 7 minutes. This 7 minute window is significant in the fact that when, not if, Jakobe decanulates (trach comes out) again,we have a longer window of time to respond and thus greatly improving Jakobe's odds of survival; essentially granting 7 minutes to get a trach back in to prevent suffocation from the inability to breathe from his only 1 airway.
Coupling the prognosis of overcoming 2 bacterial infections and another trach change reflecting a successful stoma site revision, we were discharged from PICU yesterday afternoon.
Today per Nurse Dawn's assessment, Jakobe is at "almost base line" and currently taking a nap. 3.5 hours and still napping.
Unfamiliar with medical special needs, Heidi and I could not have anticipated the significant level of care Jakobe would require. Nor could we have fully comprehended the "life and death" implications that comes with a medically fragile and tech dependent child. However, neither could we have anticipated or comprehended the depth of love and bond that comes with his needed extra care. Given the opportunity to be his mom and dad, we are the lucky one's.
Today we rest. We rest our bodies from the rigors of PICU life. We rest our minds in and with the assurance each of you are here with us. We rest our hearts in the promises of the Creator.
Tomorrow we rise. We rise for a day of nurturing. We rise for a day of growth. We rise for a day of living fully into who we are because of whose we are; and that is Christ's.
We invite you to do the same.
Your posts nourish us. Your prayers sustain us. We feel your love. Thank you for keeping us close to your thoughts and deep in your hearts.
Peter, Heidi, and Jakobe
Hello Jakobe Lover's and Supporter's,
Tonight marks night 8 of this PICU journey. Jakobe continues to struggle with excessive secretions. 2 bacterial infections are confirmed to be the cause of the excessive secretions coupled with the increased post-operation secretions. It is still undetermined what antibiotics will be effective against these bacteria strains. The medicine keeps changing and the treatment plan continues to be adjusted.
The excessive secretions that comes with post-operation and fighting the 2 bacterial infections has compromised and delayed the healing of Jakobe's stoma site. Therefore, we will be in PICU until both battles are won. That is, bacterial infection cleared and stoma site healed. At a minimum, will be here until ENT, Pulminology, and us feel we can fight the battle and win the entire war at home. Thus when I asked when discharge might be, we were told "who knows at this point."
Jakobe has been a trooper thus far. However, his patience with being poked, prodded and nebbed countless times per day is wearing thin. All the while hooked to wires and confined to his room. We are very proud of him.
Heidi, Jakobe, and I give thanks for your prayers and good thoughts for healing and endurance.
Dear Jakobe Lover's and Supporter's,
Yesterday Speech Therapy's assessment confirmed ENT 's diagnosis of complete upper airway obstruction. That means Jakobe is completely unable to breathe through his mouth or nose; leaving him with only 1 avenue for air. Not 2 like most. The only source for air is through his stoma site. He is 100% trach dependent.
Also yesterday, accompanied by the ENT surgeon, an ENT doctor and an ENT resident, a respiratory therapist and two nurses, Heidi and I removed Jakobe's trach to test Jakobe's ability to withstand "decanulation" (trach out). Good news--Jakobe was able to breathe on his own for 5 minutes before becoming uncomfortable!
Jakobe continued to have excessive secretions throughout the day and required suction 10-15x/hour to keep his only airway clear. Increased secretions is common post-op and thus we were still discharged and sent home. However, throughout the evening Jakobe needed constant suctioning and began to worsen. Heidi and I called 911.
Jakobe [and I](mom drove the van) rode the ambulance back down to Children's Hospital last night. Jakobe is in the PICU again. Possibly with a viral infection.
Jakobe is out of surgery and recovering in PICU. The stoma site was sucessfully revised. However, after a more thorough scope of Jakobe's cranio-facial anatomy by his surgical team, the severe level of Treacher-Collins syndrome leaves his surgical team, extended care team (speech and OT), and us still unsure about Jakobe's ability to use a speaking valve on his trach. Speech therapy will begin a new round of assessments in a couple days and before discharge.
With deep sincerity, Heidi Johnson and I thank you for your prayers and support. We feel your presence on this journey and value it greatly.
