Deckard was born on March 4th 2018. I was only 32 weeks and 2 days. He was given to me for only a few minutes before being taken to the Neonatal Intensive Care Unit. This is our 37 day journey in the NICU.
Week 1 (March 4th-10th)
The first few days everything seemed… well I won’t say perfect or even good, but it seemed better than any of us (including Deckard’s Doctor) expected it would for a baby born this early and at 3lbs 4oz (GRAMS). He never had any trouble breathing on his own. He did have 2 or 3 bradycardia spells. Bradycardia spells are basically an extremely slow heart rate. Typically less than 100 beats per minute. Some infants can self correct, others need stimulation to be corrected, and sometimes the baby requires the assistance of an ambu bag. Luckily he only required stimulation for one of these spells.
I was discharged 3 days after he was born and due to us living .2 miles outside the 15 mile limit we did not qualify for staying at the Ronald McDonald House. The day I was discharged Deckard ripped his IV out of his arm and foot so they replaced it in his head. Seeing your baby hooked up to monitors and having an IV in their head is simply something a parent should never have to go through.
He had to have phototherapy for his bilirubin levels, during those days I was not able to hold him. I was only able to see him through the isolette Box and touch him through the arm holes.
The positives were his feedings were going up everyday, and they were adding a fortifier to enhance the breastmilk calories from 20 to 22 calories. (And eventually to 24 calories.) They were also beginning to wean him off the purified air in his isolette box.
Week 2 (March 11th-17th)
At the beginning of the second week they discontinued Deckard’s lipids and replaced them with sugar water for 24 hours. The next day he ripped the IV out again and his doctor decided to let it stay out as long as he did well. He actually did amazingly. I was just so happy to see the IV finally gone.
Deckard also got his first “bath” that week. Unfortunately I wasn’t there for it. Having a 2 year old at home and a newborn in the NICU really pulls you in a million different directions. (But more on that later.)
During his second week he also got the feeding tube out of his mouth and into his nose in order to get ready for bottle feeding. I also finally got to bathe him. Even though it was only a sponge bath I was so thankful to get to share that moment with him.
I was also informed Deckard needed to weigh 1800 grams (roughly 3.9 lbs) and be able to regulate his own temperature to get out of the isolette box. By the end of his second week he finally weighed 3lbs 10 ounces, but per doctor’s orders they were waiting for him to weigh 4 pounds before weaning him out of the isolette box.
At the end of his second week they let him try feeding from a bottle. He did really well and surprised us all. Out of his 33mL he drank 11. Even his nurse that day was impressed!
Week 3 (March 18th-24th)
On his last day of the second week they moved him to a new area with babies that aren’t high risk for issues. This was exciting, until we realized that in the new section the thermometers were different (lower quality, and smaller) and Deckard’s temperature was reading low every time. When his temp was low that would mean we weren’t allowed to hold him or if we did hold him we were on a time. After his temperature reading consistently at 97-99 in the other area I was annoyed with these “low” readings. I talked to his old doctor and even a few nurses whom all agreed the thermometers in his new area just weren’t reading as well as the others had. But that didn’t matter. Adam brought it up to his current nurses and doctors but nothing was ever done. Eventually he began gaining more weight and the thermometers began reading accurately.
During this 3rd week I finally got to feed him from a bottle. This was only the second bottle he had because when they moved him to the new area it didn’t get related to his new care team that he had already had a bottle before and was doing well with them. Adam and I had to bring it up to the new care team but once we did they got him taking 1 bottle per shift, equaling out to 2 bottles a day. He did great with the first bottle i fed him. The next night I fed him again and he ended up choking. He stopped breathing and turned purple. His nurse had to stimulate him to get him to breathe and use the suction on him too. That was a scary night.
I also tried to get him to nurse and he did latch but not long enough to feed and after 30 minutes of trying, we had to stop and let them feed him through his tube. It was so frustrating. By the last day of the 3rd week he was finally up to 3 bottles a day.
Things were moving in the right direction. All except for getting him out of the isolette. Due to the “low temperatures” he still had to stay in and they couldn’t even begin to wean him out of it. By this time I was sick of the box. Sick of only being able to hold him for a set amount of time or not being able to hold him at all. I was mentally and physically, not to mention emotionally, drained. Everything was upsetting me and the isolette box didn’t help.
Week 4 (March 25th-31st)
By the fourth week he was taking and finishing every bottle in 15 minutes or less. He wasn’t having any spells and hadn’t since the beginning. On the 27th they began lowering the temperature in his Box to wean him out. They also moved him to another area. This area was the last place they typically moved babies before discharge.
Week 5 (April 1st-8th)
By the first of April the temperature in Deckard’s isolette Box was finally down as low as it could go. That meant he’d be out soon. But the next day we were told they were waiting on him to progress more with his feedings, and begin taking them all by mouth and finishing them all. Not really a setback but certainly not what I wanted to hear. Especially because I was hoping on him being out of the isolette by Easter.
During this 5th week I finally got to give Deckard his first real bath from me. They also asked us to bring in his car seat for his car seat test. If you’re not familiar with this, it’s where they put the baby in their car seat for a set amount of time (each hospital has its own protocol) while the baby is monitored to make sure their heart rate and oxygen rate doesn’t drop. Even though Sebastian wasn’t a preemie his pediatrician wanted it done before we were discharged so this was something we were familiar with and excited about because it meant we were that much closer to bringing him home. Deckard was also finally moved into a regular bassinet!! Things seemed to be going perfectly and we would be going home soon.
Then he started having spells. Out of nowhere he had three in a 24 hour period. Just as quickly as they started, they stopped. He went 24 hours without a spell and they began talking about him coming home on Sunday (just 4 days later!)
He got an eye exam and unfortunately the results meant we had to go to a follow up appointment.
They had moved his homecoming til Monday because they were waiting on the order for the car seat test.
The night of the 7th he had his car seat test done and he did beautifully! Then, the next night, he had another spell in which his heart rate dropped to 40 when it should be around 100. This meant he had to be put on a 48 hour hold for observation.
For the next 2 days I was holding my breath every time I got an update on him. He did well and Monday night they said they would be calling in the morning with a time to pick him up. I couldn’t wait for them to call me so I called them to make sure he was still on track to coming home. They said he was doing well and they had paperwork to finish up, then they’d call us to pick him up. I cannot begin to describe how amazing it was to put him in his car seat and walk him out of that nicu.
As of April 8th 2018, Deckard is a NICU graduate.
And as I am so behind on this post, here is a small update on life since being home!
Deckard is 3 months old. He is over 10lbs, that’s triple his birth weight! His eyes are still blue. His hair changes constantly, sometimes it looks brown, other times it looks blonde, and then a lot of the time in natural light it looks red. He’s battling some reflux but he’s doing well! He’s very healthy and we couldn’t be more blessed!
Thank you all so much for your continued support!