Learning to breathe again after the deaths of my twins, Nicholas & Sophia, my son, Alexander, and 6 miscarriages... and finding joy on the journey with my sweet preemie twins, Bobby & Maya, and our miracle TAC singletons, Michael, Lucas, and Ana.
Monday, September 14, 2009
NICU Day 4/ Day 54
Two posts in one... I'll start with "my" post then move on to the NICU post...
54 days in the hospital... 50 days in the hospital pre-birth and 4 after. I cant believe that I am now at home, sitting in my own bed... That I left the hospital again without my babies... That, instead of in the morgue, my children are resting comfortably in their NICU isolettes... (And I know that they are because we called and checked on them; I dont think I could do anything without knowing they were okay at night before bed).
Last night, as we left for the NICU, I noticed I had a new neighbor in the room that had been empty for several days. She was younger than me, black, pretty. She smiled at me as I looked in and walked by, and I smiled back as I waddled down the hall. A friend of hers (or possibly a sister, cousin, someone close in age) was sitting with her and they were joking together. She laughed. Peter and I talked about seeing the babies again and continued our walk towards the elevator.
As we walked back down, 2 hours later, the door was closed. I pumped about an hour later and then we went back for our next visit. The door was still closed. Perhaps she was in L&D? I'm not sure... It was quiet on our hall.
We came back down, after a relatively short visit. The babies were resting comfortably. We helped with their care (changing diapers, etc) and then walked back, on the high of touching them, singing to them, talking to them. We talked about their eyes opening and how they looked at us... How they would grab our fingers and not let go... How Maya loves her belly time and Bobby will struggle to get his feet out of his "boundaries"...
The door was closed. And there was a note. "Please see Nurse before entering. Thank you."
I know that note. Where we delivered Sophia and held Nicholas after he had died, there were no words, just a letter sized rose that said it all. But Lankenau is where we delivered Alexander. And that note was placed on our door. "Please see Nurse before entering." This woman's baby has died. I remember stopping and saying "Oh my God" and Peter looking at me with anguish in his eyes. He had told me about the note taped to our door after Alex; I'd never actually seen one. "That note looks like the one we had," he said. There werent really any other words.
Back in the safety of our room, I cried. I'd spent part of my day trying to convince myself that I hadnt failed the babies by delivering them early. That 28w was a good place... That they were fine and thriving... Reminding myself that there were worse things than premature babies; that I would have given anything to carry our older children to 28w. Hell, to 24w. I would have been thrilled. And now, all I could think of was the woman next to me, grieving. Destroyed. How her day had been fine before and now... Gone. All that gone. This is the second family that, in 7 weeks, I know delivered and buried their babies. That doesnt account for the ones I dont know... I'm sure there have been more in the hospital; it isnt as though they play a special song when a baby dies like they do when a baby is born. There is no announcement of "the club".
I woke in the middle of the night to screaming. In my dream, it was Bobby and Maya crying and I found myself instantly awake before realizing I was laying in my hospital bed and the screaming wasnt in my room. It was next door. My headboard is against hers, with only the wall between us. She was screaming. It died down into a wail... And then, into a sob... And finally, whimpering. The realization that your baby has died. That this isnt a nightmare you can wake up from. That your life is now the nightmare. I just laid there and cried with her until I fell back to sleep.
Peter decided to tell our favorite nurse to feel free to pass our info onto our neighbor, but by the time we came back from the pumping/NICU visit (where Peter held for the first time), the door was open and the bed was stripped. That note remained, but our neighbor was gone... Nurse K said that she would pass the message along to the patient... This woman left the hospital without her baby and she cant go back tomorrow to see them. I know that feeling. And because I know it, there is no news that can possibly be that bad. It mitigates the NICU rollercoaster in a lot of ways. There are worst things than CPAPs and bradycardia episodes and fetal echocardiograms... Your baby could be dead.
