Maurice had 3 episodes since he has been at his new hospital. They happen around the same time each night.. not related to feeding … his heart rate and breathing decrease and he requires “stim” or stimulation to come back. It lasts for about 30 seconds. Here, at our new NICU, an episode is defined as any significant change from his baseline heart rate or respiratory rate requiring some type of stimulation. It is apnea ( breathing issue) and bradycardia ( heart rate issue). This seems like a loose description but again every baby is different.. for example Maurice’s heart rate is usually around 150s so if he drops to 100’s this may be considered an episode. Another baby might have a lower heart rate and a drop like that would be normal. We were told at our old hospital he did not have any episodes. It seems that the only one they have documented is the one he had when he was in my arms that I altered the nurse to. I am thankful that he is here and watched so closely.

In the last 24 house he has been episode free. They started “nippling” him which means offering him a bottle or breast. Some hospitals will not allow this until the baby is off of “high flow ” respiratory support. Here, however they explained, they have had significant success doing so. Also they assured me that the doctors and nurses are standing close by in case of any emergency. The first time we did it together we had about 4 different practitioners near us. I felt safe. It is not easy for a preemie. He took 2 full bottles since we started this process. His nurse was kind enough to call me and let me know he drank a full bottle last night because we were not able to be there. She was proud of him and excited about this moment and wanted to share it with us. They moved his feeding tube to his nose so he can get a better suction around the bottles. This is a very big deal. He has only been receiving food and nutrients through a feeding tube directly to his stomach. Although the intestines are formed at around 20 weeks gestation.. the important functions such as peristalsis (or the contractions of the intestines to move food through them.. ) and also very important digestive enzymes that help them break down food are not formed until about 28- 30 weeks. Having nutrients in your digestive tract will help it grow and mature faster. It is important for neurological development as well. Most facilities will practice cue based feeding and will only offer a bottle if your baby appears awake and alert and is showing signs such as sticking out his or her tongue. They also must have stable vital signs. If he is breathing too fast .. the baby can aspirate. I’m happy to say Maurice has been doing very well with this.

He also has moved to an open crib!! As soon as he came here they worked on getting him out of the isolette. He tolerated it fine with no issues and was able to maintain his body temperature. He is two months old. In the isolette his world was contained to a plastic box. He was in a private room alone. His only interaction with people other than me was when it was time to feed him and change his diaper. His nurse was very busy and had 4 other babies. He even developed diaper rash. He is now with other babies all around. His nurse put a mobile in his crib. She plays music for them. This stimulation is essential for growth and development at this stage. It used to make me sick leaving Peter and Maurice in an empty room filled with the sounds of beeps and machines staring at a ceiling alone. I feel much more comfortable knowing there are people around.

His NICU now offers primary nursing so I am looking forward to getting to know his main nurse. There are also only about 6 attending and they meet weekly to discuss each baby and come up with a cohesive plan. This is the biggest change and what I am most happy about!! Some continuity of care!

They were concerned about the episodes and were considering putting him back on caffeine but because he has done so well over the past 24 hours we are just watching him. His chest X-ray was “not impressive” which is a common term doctors use to describe things when they are not too bad. They said the lung volume looked ok but he had signs of mild lung disease which is to be expected. His blood work came back good except for high sodium which is easily balanced with some extra fluids. He met with cardiology and his ventricle septal defect “hole in his heart” is almost closed which is incredible. Physical therapy also evaluated him and is a little concerned about neck stiffness on the right and they are working with him to correct it so he doesn’t develop something called torticollis. He seems more alert and continues to gain weight. They decreased him to high flow one liter today. He is almost 5 pounds and he and his brother are starting to look so much alike.

My Peter is also doing amazing and is eating about double of what he was when he first came home. My girls are sick .. strept and pink eye .. and we have Peter on isolation at my moms .. ( thank god for nana )and are staying away from the NICU for a few days.. luckily everyone seems to be getting better.  I’m so scared with people who are sick being around us and Peter.  The nurses recommend no one holds Peter or Maurice until their immune systems are stronger.  I love having people visit but please understand when it comes to holding them we have to be very cautious.  The NiCU allows me to call as much as I want and I can even view Maurice on a monitor using an app on my phone.. it’s pretty amazing.

Slowly we are getting there!! I’m happy with where we are right now at this moment. It’s hard not to perseverate over the past. I know my babies have the best of what I can possibly offer them at this moment and so many times as a mom .. even though it is not ideal or “perfect”.. you have to find peace knowing you are doing your very best. I am .. but how I wish I could do more.. how I wish I could have done more in the past…what happens when your best wasn’t good enough…  I love you my sweet babies .. I promise I will stay here in the present and continue to do All I can for you. You have always done your best for me