Courage and patience

Good morning, Sofia!



Phew....that's all I can say after the week we've had. Courage and patience ran out sometime during the week, but we're glad to finally welcome them back into our lives today. :)

I mentioned in the last blog that the move to Jorvi was a bit scary and that we were missing the NICU. Well, it turned into a nightmare. Jorvi is a good hospital and the nurses are all trying their best I'm sure, but as parents who have already been through ten weeks of heartache it's easy to be picky. The nurses were doing everything so different from what the babies were used to, and the doctor was too. Some of the nurses in charge of our babies were even students. Many of the nurses seemed quite nervous and were very jumpy every time the oxygen saturation alarms would go off. Some of them were shaking the baby and talking in a loud voice to wake the baby up every time there was even a small saturation dip (I'm used to those dips because they happen ALL the time, and usually correct themselves in a few seconds). Sleep is one of the most important things for the babies right now and I think it might be a bit hard to get good sleep if someone is coming in the room and shaking you every 5 minutes. They still have a paper system at that hospital and nurses had been forgetting to write certain things down...critical information like how long an apnea had lasted. One nurse even told me that Sofia had lost 70 grams one morning when she had actually gained 30. During the weekend there were some different doctors who have no experience with premature babies and their behavior and comments frightened us. After thinking that the move to Jorvi was a step closer to coming home, we saw our girls' health drastically declining. Olivia was back on a ventilated CPAP (a machine that pumps air through a mask), which she hadn't needed for weeks and weeks. And Sofia was back on a normal CPAP even though she had mostly been on the nasal canula with only 21% oxygen (same as room level). Carbon dioxide levels were above ten when they had previously been around 7 (normal is 6). The girls' lung medicine was doubled, antibiotics were started, the girls looked pale and sick, they were both having more and more apnea spells (no breathing and extremely low pulse), some nurse telling me that the girls would be here for months (when we thought only weeks), and the doctor said the next step would be for Olivia to go back on the ventilator. Olivia was vomiting, having green stuff in her stomach, and was sleeping all the time (I haven't seen her awake in 5 days). The doctor also told me, 'your girls' lungs will never be good.' Tero and I were worried sick. Every day that we went in to see the girls, some new problem seemed to have appeared. I was crying almost constantly and every day when I called Tero to tell what had happened, he dropped everything at work and came to support me. We couldn't sleep, we couldn't breathe....we felt scared sick. Scared that our babies were in danger. Scared that someone was going to 'ruin' our babies.

We have had several long discussions with the doctor in charge. She's actually a really nice lady and she listened to our concerns with an open mind. She apologized for everything that has happened. She agreed with everything we said and she admitted that this hospital does not have so much experience with these small babies who have BPD (the chronic lung disease). Maybe ten babies in a year. Didn't exactly make us feel better. Tero called the head of the NICU in Lastenklinikka (where we were before) and he is actually looking over what Jorvi is doing with these small babies. He is in contact with them often, supports them with their decisions, and even comes for visits. That is reassuring. And the last few days there have been only older and experienced nurses taking care of our babies. They are much calmer and they aren't shaking the babies anymore. So they are listening to us. The girls seemed to be feeling better today too and the carbon dioxide levels were down. Things seem to be going in the right direction again....and without the help of any ventilators. :)

I think the worst thing about this week was just seeing all of the progress of the last few weeks wiped away. Thinking that the girls are coming home soon and then seeing them in a worse condition than they were even 6 weeks ago...it felt like all of that progress was just wiped away. And we are tired. So tired. The doctor even told Tero today that if the mom is always on the verge of tears, it means she maybe needs to take a step back to recharge her batteries. I have still had complications from the pregnancy and was in the hospital myself again earlier this week, so it has just been too much. Thank goodness those problems seem to be resolving now too.

And good news...because there is good news too. :) Sofia has been practicing drinking from a bottle and also breastfeeding. She has been able to drink 10 ml from a bottle and got 4ml today from breastfeeding, so she is a strong little baby! The girls both weigh more than 4 pounds now, so they are more than triple their birth weight. Amazing. Hoping that this next week is a bit more peaceful than the last.

My chubby little Sofia