November 27, 2018
It all started when…
Freeman was born full term in Helena, Arkansas April 25, 2015. 3 hours after he was born he was life flighted to Arkansas Children’s Hospital in Little Rock, 2 hours away. Freeman’s breathing was weak and we thought he just needed oxygen for a few days. Boy were we wrong!
In the first day that Freeman was in the NICU our world came crashing down. Doctors kept telling us that we had a very sick little boy. Throughout our entire pregnancy we never suspected any medical issues and then we find out that Freeman has a small cleft pallet in the back of his throat, an extra rib, a horseshoe shaped kidney, a duodenal web and a coloboma in his eye, many midline issues that never showed up in sonograms.
After 5 days in the NICU Freeman went on ECMO, a machine that takes blood from your body, oxygenates your blood and sends it back in through 2 tubes surgically placed in your neck. ECMO gives your heart and lungs a chance to rest. If Freeman would not have been put on ECMO he would not have lived. Freeman came off ECMO 5 days later, but that was just one of his many hurdles. More to come later…
I want this blog spot to tell stories, to bring people together through circumstances that we never planned. I want to tell Freeman’s story and connect with other moms who have been in my shoes. Guest bloggers will tell their stories as well. We will also share about amazing products for amazing kiddos. Reach out to us at firstname.lastname@example.org.
December 12, 2018
Mother’s Day 2015
There is nothing like a little kangaroo care with your baby boy after such a scary 11 days. I’ll remember that day forever. I skipped lunch and didn’t go to the bathroom for 5 whole hours just so I didn’t have to put him down. It was wonderful. By our 11 day mark in the NICU we had 2 primary nurses that we chose to take care of our sweet Freeman. I really feel like our primaries took as much care of me as they did my son. We are still very close with our primaries and we have been out of the hospital for almost 3 years. They become your family; I’m sure that many NICU parents agree.
While Freeman was on EMCO, nurses and doctors warned us that ECMO babies are notoriously bad eaters. They don’t know why, but they are. I was determined to guide and help Freeman as much as possible and maybe, just maybe he wouldn’t be a statistic. He slowly started receiving milk through his OG tube after ECMO and after graduating down on his airflow through his nasal cannula. Just 1-3ml per hour, but we soon learned that Freeman had a duodenal web and needed surgery to be able to eat. This would be surgery 3 of Freeman’s short 2 week time here on Earth. We braced ourselves and prayed for Freeman and the doctors as they wheeled him to the OR. More Freeman stories of surgeries and more coming soon!
What were your first few days in the NICU like with your child? Email us at email@example.com, we would love to connect.
January 17, 2019
Every NICU parent knows what a celebration it is when your child gets to wear clothes in the NICU! Yes, we had normal clothes for Freeman, but why not go all out!? Ha! Here is Freeman, our banana baby for the day! Nurses visited his crib from throughout the NICU for a glimpse and a giggle to brighten their day. Dressing Freeman, changing his diaper, giving him a bath and other small things that we were aloud to do while Freeman was in the NICU really lifted our spirits. You are confined to such a small space while in the hospital and your child is connected by a zillion wires that keep you from walking more than 6 feet from the crib. That’s hard, but we hoped and prayed each day for Freeman to continue improving. He was our strong little fighter and he was up for the challenge!
What awesome outfits did your NICU baby wear? Email us at firstname.lastname@example.org, we would love to see them!
February 6, 2019
Discharge Day August 4, 2015!
3.5 months. That’s how long we lived in the NICU. Freeman was born full term, but in that amount of time we became close friends with many premie parents who also lived in the NICU! Throughout Freeman’s NICU stay we rode the NICU rollercoaster, good days, bad days, really bad days, then back to good days. Freeman had 7 surgeries in only 3 months. That is a lot for one little man! Freeman was discharged with a g-tube, bolus gravity feeds during the day and pump feeds at night, he also needed oxygen when his pulse ox would drop. Our time at home was hard. We were back and forth to Little Rock (2 hr drive) for follow up clinics and had all of the PCP visits in Helena. Home health would come once a week to do a weigh-in and follow-up. We were out of the hospital, but still there a lot of the time, I’m sure that many medically complex parents, kids and adults feel that same way. But…we were home!!! We loved loading up all of Freeman’s gear in the stroller and going for a walk. It was fun to show Freeman the outdoors and get some fresh air. We were home for 5 weeks, before Freeman’s breathing became labored and we returned to ACH for a chest x-ray. From there they admitted us to the PICU. This will just be a quick stay we thought, we had already done our time in the NICU. Boy were we wrong, 5 looong months in the PICU. PICU stories to come!
