AMARA’S STORY

Amara and Kadir were born on 4-28-16. Kadir, who was PROM (premature rupture of membranes) at 21 weeks, was the reason why I was admitted to SB hospital antepartum unit. His water leaked, and they presumed it was due an infection. I didn’t believe it, my motherly instincts told me that was not it. I was told I could deliver within the next 1-2 weeks and if that happen then both babies would not be viable for this life outside the womb. I will not write my real respond to that statement to the wonderful NICU staff that talked to me that day, but the clean version was something like – “these babies and I are not going down without a fight” was sort of the response (clean version, pregnancy hormones, #mamabear).

We were scared, we worried about what the outcome was going to be. Were we going to lose our children even before birth? What did I do or not do to cause this? Was there a way I would have been able to reverse this?

To keep the anxiety down & keep myself strong, I talked to my babies every day, letting them know that we were a team. That we would last as long as God willed it and we would get to viability. Each day passed, and it was a blessing. Each week passed, and it was a miracle. So, my motto on my hospital wall was Each day is a blessing, each week is a miracle.

It was even harder because my 18-month-old son Amir was home with my mom and without me. He stopped talking to me and when he visited me at the hospital, he refused to come to me unless prompted. I knew something was wrong, but I didn’t know how to fix it. To this day I feel the mommy guilt, that I failed him to save his siblings, that I lost his trust because he felt like I abandoned him.

While I was stuck in antepartum I decided I needed to still work and help provide for our family. I made a makeshift office in my room loaded with a laptop, fax/copier/printer/ all my usual office supplies. And every day after the nurses were done with my morning tests, it was work and eating time. I also started to make baby hats because of my nurses- one of them brought me yarn, a loop and taught me how to make hats. So, I did and sent it to the moms on my unit and the NICU with the help of Sister Lynn in the hospital who always came to visit me. During these weeks I worked, had bad days and good days. I had constant bleeding episodes that no one could find the source for until after delivery. I would be emotional, sick of the unit, I would cry for from the boredom, the stress, the anxiety and from missing my baby boy if he couldn’t come see me more. It was a hormonal roller coaster.

We made it to 24-25 weeks and the NICU came to talk to us about what it would be like if we delivered within these few weeks. The key goal was keeping them in and getting them to gain as much weight as possible, so their birth weeks would match the maturity weeks. They explained to me that Multiples in general tend to be 1-2 weeks smaller at birth then their actual gestational age, which meant that my job was to gain weight. So, protein shakes, snacks, meals as per the doctors’ orders. If anyone knows me, they know I love coffee, don’t care for breakfast, lunch maybe if I’m not busy, or a snack but dinner yes and always. Well that would not work for 2 growing babies. So, we were on a “fatten them up” mission.

By 28 weeks 1 day- I started to feel like the time was coming. Where I got this feeling, I do not know but I know I have a mommy Sixth sense. So, I told my mom to get their bags ready (not that it would make a difference because they would not go home). During this time; I was nesting and had the most cleanest room probably in the whole hospital. I began to wonder what it would be like if they were delivered now so I requested to speak to the NICU team and my high-risk doctors again. We wanted to know what we should expect. The team and my high-risk specialist were great in answering all our questions.

28weeks and 6 days: 4-28-16 at 5:15am- I woke up as usual to go use the bathroom except this time I had cramps (same ones that you get during your period). I went to the bathroom, and my husband woke up next to me with that worried look on his face-( he had that same look for the whole 8 weeks- so much so that the staff would walk in and ask him if he was ok first before me ) – I told him I needed to use the bathroom. I went to go to the bathroom and today of all days I had NO bleeding. How can that be? Well right after that thought, I started to feel more cramping but now I started to breathe through it. Once it was over, I opened the door to my room and looked out for my nurse (love her to death, nurses are a Godsend, especially when they are the amazing staff at SB antepartum). We locked eyes, and she said, “good morning Gee, I’ll come look at the bleeding in just a minute and check on you too”. My response was “ummmm I’m not bleeding, I’m cramping?.” Her reaction was priceless “Gee you don’t cramp, get in the bed I’m coming right now!”  I didn’t even make it to the bed, when she walked in, helped me while calming my husband down, and hooked me up to the monitor. She told me that it was change of shift (of course Kadir picked that time frame because why not come when the doctors are actually in the hospital?) and she needed to find the residents. Well from her leaving the room and coming back with the resident maybe 5-10mins my cramps turned to full contractions 1-2 mins apart while I was trying to breathe through them. The resident insisted she exam me and I told her that as per my high-risk specialist “NO ONE exams me”. While we waited for my amazing high-risk specialist to come in, everyone kept insisting on examine me and I told them I need to refuse till she comes. When she arrived everything moved fast, she tried to stop the contractions and labor, but nothing worked. So, we were rushed to the OR for a vaginal delivery attempt but possible C Section if baby B flipped or anything would go wrong. We had 10-15ppl in that OR room, from nurses, to 2 NICU teams for each baby, anesthesiology fellow and chief, NICU chief, plus I don’t know who else.

I pushed baby A (Kadir)max 4 times and he was delivered in 2 mins they said. 10:16 started pushing- 10:18am he was born.