Dr Bailey came by this morning and saw us. We went over the birth story and he was just as lost for words as everyone else. He said that he'd certainly review the pathology report when it came in, but that, outwardly, I had no signs of infection and he would have expected something... a rise in temp, pain, anything. But the 0-60 labor in an hour... That wasnt something he would have forseen either. And, because he is so sweet, he said that he wouldnt discharge us until the evening. "Enjoy your babies without having to worry about leaving and coming back tonight," he'd said. We both really appreciated that. With still trying to deal with the drugs and pumping, etc., having that extra day with a room to come back to and rest in was wonderful. In fact, after our 11am/12pm visit, I came back and pumped at 1pm, then took a nap from 2pm-5pm because I felt so bad. I missed the 2pm/3pm visit (Maya is now an hour ahead of Bobby instead of behind) and was late in pumping. (My pumping is getting so much better! There is now enough that they dont need my immediate pumping for feeds. They have some surplus. YAY! I'm now in the largest syringes!)
Dr. B. returned while I was pumping. He was going to go up and see the twins afterwards, but was coming to discuss discharge. Showering, walking, no sex, no driving... The standard. He told me to pop by the office on Wednesday or Thursday after I've been to the NICU and he will remove my staples, no appointment needed. To make my postnatal for 6 weeks from Sept 10th. That the nurses are all excited to see me and to remember to bring pictures because they are excited to see the babies. He answered our questions about what to look for, in terms of c-section issues and what to do with a subsequent pregnancy. He doesnt recommend the TAC, especially if we cant figure out why I went into labor this time. He said that he's seen women look have a "textbook uterus" but really have something that causes preterm deliveries. That it could simply be I cant carry a twin pregnancy beyond 28w but would be fine with a singleton up to around 34w, but that, at this point, we dont know. That a Shirodkar with a singleton wouldnt require the bedrest I was on so early and that he estimates the more 2 hours up/1 hour off that we had discussed previously when we thought we may only be pregnant with one baby. He recommended that, when we do decide to try again, that we only trigger one follicle. It would take a lot longer to plan out, but he would like to see us not have multiples again. He is afraid that I would never get farther along. These are all things to consider, but right now, seeing Dr Lee for pregnancy isnt on our radar. We have to figure everything else out first... Like getting our babies home from the NICU and relaxing into life with them at home... Then we can discuss another pregnancy... If that is even in our future. Perhaps we will adopt our next child. We arent sure yet. These things will present themselves when they do. But I digress... We were given our discharge paperwork at 6pm. I finished pumping and Peter took the milk upstairs. We finished packing up and he stocked the car. We said good-bye to our nurses. We took the final look around "our" room, which now looked empty... Like a stock hospital room... And then we took our last walk as patients up to the NICU.
We went by our local pharmacy when we got home and then, once I was in bed, I pumped. Afterwards, as I was getting ready for bed, I turned to move a pillow and PAIN. Of course. This doesnt happen in the hospital, but it happens at home. Instantly, I felt the area around my staples swell. The pain was like turning an ankle: sharp at the moment of impact but dull after. Peter helped me lay down and he looked at the scar. Yep... Swelling... Especially around a couple of stitches. I freaked out. He called APU and explained what happened, and the nurse told him it was normal. To ice the swelling and to give me ibuprophen... That it happened when the staples were irritated and turning probably did that, but to not worry about ripping my uterus stitches. Of course, I was such a mess that poor Peter also had to consult Dr Google (twice) before I could calm down enough to sleep. So, we iced and that made some of it feel better. Then I went to the bathroom (with help and man, did it hurt to sit up) and I'm on ice now. I'm going to bed soon. We will see what tomorrow shows...
NICU Day 4
The babies are 4 days old... I cant believe it. Today, Peter told me numerous times that it was "his turn". He's been so excited to kangaroo the babies. We went upstairs and they were both perfectly resting. We made it up at 11am, where their nurse was already working with Maya, cleaning her, checking IVs, changing her diaper. Peter changed from his shirt into the open robe and sat in the recliner that the nurse already had ready by Maya's isolette. He waited patiently (well, as patiently as he could) for the nurse to put his daughter in his arms. I will update this post with pics tomorrow, but for now, my phone is out of reach and those are where my pics are. Also, you can check out the baby blog later tomorrow and see the full pictures. Maya cried slightly when the nurse removed her and placed her safely on Daddy's chest. She settled into him and whined a little until her fingers found his chest hair. She wrapped her little hands up in the thick pillow and wouldnt let go. I couldnt even get a finger grab! She was perfectly content. He sang to her and talked to her. She would play with the hair from time to time, but mostly just napped against her daddy, fingers entertwined... I watched in awe at the beautiful image they presented. Clearly on the inside, but clearly on the outside... It was beautiful.
