Two years ago on this date our Jakobe came home. He was 7 months old. Children's Hospital was the only home he ever knew. We are still over the moon in love, nervous and scared but more confident now, and forever grateful for the care Nurse Heidi Voss gave as his primary and the love she continues to show.
Beautiful day! Beautiful faces!
CCA (Children's Craniofacial Association) picnic in the Twin Cities today.
Carmen Burleigh is a wife to David, mom to Anika (holding other honorable titles), and has Treacher-Collins Syndrome. She is kind, loving, and empathetic to the lived realities of craniofacial differences.
Most of all, she is an inspiration to live fully and accept wholly.
Meg Mathern Donahue is a wife to Patrick and mom (also holding other honorable titles) to Juniper and Cormac, her biological son with Treacher-Collins Syndrome. She is also kind, loving, and empathetic to the lived realities of craniofacial differences.
Most of all, she gives all of us permission to be vulnerable in the expression of our feelings of concern and celebration.
Heidi Johnson is a wife to Peter and mom (also holding other honorable titles) to Jakobe, her adopted son with Treacher-Collins Syndrome. She is also kind, loving, and empathetic to the lived realities of craniofacial differences.
Most of all, she is the encouragement for others to say "yes" and the manifestation of spiritual gifts that lie within.
Dawn Ogilvie is a nurse (also holding other honorable titles) to Jakobe, her patient, play-mate, and favorite "little man". She is also kind, loving, and empathetic to the lived realities of craniofacial differences.
Most of all, she is the nurse that cares beyond her license and nurtures beyond her shift.
Within their collective stories, 1 of these women was given life, 1 gave life, 1 chose life, and 1 sustains life. Together, they give life to a beautiful humanity and bring life to a community with differences. Blessed are the children in their charge.
Gotcha Day 2018!
2 years ago on this day, 9/5/16, Heidi Johnson and I said "yes" to a life of blessings beyond measure.
Please allow us to enter into your day by sharing how we spent ours. We spent the day celebrating the day Jakobe was birthed from Heidi's heart.
We began our celebratory day by making memories at Como Zoo in the morning; followed by our weekly feeding clinic appointment and a trip upto the 3rd floor to drop off flowers, pictures, and share lots of hugs with many of the nurses who cared for Jakobe the first 7 months of his life. Especially his special Nurse Heidi Voss who loved him from day 1.
Tired from all the fun that was had and the hugs that were shared, we came home for Jakobe to take a nap and soak up some Nurse Dawn Ogilvie snuggles.
Realizing darkness was going to prohibit us from our planned evening at the park swinging and sliding, we opted for an evening walk around the neighborhood. I'm glad we did. We met up with our neighbors Melissa and Ted Trust and their 6 week old son and fur child Nala. It was heartwarming to share with each other the joys of new parenting and the mutual experience of current and continual fatigue, along with limitless Nala kisses for Jakobe.
We concluded our celebratory day with cake and ice cream; thankful that Jakobe continues to improve his oral skills and thus has the ability to enjoy ice cream.
This day, and the previous 729 days of pure blessing have been made possible by the caring hearts of many. The list is long, and will be in this post too. We begin by lifting up and sharing our gratefulness to Rachel O'Brien for advocating for Jakobe as his Gaurdian Ad Litem and following her instincts that led us to him. Moreover, we are thankful for Melissa Fowler, Liz Lowe, and the rest of the tribal staff that welcomed us into their midst for the securement of Jakobe's well being in the now and into the future.
Nurse Heidi, Margo Kallio, and many others from the Infant Care Center on the 3rd floor that cared for him, trained us in best care practices, and encouraged us to act on the courage from within.
Our faith communities; Crystina Smith and the entire Chicken Coop Church family. They believe we are all God's children belonging to the family of Christ and have a place at the table. My mentors Pastor Ned Lenhart and Pastor Doug Olson, both parents of adopted children, and their congregations Living Water and Yellow Lake Lutheran. Bread of Life Deaf Lutheran church; for welcoming us into their midst on Sunday mornings and supporting our growth in deaf ministry and our learning of ASL. Heidi S Hansen for caring for my flock and preaching the good news of Christ in my absence. Bishop Laurie Skow-Anderson, former synod staff John Sutherland, and churchwide staff Ruben Duran and Anna-Kari Johnson; for their support in healthy interweaving of family and ministry.