Welcome to the world baby Kadir at 980grams – he was so tiny, thin  🏻🏻. He had Nuchal Cord which is when the cord is around his neck. He was on a nasal cannula, but they wanted to give him Surfactant, which meant they needed to intubate for a short time. Well he is a fighter. He refused to let them at first. Lol it was so cute. Finally, before transporting to NICU, I held him, and he was making little crying sounds. Lol he was so small but full of hair and a cutie pa tuttie. #biasedmother

Back to delivery: Kadir’s placenta did not deliver and was actually in baby Bs way so after 1.5hrs of waiting and trying to push neither the placenta or baby B came out- The doctors decided to monitor baby B in L&D room 309 (OR room 3 would be left as is in case of an emergency for me). I was started on Pitocin and was in different positions to help descend the baby or Placenta. Well this girl is a diva and she refused to come out. Her head was also slightly hyperextended due to Kadir’s placenta being in her way. They were going to wait till 4 pm before deciding what to do but then at 2:30ish she started have sever decelerations of her heart rate during contractions (Pitocin at 5). So, the whole team rushed in for a Stat C section and got me into the OR, the chief and resident anesthesiologist had to fix the issue on my right side not being numb enough. I apparently had a channel that was not working with the meds. So, as they cut me, I was feeling the cutting and cauterization as they went through each layer. (Later I found out, they cut the same incision site as Amir’s C section but had to go up for the uterus incision site.) So, they stopped while I was loaded up with more meds, knocked me out, and delivered Baby B. Amara Mia was delivered at 3:34pm, 1070grams with her grand entrance 5 hours after her brother. She was a fighter and kicker too. The NICU teams were very entertained they said by her diva attitude and for making them wait.

Every day in the NICU was a new day. Being a mom, trying to be with both your babies in the NICU and the one at home is so hard. So, I made a schedule. I sent up my office in the NICU rooms, I pumped constantly, worked and took care of my two cuties during day. Then I would go home at 4-5pm, meet my husband & mom, eat dinner with Amir and then either after he went to sleep or right before- we would go back to the NICU for night rounds, then we would leave anytime from 11-2 to 3 am. During these months Amir was taken care of by my mom, but he was very much affected by my 8-week absence from home and him. He couldn’t understand that mommy had a brother and sister for him to take care of too. It is something I still deal with today. I pray he knows how much he is and was loved but I had to do this.

The amazing nurses and Physicians and NP’s and the entire staff at Stony Brook NICU was the reason why we were able to deal with what was happening. They made us comfortable and our primary nurses (you know who you amazing ladies are) treated our twins like their own. One of the most amazing NP’s even had another mom talk to us to explain how the NICU works and to be patient because eventually my babies would be healthy enough to go home. We are forever grateful. #secondmommies

NICU days: Within the first week Kadir became ill and started to show signs of an infection. He also coded and was resuscitated due to airway issues. I remember every second of that day vividly. And I thank the NICU for what they did that day. They saved him and didn’t need to intubate him. Because intubating a baby with BPD (bronco pulmonary dysplasia) and then trying to extubate him would have been a hard task.

As time moved on: Kadir was treated for reflux but Amara was not even though she had physical signs and symptoms of severe reflux. After arguments from me and my nurses- an impedance study was done on July 5th to the 6th and it showed severe reflux which had caused micro-aspiration to Amara’s lungs. They tried medications, but the damage was done. My newly breastfed baby girl didn’t want to breastfeed because it hurt her. It hurt so much to lose that bond with her. She started to have an aversion to people she didn’t know. She would get scared, open her eyes wide, hands up in a guarding position and hold her breath. She went through so much- including hours of the NICU trying to get a line in her but they couldn’t until they finally did. At one point I was holding her down to help them and my heart was breaking but she needed it. I hope she forgives me because I just wanted her to be ok. I would have given anything to take her pain away. I would have given my life if she didn’t feel one ounce of pain or hurt.

Eventually we were told she would get a Nissen fundoplication (this is a procedure to wrap the head of the stomach around the esophagus) to help eliminate the acid from her stomach refluxing into her airway. She had a scar from below her xiphoid process to above her belly button and a g-tube place too. The G-tube was to help feed her till her esophagus and airway healed itself. After the surgery, getting her off intubation was the scariest part of all. Not only for us but for the whole team. They checked on her constantly. When she was extubated- everyone was filled with joy.

Now the feedings and goals to get both babies home began.

Kadir was now doing better and growing. He was a social baby who loved making sounds and flirting with all the nurses. He even kissed one of our primary nurses before he kissed me.

Amara was always the quiet one. She would look up at you and it’s like she knew something you didn’t. She would fall asleep on me all the time. She loved to dance with me while I sang to her. She loved her own space though, if I had Kadir next to her, she would get mad and cry. Lol. One day I had her on my shoulders sleeping while Kadir was on the boopy because she did not want to be next to him.  I said it then “And it starts at this age.” I would pray to see them fight now.  she would have been the boss in the house for sure.  She had a fighting spirit, she had spunk, attitude (from her mom of course- sorry daddy) and beautiful eyes that could read your soul. She was absolutely gorgeous, with her curly dark brown hair that felt like silk every time i played with it. She loved it when I played with her hair and when I kissed her feet. From the first time I was able to hold her in the NICU I kissed her tiny feet and after she passed away I kissed her feet. I wish I could kiss those feet now. Because I remember every detail of her hands, feet, face and hair. I remember her smell and how her eyes looked up at me. I remember both of them falling asleep on me while I was reading to them their 365-story book and thinking that one day I would be taking her to get her nails done with me, getting dressed with matching outfits on and having girls days out- just Mommy and Amara. Just me and my baby girl- while the boys do manly things with daddy. Those days will never happen now.  I will never have Mommy and Amara days.

I would read, sing, listen to music with them every day, bathe them, clean their beds, feed them, kangaroo them, rock them to sleep all the time. I am so glad I stayed in the NICU with them and spent as much time as I did. I can truly say I was with her every single day of her short life. I would do anything to get one more day, one more touch, one more kiss, one more kangaroo time, one more dance back. I would give my life to have her get hers back.