One week in the world my beautiful baby boys.. 7 full days .. and here you are thriving and growing stronger than mommy could have ever imagined. I’m so proud of you both .. so proud of us .. we never gave up and always believed that you would be here. You never stopped fighting. I knew in my heart you were meant to be mine and seeing you makes it so real.
In the beginning, I was in full “doctor” mode. I had to understand every number, every lab, the settings on each machine, the nicu lingo.. Maurice’s kidneys weren’t working and he had moderate dysfunction of his heart muscle. After a few days of not making urine the doctors gave medicine but at barely a pound no one could reassure me that he would be ok. A lot of wait and see .. and in just a few days that all changed. Today kidney function is 1.9 ( down from 2.6) and continues to go in the right direction. His echo yesterday confirmed his heart muscle has healed itself and is now normal. He does have a vsd but doctors are hopeful it will close. Our biggest goal today is to go up on his feedings and hope he can tolerate it . He did poop 2x yesterday which was a big victory.
Peter is doing the same. He had acute renal failure and thickened heart muscle. His recovery also wasn’t promising. He quickly fought off his kidney disease and tomorrow we re evaluate his heart with an echo. He is having a harder time tolerating higher feedings and the doctor mentioned he may need a picc line if he continues to spit up .. ehh. Yesterday I prayed for poop and today for no spit up . In 7 days you have both fought off renal failure and heart disease caused by TTTS. You have come so far.
In 7 days I have become familiar with the NICU and the staff. I smile and love seeing them in the morning. I know each nurse by name and they know my baby. They know their personality. I’m so grateful for them. I don’t look at the monitors anymore ( or at least not as much) or obsess over every detail in their blood work. I walk in now and all I see is you … you both have all your jaundice lights off and I can see your eyes. You are changing so much already. I am able to reach in and hold your hand and change your diaper without a tremendous amount of fear. Fear that I would hurt you or fear that I would wake up and you won’t be here. Things have been improving and I am no longer so numb. I was in shock working so hard not to miss anything. I had to be my own advocate throughout this entire pregnancy to protect you both and I wouldn’t let the control go. Nothing seemed real , it was more of a dream.
On your 7 day birthday you gave me a gift. The gift of seeing you both as my boys .. my babies.. the ability to let go of some of the control and to learn to be in the moment with you. I pumped in your rooms today .. sang to you and held your hands while the technician scanned your heads for brain bleeds. I didn’t even watch the screen .. I only looked at you. Neither of you cried. You just held my finger and occasionally opened your eyes. Im comforting you .. I know you know I’m your mommy. I’m working on staying in this place with you.. staying in the moment… the only place fear doesn’t exist. If I am here and you are here.. no worries about tomorrow or regret from the journey in the past.. just here .. everything will always be ok.
The ultrasound tech also gave me an unofficial reading on your head ultrasound. He said he had been doing this since 1983 and as far as he could see everything was perfect. No evidence of brain bleeds!!
Today is a good day. I’ll call and check in later to make sure you both tolerated the increase in your feedings. I miss you already 💙💙
Ps In all the excitement the first few days I never knew your birth length
Maurice at birth 32.3 cm and 790 g – now 33.2cm (13.07 inches) and 770g ( 1lb 11.2 oz)
Peter birth length 33cm (13 inches) and now 36.3 cm and current weight 1190 (2lb 10oz)