Did you spend days, weeks, months in the hospital? Email us at email@example.com, we would love to hear about it.
March 1, 2019
How many pumps can one kid have? PICU life was hard, really hard. We saw family after family come and go after 24 or 48 hour stays. Little did we know, but the PICU would be our home for 5 long months. We worked with GI, pulmonary, genetics and a million other specialist while at the hospital, but sure answers were not readily available. Freeman was a medically complex child.
Freeman was on and off TPN for a lot of his hospital stay, while also trying different formulas mixed with breastmilk to up his calories. Spitting up and aspirating would damage his already fragile lungs, so when he was on formula/milk feeds they were given by pump slowly and through his NJtube through his nose and into his jenjunum below his tummy. I tried everything to keep him from spitting up, taking dairy and soy out of my diet completely and painstakingly watching what I ate. Nothing helped. Freeman was on a cocktail of morphine, fentanyl, antibiotics and even rockuronium to paralyze him if his heart rate got too high and help his body relax. This always broke my heart. I would convince the doctors to let me try and calm him by climbing in bed with him and rubbing his belly or legs and cuddle and sing sweet songs, this almost never worked, but as a mother I needed to try.
We were in the PICU for 2 months before I was aloud to hold Freeman. This was extremely hard so we would read multiple books to him everyday so that he could hear our voice. His eyes were closed most of the time, but on those special days when his eyes were open for a brief second we rejoiced in showing him the pictures from the books that we were reading and trying our hardest to make him smile.
Coming up: A trach, heart cath, chest tubes and more! Oh man, oh man.
Have you spent much time in the PICU? Email us at firstname.lastname@example.org, we would love to hear.
March 11, 2019
Trach Baby, Thanksgiving 2015
Happy 7th month birthday Free-baby! We bought you a trach! After 2 month of being intubated in the PICU we decided, along with the doctors and pulmonologists, that we needed to give Freeman the chance to prove that his lungs were possibly strong enough for extubation. Freeman was on a high flow nasal cannula for 10 days after extubation- 8 liters of oxygen, you could hear it puffing through the tube and when Freeman would open his little mouth all the air would create the sweetest spit bubbles. After 8 days on high flow O2, we knew that Freeman needed a trach to keep his oxygen saturation up. The nasal cannula could not provide the pressure that his lungs needed to stay fully open. With a trach, the PEEP pressure could be adjusted just like it could on the breathing machine that intubated Freeman.
Surgery was set and we prepared ourselves to turn Freeman over to the doctors and trust that a trach would be the solution that Freeman needed. That afternoon we got a call that surgery was postponed, there were emergency surgeries that were more urgent than Freeman. We looked at this time as a way for God to heal Freeman, to give Freeman just a few more hours to let us know that his lungs were now strong enough to stay open without a trach, but that night Freeman’s pulse ox numbers were low, he was agitated and we knew that without words he was telling us that he needed a little help. Surgery was rescheduled for the following day, the day before Thanksgiving 2015.
Will’s sister was in town for Thanksgiving with her family. Looking back on that day, sitting in the OR waiting room, nervous every time the doctor walked through the door to talk with a family, debating wether to brine the turkey or smoke it, taking our niece to the gift shop and buying games and silly glasses for her because we love her, but also trying to distract ourselves from all of our fears- Fears for the surgery, fears for the future, fears for our parenting ability and mental ability to raise a trach baby and all of the challenges that brings.
Freeman came out of surgery with good numbers and resting. He slept most of Thanksgiving the following day as well. One week later Freeman was smiling and chewing on his fingers. That week was wonderful. The trach was working and we were hopeful that Freeman would continue to improve. Shortly after he would have really bad days, then better days, then back to bad again. We were back on the rollercoaster, but we were tightly hanging on and holding Freeman’s hand daily to let him know that we were there, cheering him on, every hard step of the way!
Chest tube nightmares to come!
Do you love someone with a trach? Email us at email@example.com, we would love to hear.
