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Grandma Donna Wrote,

A email from Kieva,

Email I received 11/25/ 2025

I copied a portion of the email and pasted it here. 

I wanted to let you know that right now my baby and I are still in the PCICU. He had open heart surgery about a week and a half ago. He did pretty good for a bit, then crashed. He was intubated and they found he had some sort of pneumonia but they don't know why. All viruses he was tested for came back negative. A few days later he was off of the vent but that only lasted a few days. 

Kieva gave me permission to post a photo of Jacob.

Please help keep Baby Jacob, Kieva and their family covered in prayer through this difficult time. This photo was taken before his heart surgery.  Grandma Donna 

Abba, we ask that you cover this family with your comfort and healing. Please give them courage and strength. Bless the doctors and nurses caring for them and grant them wisdom. Amen. 

Absolutely!  What a difficult time for baby Jacob and his parents!

As we in the U.S. give thanks this week, let's remember this precious baby and give thanks for him, for his medical providers and his family as well as prayers for comfort, healing and meticulous, loving care.

He is so precious. I will add him to my morning and evening prayers. May God give you strength and peace as you travel this valley.

Kieva, you, baby Jacob, your family, and the entire medical staff are in my prayers.

wat een moeilijke tijd voor hen allen. En ja gebed is een krachtig wapen in deze strijd. We zullen hen zeker gedenken in onze gebeden. Veel liefs uit Nederland

 @Kieva I am sending prayers for you to stay strong during this difficult time. Baby Jacob, you are in my prayers this evening and every day. May Jacob be healed by a loving and caring team of doctors and nurses. Amen

praying for precious baby Jacob, as well as his mama and all the medical staff that God would give them wisdom and answers. Praying for strength to endure this excruciating time of waiting and peaks and valleys. Love, prayers and hugs. 

I am praying as well.  

You are certainly in my prayers for you, Jacob and the rest of your family. It’s hard to understand why we have to go through these challenges. But know that The Lord will always be beside you lifting you up. His Grace and Mercy are all encompassing. He will never give us more than we can bear. That’s His promise in the Bible. I’m praying that He will give you strength, wisdom and courage for each new day. 
May His blessings follow you everywhere's you go. 
When you need anything go to Him in prayer. He will always be there beside you every step of your journey. 
God bless each one of you and know that others are praying for you as well. 

Bless him! Please know that many doctors involved is a good sign; they want to give him the best chance possible. Constant attention from nurses, I see that as a sign they believe he will make it and therefore  are putting everything they can behind him.

Awww, bless him. I too, am saying a special prayer for little Jacob and his parents, who are dealing with this anxiety and worry. I think if the doctors are optimistic, there is the best chance that he will soon be going home. In any case, special prayers are being said. 

prayers!!

In my experience medical staff keeps optimism on a short leash so if they're showing it then they probably have seen similar babies do ok with the prescribed regimen. 

I had a nurse friend years ago who would often be assigned to sit by a baby who was most fragile and just watch.

Jacob is so precious!!

I will also being praying  for baby Jacob and Kieva. May God give you both strength and healing ????Please keep us updated . 
May you all also have a wonderful thanksgiving this week. 

Heavenly Father, 

You knit Jacob together in his mothers womb, there is nothing about him that is hidden from your eyes. We lift Jacob before You, asking for your healing touch. Give the Dr's eyes to see what they need to see. Give them wisdom to assist with Jacobs healing. Direct their thoughts to the correct answers.  We know that nothing is impossible for you.

We also lift up Kieva, Father, give her your peace  knowing that you have her son in the palm of your hand and will carry him through this valley of the unknown.

And we thank in advance for the answered prayer. 

In your Sons' blessed name....... AMEN

What a wonderful harvest!  Seems a lot more meaningful coming from your own garden!  Happy Thanksgiving to you Grandma Donna and family and to all here.  Praying especially for Kieva and Jacob and family, raising them up in prayer, thanking God for the wonderful people He put in place to work around the clock to heal Jacob.  We look to God during turbulent times, and thank Him for His gift of life and peace through Him.  God is in control.  Praying also that Jacob will be able to come home soon.   In Jesus' name, Amen.

Deep and loving prayers for baby Jacob and Kieva, family and medical staff.

Lisa W in her prayer spoke of Jacob being held in the palm of God's hand.  I have heard it phrased  in maybe a hymn as the "hollow of His hand".  That suggests a very safe place to be.  When you think of the palm of someone's hand you see a flat outstretched surface.  When you think of the hollow of a hand you see a hand cupped forming a "hollow"  in the middle, the thumb curves around on one side and the four fingers  curl around with one creating a wall on the other side and the other three fingers curve over the top forming sort of a shield.  All in all, a very  safe place to find yourself----- shielded from harm on all sides. 

Take care and stay optimistic.

