Since my last update the girls made huge progress. On the 10th of July the nurses reckoned the girls were doing well enough on oxygen saturation to remove the CPAP. This was an anxious day for me: I was so keen to have them free of the damn CPAP (which they really hate, the equipment on their faces annoys the hell out of them, and it hurts their little tiny noses when the tube goes askew) that I was holding my breath (yup) hoping they would be able to keep oxygen saturation above 90% without it. They did really well for several hours, but after about 8 hours Sophia had several episodes of bradycardia and they decided to re-attach the CPAP. I was a bundle of nerves, because the super scary alarm goes off when they have bradycardia, so it had been a very bleepy and stressful day. I have to admit I was disappointed to watch them put the bulky equipment back on her, but she was very tired from the day breathing without any help, and she needed it.
The next day, one of our lovely nurses Jeanette replaced the CPAP with a nasal canula, which is does a similar thing but is smaller and less annoying than the CPAP. The girls did so well that day that the nurse removed that too, and all of a sudden they were managing just fine without any help. Everyone said it would be like this, that they would suddenly develop and be ok without it, but it was pretty cool to see it happen. Now everything seemed to progress really quickly, and on July 16th the monitors were disconnected. So we had wireless babies for the first time!! It was weird at first, I kept glancing up to the monitors out of habit, and finding them switched off. They left a small apnea monitor in place to sound a alarm if they stop breathing for 20 seconds, but it was never triggered, the girls were breathing and not forgetting!
The hospital offered us what is known as early discharge (tidligt hjemmeophold), which is where stable babies over 35 weeks go home and are visited twice a week by a nurse. The nurse Inge is very kind and comes to weigh the girls and check that we have it under control (ha ha). Every week we update the amount of milk for feeding and the ratio of nasogastric tube (NG) feeds vs breast feeds so we can ultimately remove the NG tube. I was a little freaked out about taking the girls home when they are still fed by NG tube but I was sick to death of living in a hospital. So we started the discharge process. Chris learned how to insert the NG tube in case the girls pull it out any time, and we learned about what to do if they stop breathing. This was a surreal experience for me. The nurse taught us how to breathe into the baby’s nose and do chest compressions using a (rather creepy) rubber baby doll. If the baby stops breathing and starts turning blue don’t panic, breathe into her nose (cover her whole nose with your mouth and breathe out, lift, repeat 5 times). if this doesn’t work, one of you phones the emergency number while the other does 15 chest compressions (press down firmly in the middle of the chest between the nipples)…..I didn’t even want to contemplate that they might stop breathing, but it was good to have the knowledge in mind.
In typical Danish style they asked me ‘So when do you want to go home?’. I was like, you tell me sista! And they pronounced Friday 18th July the happy day. We arranged car seats and a lift home from a kind friend, and I was shaking with excitement and some fear. Shit just got real man.
We went and bought baby vitamins and iron, nappies and bum wipes. We were going to be solely responsible for the care of our tiny little babies. The day before discharge, we gave the girls a nice bath, which they absolutely loved. The minute they are submerged in the warm water they just go limp and smile like ‘oh yeeeaahhh’. It’s too cute.
We arranged to go home at 11am, and I was so excited I was unable to sit still all day. I packed all our stuff- we had accumulated a lot at the hospital, including clothes, books, gifts, food and of course my stock of extra frozen breast milk, which we would take home in the car and in the cargo bike (aka The Beast). I went to the 7/11 at the hospital and bought us our last (questionable quality) frappucino. This was a treat we indulged in from time to time to break the monotony of living in Rigshospital – a cold slushy creamy overly sweet mess, and one that lifts the spirits and the blood sugar. We toasted goodbye to the linoleum floors and neon lights, the hushed halls of the neonatal unit and the anxiety of the parents within, the sound of monitors and alarms, and the feeling of never being left in peace. Of course we knew it would be tough at home without the kind nurses that looked after us so well and did the 3am feedings for us (oy vey) but we were ready for phase II: Solo Parenting.
The pediatrician came and made a final examination and declared the girls just fine to go home with their under-experienced parents. There was a possible murmur in Olivia’s heart, so a cardiologist came and did an ultrasound before we left, but there was no problem, so we got the all clear. All in all our stay in the NICU was really amazing, the care was professional, efficient, sensitive and free! I ♥ Denmark.
So many things are different at home and I was worried that the girls might be freaked out by the new smells and sounds, but they have been fine. It’s been super hot here, so there has been no problem keeping them warm enough. They are slowly getting stronger and bigger and learning to breastfeed. Now they weigh around 2.5 kg and their gestational age is almost 38 weeks. Hopefully in the next weeks they will steadily gain weight and strength so we can wean them off the NG tube so they can exclusively breastfeed.
