Roller Coaster

We hear having babies in the NNICU compared to the term “roller coaster ride” a lot… and I’ve decided that theme parks got it right! You have to wait in line for an hour, and the ride is only a few minutes… then they make you wait in line again before riding again. I always hated that – both the waiting in line and that the ride was so short! Now, I’m starting to understand :) ha ha!

Actually, I wouldn’t change my “roller coaster ride” for the world :) But, it has certainly been crazy. I originally said I wouldn’t write about a lot of medical mumbo jumbo, but I think I’ve actually gone too far in the other direction… and, I’ve had a lot of questions about how the babies are really doing – asking for details. So, I’m going to try my best to write an update... keep in mind, I am by no means a nurse or doctor!

The biggest problem with writing about how the babies are doing is that it could be totally different by the time I’m finished posting. I’m guessing this is where the term “roller coaster ride” comes in :) The twists and turns are often and most of the time they catch you off guard. So, I’ll try to give you an idea of the last few weeks and where we are as of today…

A few terms that you’ll see on each one…
- Lungs – goes from the ventilator (breathes for you), to C-Pap, to nasal cannula, to breathing on your own.
- Heart – the PDA is a heart ductus. Usually it closes when infants take their first breath, but for many preemies it stays, or comes open. Steps to close it include 3 doses of meds that can be given twice – after that it’s a surgical procedure to close the ductus. When the babies are taking these meds, they have to stop feeds for 36 hours.
- Septic workup – includes drawing blood and a spinal tap – they’re done to rule out different infections and conditions.
- Feeds – they are getting breast milk, but it is given through a feeding tube – generally every 3 hours.
- PIC line – besides getting feeds, the PIC line delivers nutrition like electrolytes. The bad part is that it can be a major source of infection, so the goal is to get up on feeds in order to take the PIC line out.

Olivia – has improved every day this week, but continues to come up with new ways to get attention :)

Up close and personal... beautiful girl!

Below - just a cool shot :) Check out her hand, hanging on!

- Lungs - She went off the ventilator within a few days of being born – yea! Since then, she has gone back and forth between needing C-Pap and a nasal cannula… she tried breathing unaided for a short time, but it didn’t go so well. For the second time, she is back down to the nasal cannula, and has been doing really well!
- Brain – from the beginning she has been clear – no bleeds! Yea!
- Heart – on her original echo, she had an open ductus. It was followed by one round of three doses of meds, and the ductus closed!
- Stomach – from the beginning she was great! But, since she had to stop getting feeds while on the heart meds – she’s had trouble. She wasn’t able to digest even 1 milliliter every 6 hours. So, we tried lots of things – but then we went on continuous feeds and it seemed to work… but not great. She then had a second feeding tube, a TP tube, which lets the food bypass the stomach and go straight to the intestines, and this worked even better! Now she’s back to the normal feeding tube, still on the continuous feeds, and doing really well! (I think she gets the continuous feeds from her mom :) It’s kind of like grazing all day instead of a few big meals!)
- Eyes – she had some eye gunk that was cultured, and the results just came back that she has a staff infection (MRSA) in her eye… the great part is that the rest of her body does not have it! The doctors don’t sound too concerned – she has been on eye drops for a few days now, so that will be continued. The sad part is that she has to be in isolation for a while until it clears up. Her little incubator is off on it’s own, partitioned off, and we have to wear sterile hospital gear when we see her… it looks like the stuff DB had to wear when he came for the c-section.
- Other – she’s had a few septic work-ups, the most recent for a possible blood infection. All have come back negative!! Also, her PIC line is out!
- Prayer requests – that her eyes heal and she continues to tolerate her feeds.

Samuel – is doing okay, but certainly has the most to overcome…

He shows his sense of humor with that tongue sticking out!

Below - our precious little man sleeps :)

- Lungs – this is Samuel’s biggest struggle. He went off the ventilator fairly soon after birth, but had to go back on within days. He is still on it – he is now on the JET ventilator, it is similar in that it breathes for the baby, but it is different because it delivers the breaths in lots of little tiny puffs (for his little tiny lungs) instead of big ones. His lung xrays still don’t look good – they are very hazy - and the doctors are currently testing for pneumonia to try and find out what’s going on. This is not a fun mystery. He has also had to have three blood transfusions due to low red blood cell counts… which help with the oxygen level in his blood… each has gone well.
- Brain – we thought it was clear, but when reviewed again, he did have a grade 1 bleed (the worst being a grade 4). The doctors don’t seem too concerned, and all babies will be rescanned at 35 weeks. For the grade 1, they just let it heal itself. His was actually so small that the doctors said a few years ago, with different technology, they wouldn’t have even seen it.
- Heart – his ductus was originally closed, but has since opened. He has had two rounds of the meds (three doses in each round), and today’s echo showed it is still open… we will know on Monday if, or when, surgery is necessary.
- Stomach – he is tolerating his feeds well! Unfortunately he’s had to go off feeds each times he’s needed the heart meds, but he seems to go right back on them very smoothly! The doctors say his feeds are one of the best things he’s got going on right now! This is great because if he can get bigger, they think some of his other issues will start to go away!
- Eyes – he also had eye gunk, but the cultures came back negative! Yea!
- Other –he has also had a few septic workups, but all have some back negative! He does still have his PIC line in.
- Prayer requests – that his heart ductus closes and that his lungs get stronger.

George – has improved every day this week!!!

Read below - this is his "unicorn" shot...
Below is one of DB's favorite shots of our sweet boy :)

- Lungs – he went off the ventilator within a few days of being born – yea! Since then, he has gone back and forth between needing C-Pap and a nasal cannula… he tried breathing unaided for a short time, but it didn’t go so well. Yesterday, for the second time, he went back down to the nasal cannula, and has been doing really well!
- Brain – we thought it was clear, but when reviewed again, he did have a grade 1 bleed (the worst being a grade 4). The doctors don’t seem too concerned, and all babies will be rescanned at 35 weeks. For the grade 1, they just let it heal itself. His was actually so small that the doctors said a few years ago, with different technology, they wouldn’t have even seen it.
- Heart – his ductus has been, and continues to be, closed!
- Stomach – last weekend we were told that something was up, and it could either be NEC (an intestine thing which can be very bad!) or simply gas. Not fun! He had a septic workup and had to be off feeds for 72 hours… and because his PIC line was out, they had to give him an IV for nutrition – the IV was in his head! (This is where the "unicorn" photo came from... apparently, it’s actually a great place because there aren’t as many nerves, and it’s not as easy for him to knock out... but it doesn't look pretty!) But, once the test came back negative (yea!), he went back on feeds and took to them immediately. He’s been doing great!
- Other – he was transferred to the level 2 nursery, but with the fear of NEC he came back to the level 3 that they’ve all been in. His PIC line is out!
- Prayer requests – that his belly continues to look good and NEC does not develop

I know – long post – not sure many people will make it to this point! Ha ha! I hope this gives you an idea of what’s going on… I’ll try to be better about mentioning major events (like if or when Samuel needs surgery). Our roller coaster ride has had high highs and low lows… and every minute is totally worth it! These babies have completely stolen our hearts!!