Day 3- Our 1st Look and Bath Time Life after the 1st 72 hrs

img_1434Maurice Jace💙

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💙💙

The First 24 Hours

Today is good day!

June 20, 2018

During the c section there were 2 teams from the nicu working on Maurice and Peter. It sounded as though there were 20 people in the room. They treated my babies as I sat behind a big blue curtain. I was not able to hold them or see them.. my husband went over a took pictures so I could catch a glimpse on his phone. The one big sign of relief was their cry. They both let out a tiny cat like cry when they came out. Peter first and then a few minutes later, Maurice. That cry was the sweetest sound I have ever heard. The Nicu doctor popped her head behind the curtain to tell me they were doing ok but there was a risk they might need to be on a ventilator.

I was scared .. I could feel tons of pressure during the section but no real pain.. I just kept trying to listen to anything they were saying so I could get some idea of how my boys were doing. My husband was beside me, holding my hand, telling me how beautiful our boys are and reassuring me everything was ok.

About an hour later, I was able to go to the NICU and meet my sons for the first time. They first wheeled my bed into Maurice’s room. Maurice is our “donor” twin. He is under closer watch because his heart function is mild- moderately decreased. We are not sure yet if it is an area where he had a mild heart attack or if it is just from the strain of being shrink wrapped inside his membrane. He is on a medicine to make it stronger. The wonderful news is that although the function is decreased he is able to maintain his oxygen at a level of room air. His nurse Maggie reassured me early this morning that she did not have to increase his oxygen and he is doing very well. She told me he was fiesty. 🙂

Our son Peter , “the recipient” suffered from volume overload due to the high fluid levels from ttts and has a hole in the heart that may close on its own. He also has a thickened heart muscle from it having to working so hard. Again the doctors are very optimistic and believe this should resolve on its own. He too has “some pair of lungs” and he is also on 21% oxygen which is the same that we breathe. They both have high bilirubin and are under lamps but this is very common with preemies.

The plan overall right now is to Mimic the womb as close as possible. Keeping the room dark, baby warm and voices low are essential . They also do not want to use too much stimulation and they touch them as infrequently as possible. I’m hopeful that in a few days I will be able to do skin to skin and feel them close to me.

This experience is very new to me. My first and second daughters had skin to skin immediately . They stayed in my room and slept with me from day one. When I went to visit Peter and Maurice, all I wanted to do was grab them.. hold them tight .. to look at them through a plastic box and barely be able to touch them goes against every motherly instinct you have. I was able to hold Peters hand for a minute and it was so beautiful. My first night without them.. knowing they were in the nicu .. not feeling their kicks inside me or hearing their heart beats on the monitor was one of the hardest nights I have ever had. When I called the nurses to get an update and heard they did well and were able to lower their oxygen it was a dream come true.

I know we will have a very long road here .. they have fought through so much already.

It’s only been hours .. but already my sons have changed me. I am stronger because of them. I am truly blessed and grateful to have been chosen to be their mother.