Who needs to see??

At the moment, not Caroline! She was diagnosed a couple of months ago with Delayed Eye Maturation. She can tell the difference between light and dark but can't see any objects. They're hoping that she's able to see by her first birthday but we'll have to wait and see. I'm amazed by how well she's been able to adapt. She hears something interesting and turns her little ear towards it. She can smell me the instant I walk into the room which makes it hard to sneak in and check on her at night. Whether or not she's able to see any more than a few months ago is up for debate. She seems to be looking at black and white things more and has even taken a swat or two at them. She still doesn't track anything though so I'm not sure if she's actually see more or it's just a coincidence. She also looks in the direction of what she's listening to, or at least mot of the time she does. If I'm talking to her her eyes will be looking at me but she clearly isn't looking at me which I think has been the hardest. It's as if the lights are on but no body's home. I want nothing more than to pick her up one day and having her look right at me and give me a smile. It will happen one day (I hope).

Life after the NICU

It's something we're still trying to get used to. When we first came home we had an appointment of some sort 4 out of 7 days. Ped, visiting nurse, day off visiting nurse, Ped and then the weekend. It was like that for a couple of weeks until we got Caroline off of the feeding tube and established that she was able to gain weight without it. PT and OT started in November. They come on the opposite weeks so we see someone every week. She's come a long way since leaving. She hardly moved her arms and legs when she first came home but now she's moving them a lot! Of course it's never when her teachers are here but that would make things too easy! We have yet to master that pesky head control though. She's able to hold her head up and move it so she has the strength she just chooses not to. She's made it very clear from the beginning that she's perfectly capable of doing a lot but she will only do them when she wants. She is definitely a lot more stubborn than her sisters. She hates to be touched and handled but once she gets comfy in your arms she just melts right in and will happily stay there until you put her down. She is on no schedule what so every. The only consistent part of her day is bed time. Other than that she eats when she wants and some times it's 4oz others it's only 1oz. We've dabbled in solids but she could take or leave those so I'm not pushing it too much. At this point I'm just pleased that she's able to eat on her own and gain...something that we thought would never happen!

NICU life

Ah the NICU, it seems so long ago now. I know at the time it felt like I was never going to leave and here we are 6 months later and I (thankfully) hardly remember those days. I was still in a fog then so most of the days just kind of meshed into one so I'll give you what I remember.

Day 2: still intubated, lungs looked slightly immature so she was given meds to help although they *shouldn't* have been a problem. CT scan was done and nothing stuck out but they would be doing an MRI to get a better look though. She wasn't having as many apnea spells but she was still having them so she would stay on the vent.

Day 3: I had to go home without my baby...something no mama should have to do! The MRI was schedule for the afternoon. This was also the day I sent out the info to Dan that he had a new baby girl! I remember getting a call from the hospital..which I knew they don't call unless something happens so of course my heart sank, what now?! It was the doctor calling to tell me that Caroline, who was always quiet, too quiet, went down for her MRI and needed to be sedated! She would not stop crying and stay still. He kept holding off giving her anything but after 30mins of her crying he gave in a gave her something. They had to keep her sedated for the rest of the day because she kept trying to pull the tube out (that's my girl!)

Day 4: It was a monday, i walked Jilian to school just as I normally would...trying to keep things as normal for her as possible. Dan STILL didn't know about Caroline. That day they decided to take the tube out and put her on c-pap...she hadn't had an apnea spell in 24hrs. She went on CPAP because he didn't wanted to just "send her up the river without a paddle". It was so nice to see that thing out of there and see more of her face! and what a beautiful face it was. She looked so much like her daddy then. Oh this was also the first day I got to hold her!!!

Day 5: They didn't want to take the CPAP off just yet but she had other plans and pulled it off while they were doing their morning rounds. They came back to her and it was off and her numbers looked great so they left it off. I'm pretty sure this was the day I had gotten a message from Dan...he finally knew she was here! He had no clue what was going on though.

Over the next couple of weeks (23 days total in the NICU) we had so many things done I still can't keep everything straight. She had a total of 2 MRIs, 2 EEGs, a CT scan, 2 hearing tests, LOTS of blood tests, spent some time under the bili lights and started to learn how to eat. Dan came home when she was 12 days old, poor guy had no idea what he was walking in to. When they were sure that all of the sedation was out of her system they noticed that her overall tone was very low. When a baby would normally keep their arms and legs close to them she kept hers very loose. She was VERY floppy. When we started working with a bottle she would get tired so very quickly. After a couple of weeks we were taught how to use her feeding tube and sent home with all sorts of equipment but we were getting to go home! They don't normally discharge babies on the weekends from the NICU but they new we were ready for her! Everyone came in and said their good-byes and we hugged and kissed and cried. They had become our family over those weeks and we would hopefully never be seeing them again! We had no really answers as to why she had stopped breathing or why her tone was so low. Every test they had run had come back negative or normal and while I am so grateful for that, it's a very frustrating spot to be in. On one hand I want my girl to be perfect...I want nothing more than all of this to amount to her just needing some extra time to do things. On the other hand I would love to say "Ok, this is what she has" and move on.

This was Caroline about a week after coming home!!!

Caroline Quinn Donnelly

Caroline came 4-5 weeks (depending on what date you use) early. She came out kicking and screaming and no one in the room would have guessed what happened next. I remember most of the nights events..some are still a blur but coming back as time goes on. I remember hearing her cry when she was first born. I remember her being placed on my stomach and almost kicking the doctor in the face. I remember how proud my mom was to get the opportunity to cut the cord in Dan's absence. I remember them taking her away to get cleaned up and all checked out. I will never forget watching the nurse do Caroline's inital evaluation and just looking over and thinking to myself "That doesn't look right". She'd lift her arm up and it was just plop right down, no movement what so ever. She'd lift the other arm, same thing. I remember her rubbing her chest over and over again and not hearing her crying and when she flipped her over to rub her back I remember the look, or absence of a look in Caroline's eyes. They tried to do everything as quietly as possible as to not alarm me but I knew exactly what as going on. The nurse practioner came in and rubbed as hard as she could, still nothing. They pulled out the ambu bag...maybe she just needed a little jumpstart? Still nothing. She asked for an oxygen monitor, the first didn't work, the second didn't work, by then she said forget it, she clearly wasn't breathing! They intubated her and whisked her off to the NICU. Everyone in the room was in tears..."that SHOULDN'T have happened" was all I kept hearing. I remember wanting to run after her but couldn't, darn epidural! I was up and walking and wanting to see my baby much sooner than they expected but I had to wait. The doctor came in an hour or so later to update me. "We don't know why she stopped breathing but she keeps having apnea spells so she'll have to stay on the vent for now. Just a little longer and you should be able to see her". I waited and waited and waited what seemed like an eternity. My nurse came in and said I was ok to go over, finally! So over I went to see my girl, all 5lbs 8oz over her. I remember turning the corner and hearing the all too familar vent dings from working in the ER. She just seemed to be covered with tubes and wires. I don't really remember what the nurses said, I was still trying to take everything in. I remember touching her foot and she stopped breathing. Great! Was this what things were going to be like?! Every time I touched her she stopped breathing. So there I was unable to hold or even touch my little girl and no one seemed to know why.

This was Caroline at 1 day old. I didn't get any pictures of her that night as I mostly steared clear of my phone. Aside from a select few I just couldn't even put into words what had happened.

Welcome!

I've been thinking about starting a blog for quite some time now. So here it is! Past, present and future...everything that's going on with our littlest princess.