Saturday, January 21, 2017

Gavin's Story

"Short List of complications"
Diagnosed with VACTRL Association
TE Fistula (Esophagus/stomach not connected & esophagus attached to trachea) (repaired 12/17/12).
Tethered cord (repaired 5/9/13)
Fluid on the spine
Heart Murmur (benign)
Menigocele on skull – leaving a whole in his skull (Spina Bifida) (repaired 5/9/13)
Vertebral Anomaly – (Semi-segmented hemi-vertebrae) (repaired 11/4/14).
Seizure disorder – (last seizure July 2013)
Recurrent (4) Pneumonias due to tracheomalacia

Our little hero was born on December 16, 2012 7 weeks early. He was 4lbs 8oz and 18.5inches long. From the first second he was a miracle. My placenta abrupted – had we not been in the hospital he probably wouldn't be here. On day of life 2, he had surgery to connect his esophagus to his stomach. He was under a paralytic and he had a feeding tube for the first couple of weeks, soon after that we were able to hold him for the first time. We spent a total of 40 days in the NICU at the University of Minnesota Children's hospital. Due to the TE Fistula repair he had GERD (extreme reflux), was on a heart/apnea monitor for a month after we got home and had to be in a Danny Sling while he slept to prevent aspiration.

Before he turned one, he had 3 major surgeries - TE Fistula repair (Disconnect trachea from esophagus and attach the esophagus to the stomach), Tethered Spinal Cord repair, and Menigocele Repair (spinal fluid came through a hole in the skull) and was hospitalized over 5 times for MRIs, illnesses, and other tests. He suffered two seizures in the summer of 2013, and was put on medicine to regulate them.

In 2014, he was hospitalized 4 times for serious pneumonias. He underwent multiple tests to determine the cause, and it was determined to be caused by his tracheomalacia (soft trachea). He currently is taking two steroids twice a day to strengthen the trachea. Gavin was in Physical Therapy on a weekly basis, and Oral (feeding therapy) every-other week. In November, Gavin underwent surgery at the U of MN to remove semi-segmented hemi vertebrae in his lower back. It was by far the most pain we have ever seen him in, and the hardest part was not being able to take it away.

As time goes on, Gavin is getting stronger and stronger. This winter we were thankfully pneumonia-free, (thanks to his compression vest treatments) and managed to stay out of the hospital! We also got great news that the hole in his skull is almost completely closed, and the fluid on his spine is going down. Gavin has thankfully been seizure-free since July 2013, and is no longer taking the seizure medicine. Our trips down to the University of MN Children's are becoming less frequent, and we rejoice in that. However, we are beyond grateful for the love, care, support, and elite medical care we have received there.

Each day is a gift. No one ever expects to have a child with medical complications, but God has given us the strength we need to physically/mentally handle it. We find joy in the simple things, and because of this journey, I can honestly say that I haven't taken any moments for granted with him.

Our Mission:
It is out of our experience with Gavin, and deep passion for the families in the NICU, that we founded LifeSong Ministry. Our time in the NICU was a roller coaster, and I know many who have been in the same position will agree. The good days were really good, and the bad days seemed to outnumber the good. However, we couldn't have come out of there unchanged.

We were in the NICU over Christmas so we received a number of sweet gifts from previous NICU families. Many of them blessed our hearts so deeply, and encouraged us to keep going.

The heart of our ministry focuses around providing support through prayer, and care packages. Each care package contains handmade blankets, hats, water bottles, and many other items that often get left at home when the unexpected happens. In our case, there wasn't time to prepare for our time in the NICU – it just happened, so we try to provide families with items that are a necessity or will bring comfort.

Thursday, October 27, 2016

Caleb's Story

Written by Caleb's mom - Emily

Psalm 5:3 “In the morning, LORD, you hear my voice; in the morning I lay my requests before you and wait expectantly.” At 20 weeks into my second pregnancy, I was diagnosed with Placenta Previa.  The odds of it moving were high but 12 weeks later, another ultrasound showed that there hadn’t been enough change for me to deliver safely. We were directed to meet with a specialist to schedule a c-section for no later than 38 weeks gestation.

We wouldn’t even make it another 2 weeks before things got very scary very quickly. At 34 weeks, having had no bleeding yet, we were cleared to travel home (about 8 hours) for my brother’s high school graduation. We had hardly been there 24 hours when I had a large gush of blood at 1am. My parents rushed us to the closest local ER and from there, I was taken by a helicopter life flight to a larger hospital that could accommodate my situation of being only 34 weeks along. I received steroid shots for the baby’s lungs and three days later, things were calm enough for us to make the 8 hour trip back home with my sister along to stay with us should another emergency arise.

The next morning at home, we woke up for breakfast and I had another gush of blood that found its way quickly to my feet. We rushed off to the hospital again, leaving my sister with our toddler at home. After monitoring all day, continued spotting, and conversations of what lie ahead for us should the baby be born anytime soon, the bleeding picked up once again and the doctors decided to go forward with an emergency c-section before things had the chance to take a life-threatening turn.