Jakobe will have surgery tomorrow morning to repair & improve his stoma (trach hole) site. He will spend time in PICU and regular recovery. Should be home Sunday or Monday. The result of this surgery is, in the event of decanulation (trach out), he will have more than a 90 second window before imminent death (literally)(the critical nature and fear that is our current reality). In fact, it should improve to "days" and no longer be "seconds". It will also improve his ability to talk with/through a speaking valve on his trach. For all of this we are gratefull and thankful.
We also recognize this is the beginning of the surgery journey; a journey of many many surgeries throughout his childhood.
Your prayers and support is felt and appreciated everyday. Thank-you.
Peter and Heidi
Jakobe's trach came out 2x in 18 hours. Children's ER doctor and us are not comfortable with its fit. Being admitted to see ENT in the morning. We're in good hands. Prayers welcome.
Dear Jakobe Lovers and Supporters,
Today-August 10th- marks one year ago Heidi Johnson and I awoke to a day scheduled to discuss "Baby J" with Indian Child Welfare of the St. Croix Chippewa Tribe . Like most mornings Heidi and I found ourselves sharing routine things like the bathroom mirror and morning pet responsibilities. However, there was a moment that wasn't filled with the mundane.It was filled with foreshadowing. That is, in the intimacy of our 15 year union, privacy of our home, and pangs of the mundane, I shared my belief the pending meeting with ICW was more than an initial consultation into foster care. It was a meeting to discuss our son. After our morning meeting with ICW, Heidi and I drove to Children's Hospital in Minneapolis and met Jakobe for the first time that afternoon.
Today, exactly one year later, through the reciprocal gift of adoption, "Baby J" became our forever son! Baby J's revised and full name is Jakobe Biidaasige Johnson.
We ask for you to continue keeping us close to your hearts and in your prayers. His medical fragility, tech dependency, developmental gains, and our journey as a family continues.Your accompaniment with us is welcomed and valued.
Please enjoy the YouTube video highlighting Jakobe's [and our] Journey of this past year.
Peter and Heidi
11 months ago Heidi and I met with Indian Child Welfare (ICW) to discuss Baby J and the possibility of fostering/adopting him. During that first conversation we asked if it would be possible for Baby J to remain connected to his Native culture through the traditions of the tribe and a strong partnership with Heidi and I.
Considering my Christian theology welcomes the notion God is greater than one religion, cannot be limited to [my] systematics of deity, and quite possibly chooses to reveal God's own self in and through other religions and traditions we posed the question, "If we adopt Baby J, would you(the tribe) be willing to give Baby J an indian name to further shape his identity [as a child of God] and more deeply establish connection to his Native heritage?" Their answer was a genuine and emphatic "yes"!
Paired with a tentative adoption date of less than 1 month away, Baby J, Baby J's nurse, Heidi, tribal members who have become his "wayances"- (an assimilation to the Christian "God parent"), a few very close family and friends, and myself gathered today in the presence of [a] Medicine Man and participated in a Native American naming ceremony.
Thus we gathered, shared in rituals rich in history and spiritual significance, observed smoking of the pipe, and listened with open hearts to Medicine Man speak at length in Ojibwe with a conclusion of hearing Medicine Man announcing Baby J's native name-- Biidaasige. It is pronounced 'Bee-dos-i-gay' and means/translates "light coming".
I am filled with joy 'Baby J' has a Native name and am grateful for a tribe that values cooperation between traditions and religions. Moreover, I'm excited Heidi and I can give Baby J an official name of "Baby J" Biidaasige Johnson in less than 1 month through the reciprocal gift of adoption.
Thank you for your continued prayers and support. It is what we draw on each day as we work towards and then celebrate the developments of a medically fragile and trach dependant child we wholly and fully love unconditionally.
Jakobe and his date for a Lenten play at Living Water-our parent church.
Today day is one of those day's when I get a glimpse of the enormity of God's love and experience the humility of when God chooses to bless me with such precious and immeasurable gifts. ~Peter
One year ago today Jakobe was 3 days old,
exposed and addicted to narcotics, and burdened with a grim prognosis
of being deaf, blind, and unable to breathe on his own for the rest of his life.
