Wow - it has been quite a week. We have so much to share. It is a little long.
On Wednesday, December 15, Frank and I rested in bed watching Zombieland and talking about how sure we were that our son would not be born until January. Imagine my surprise when I awoke to painful contractions at 5 o’clock Thursday morning. After an hour and a half of trying to sleep through them, I decided it was time to tell Frank. He immediately warmed a hot tub, poured me a glass of water and gave me my medications. After 15 minutes, her decided it was time to call our doctor. She heard me breathing through a contraction and sent us straight into labor and delivery.
When we arrived my contractions were about 4 minutes apart so doctors started shots of a medication to calm my uterus. You can have up to three shots. The first two didn’t work and the medicine was raising my heart rate too high to be able to have the third. I was given another medication to help relax me and then finally my third shot. The contractions spaced out and slowed down, but didn’t stop so my doctor determined it was time for John to be born. I begged for a chance to try to meditate and pray and see if the labor would stop, as I knew John was not ready to be born. During this wait time, I was given a rescue steroid to prepare his lungs to work outside the womb. Unfortunately, the medications wore off after 2 hours, and within 45 minutes they were 1-2 minutes apart. I was taken in for a repeat c-section, and at 4:23 pm, John Robert Moller was born into this world.
One of the first things we learned about premature babies was the concept of Days of Life. On the day of John’s birth, it was considered Day of Life 1, though he was just hours old. I will use this as I share our experiences of his first week of life.
Thursday January 16 – Day of Life 1
Immediately following John’s birth, his Apgar’s were excellent at 8 & 9 out of 10. However, within minutes, he started to experience signs of respiratory distress, and do something they call “grunting.” The Texas Children’s Hospital Neonatal Intensive Care Unit (NICU) Team came to take John to the NICU – TCH is connected to St. Luke’s Hospital where John was born. After my surgery and recovery were complete and I was taken to my room, I received a phone call from the neonatologist. John was experiencing severe difficulty breathing. It was the news we were prepared for, but dreading all at the same time. The doctor said they were beginning a CPAP, or continuous positive airway pressure treatment, but that it was most likely that they would be intubating him and administering surfactant to open his lungs. He was being admitted to the most critical care unit of the NICU, Level 3. The doctors were also concerned because his chest X-ray was dense, so there was a possibility that he had pneumonia due to an infection in my uterus. This was later ruled out, but in the meantime he was started on antibiotics.
I was given a breast pump to make milk for our little guy. As we knew, breast milk is critical for the preemies. I couldn’t do much from my hospital bed to help my son, but I could begin to help my body make the food that would nourish him. Our journey had begun.
Friday January 17 – Day of Life 2
Day of Life begins at midnight, though John was only hours old. I was not able to see him yet, but I woke every few minutes waiting for 5 am when I could pass my tests to get my wheelchair ride to the NICU. It was the longest wait of my life.
Friday was a huge learning curve for us. My first sight of John was pure awe. I didn’t even see the tubes, IVs, monitors, etc. All I saw was his precious face. But the reality quickly set in, and I begin to cry for my sweet boy.
He had an IV in his arm, the CPAP machine on his face, and leads to monitors all over his body. Around dinnertime, he received a feeding tube to administer expressed breast milk. We were afraid that I would not have enough to feed him yet, but donor milk was available. Our first prayer was answered as my body quickly made enough milk to meet his needs. He began receiving 6cc’s every three hours through his feeding tube.
Not breast feeding was also a huge learning curve and I now have a new found respect for women who exclusively pump for their babies. Every two hours, around the clock, for 20 minutes at a time, I was attached to my electric pump. It didn’t take long to wear me out, but I knew how critical it was, so I strictly stuck to the schedule.
The worst part was when the nurse practitioner told us that John would be in the hospital until his due date. She explained the worst-case scenario of everything. I told her that we needed a different approach to our son’s care. We were going to be positive and expect the best, not the worst. After all, our son was relying on us to cheer him on. And our God was bigger than her medicine.
Saturday January 18 – Day of Life 3
On Saturday morning, we met our angel, Dr. Abrams. Dr. Abrams was positive, optimistic and ready to help John thrive. I was ready to begin skin-to-skin care and kangaroo care. ALL of the research on premature babies shows that holding them next to your skin/body improves their stats (heart rate, respirations, oxygen saturation) and calms them, allowing them to thrive. Dr. Abrams allowed us to begin kangaroo care and to begin breast-feeding.
First they had to remove the CPAP and see how he tolerated being on room air. He had some episodes of apnea and bradycardia (A’s & B’s) where he would drop his heart rate and oxygen saturation. Fortunately, he would recover on his own without stimulation so they did not start the CPAP again. Unfortunately, his IV came out and the only remaining spot was in his head. It was somewhat distressing for us, but as with everything, John took it in stride.
After the CPAP was successfully removed, I was able to put John to the breast to nurse. It was so precious – one of the most amazing moments of my life. He held onto my hand and gazed into my eyes. Pure love.