Victoria

Dear Kieva know that our Abba (Father God, Creator of all things) knows you and your precious son Jacob by name. I pray for you both for healing, comfort and strength.  I am truly sorry you are going through this time of uncertainty.  Nothing hurts a Mama’s heart like not being able to protect her child.  You feel powerless’ I know.  I am praying and will continue so long as needed.  Much love and warm hugs.
Sara

Thank you everyone for your prayers and thoughts and thank you Donna for posting this. I had not expected this when I emailed you earlier. This morning was really hard for me. Last night was filled with anxiety. All our ears were tuned to the monitors for the first signs of his vitals dropping. The docs and nurses had their responses down so well that they'd swoop in seamlessly, bag him, and pop his vitals right back up within a couple minutes. But the fact that that had to happen over and over again was really hard to witness. My hopes were really low by morning. I have a bit more hope this evening. 

Today he got his heart surgery stitches out and the scar looks really good. I am shocked at how good it looks and expect it will hardly be noticed in a few years.  Also his lung is no longer deflated (turns out it wasn't an actual collapse. I didn't know there's a difference between a collapse and a deflate) and his hands and feet have color to them and are warm now. So we had a few things that brought hope back. I hope to see him awake again in a day or two and maybe off the ventilator by next week. 

 Jacobs Down Syndrome and rare gene mutation (MYH7) is making treatment an extra challenge for the docs. As far as I am aware there are no documented cases of anyone having both of these diagnoses together.  Both of which affect his heart in different ways. He had a complete AV Canal defect from the Down Syndrome and thickening of the septal wall (particularly the left side of his heart) due to the gene mutation. The treatment for one can compete with the treatment for the other if I understand right. Unfortunately these docs can't look back to other cases like this one for reference because there simply aren't any. There are a couple similar cases but not with this documented gene mutation. So I know he brings extra challenges which raises my level of concern. 

Thank you all again for your prayers. These doctors in particular need them so much. God knows the structure of his heart and the plans He has for Jacob. I'm praying for strength to accept any answer that comes. 

God bless

Kieva, you are the mom that God wanted Jacob to have. This is the journey He wanted you to have together. My prayers for you both & the rest of the family and the staff. 

Praying for your precious little boy, and for you dear mother. xxxx

What a lovely reminder to give thanks for all of our harvests this year. Our harvest of knowledge about 1930 that helps us make the most of what we have, too! :) 

Kieva A -- What wonderful care Jacob is receiving! They really know their job, don't they? Only God knows tomorrow, but I think the medical staff is sharing their confidence with you. :) I pray that you are released from anxiety. You really love baby Jacob, and of course you do! :) Big hugs to you! 

Sending thoughts and bright blessings across the sea for baby Jacob and his family, such a precious soul.

Happy thanksgiving to our US neighbours, I hope you have a good time celebrating with your loved ones

Sending prayers for Jacob and his family.   

Victoria W,

The saying of " God  has you in the palm of His hand" comes from the Bible, Isaiah 49:16

I am sending prayers to Baby Jacob and Kieva.  His medical team is watching out for him and it is encouraging to hear his progress.  

Happy Thanksgiving to those celebrating.

I've prayed for sweet little baby Jacob, your family, and the doctors to have the skills and wisdom they need.

Complete healing.

In Jesus Precious Name.

Baby Jacob is so precious. He reminds me of my Baby Harry, now 12 years old. I've spent many fearful nights in PCICU, Kieva. It's hard. It's frightening. But, you and Baby Jacob are so strong. 

My son has Hypoplastic Left Heart, which required 3 open heart surgeries. Each one was harder than the last. I remember the incessant beeping of the machines, the pitiful whimpers of pain, and the chest tubes. IYKYK. Those chest tubes are the worst. 

Even though he's 12, I never stop worrying about him. But you do learn to cherish every moment. They're our most special gift.

Melissa: Bless you, too. And I hope you and your boy Harry have a lovely Thanksgiving.  

Thank you, Claudia.  A very happy Thanksgiving to all who celebrate here!

I wish Jacob, Kieva, and their family all the strength and hope in the world. Everything will be alright!! 

I myself had two babies in intensive care for months at a time and know the fears and doubts, but also the joy over every small improvement.
Living in Kyiv right now certainly makes the situation much more difficult than it was for us back in Germany.

My thoughts are with you.

Thanksgiving plays almost no role in Germany. There are services in churches, but it's not a family holiday. Families here get together at Christmas and Easter. Then there are regularly traffic jams on the roads, and the trains are so crowded that many people have to stand in the aisles for long stretches.
That's why our family decided that we always meet shortly before or after the holidays. It's more relaxed for everyone and brings just as much joy.
We'll probably roast a duck for Christmas if I can get one cheaply. Since I use everything and boil the bones later, one bird is enough for 8 to 10 servings.

