Today I really met you for the first time.. I looked into your eyes and told you I was your mommy .. by the way you calmed I could tell you recognized my voice. I saw you without any tubes in your nose or around your mouth for about a minute.. I cleaned your face with a tiny piece of wet gauze , gave you fresh new sheets, held you and helped weigh you 1lb 12 Oz and changed your diaper . For a few magical minutes, I forgot about all the numbers .. all the tests .. the machines .. the ups and downs … even the plastic box you were laying in … and I was able to just be your mama… you are my baby boy and through this journey I have learned what a gift the smallest things can be.. to never take a single breathe for granted. I love you even more today than yesterday .. my miracle .. my heart .. my baby Maurice xoxo I’m counting the seconds until we can be together again and tomorrow I am able to hold your brother!! Thank you to all the nurses especially Maggie Maurice’s nurse who always makes my babies belong to me and not the NICU. It sounds so strange to even say it but you are the visitor … however they have been so incredible at Hackensack and the nurses here are very encouraging and helping make this traumatic experience as easy as it could be.
We have reached another milestone .. 72 hours. The NICU fellow as well as the nurses have informed us that the first 24 hours is critical. That is then follow by the first 72 hrs and then the first week! Yesterday at 3:00 we celebrated their 3 day birthday!! For the first 3 days of life the are on strict precautions to minimize contact touching sound etc. They have been taken from inside you too early and the goal is to mimic the womb as closely as possible. Too much stimulation could result in a brain bleed and we must be very cautious.
As of today, Maurice and Peter remain off of all medication , except TPN and saline. I am so proud of them for this!!
Maurice has been officially diagnosed with intrinsic renal disease seen on Doppler secondary to TTTS. As of the last day he has been producing urine on his own without any medication. His electrolytes are better balanced however his creatine ( kidney function measurement) remains elevated. During rounds the NICU team remains confident that his “creatine has peaked” and should start to get better. Also as he grows, there is a good chance his kidney disease will improve. His bilirubin improved today and he was able to come off of one lamp that was used for phototherapy. His cardiac status remains improved but still decreased. He had a mild- moderate decrease in function on his first echo and the repeat yesterday showed “improvement.” He will repeat his heart echocardiogram on Monday.
Peter has similar issues. His kidneys are suffering from acute renal failure but he continues to make good urine output following in the trend of healing. The doctors also expect this to improve. A good sign of healing kidneys is electrolyte balance and Peter has done so well balancing his over this past 24 hours. One of the nurses mentioned to me, that because the boys blood supply was so connected, if one suffered kidney injury or disease, the other would like have the same neural hormonal response. The kidneys are responsible for regulating renin- Angiotensin- Aldosterone, Antidiuretic hormone and much more. They are essential for controlling fluid output and assist with maintaining electrolyte balance. This was so interesting to me.. it’s impossible to prove , but in theory , when Maurice stopped making urine in utero and suffered kidney damage it caused a response in Peter’s body as well. His cardiac status remains the same and will be rechecked Monday along with his brothers. He has a thickened heart muscle due to it having to work so hard. He suffers from a functional cardiac outflow obstruction and when he is under stress or has a high heart rate he cannot perfuse his body correctly. Basically his heart, being thick, blocks the blood flow at times. Now that he heart doesn’t have to work as hard this too should improve. He also has a murmur or “hole in the heart” that should resolve as well. His level of bilirubin is high and although common in preemies has not improved much with phototherapy. Yesterday additional light therapy was added.
The most incredible thing is that they have almost no lung issues at this time. That is the most common issue with premature babies. They do not need surfactant and the cpap is set to room air 21% only. They do not have the issues of typical preemies. Their problems are not from being born early.. they are from twin to twin transfusion syndorme. On top of that we have to be cautious of all preemie issues but this terrible disease has caused damage to their heart and kidneys.
And , on this beautiful positive day, … my biggest supporters , my mom , my cousin and my Juliet stayed with me all day!! Today life is good .. And for that I am grateful💙💙