Sunday, April 28, 2013

One month old

Hooray! We are one month old! (Aviva on the left, Violet in yellow)

My adorable girls are a month old. We have been home with them for two weeks and it has been exhausting but fantastic. The beeps and alarms of the NICU are fading from our memories, we aren't kept awake by other people's screaming kids and we get to have our family together.

Violet and Aviva are still gaining strength and getting bigger. We think they will be eating all their food on their own within a couple weeks and the feeding tubes can finally be a thing of the past.

I am loving being in my own home and with Riley and Neil more. It is crazy to think that I was living at a hospital for nearly nine weeks. I miss some of the midwives who cared for me while I was there, but not enough to move back in.

The reality of being a mom of twins is slowly sinking in. I didn't let myself think about it too much during pregnancy because I wanted to get the babies out alive first. But as we inch toward being finished with the feeding tubes and the nurse visits, we are coming out of being in a rare and perilous situation - monoamniotic twins! Premature babies! Extended stay in the neonatal unit! to being a normal family with newborn twins. Turns out, this isn't very easy. We have three kids under three years old. It is a zoo around here.

The girls eat and get diapers changed every three hours, and until they are done with the feeding tubes, I pump every three hours at different times from their meals. This basically gives me 30 min between things to do things like nap, eat, and shower. It is brutal. And yet, I feel it has all been worth it and will continue to be so as long as I am blessed to be these little girls' mom.

I must now give into my exhaustion and get some sleep.

Thursday, April 11, 2013

Gratitude and Going Home

During my nearly nine weeks (NINE WEEKS!!!) in the hospital I have met dozens of amazing health care professionals. From the committed team of midwives who helped find my squirmy babies' heartbeats three times a day for six weeks, to the team of doctors, anesthesiologists and nurses who cared for me during my c-section. From the incredibly gentle and patient NICU nurses, to the pediatricians who saved Violet's life when her lung collapsed and have watched over the girls since they were born.

One of the privileges of being a patient here for so long is that I was able to form relationships with several of the people who have cared for me and the girls. I will truly miss the midwives and nurses here. One of the more special relationships for me and for Neil is with the gifted and committed doctor who watched our girls grow and carefully examined them with twice weekly ultrasounds and then performed the c-section when they were born. Anne Marie is a tall Finnish woman who we first met on a tour of the maternity ward of the hospital when we were deciding if we would stay in Denmark for the pregnancy or move back to the US. Our relationship started out tentatively. We had met many ultrasound doctors already in this pregnancy and at least two of them had offered options to terminate the pregnancy.

Any fears we had about Anne Marie were completely unfounded. She was so kind and so thorough each scan, always checking each girl's blood flow at critical places in her body, all the organs, and of course, the cords. After six weeks and twelve or thirteen lengthy ultrasounds, we knew each other pretty well. During all the measuring and monitoring, Anne Marie would occasionally point out things like hair on the babies heads, good images of their faces and their lungs moving in practice breaths. I got the feeling that not only did Anne Marie understand why I checked into the hospital so early in the pregnancy (26 weeks) but that she also let out a breath of relief each scan when things still looked as good as they could for the babies.

A week or two before the scheduled c-section, Anne Marie told us she would be doing the surgery. We didn't even know she was also a surgeon at that point, but having the doctor who knew the twins best perform the surgery seemed perfect.

I am not sure when exactly Anne Marie worked her way into my heart. Was it during my six weeks of hospital time before the girls were born? Was it the moment when I realized she was invested in the outcome of my pregnancy and was rooting for us? Was it when she safely delivered the girls? Maybe it was when she came to the neonatal unit to check on me and the babies a day or two after the operation? I can't be sure, but at some point I realized how big a part she played in the miracle of our girls' lives. She helped watch over them and then brought them into the world. We could never repay her for all that she has done for our family. But, of course, she wouldn't allow it if we could.

A few nights ago we ran into her and began talking about how incredible it is that the umbilical cords were not entangled when the girls were born and how miraculous the whole pregnancy really was - how week after week there were no problems. As Neil was saying this, I could see that Anne Marie agreed. Her eyes got a little misty. I then tried to thank her and got about halfway through before bursting into tears. (I am sure some of these tears can be blamed on post-partum hormones, but I think I may have cried even if hormones weren't a factor.) She gave me a huge hug.

How do you thank someone like Anne Marie? I have been grappling with this. How do I tell her that she will always be with us, always be a major character in our family's story? I am sure we could have had a fantastic outcome with less personalized medicine. We could have had 12 different ultrasound technicians and a surgeon and still ended up with the same positive result, but the personal connection and continuous care we received here was so much better, its value unquantifiable.