Caleb Jeremiah Olson was born to our family that night at 34.5 weeks gestation, weighing 5lbs 1oz. His lungs were developed enough to not require surfactant, but he had enough troubles otherwise including tachypnea (abnormal rapid breathing), bradycardia episodes (heart rate drops), failure to regulate temperature, and inability to nurse due to his breathing and heart problems.

Due to Caleb’s unstable breathing and heart rate, I was not allowed to hold him for 46 hours and for the first week of his life, he could only be held during care times to minimize bradycardia episodes due to too much stimulation. Caleb was a trooper though, and we were continually surprised at his progress. At 4 days he no longer needed the CPAP, at one week he graduated off of his cannula, and soon after, he was allowed to try breastfeeding. As he proved himself strong enough to nurse, gained weight, and transitioned out of tachypnea and bradycardia episodes, we got closer and closer to discharge day.

Life in the NICU was very stressful on our entire family. While I spent my days and nights at the hospital, pumping around the clock and spending as much time as was allowed holding Caleb and participating in his care times, Nathan became Mr. Mom at home to our toddler son. We both felt way in over our heads and totally at the mercy of our Lord for strength to make it through each exhausting day. Our daily conversations largely composed of NICU jargon regarding TPN numbers, cannulas, CPAP levels, oxygen support, NG tube feedings in mL, bradycardia and tachypnea episode counts, and how many grams Caleb gained or lost that day. I grew to know the meaning of each beep, alarm, and machine noise, and came to deeply love the nurses who so carefully and intentionally cared for our son.

When it was all said and done, Caleb spent 13 days in the NICU. He came home at a weight of 4lb 13.7oz. Today, he is 5 months old, weighs a whopping 18 pounds and is a delightful character, full of laughs, squeals, and giggles. He loves his brother unashamedly and we couldn’t be more in love and more thankful. Through it all, we learned just how precious life is, how fortunate we are to have doctors and nurses who can care for such little lives, and we learned just how crucial it is to lay our requests and burdens at the feet of Jesus and then truly leave them there, waiting in expectation to see just how He will work.

Thursday, January 22, 2015

NICU Carepackage Items

Many people ask what they can do to help families in the NICU. Care packages are a great place to start!

Each care package includes the following items:

  • Handmade Blanket (30”x30”)
  • Knitted/Crocheted Hat
  • Hand Sanitizer
  • A Board book parents, grandparents, and other visitors can read to their little miracle. It is a big way to connect with their baby.
  • Healthy (Nut-free) Snacks.
  • Travel-size Unscented Lotion. Never-ending hand washing is a major dehydrator for the hands.
  • Chap stick.
  • Reusable Water Bottle
  • Notepad & Pen for parents to write notes/questions for doctors.
  • Gum
  • Travel Facial Tissue packets

Optional Items:
Decorations for Isolettes/Cribs
Hand-held toy to play with baby
Gift cards for Gas, near-by Restaurants, Starbucks, etc.
Gift for sibling(s)

Sunday, November 24, 2013

Life post-NICU

As amazing as it was to be OUT of the NICU - it was also the start of  "normal" parenthood. If you were like us, we had heart rate/oxygen monitors for the first month at home. It was hardly a "normal" experience. However we treasured every moment we could (even tired ones) at home.

I learned to:

Rely on others for help - for Meals. Shower breaks. Coffee dates. Family & friends are your cheerleaders - let them be!

Cut yourself some slack - I cried the first time I cut Gavin's finger when trimming his nails. Things like that happen. Parenthood is one giant trial & error experience. I can't tell you how many different bottles we tried, how many diapers we tested, and how many routines we tried (and failed) at. Just go with the flow, baby will tell you if they need something.

Speak up - You are now the advocate for your baby. If it is cold & flu season, don't feel ashamed to ask people to stay away if they are sick. Preemies are extremely susceptible to all kinds of viruses, and their immune systems are just not as tough as full-term babies. Sanitize - sanitize - sanitize!

Talk about it - Now that you are in the world of "normal" parenthood, connect with other moms to find out any tips they have. You will have days where you question your choice to be a mom - you will be lacking sleep and patience. If you have someone you can talk to - DO IT! You will soon realize that all moms go through the emotions, frustrations, and self-doubt moments. You aren't alone!

Soak it all up - This may be an obvious one, but soak up all of the time you spend with your little one. Whether it is watching them sleep, cuddling on the couch, or giving them their first bath at home. Make time to take it all in. Before you know it - they will be one, and you won't know where the year has gone!

Wednesday, November 20, 2013

Helping Families in the NICU

Although we were on the receiving end of the support, we found a number of things very helpful during our stay in the NICU.

Pray. I never knew the power of prayer, until we were in desperate need of it. I always knew that the Lord answers prayers, but when prayer is ALL you have - when you are dependent on the Lord for your babies life - the power of prayer comes alive in a whole new way! I personally will never look at prayer the same.

Visit. Knowing what to say is a challenge that many people face when their loved ones are facing difficulties. Please don't let the lack of words keep you away. If you are allowed, and if the family has an open schedule, GO to the hospital. We treasured each visitor that we got in the NICU. The love and support that is conveyed in a face-to-face meeting is unmatched by any other form of communication.