We normally buy beef for Christmas. During good years, we'd roast a tenderloin. Considering the price of beef this year, we decided to buy an extra turkey at Thanksgiving and freeze it for Christmas. I'll buy a small ham for my daughter who doesn't like turkey, and all will be well. 

My husband grew up eating turkey on Christmas, so no hardship for him. We both grew up eating Pierogies on Christmas Eve. Since they're easy to make and cost effective, we'll continue that tradition this year.

I just don't see the value in spending so much money on one meal. I looked into buying a quarter cow, but I want to sample their meat before I make such a big investment. Sometimes, I don't care for the taste of grass-fed beef.

My dad used to complain about the commercialization of Christmas when he was alive. This was back in the late nineties! I can't imagine how he'd feel these days. I had a nice talk with my 12 and 16 year old. I told them they will get more practical gifts this year and maybe less than past years. I just don't agree with the senseless spending and never ending clutter. 

I meant only to copy the quote regarding your dad (in the nineties). I heard my parents say that in the seventies and eighties! It is true though, that Christmas and other holidays too, are seemingly competitions between people and corporations to go buying a lot of stuff. On the news, one rarely hears about a nice service or a special presentation of music but we always hear about how much spending is being tracked. Just last week I heard that Christmas shopping was down this year due to the tariffs affecting goods. I also remember my mum being astonished at goods going on sale in September in America, whereas in her country Christmas was apparent two weeks before the actual date! Then, shop windows and bakeries and the like would be decorated beautifully for the coming holiday. But yes, I think that too much emphasis is on gift-giving (not that we should not have any!) instead of the spirit of the event. Although actually we should keep the spirit of Christmas alive all year round! Here at our house we give one gift and have a nice dinner. We usually have a turkey and dressing, and a choice of apple or pumpkin pie for a treat; we don't eat too many pies and cakes anymore. We have no children; but any gifts I give outside the home to special people are well considered and often home made. I don't agree with senseless spending either.

I meant to wish everyone a Happy Thanksgiving.

Happy Thanksgiving Grandma Donna and Charles and prayers for precious little Jacob's healing. Please strengthen his parents during this very difficult time too, amen ~ Linda x

I am just now reading this article and Kieva’s post regarding little Jacob. I am praying for him and your family. May the Lord bless him and keep him in His loving care. May the Lord comfort you, Kieva, and provide rest and hope. 

I'll be praying for little Jacob, his mother, and his doctors this week.!

My husband and I have such awful arthritis that I sometimes can't shop. Today I placed a delivery order and a very kind young man brought our groceries. I told him they are fortunate to have young people like you and he told me, "ma'am this is my second job. I'm just trying to make ends meet for my family." Our young are struggling. My husband and I talk all the time about how our country resembles the fall of the Roman empire. We live like you, simple and free. I would love to sponsor young people who need to know how wonderful life can be.

Yes.  Linda R this is America today. It is a shame.

Grandma Donna wrote,  Update on Baby Jacob

Kieva has emailed me two updates on Jacob.  

This update was after I did the post.  They tried to take Jacob off the ventilator because he was doing so much better. His color was good and his feet and hands were warm. But after a few minutes of the tube being out, his oxygen saturation started steadily falling.  They didn't know what was going on at first. They said his heart and lungs did fine but they had to call Code blue on him and an emergency re-intubation followed. The last I saw as they were intubating him, his oxygen saturation fell into the teens and the room was filled with doctors and nurses. I left the room as soon as I saw his saturation levels falling steadily out of the 70's because I knew it was starting to free fall and I needed to be out of the way because Code was about to be called again so I stood outside of his room and watched from there. As they were re-intubating they found that his throat had swollen shut from the trauma of having the breathing tube in. Adults can handle a little bit of swelling that can happen after being intubated but babies don't have much room to work with in their small airways. The comforting thing to know is as stressful as that event was on him, his heart and lungs did well. Had it not been for the swelling he likely would have done beautifully without the breathing tube. If this had happened last week it would have been far worse. The stress of docs and nurses simply talking around him or touching him was enough last week to send him into a pulmonary hypertension crisis. At that time they had to give him extra sedatives just to change his diaper. 

His oxygen saturations have been a little lower today... Low 90's to upper 80's. They think he might have aspired during the attempted extubation so they have him on antibiotics again as a precaution and are suctioning his lungs frequently. He's on steroids to help his throat swelling. He's getting X-rays, Echos, labs, medications, EKGs, and ultrasounds almost faster than I can track. I track for his Beads of Courage. He has earned every bead I can count and then some! They said tomorrow or the next day they will try to extubate again but this time they want the Ear Nose and Throat doctor there when they try it. They have him sedated but are trying not to sedate too much. Sedatives contribute to dilerium which he battled last time he was intubated. But without the sedatives he gets upset and this doesn't help his oxygen saturation so it's a delicate balance. I didn't even know babies could get ICU delirium until now! 