Our seminary cohort family; specifically Nicole Moore Eastwood, the unofficially group appointed leader of the untamed pack. And my dear friend and proverbial fishing buddy, Chad Rademacher.They see beyond the colleagial. They minister to the heart of the family.
Nurse Dawn Ogilvie. A caring heart whom has become like family and is a profound nurse, nanny, teacher and a valued mainstay in our family's life.
Auntie Susan Yarno. Jakobe's biggest cheerleader, my treasured sister-in-law, and Heidi's best friend and anchor.
You. It is your love in action, prayers of concern and contentment, messages of encouragement, and emails of affirmation that bring a richness of possibility to each day.
Therefore it is my truth that considering the ability of the human spirit to act so boldly and to love so strongly, and the capacity for a baby to attach so freely and deeply, the fullness of love as family is greater than the sum of parent plus child; it is the sum of caring hearts in perpetual expression of Christ's love.
Thank-you for being your unique expression of Christ's love in our life and the lives of others. You are beautifully made.
Jesus loves you!
Dear Nurse Heidi Voss,
When I was a newborn and unable to breathe on my own, nurses and doctors surrounded me, but none of them I could call my own. Several weeks later when my time in NICU was through, they wheeled me into the ICC, hoping someone would see me through. Small enough to fit in the palm of your hands, you bent down and whispered into my heart--"I have a plan."
Little did I know your plan was to more than nurse me into breathing room air on my own. Your plan was to love me and nurture me until I found my forever home.
In a few short days I will celebrate 2 years since the first time meeting my mom and dad; it was you who just before I met them whispered, "this is part of my plan."
The first day they came you bathed me, you groomed me, you even put on my Wednesday best. Oh it felt so good when they held me tightly against their chest. It must have felt good to them too, because they told the tribe they want to be the ones to wipe my pooh.
9 weeks later Mom and Dad said they were almost ready for me to come home. They just needed to buy a van. You whispered to me once again, "this is part of my plan."
1 year after I met them, exactly to the day, you came to my adoption day. You shared with everyone you're glad I get to stay, but asked when do I get to come and play? Mom said we can go to the city, we have the van. You held me close and whispered to me, "I know, it's part of my plan."
Another year has passed and with it came some PICU stays; you came to visit me but I was too sick to play.
Now we live in the city, only a few miles from you, and that makes me happy because I've really missed you.
So I want to take this moment, to say "thank-you", because I get to celebrate another year with my mom and dad wiping my pooh; and Nurse Dawn Ogilvie seeing me through.
Most of all, thank you for coming over today, it was fun just to play; but somehow, I think this special play day was part of your plan anyway.
I love you Nurse Heidi,
Hi! It’s me, Jakobe!
I’m really excited to let you all know that we moved to Luther Seminary in St. Paul, MN. My mom and dad say it was the easiest hard decision to make. They said because I am only 2 years old and already doing 3yr old things, I need to be closer to Children’s Hospital for more specialized things like speech therapy that includes learning how to eat solid foods with my mouth and stuff. I guess it is kinda weird that I am completely deaf without my hearing aids, hear perfectly with them, but still can only talk by using sign language because no air goes up past my voice box.
A couple weeks ago I was really happy to be only 15 minutes away from Children’s Hospital. In the middle of the night I was having a hard time breathing, needed suctioning and when they suctioned me, out came blood. It scared all of us and so we went to the ER in the middle of the night. I didn’t have to ride in the ambulance and I was able to go home in the morning because I lived so close. Although this summer has been pretty hard for me with my lungs and my trach, I am still growing and developing a lot. The doctor specialists and therapy specialists keep telling me and mom and dad how smart I am. I’m glad learning and growing isn’t a challenge I have.
Also, I want everyone to know that my Nurse Dawn Ogilvie loves me so much that she and her family are moving closer so she can still be my nurse. I love her too! She takes real good care of me and my mom says all the time that besides me, Nurse Dawn is the greatest thing she got since she said yes to me.
My dad is still going to be the pastor for Chicken Coop Church so I will still get to see some of you on Sunday nights. I like living on Luther Seminary campus because I get to play at the park close by. Please remember that I love all of you very much!
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