Listen. Everyone has advice for new parents, whether they are healthy or in the NICU. Some of the most treasured conversations were when no advice was given. Sometimes no words were said at all. One of the darkest nights, I called my sister and cried over the phone - no words - just uncontrollable sobs. She cried with me from 100s of miles away, and it felt like she was on the bed right beside me.

Forgive. The days in the NICU are stressful on everyone. Please have mercy and patience with NICU parents. They may not want to talk, they may be crabby, distracted, only focused on their NICU life, or just want be alone. Don't take it personally. Be there unconditionally - ready to help when the parents are ready.

Hugs. The kind that make you feel so safe and loved that you forget about all your troubles. Hugs meant so much to me. There is something about hugging that speaks volumes - without words.

Don't shy away. Typically when a newborn baby arrives, people can't wait to get their hands on them. To snuggle them, kiss them, and check out their tiny feet and hands. In the NICU, however that is not always possible. It is an intimidating environment, and it can be hard to see the little babies hooked up to machines. When the babies are so tiny that touching them isn't possible, just talking to them is enough. If you can touch them, and the parents are okay with it - go for it!!! It made my heart sore when guests would reach out and lay a hand on our sweet boy's tummy.
My cousin, who is in the medical field, found where Gavin's heartbeat was, placed a finger on that spot and had me do the same. When I could feel his heartbeat I began to feel connected to the little boy I couldn't hold. One of Jason's aunts came to visit and spent the whole time talking to Gavin - checking everything out around him. Oh how it blessed my heart to see people connecting with my son, even if holding him wasn't a possibility.

Pitch in. Since our son was the first born, we were fortunate to be able to devote all of our time to him. Talking with other NICU mommies with other children at home, they treasured when friends and family would watch their kids so they could be with the newest member to their family. If the baby was a preemie, most likely there are a lot of things that didn't get done in the home. Offer to help set up the nursery, do laundry, or run errands for things they need.

Meals. Another great way to help - FOOD! Our family would bring us meals in the NICU almost every day. It was a wonderful break from cafeteria food. If the parents are at home with the rest of their family, there is a phenomenal website that our church used called Take Them A Meal. It is an easy way to set up meal deliveries to families.

When in doubt - a hug followed by "I am here for you" will do wonders for a weary mom or dad.

Monday, November 18, 2013

Surviving the NICU

God - Rely on Him daily. Go to Him in prayer - and let others pray for you. No request is ever too small or to big for God. He saw your baby in the womb and knew each step you would take in the NICU. Let Him be the source of your strength.

Focus on Truth - When faced with an uncertain future, it is easy to become overwhelmed with the what-if's and the possible outcomes. For us, there were many potential issues that the Drs had to warn us about. I became overwhelmed and defeated when I looked at the what-ifs. My dad encouraged me to look at the truth...the actual - right now - TRUTH. Looking at the positives that were happening daily, was what helped get is through "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things." Philippians 4:8

Family - Whether your family is near or far, ask for support. Our family was so great at providing words of encouragement, meals, hugs, and even moments of laughter.

Be involved - For us, helping with "cares" was a vital part of making our connection to our son. "Cares" were as simple as temperature checks, changing diapers, or using a Q-Tip to swab the mouth with breast milk. The nurses also suggested that we read to our baby, even when he was heavily sedated. It wasn't a huge action, but it made a HUGE impact in our ability to connect with our son. If allowed, sit in on the Doctor's rounds - even if you don't understand all of the medical terms, it will help to be better informed.

Accept help - At first, we were reluctant to accept help from those offering it. The reason was denial. We didn't want to accept help, because that meant also accepting the reality of our circumstances. However, as we let people bring us snacks, visit us in the hospital, and run errands for us, we felt more connected to "normal".

Take time for yourself - If you aren't taking time to take care of yourself, it will have an affect on caring for your little one. As hard as it is to get "rest", you need to do it. We ran ourselves ragged and tried to be there at every waking moment, only to find ourselves completely exhausted at the end of the day. Your body can't keep up with an exhausting schedule forever, so take time to rest. Even if it means having a friend come to the hospital for some coffee, or running a few errands out of the hospital. Note: mental rest is just as important as physical rest.

Get to know the NICU staff - They are your cheerleaders, and the caregivers to your baby. Get to know their names, and ask questions. We absolutely loved our nurses, especially our phenomenal primary nurses. They were able to answer questions and if they didn't have the answers they would make note of our concerns, and ask the Dr. for us.

Become familiar with your surroundings - the beeps, dings, and buzzing sounds that accompany the NICU can be very cumbersome. It is helpful to know what they stand for, so when they go off you know what they mean.

Celebrate - It sounds strange, but don't forget to celebrate your newest little family member. I didn't know how to respond to people congratulating us. On the one hand, we just had a baby - but on the other hand, or baby was very sick and in the hospital. I wish I could have celebrated him more, and treated his birth more like I would have had he been healthy and full-term.