When I am not pumping, I am trying to get the girls interested in the boob, so I am pretty much topless all day, heaving my comic-book-style pendulous, leaking breasts around the flat. Funny enough, just before I got pregnant I was keen to meditate more often I bought this awesome meditation pillow to sit on, very conducive to many hours in lotus (ha ha) but then morning sickness struck & I never did get into a daily meditation practice. These days I sit on the pillow on the floor while expressing breast milk 7 times a day, it’s a kind of meditation I guess…..I pump so darn regularly that I have repeated the sequence of wash-sterilize-assemble on the breast pump parts so many times that I can do it in my sleep (kind of like one of those hardcore army guys that can clean & reassemble a rifle wearing a blindfold). Breastfeeding inevitably leads to spills and drips, so I am pretty much constantly soaked in breastmilk and I change clothes several times a day. As far as actually breastfeeding, I feel so helpless, I know next to nothing about it. I got some help when we were in the NICU and from the home visit nurse, and I have read a bunch of books and watched some youtube videos about breastfeeding, but it would be nice to have some expert advice on hand….. After some practice, I can get both of the girls latched and feeding in cross cradle and football orientations. They can keep it up for a maximum of 20 minutes these days though it’s quite a mission to coordinate the suck, swallow, breathe business. They are getting to be such pros that we even tried a tandem feed. It worked out pretty well, a little symphony of suction, quite the experience! It is really cool to know that they are getting fed at the source and it is a lovely bonding experience. Luckily they are not in the habit of mangling my nipples (yet) so its painless, except when I inadvertently hunch up my shoulders. It is frustrating to know that moms of full-term babies don’t have to wait for weeks for the little ones to gain the strength they need to do what babies do best. But if this pregnancy has taught me anything it’s that patience is all there is to it: you have to wait, so wait! It should only be another couple of weeks as they transition to breastfeeding and then we can kiss the NG tube goodbye…..
The first days home were a little hairy since we had some problems with the NG tube. The tube is inserted into the baby’s nose and quickly pushed down the throat (see here http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/HomeHealthCare/Pages/Nasogastric-NG-Tube-How-to-Insert-Your-Childs-NG-Tube.aspx). First you stick a piece of specialized tape on the baby’s cheek and then place the tube on the tape, and secure it with another piece of tape on top like a sandwich. The day before we were discharged from hospital they got a new brand of sticky tape (I know right?), and it was not as sticky as the old one. In the first 2 days Olivia pulled her NG tube out twice because the top piece of tape kept getting loose. Then we had to remove the tube and insert a new one. She cried when we had to pull off the bottom piece of tape, and it sucked to know that yes, she is crying because we are hurting her. Thank Christ our nurse had a little stash of the old tape which she handed over, I wanted to kiss her, and since then we have had no issues.
But mostly the girls are so funny. As I sit writing this they are engaged in a chorus of grunting and farting, really loud farting that you can hardly believe emanates from such a cute little baby girl. I am told that the grunting is part of prematurity- the digestive system is not that efficient yet.
So all is well and now I just have to get my neurosis under control. It was hard in the NICU to see the babies all hooked up and feeling helpless to make the discomfort stop, so at least they are mostly wireless now and they seem happy. But having 2 tiny babies that are susceptible to infection (seehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659282/) makes me a little overprotective (Grrrrrr!), a little obsessed with washing my hands and quite reluctant to get out of the flat. The world is full of germs man. Especially the bus. But we had to take the girls to the hospital for a hearing test (standard stuff, they passed just fine) this week, so we had to practice baby wrangling on the move, armed to the teeth with hand sanitizer and big sticks to fend off nosy do-gooders interested in twins…. Carrying them in their lifts down to the pram in the courtyard of the flat I realized that by the time maternity leave is over I will have huge Schwarzenegger-style biceps from taking them up & down 4 flights of stairs. Once we were out in the summer day I was totally paranoid about the sun shining on them, or the wind blowing on them and giving them a cold, or dodgy sneezing bastards on the street contaminating them with microbes, but Chris came to the rescue. He really knows how to neutralize, or at least manage my extremes. He covered the lifts with a cloth so they were protected but still getting some fresh air, and he distracted me with an iced coffee and promises of ice creams later (I am a big baby too). Luckily the girls are so chilled they slept through our entire exciting adventure, while Chris & I just wished we could sleep after an exhausting day out!
These days I find myself having a lot of arb questions and worries (‘can the babies sleep in the room with the window open when the wind is blowing? Is a breeze going to make them sick?? Cos they’re so tiny and helpless….’; ‘I know they can have a pacifier but how sure are you that it won’t mess up their chances at breastfeeding? Cos I sure as hell ain’t using a frikkin’ breast pump forever….’; ‘How soon will they be able to breastfeed & what if they never manage?’; ‘is it normal that they grunt so much after feeding? Does it hurt? What can I do?’), and I feel woefully under-experienced for this task. I have found scattered tidbits of information on how to take care of premature babies, but nothing really solid. We are going to have to figure it out as we go along, at least Chris & I are in this together. Between us I reckon we’ll manage.