We are working on feedings slowly but surely. She has a lot of reflux issues. We are trying our best to keep her food in her belly so she can grow (including her lungs).She is taking a bottle every 3 hours like the doctors asked. We are uping her calories everyday until Wednesday by fortifing my breastmilk with an additive. Then on wednesday we will take her off the continuous feeds and start to condense them along with the bottle every 3 hours. Then hopefully sometime next we it will all be done with the bottle. That is the "best case" senerio. I am guessing we will need some "rest" days but I am starting to see a light at the end of the tunnel.

 Here "PN" is down (brown bag). That essentially is her IV food. Big step! Surprised by this one! They forgot to mention it at rounds this morning! That is 3 wires down!

Update: She is still doing great. Looks like tomorrow we will be moved to a step down room (out of the ICU). We are waiting to see how her tummy does today to see if we will start feeds through a feeding tube first. The good news is she has not lost her rooting/suckling reflex. She really likes her pacifier. After I pump I put some on it and give it to her and she loves it. It us a great sign that when her belly is ready she will be ready to nurse! Most CDH babies lose that urge because the ventilator is in for much longer. Another win! Right now she loves to Cuddle and has been sleeping well. The sad part is she is going through withdrawal from the phentinal  (her pain medication). It seems to be getting much better though 😊

Big day for the Sheehan family today. Patrick and Matthew got to meet Lillian. They were so cute and couldn't stop saying cute things about her. Then I took the boys to the Boston Children's Museum with my mother. The boys loved it.

Mike stayed with Lilly and while I was gone she got the ventilator out. I am currently holding her and loving every moment. What a magical day.

Quick update on Miss Lillian from yesterday. She is doing amazing! She had two vent weens the night before and two today. She is almost breathing completely on her own It looks like we will be off the vent sometime during this week. Fingers crossed. Once that comes out we can hold her (not sure if I will ever put her down)! You can tell she really wants to be held. We are however able to comfort her while she is laying in her crib. The more mike and I are able to do that, the less medicine she has to be on. I can't wait to hear her cry. She can't with the vent in but you can see it. Thank you everyone for all of the support!

I got to hold her last night for about an hour. It was an amazing moment!

Happy Valentine's Day! Lillian has just been a trooper! Another vent ween today. Slowly but surely we are working towards getting that ventilator out. Hopefully just another week but you never know with CDH babies. They decide the pace. Her amazing doctors are taking it very slow with her so we don't have any major set backs. They took her feeding tube out last night because the placement was off. They plan on putting in another one tomorrow and start feeds again.

Dad's favorite valentine present!

I don't want to sleep!

Another good day! We are still taking little steps but at least we move foward every day! Today she was awake a lot which means more work for Mom and Dad! We enjoy it though. We can't way until we can comfort her by picking her up. We can until the ventilator is out.

Today is Lillians due date! We are very happy because her oxygen level has been turned down to 30%. Room air is 21% so we are getting closer everyday to getting her ventilator taken out. Once that happens we will get to hold her and be more involved with her care. She will also be so much happier. You can tell that she wants it out. Just keep breathing so well Lilly!

Today we went with a bow!

Another great night last night!

We decorated her room too! We plan on sleeping at home tonight to hang out with the boys. We couldn't be more happy with the way things are going. We were able to get a parent room in childrens. Everything is working out so far. Children's thinks of everything! They even cut her bandages from her surgury into hearts.

She is out! We just met with the surgeon and everything went well. In about 3-5 days we can start with feeds from a feeding tube through her nose that goes right into the intestines so we don't have to deal with reflux while she has the vent in. They are going to take a conservative method of stepping down anything so we don't take any large steps backwards. It will make our icu stay a little longer but better safe than sorry! I just can't believe that lungs that are only at 17% can do so well. It looks like we are out of the woods of needing ecmo. She needed a "c" patch. Meaning more than 50% of her diaphragm is gone. The surgeon says don't research that. That she is acting like a "b". They were able to sew around her esophagus and use her own diaphragm there. That should help cut down reflux a lot. The rest is gortex. She is amazing!

So the surgury will be at 10am tomorrow. She has had an amazing day. Mom and Dad can not stopped looking at her beautiful face!

Lillian Cecilia Sheehan is here. She was born at 5:06 pm on 2/8/16.  19 inches 7lb 2 oz. She is doing very well. We are still waiting for the surgury date but it might be today!

Monday is induction day!

This is where I will be providing daily updates and pictures of Lillian once she is born!