Reilly
Personalized with Reilly's name on it!
So fancy!
We've found these teeny little hearts sewn in throughout the covers- adorable. See it right above Santa's hat?
Here she is- loving her new festive Christmas cover!
Chase
Hi Dad!
Look how good Chase's bedspace looks compared to his neighbours- most stylish in the NICU!
Little hearts sewn all over Chase's cover too. Can you spot it?
Chase inside his new dark and quiet incubator. He loves it!
Can you see him in there?
How cute is this- one of Chase's nurses cut his temperature monitor pad into a heart shape for him. So adorable.
This shot of Dad was taken Saturday night during a fun visit with the little ones. We were given this little book that he is holding at a parent meeting this week. A dad that had a son at Sick Kids put together a collection of poems, rhymes and stories to read to your babies while they are in the hospital, specific for premies. As we browsed through the book, we realized that many of the rhymes don't even make sense, but they use sounds and patterns that the babies can recognize and enjoy hearing. (Sounds that make your voice lower which are easier for the babies to hear). We had so much fun reading these hilarious little rhymes to the babies. Chase loved the rhymes (becuase he was sating 95-100) but Reilly wasn't impressed. We think she prefers peace and quiet. Brought a few smiles and laughs to our faces though :)
Baby Update.
Chase finished his course of Tylenol and will have a scan tomorrow to see if his duct has closed but we are not too hopeful. He is showing signs and symptoms that indicate his duct is still open which will mean that he needs the ligation, or the surgery at Sick Kids. We've been told it is a common procedure and has very good outcomes, but that the babies go through a lot and usually need a week or so to recover. We think the ligation will be a good thing for Chase. Right now, with the duct open, there is a little pathway into his lungs that allows the deoxygenized blood to mix with the good oxygenized blood. This means his lungs have to work harder to pump more oxygenated blood throughout his body. Once they close the duct, the bad blood, or deoxygenized blood will no longer have that pathway and wont be able to mix. He's been pretty stable this week, they've been able to weane some of the settings on his ventilator, but he "swings", meaning that one minute he is stable and comfortable and then all of a sudden he is not getting enough oxygen and the nurses have to increase his settings to help him out. These swings are common in premies, but happen so often with Chase that they cause concern. The ligation will hopefully decrease the swings and will allow him to focus on growing instead. There are not many babies in the unit that are ventilated, most are on some method of breathing support but do not require the amount of support that Chase and Reilly do. Chase has been growing and getting bigger, and most babies his age and size are no longer ventilated or intubated. We are hoping the ligation helps his lungs enough that he'll be able to get rid of his breathing tube and graduate to a less invasive breathing-support system (like the one Reilly tested out last week). Other than the respiratory issues, Chase is doing okay! He is currently 1210 grams, or 2lbs 6oz. He has some food intolerance issues this week but is working his way back up. He looks good and brings many smiles to our faces each day :)
Reilly is the toughest little thing. We cant even believe all the things she has gone through and yet she is still in there fighting every day. It feels like she has encountered everything they said a premie might encounter in a worst case scenario. This week we realized she had a skin infection, so they started antibiotics. They said once the antibiotics started, her oxygen requirements would decrease and we'd see an improvement. A couple days later she developed another infection, this time an infection in her lungs, also known as pneumonia. So, she started another type of antibiotic. They did a blood test today which showed that her skin infection is still growing, so so far the first antibiotic hasn't been effective. Like Chase, Reilly swings too - all the time. Her monitors are always flashing and her bells are always ringing. She hasnt had a good chance to just sleep and grow, things that premies need to do!
She needs these antibiotics which means she needs to have an IV. She has terrible veins because she is so small and has been poked so many times (which is how she got the skin infection in the first place). You'll see in the picture above that she has an IV in her head right now- which they put in last night as a "last resort". They say she has no good veins left because of everything shes been through. When we visited tonight they told us the IV in her head is getting puffy and swollen and they'll have to find a new IV site tonight. Its so frustrating. They poke her so much that she gets an infection and then they have to keep poking her to treat the infection. Her IVs are only lasting a maximum of 24 hours because her veins are so frail.
At the same time, because she has pneumonia they've been giving her medications to help flush some of the extra fluid out of her body. Well, this medication not only flushed her extra fluid, but also flushed out and depleated the sodium in her body. So, now they ordered sodium supplements to help raise her sodium levels. It is a cycle that just never ends.
Feels like one step forward, three or four steps back. Our hearts break for Reilly. Shes been through so much and has been so tough. She just cant catch a break. We're hoping once these infections are under control then she will have a bit of a break to just grow and get stronger. Right now, shes a little mini superwoman. Her brother better watch out :)
Thats all for now. Each moment in the unit brings new developments and changes. Some days it feels pointless to even update anyone becuase things change so fast. We know we arent the only ones going through tough days in the NICU and our hearts go out to the other families who are being faced with tough decisions and uphill challenges this weekend.
Thanks for your continued love and support. Keep our little ones in your prayers.
xo
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