Sunday January 19 – Day of Life 4
During rounds on Sunday, Dr. Abrams continued to be impressed with John’s improvements and he continued to advocate for successful breastfeeding and aggressive movement to get home. John had his IV removed. His time at the breast was increased (we could nurse whenever he wanted) and he was moved from a warmer bed to a crib. He was put on the wait list to be transferred from Level 3 to Level 2 NICU.
This was a lot of progress, but it was a little stressful and tiring for him. Shortly after 5pm, he began to have long episodes of A’s & B’s. He needed stimulation to recover. The nurse practitioner was called and the transfer was cancelled. We also had to tube feed for a few feedings to give him a break. That night, one of our favorite nurses, Raquel, came on shift. She was so calm and John adored her. Frank and I settled in for some sleep and John went the entire shift without anymore A’s & B’s.
Monday January 20 – Day of Life 5
Sunday night, we only did every other breast feed and Raquel did the rest by bottle and tube using my milk. As we were preparing to return to the NICU after breakfast, we received a call from our pediatrician that John had severe jaundice and had been placed under the bilirubin lights and would be on them for at least 24 hours, but more than likely 2 -3 days. Monday was also the day that I was being discharged from the hospital. I think I cried for 8 hours straight. We were going back and forth from NICU to my room all day preparing for discharge and feeding John. I was getting exhausted and not sure how I was going to make it through.
Once again, God stepped in, and we were granted a room at the Ronald McDonald House. Let me add, that if you are looking for a charity to volunteer for or donate to, RMH is AMAZING. They provided us with a room to sleep and shower, and small meals and snacks for the two days we were without a hospital room. It was an incredible blessing.
John was transferred to Level 2, since jaundice was his only issue at that point and his care could be managed at the lower level. We were over the moon and again amazed with God’s mercy and blessings.
Tuesday January 21 – Day of Life 6
John was really starting to improve. I think Frank and me being there around the clock and the breastfeeding and kangaroo care helped him to thrive. His bilirubin had dropped to the level that they could take him off the bili lights; he had gained weight and was feeding well. His nurses felt he was ready to go home. Our pediatrician was not on call, and the covering pediatrician thought John was doing very well, but not ready to go home. I was so disappointed. I knew it was very early, but I was so tired, and I was desperately missing my girls.
I called my mom, who has been the most unselfish help, caring for our girls for an entire wee so we could be with John. She said she would bring the girls to see us. Oh, it was the best thing EVER. When I wrapped my arms around Emily, my cares melted away. Emily has handled everything very well, but she had some scary feelings and we felt it would be best if someone from Life Care could work with her. Basically, Life Care Specialist help children cope when they are going through difficult things at the hospital. They have helped Emily before during various tests and hospital stays.
After being checked for a fever, Emily was able to go see her brother and hold him for the first time. Let me tell you, there wasn’t a dry eye in the house as she began to sob and cry telling John how much she loved him.
Madi, on the other hand, was obviously angry with me. She was completely ignoring me and focusing on Frank. She is still a little put-off, but slowly coming around. Life Care said it was also compounded by the fact that it is very normal for children her developmental age to prefer the opposite sex parent. This has been hard on me, but she is happy so I am giving her the space she needs to come around.
For the remainder of the day, we were told to act like we were at home. We took care of all of John’s needs. We also had to take our CPR class, car seat class and a few other things on the discharge checklist, so that when John proved himself ready, we could go home.
Wednesday January 22 – Day of Life 7
In hospitals, doctors round VERY early, so at 7am, we were ready to see John’s pediatrician and prayed we would get the green light to go home. We would not be disappointed.
John had gained weight, was eating well and maintaining his temperature – all the things he needed to go home. His pediatrician used one word in medicine that you usually DON’T want to hear – remarkable. In medicine, it usually means that things are really bad and the doctors are impressed, in a bad way. But, in his opinion, remarkable, in John’s case, meant miracle. He said that babies just don’t do this well and we are incredibly blessed. We agree.
And John was discharged from the NICU after 1 week.
Where we stand today
Our first afternoon and evening at home went very well. At one point, all five of us were in our master bedroom, talking, playing, etc., and I realized that this is the way I always dreamed it would be.
We are closely monitoring John’s ins and outs, or how much he eats and goes potty. We are also doing daily weight checks – having a lactavist as a mom is coming in handy on this one!
We also have to be extremely cautious with germs. Unfortunately, we must tell you that we are not able to accept visitors for several weeks. We are in the throes of cold and flu season and because most people are contagious before they even have symptoms, it is a necessary evil. Please know that we understand that this sounds extreme, but because John is a preemie, any kind of respiratory illness could have fatal outcomes.
Many of you have contacted us about helping out. Our greatest need right now is prayers for John to continue his growth and development. We are also in need of meals. If you would like to help us out, please email or text Frank, and he will set you up with a day.
Again, we want to reiterate how much your prayers matter. We believe our doctor that this is a miracle. God heard our prayers, and they were answered with grace, mercy and love.
Many blessings to you during the season of faith hope and love.
HE is the reason for the season!