I went to Bobby when it was time for his care, while Peter continued holding Maya. I changed his diaper and he just watched me. His CPAP was off for the entire time the nurse and I did his care. He held onto part of his diaper so that I had to struggle to close one side. :) That's my boy... Wants his nakedness! I held his sweet little head with that soft, dark hair between my fingers. It was beautiful... I loved it. I heard the NICU doctor talking to Peter and, once Maya was returned to her isolette, he came over and we chatted while he waited to hold Bobby. (More on that momentarily). When Bobby was placed in his arms (with his CPAP returned, just to be safe), again... Such a beautiful image... Again, a lover of chest hair. Bobby watched him for a while before falling asleep, safe in his father's arms. I just watched... It was such a quick hour (as was Maya's). I loved watching, almost as much as holding. I had to leave before Bobby was returned to his isolette so that I could pump.
The doctor spoke with Peter after listening to the babies' hearts. He heard what he thought was a small murmur on Maya. A neonatal cardiologist was coming from Dupont (where Dr Bott came from) to do echo's on both babies. The doctor didnt feel it was a huge issue because the murmur was barely detectable, but better safe than sorry. They also wanted to evaluate if there was a reason why Bobby was having momentary issues with his heart dropping them returning to normal.
The echo was done during the time I was asleep. Peter had asked the NICU to call before hand so that he could be present. He loved Dr A, the cardiologist. He brought back a detailed description of what happened and was impressed with the doctor's interactions with both our children. He also was happy with the way the doctor treated him.
Bobby: He said that his heart looked perfect. There was a very, very minor issue with a duct sort-of closing but not completely. I forget the name of this, but is the duct that connects the two portions of the heart that normally closes upon birth. Bobby's looks mostly closed. He said that it is such a mild issue that treatment doesnt "need" to occur, however, since we are in the 2 week window when some neoprophen (baby advil basically) can help, there is no harm in doing so. But, overall, an outstanding report.
Maya: He said that her heart looked perfect. Again, she had a very minor issue with a different duct, this one that is by the heart-lung connection and was what the doctor heard. He said that there are three classifications: minor, moderate, and serious. Minor is something they can barely see but not hear, moderate covers hearing and seeing, and serious is, well, a real problem. Technically, Maya's is classified as moderate because the NICU doctor heard it and he could see it, but he said it measures the lowest they can measure and that he would consider it minor. Again, as with Bobby, he said he'd treat it with the neoprophen and that it should cause no issues. Overall, a great report.
They will be doing brain ultrasounds to check for bleeding on the brain since that would impact being able to give the baby advil. It was supposed to happen today but as of our evening phone call, it hadnt, so perhaps tomorrow. They also checked their platelets. Maya's looked good but Bobby's are a tad low. So, they will treat that before giving him the advil.
The nurses and doctors tell us the babies are doing well. We couldnt be happier. If these are the downs of the rollercoaster right now, then, in comparison to the downs we've experienced, these are much better than the alternative.
Our last visit today was heartbreaking. The babies were doing so well. They were sleeping and peaceful. We couldnt reach in to touch them to say goodbye. We just watched them and said our "I love you"s through the plastic. It hurt... So much... To walk down that hallway and to know that I wouldnt be an elevator ride away. Oh God... I had no idea it would be so painful. I hadnt been able to think about it. I made it to the elevator before crying. We got to the car and I was okay for most of the ride home. We talked about them and that helped. But it still hurt. It hurts now as I am at home. It hurt when Peter called the NICU to check on them and I wanted to be there to kiss them goodnight.
But they are safe. They are 4 days old and safe. That is all that I can ask for right now...