April 14, 2019
Our last days in the PICU
We never thought that after trach surgery we would remain in the PICU for another 3 months. We had plans- Wean Freeman’s sedation and pain meds to only oral doses, no pump meds and wean Freeman’s nitric and only use oxygen.These two things would get us out of the PICU and to the trach step-down unit where we expected to spend at least 1 month training ourselves on how to take care of Freeman at home with a trach. Child Life took us on a tour of the Intermediate Care Unit, the IMU, and even introduced us to a family who’s daughter had a trach. Her mom talked about the benefits of a trach and how durning cold, flu and RSV season (every NICU and PICU parents worst nightmare) the trach benefited her daughter because her lungs could be cleared through the long suction tube and her oxygen levels could be adjusted when she needed more support. We were terrified by the added responsibilities of taking care of a trach baby, but it was so nice to know that we were not in this alone.
Only a few weeks after trach surgery Freeman’s oxygen levels stayed low again, many times with his oxygen saturation at 100% and his PEEP also at a high number to improve his oxygenation and open up his alveoli. The trach was not working as well as we had hoped. With Freeman’s PEEP levels so high he developed a pneumothorax, a hole in his lung that allowed air to leak out of his lungs and into his lung cavity. This outside air pushed down on Freeman’s already fragile lungs and compressed them, making breathing difficult. Freeman had an emergency chest tube placed. This was excruciating to watch. Freeman was given a bolus of pain meds and a long needle was placed through his chest and into the escaped air pocket. The tube was then placed and attached to a bubbler machine. The leak in Freeman’s lungs caused the water in the machine to bubble. We watched that machine every second of every day, praying that it would stop bubbling, signaling that Freeman’s pneumothorax had healed and his chest tube could be removed. Doctors were able to eventually remove that chest tube, but it took weeks and Freeman gained 2 more chest tubes before his holes in his lungs healed.
Freeman continued to worsen and doctors spoke with us about signing a DNR, do not resuscitate, and letting us know that there was nothing else that they could do to help Freeman. We didn’t want to believe this, but the day after Valentine’s Day 2016, Freeman passed away with Will and I both by his side. Freeman was freed from all of his wires and tubes and we got to walk freely with him around the hospital room. It was a surreal moment and one that is hard to write about to this day. The pain of losing your child never goes away, but I am honored that Freeman taught us so much in his sort life. The FreeArm would never be here if it wasn’t for Freeman.
With Freeman’s journey now briefly described, I will now begin posting to this blog on a milestone basis. Freeman’s birthday is next week. I want to post about the day he was born and then each Facebook memory, happy and sad, that comes up along the way. I hope you will continue reading. Please reach out at firstname.lastname@example.org.
April 25, 2019
Happy Birthday Freeman!
Freeman was born on this exact day, 4 years ago. I woke up this morning reliving all of the moments of his birth. At 5:30am I rolled over and said to Will “Freeman was probably on the helicopter, on his way to Arkansas Children’s.” Thinking back on Freeman’s birth, 30 hours of labor, in our home, with our midwife, I can’t help but relive all of that pain and fear.
We had no idea that anything would be medically complex with Freeman after his birth. We had no indications from any of our ultrasounds. I remember trying to breastfeed Freeman right after he was born and my midwife telling me that he probably wouldn’t eat. She lovingly took him and tried suctioning his mouth again. She didn’t like how he was breathing. She handed him back and had me hold oxygen up to his nose.
After 3 hours of holding Freeman between myself, Will, my parents and my midwife, her suctioning him repeatedly, giving him extra oxygen, rubbing his feet and rubbing his back, his breathing was still labored and Will and my midwife, with Freeman, left for the Helena hospital, only 3 minutes from our home.
I thought Freeman would be there a day or two for more oxygen support, then come home. Will returned home an hour or two later and told me that they had taken him to ACH. It wasn’t until the next morning, more like 3 hours later since Freeman was born at 12:45am, that we received a call from the ACH NICU. They told us that we had a very sick little boy and they would be testing him for meningitis and many other things that could be affecting his breathing. We gathered a few clothes and raced the 2 hours to Little Rock. Entering Freeman’s room with Freeman connected to every wire imaginable was hard, really hard. He was sedated and almost lifeless.
I tried so hard to eat healthy and not take any medicine during pregnancy. I had labored and delivered Freeman naturally. I had purchased glass bottles and cloth diapers for after he was born. Now my baby was being pumped full of morphine and antibiotics. My birth plan quickly flew out the window. Freeman taught me so much. I am a different person now and for that I am forever thankful.
Do you have a life changing birth story? I would love to hear it. Please reach out at email@example.com.