Life in PICU

A New Journey.

Today Baby is 14 days old. We have been in the hospital since he was born. When he arrived in this world he was whisked down to the NICU ( Neonatal Intensive Care Unit) There they discovered his heart defect ( TAPVR) and scheduled him for open heart surgery to repair it. We were blessed to have delivered him at a hospital that is renowned for their Heart and Vascular Institute program.

After the successful surgery, Baby went up to the PICU ( Pediatric Intensive Care Unit) He has been here for 14 days. The doctors, nurses, case managers and coordinators are absolutely the best. They have been working with Baby and us as a family. They have been supportive and compassionate. I have literally moved into this floor. I'm here all the time. My grandmother and father come by to watch him so I can go home to shower and spend some time with the older children. My husband comes in the morning to be with me and get all the updates from the doctors when they do their rounds. To find out how Baby has been and if they plan to do the next surgery to repair the paralyzed diaphragm. So far, baby is recovering and they do not feel they need to do the surgery today. Each day is a new day. He is still breathing fast and has some issues but they want to give him time to heal and see how he does.

Today he was moved from PICU to PIMC ( Pediatric Intermediate Care) Which is a step in the right direction. They still have not ruled out the surgery and if they do the surgery, he will go back to PICU for recovery. PIMC is one nurse to two patients. Which is good. He is being monitored and evaluated. A whole team of new people have been added to his recovery program.

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Speech Therapist- she will help evaluate his feeding skills and airway protection

His is currently on a feeding tube and oxygen assistance. He is on level 1 today. Which is great. His feeding tube is ND so until it goes back to NG he will not be practicing with bottle feeding. ** I plan to breastfeed. I am pumping every two to three hours. Doctors are feeding him with MBM ( Mothers Breast Milk) and their goal is to have him feed from the breast sometime later in his recovery. The breastfeeding topic is for a later post! :)

Physical Therapist-will help with development and how his body moves.

Baby's reflexes are good and seems to respond to the therapist quite well. He is strong for his age and being a 3 week early preemie. She is overall positive with his evaluation today.

Occupational Therapist- specialists in his movement and abilities needed to participate in daily life (play, self-calming-family interaction. Also play skills and visual skills.

Baby is going well. Today he was fussy and had a hard time with self-calming. She showed me how to hold him chest to chest. I admit I was worried with hurting him considering his open heart surgery. She assured me he was fine and at this point that is what he needs. I was thrilled to hold him to my chest. He slept for a while and I was on cloud nine! yay!

He still has his original team of Pediatric Cardiac Surgeons and Pediatric Cardiologist. They check in on him approx. 4 to 5 times per day alongside 4 resident doctors per shift.

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The PIMC room is cozy. The colors are purple and green. The room is quiet. The PICU was full of beeps, flashes and constant noises. The room in PIMC has its own bathroom with a shower! Yay! I don't have to go home everyday for that! TV/DVD, CD player ( provided by Bradys' Smile ; will elaborate on that in a later post) Overall a much calmer room and I feel I can see the light at the end of the tunnel towards going home with Baby. PICU is hour by hour and was hard for me to see past today towards the future.


I guess this blog will be the beginning of me talking about this new journey we are on with Baby and having a child with a heart defect (CHD) I have three older kids and I will talk about them also. The family dynamics have changed. Adding a new baby to the household will do that. We are blessed that Baby is part of our lives. He is a tough little cookie and seriously just makes me happy. The older kids are in love with him and very adaptable to the situation. We learn as we go. We are a family and we're glad you're visiting this blog and hope that you come along this journey with us. If you are going through something like this, or have been through something like this please feel free to share your thoughts or experiences. Send me emails or post comments. I am joining local organizations as well as National Organizations. I plan to post blogs daily, several times a day ( whenever a thought pops up) or as often as Baby allows me to.

A very tired and happy mom of four crazy, wonderful kids!