BENEFITING: March of Dimes Foundation
EVENT DATE: Nov 10, 2016
PREEMIES, BABIES, AND NICU’S
Andy: In order to tell this story I have to go back to June 25, 1990 around 8 o'clock in the morning, when as a first time parent I got my first experience with a Preemie. Being that at the time I was young, exactly half my age now, I didn't grasp the fact that my baby who was arriving early after spontaneously ruptured membrane and a very short labor, I was going to be the father of a 28 week preemie. I was excited that I was having a son but I did not truly understand what was happening, and thus the slap in the face that brought all the fears of every parent to light, it was a baby that was born small, helpless, and 12 weeks early and this baby was critically ill.
At the time that he delivered, he had Apgar scores of 5/4 and was taken immediately from the delivery room to the nursery, where things went from bad to worse, during the efforts to keep my child alive I was asked what kind of measures did I want to include in the care of my son and that the prognosis of his survival was slim. Now you talk about a sobering question it was right then that I realized just how sick my son was, life just got serious.
This small baby boy was blue and not getting the oxygen that he needed, babies are suppose to be pretty and pink and when you see a lifeless body of your infant child, cold and blue, your priorities suddenly change to survival issues. A member of the team from Arkansas Children's Hospital that had flown in around 10 am came out to me and gave me a brief assessment of the issues that they had in front of them and their recommendations. First was the fact that at 28 weeks his lungs were not developed enough to breath on their own and he had been intubated and placed on a ventilator but this was not being successful due to the fact that his right lung had collapsed and had taken 3 chest tubes to get it re-inflated, and with the underdeveloped lungs he could not exchange oxygen, this is when they offered a life-line, there was a medication that had not been approved but was available in trials that could help, it was a form or artificial surfactant they could try, without any promise of its success but I would have to sign waivers and consents for the use of the experimental drugs. Needless to say you give your consent and sign whatever they put in front of you, you're desperate at this point. Now, after nearly 14 hours since his birth this baby is placed on a stretcher and flown out ,to a hospital that is a two hours drive away, in the dark of night, now you wait. You cannot go, and you heart and soul just left on that helicopter both you and your baby are helpless to do anything.
The next morning after a sleepless night filled with worry and sorrow, you get the call, Okay this is what you have. "Sir, your son is very early, he's 28 weeks and has a tension pneumothorax, a patent ductus arteriosus with persistent fetal circulation, he is septic with group b strep, he has acidosis, cannot feed, and has all the signs and symptoms that go along with this." He is on the ventilator, has a UAC, UVC, along with IV in his head and feet, photo lights, a foley catheter, NG feeding tube, servo warming table, and lets not forget the three chest tubes. He is on antibiotics, getting TPN and lipids, blood, dopamine and priscoline., and you guessed it, surfactant. His chances of surviving are slim, but we are doing all that we can." Now imagine slight improvements followed by big losses for the next four weeks, discussion on the use of ECMO and jet vents followed all of which were the state of the art for the time but he did not meet criteria. Now at this adjusted 32 week age, was the first time that I actually got to hold my baby, he was still very small and connected to all the equipment, monitor, lines, but I promise it is so much more pleasing than just looking at your baby in a bowl with only port holes to reach in and hold his hand. Another 4 weeks pass and at 8 weeks or 36 weeks adjusted age they start to wean the ventilator, start small formula feedings, progress is being made and actual talk about going home begins with, the if and "when we can do" list, and the list is huge and you have learned that disappointments happen more than successes. Now another four week pass and your baby is taking 30 to 60 ml feedings every two hours, you are on only 1 liter oxygen and discharge discussions begin. But first you will need: EKG and SaO2 with apnea monitors for home use, liquid and portable O2 systems, a reliable medical supply company, physical and respiratory therapist, and preemie clothes that really don't exist much at this time so doll clothes work in a pinch. So you are discharged home with your "little bundle of joy" about 5 pounds worth, who just became a NICU graduate, and along with his degree he comes home with initials, Rt. Hemeplegia CP (cerebral palsy), BPD (bronchopulmonary dysplagia), GERD (gastroesophageal reflux disease) with aspiration, and a CVA (cerebral vascular accident or brain bleed).
Now after 12 weeks in the NICU for your baby he graduates, and I graduated the Ronald McDonald House which is forever in your heart. Now for the rest of the years it just clinic visits for every specialty, and for every complication. For your babies first birthday you find out that you hit the million dollar baby mark, You have lived off the generosity of family and friends, had to take a leave of absence from work, this was before FMLA. Now your baby is nearly 26 years old, has been in and out of IAFO's an orthotic for the assistance with walking, Percutaneous heel cord lengthening surgery, botox injections to relax spastic muscles, pH probes for reflux, laparoscopic nissen fundoplication surgery, bronchoscopies, EGD's, eye patch therapy and glasses, physical therapy, occupational therapy, respiratory therapy, 504 Plans for schools and the list goes on. But you have a baby boy, you love him, he is engaged to be married, works full time, drives and leads a happy and productive life, he has lived despite the odds, because he was a fighter, the risk taken back when you blindly signed all those consents and waivers, just to give him the chance.
Now that sweet baby that graduated the NICU is two days short of his 26th birthday & on June 23, 2016 he has a brother and it looks as if history is repeating itself.