A new update so we all know what prayers are needed

Yesterday they attempted to extubate Jacob again. It went a little smoother than last time but ended with the same results (13 people docs of various expertise, nurses, respiratory therapists... all crowded in his room as they re-intubate). They want to send him into the OR now to have the ENT doctors take a more thorough look at his airway. He will likely get a CT scan also to see if he has any deformity of the airway. My guess though is he has a floppy airway from his down syndrome and swelling and still a little bit of lung issues (his lung deflated again this morning) that are all contributing to this. One doc says that if they don't find a deformity of the airway that she thinks he deserves another chance at an attempt at extubation. But we need to let him rest longer inbetween tries than last time. Because if this next attempt fails, a trach breathing tube is the next step. 

Sending love and prayers to Kieva and Baby Jacob and her family

Thanks for this update Grandma Donna. It is much appreciated; and I will keep up intentions for him.

Thank you for the updates. ????????

I put in praying hands and it came up question marks. I will be in prayer for them. Technology and I are not friends.

Thank you for the updates; hoping and praying for a good outcome next time.  There is a lot of healing power (for mother and baby) in baby simply being able to cuddle up against Mom's skin; I hope they get that opportunity soon.

Kieva, 

I wanted to also invite you to the Chanukah dinner and service at the synagogue I attend. It is about 30 minutes outside of Baltimore on the evening of December 19th. I'd be happy to drive you if you feel like the company. 

Sharon

nemesis4t4@gmail.com

410-707-9997

Hello everyone,

Thank you for all your prayers. I wanted to update everyone. Jacob is still on the ventilator. I don't know if it's from aspiration but last week he was diagnosed with sepsis. It was another rough week. At one point the surgeons started talking about a possible heart transplant but I think that's before they realized it was sepsis we were dealing with. Though I am not entirely certain that the heart transplant isn't going to be in his future. 

After Jacobs heart surgery the thickening of his septal wall (the separate genetic issue) got considerable worse all of the sudden but then it stopped getting worse. They are confused because that's not the usual course that issue would take. But this has restricted the area in the left side of his heart so that it can not contain as much blood to be pumped. This makes oxygen exchange in his body harder (if I am understanding right). The usual course for this issue is it steadily gets worse and continue to get worse if it's going to. They are doing further genetic testing to try to figure out what's going on..I'm glad it's not getting worse but I didn't know until this last week that it had gotten worse. Maybe the docs were speaking openly about it and thought I understood but I didn't. But considering he has two conditions over lapping each other in a way that's never been documented before, it makes sense to me that Mr. Jacob is plotting his own course. Being the mother of a son who is bound and determined to cut his own trails is not an easy thing! Add to that sepsis and, well, it was an incredibly hard week. Palliative care was brought in to help me make the tougher decisions if they arise. This rollercoaster has been one of hope and despair and hope.... 

This week, Jacob is doing better. I am coming to the conclusion that heart transplant or not, this is going to be a long road of recovery in the hospital. I have got to start planning on how I can see my family more while he is admitted. I was thinking we just need to get past his big heart surgery and then we can go home and the worst would be over. But that is not the case anymore. There is no definitive end in sight right now and continually not seeing my family is not a long term solution. It's so hard to leave him when he's in a very fragile state. But then it's hard to leave him when he is doing better and awake and able to interact! But I had to leave him this week since I am confident he's in a stable place right now. So Monday evening I came home. I got to hug my daughter and see my whole family. I have been home since and will go back tomorrow afternoon. My husband needed more help this week at home due to a busy season at work and I was desperate to see my family again. I don't think I've spent a night home since he was admitted this time (November 1st). 

I am going back tonight because tomorrow they want to take Jacob into the Operating Room and try extubation him again. This was their plan a couple weeks ago before he got sick again. They want to send a camera into his throat to see what's going on in it that might be causing issues. I want to be there to see him through all of that. What happens in the OR on Friday will determine the next course of action to be taken. Hopefully we are able to get him to the OR this time. I will try to update again when we know more. Thank you all again. 

Today, Jacob was successfully extubated, while in the operating room, to a bipap machine. I am so relieved to see this. Hopefully over the next couple days he will be off the bipap and onto a high flow cannula. Step by step coming closer to breathing on his own. 

The doctors are still watching his heart closely. There is one marker in his labs that keeps coming back more and more elevated every time labs are taken over the last couple of week. This could mean a number of different things but heart failure is high on the list. While we celebrate one victory we watch tentatively another front.

A couple weeks ago we were hoping to arrange it so that I could hold Jacob. Unfortunately , something always happened that prevented me from getting to do so.  I haven't held him in weeks! In fact, it was the day before his heart surgery on November 12th when I last got to hold him. I do hope I get to hold him in the next couple of days.