Through caring nurses and staff at Children's Hospital of Minnesota and
dedicated staff within the Indian Child Welfare unit of the St. Croix Chippewa Tribe,
Jakobe began his journey of healing and resilience.
One year ago Heidi and I began praying for "Baby J"; a baby homeless and with little hope. Six months later Heidi and I learned his name, met him for the first time
and said "yes" to the great honor and privilege of being his mom and dad.
Today, one year later, Jakobe's prognosis overflows with hope! Jakobe has a forever home and family, lovers and supporters, clear vision, excellent hearing
with bone conducting hearing aids, and breathes room air.
Thank you to the dozens of family, lovers, and supporters who came
and shared a day full of hope, love, and tenacity.
Moreover, thank-you to YOU, the one reading this.
Thank you for your continued prayers, financial support, and encouraging words.
All are felt deeply and appreciated greatly.
Happy Birthday Jakobe! We love you!
Thursday was check-up day for Jakobe at Children's Hospital & Clinic... We found out that Jakobe is now 18lbs and thriving! Jakobe is now officially on the "big boy chart" for growth; leaving the preemie growth chart behind--right on time! Jakobe is a happy, healthy 11 month old "big" boy.
'You feel our love through touch. You see our love by action. Today for the first time you hear our love in words. "We love you, Jakobe"; words of our heart spoken aloud.
Today we thank God for our Jakobe and his ability to hear with bone conducting hearing aids.' -Peter Johnson
Last week, the Johnson's went to Children's Hospital & Clinics where Jakobe was fitted with his new bone conducting hearing aids.
Dear friends coming together from all over the nation to learn, eat tacos, and love on Jakobe. Okay, mostly to learn.
Except Nicole Moore Eastwood-she loves babies. Especially babies with Treacher-Collins Syndrome that smile, flirt, and steals a Floridian's heart!!
A trip to the doctor's office:
Sitting in the waiting room at Children's Hospital and who walks in?
A classmate and old friend that I haven't seen in 20 years.
A welcome yet unexpected blessing on Jakobe's Journey!
Great seeing you Mitch Thomason!
An early dinner:
After an appointment, the Pour House in Siren, WI was the perfect place for an early dinner with the loves of my life!
Heidi Johnson's and my heart are full....now our tummies and Jakobe's!
Wonderful Christmas Blessings:
Every Christmas following her birth, Heidi Johnson received a dated ornament from her parents highlighting a significant event within that year. Since the passing of her parent(s) in 1999 & 2005, I have been honored to carry on the tradition for her. This year, it is our privilege to extend the family tradition to the next generation.
Jakobe received a dated 'mobile' ornament. The mobile brought comfort to our Jakobe during his 7 month stay in the hospital and assisted with the transition into his forever home.
Heidi received a dated 'mom' ornament; affirming her new title and role and signifying a lifelong dream that has come true in 2016.
Circled around the crib, holding hands with our Jakobe this Christmas night and overwhelmed with emotion I asked Heidi, "What do we say?". With eyes and gentleness of a mother, she replied, "thank you, thank you Lord". 'Amen' my dearest love--Amen.
Chicken Coop Church is happy to announce:
Jakobe is finally home with Peter & Heidi.
A few months ago, Chicken Coop Church added a page to it's website, that page was titled:
"Bring Jakobe Home"
(While this page is no longer in the menu, you can still view it by clicking the link above.)
"Bring Jakobe Home" has been replaced with a blog. A blog titled: "Jakobe's Journey".
Here Peter & Heidi will share photos & some of the cute little things Jakobe does and there will also be a few updates on his medical condition. As many of you reading this already know, Jakobe was born with a condition called: Treacher-Collins Syndrome. He will have to undergo at least 4 surgeries in the next 4 years or so. His team of doctors say that by the time Jakobe is 6 years old that he'll be just like any other 6year old little boy; playing in puddles and sticking frogs & worms in his pockets.
Jakobe is now 8 months old; his sweet toothless grin makes everyone in the room smile too. He absolutely loves bath time & getting his gorgeous head of thick, wavy hair combed & brushed. Jakobe has learned that he can blow bubbles with his own spit and he practices this new "skill" daily.
Please check back often for more updates.
God is Wonderful!