Keri: during my very first pregnancy in 2000 I developed HELLP Syndrome and had to have an emergency C-section on July 5, 2000 at only 24wks due to becoming critically ill from the HELLP and its symptoms. I was rushed from St. Bernards to Baptist East in Memphis (since it was closer and was still IN-network for my St. 2 hours2 hoursBs insurance back then); She only lived for 2hours due to her extreme prematurity and wet, underdeveloped lungs. The HELLP also caused my placenta to start clotting and was not nourishing her properly. She weighed 1lb and 1oz. Her heart just beat for those 2hours. I was given steroids and magnesium on my ambulance ride over to Memphis. This started my need to have to have a c-section with each subsequent pregnancy -
Keri: I also had an uneventful pregnancy 12 ½ years ago and a scheduled c-section at 39wks and had Riley Olivia who weighed 7lbs 8oz. No problems. Group B strep negative. This was also done at St. Bernard’s Sept 2, 2003.
Andy & Keri: But let’s back up a few months and say that this was a pretty uneventful pregnancy until 31wks 2 days and that’s when we had our water spontaneously break again, also tested positive for group B strep (which was negative in last pregnancy-Riley’s) and was admitted to St. B’s for 48hours of magnesium iv therapy (for prematurity) and 2 doses of steroids (betamexadone) IM to help with the baby’s lungs maturity and to do a wait-and-see approach.
After another week of hospital bed rest and monitoring, dilation and labor started so a c-section was done immediately the following morning after this happened and Ryker was born at 32 wks 4 days.
He weighed 3lbs 11oz at birth and had apgar scores of 9/9 and Dr. Seglem along with the rest of the staff were very impressed by his early entrance into the world and lack of acute distress. He wasn’t in any respiratory distress at birth either (we have video clip of this at birth with Dr. S’s voice on it)** _ but due to his prematurity he was placed in a Giraffe bed/warmer and taken immediately to the NICU for further assessment, labwork and tests, x-rays, an umbilical iv line was placed (UVC), blood cultures drawn, prophylactic antibiotics started, o2 via nasal cannula placed at time of his UVC placement just for extra support so he wasn’t further stressed and only was at 1 ½ liters(21%) just for the pressure behind it . At first, we were only able to see him in incubator but soon were able to hold him for just a few minutes once a shift so his temp wouldn’t decrease too much.
A feeding tube was also placed in his nose for the feedings this first week. Since I was unable to produce breast milk we were able to thankfully use donated breast milk via donor banks and this is ideal for preemies (much easier on their guts and to digest); He was also started on TPN & Lipids via his IV for added nutrition and weighed daily since his main issue was his little size. He was at 3.9# the next day after birth. Watching his intake and output and making sure he wasn’t being stressed were main issues too along with temperature maintenance.
He had to have 2 different days of phototherapy for his bilirubin levels being too high. Lab work taken almost daily. His blood cultures continued to be negative for any growth. The antibiotics were continued for a week as a precaution. His tube feedings were gradually increased over this week as well. His lowest recorded weight during his NICU stay was 3lbs 3oz on June 27th and then he started trending back up and would even have a few days here and there with no recorded change. He progressed right along as well as any NICU or preemie baby could hope for.
On June 29th he took his first bottle feeding without any problems and they also continued his tube feedings. (we have a pic of his very 1st bottle feeding) He had to drink each bottle (especially when he was fed more later) under a certain amount of time otherwise he would be burning too many calories taking a bottle. We were then able to hold him outside his incubator bed twice a shift now for 20-30mins each time as long as all his monitors and tubes were still attached and he maintained a certain temperature.
Still had his o2 on until June 28th and it was taken off for a trial run and he was able to keep it off. He just kept breaking down and surpassing every obstacle. Tube feedings continued along with a few bottle feeds of donor breast milk daily and he was also started on Iron drops and multi-vitamin drops twice a day (these will need to be given until his 1st birthday due to his prematurity) – His TPN and lipids were stopped once he started tolerating bottle feeds along with his tube feedings (which were also being increased in amount at each feed) and his umbilical iv line was taken out on June 30th without problems or setbacks.
Dr Seglem had prepared us before birth for every possible scenario and what to expect and what’s possible with preemies and Ryker kept doing better than anyone could have predicted given his way too early arrival and small size. Every day he had new goals set into place and he would always pass each one with flying colors.
The 2nd week consisted of getting him ready for his upcoming discharge and that included adding actual clothes on him for continued temperature maintenance and adding (extra caloric) formula to his donor milk feedings and getting him gradually switched over to all formula. His temp and vitals were still always being monitored and his weight checked. He passed his 3-hr car seat test with flying colors – actually slept through it. He had finally reached 4lbs 2oz the day he got to take the test. We also did the required 24-hour in room stay with him prior to final discharge.
We can’t say enough great things about the NICU and its wonderful staff. They are truly amazing and we are so fortunate to have them locally.
Andy: The contrast from June 1990 until June 2016 are vast, expecting an experience comparable to that 26 years ago, it was amazing to see the changes and routine care are remarkable. Surfactant is the standard of care in pre term babies. Donor breast milk is available and encouraged with these pre term infants. Skin to skin, kangaroo care, actually encouraging baby and parent touching, knowing how important every day that pre-term birth can be delayed is a win in terms of complications due to prematurity, and all of this is because of the dedicated care and research done by our children’s hospital, neonatologist, NICU nurse and respiratory therapist, and all of this is supported and funded by the March Of Dime, so from the Jackson Family we thank you!