In other news, after nearly three weeks in the NICU (and a total of almost nine weeks for me in the hospital) we are going home on Saturday!!!! The hospital has a fantastic early release program that allows us to go home and remain there while the girls get stronger and learn to eat on their own. A nurse will visit twice a week to make sure we're on the right track and we get to bring our family together at long last. We are thrilled. It is, of course, a little scary to take on all the night feedings and all the care of the girls, but we are ready.

For several days now (since Monday night, I think), the girls have been off the heart and oxygen monitors that kept them tethered near their beds and are only connected to small hand-held apnea monitors. Today we took them around the hospital to meet some of our favorite midwives and visit an old roommate of mine. Being able to carry our babies around is fantastic as is not worrying about the numbers on the monitors and just focusing on the babies to determine how they are doing.

When we go home we will have the monitors for a few days and then the nurse will visit and remove them! At that point, the only remaining piece of equipment on our babies will be the small feeding tubes that run through their noses to their tummies. Neil learned how to put one in today because the girls have become fond of pulling them out. As soon as Aviva and Violet can eat all that they need to keep growing on their own, the tubes will come out and the nurses will officially discharge the babies from the hospital. Until then, we get lots of support and get to be in our own home.

My own home, with Riley and Neil and Aviva and Violet. (And my mom and dad who are here to help.) I cannot wait...

Wednesday, April 3, 2013

A week and a day in the Neonatal Intensive Care Unit

So much has happened in the past week that I am not even sure where to begin. I woke up on March 26th feeling trepidatious about having major abdominal surgery and about the well-being of the twins after being born at 32 weeks and 3 days gestation. I was also excited and just wanted the surgery to be on time. Unlike many things in my 6-week hospital stay, the surgery happened promptly at 9:30 in the morning. They wheeled my bed to the operating room, I sat on the table and, after a team of very friendly anestesiologists had numbed me from the middle down, our twins were born almost simultaneously - fitting for two girls who had been sharing the same space for the past 32 weeks.

Other than the relief of hearing two tiny cries and getting to kiss my babies on the heads before the doctors took them to the NICU, I remember a few things about the surgery. One: The doctors and nurses were incredibly kind. They were professional and business-like, and also had unbelieveable bedside manner. I wasn't expecting anyone to be mean to me, but I didn't expect the added level of compassion either. Two: I could not stand the feeling of my legs and feet going numb. It was extremely bothersome to me to be unable to move my lower extremeties and yet somehow still able to feel them. Three: I am pretty positive they were hitting my uterus to make it contract after they sewed it up. This was disturbing.

And then we had babies. I had to spend time in a recovery room regaining my feeling, but as soon as I could competently move my feet, I was wheeled to the NICU to see the twins. Aside from one night in my old room, I have been sleeping beside Aviva and Violet ever since.

It has been a very eventful week. Violet had a collapsed lung her first night which led to a drain in her chest to remove air and a ventilator to help her breathe. It was excruciating to see her lying in her bed in pain (mostly from the drain). Fortunately, her lung healed quickly and within a few days (which felt a bit like an eternity to me) the drain and ventilator were removed. For the past several days she has been breathing room air on her own and her sister Aviva got the annoying CPAP (which puffs air in babies noses to remind them to breathe) removed today. I can now look at both of my babies' faces and see their noses. It has been a really good day.

I think that because I knew these babies would be born early no matter what, I was prepared for a certain amount of blood draws and needle pricks and tubes to help them in the early days. I have been much tougher than I ever thought I could be. I am the mom who broke down in sobs when Riley had to have a heel prick on his thrid or fourth day of life. But being in the NICU is on a whole other level.

It is very warm in our room and nurses and doctors come in at all hours to check on the babies. The lights are always on and many nights the door is left ajar. I am sure my lack of sleep has slowed my c-section recovery a bit, but it is amazing that both Neil and I have been able to sleep here since the babies were born. Our lives have taken on a rhythm of checking oxygen levels and every 3 hour feedings. We have become used to the whirr of the various machines and all the different beeps and other noises.

For all of the commotion and intensity of the NICU, it is also proving to be a very peaceful place. The highlights of my days so far are hours spent holding the babies. As more tubes and wires are removed, it has become easier to hold them together which is pretty fantastic.

Such a weight was lifted from my shoulders on March 26th when my girls were born and no longer in peril in my belly that I think in some ways, I am still floating through my days with relief. Next steps, teach the babies to eat on their own and fatten them up. Then, soon after that, we can finally go home and be a family. That is the day I am longing for most. I hope it will come soon.