I am so sorry for the lack of updates…but life in the NICU has been a completely exhausting roller coaster. We spend a lot of our day there and trying to divide ourselves between the 2 girls has been really rough. Thank god my mom is here to help with Olivia and give me rides back and forth to the NICU bc I am unable to drive for 2 weeks following my c-section.
Marlowe is still struggling to eat and digest her food. She is currently taking 3 bottles and 5 tube feeds…but typically the 3 bottle feeds end up as tube feeds as well bc she is just to exhausted to finish her bottles. They want her drinking 38cc right now and she is able to take between 15-22cc on her own, then the rest is fed through her tube. They have decided to treat her for jaundice since her levels are not really going down and they think it might help some with the lethargic issues during feeding times.
I am officially a pumping maniac…the nurses in the NICU joke that I could supply the entire NICU with breastmilk. I pumped at work with Olivia for 14 months, so it feels like the good ol’ days, haha. I have milk coming out my ears and my baby girl better start eating up or it will all go to waste. For the record, I am sick of all this pumping nonsense and looking so forward to breastfeeding my baby. I know it won’t be easy, since currently I am not allowed to even try. They say she is just too lethargic and would likely choke on it and waste way too much of her little bit of energy trying. It breaks my heart, but I will continue to pump til our time comes. And if our time never comes, god forbid, I will pump til she is at least 2. I am a big time breastfeeding mommy and this has been one of the hardest things on me bc I feel like we NEED that bonding time. But I just need to remember that our time will come.
On Saturday we received some scary news. Her newborn screening tested positive for Congential Hypothyroidism, which means she will need to take a thyroid hormone replacement her entire life. After speaking with her endocrinologist, they informed us that they believed that Marlowe was born without a thyroid completely, rather than just having a deficiency. We were told she would be transported via ambulance to Rady Children’s Hospital on Monday for scans/testing to verify if she has a thyroid and if so, where it was located. We received the results back from the scans today and they confirmed that Marlowe was born without a thyroid and requires complete lifetime thyroid hormone replacement. Luckily the news was not shocking since they had prepared us for those results from the time we were notified of the positive screening.
The neonatologist and the endocrinologist believe that once they can find a good level of hormone replacement for her, we will likely see a drastic increase in her alertness and ability to eat on her own. So while being scary news, it seems like once we get it all figured out, she will feel better and come home sooner. She is also suffering from bradycardia, which is when the heartrate drops below 60bpm. She was suffering from them around 12 times a day and since we got her on her Levoxyl (thyroid hormone replacement), it has dropped to about 3 a day. So they also believe her lack of a thyroid was causing the bradycardia. However, they do know she is suffering from severe reflux, which is also contributing to the bradycardia…when she starts refluxing, her heartrate drops until she spits up or vomits.
All in all, she is doing well but has had a few bumps in the road. I have a cough today and didn’t want to go into the NICU til it passes…but I did get a call from her doctor and she told me that Marlowe was moved from her incubator to an open crib! That is awesome news, as it indicates she is able to regulate her own body temperature now. One step closer to coming home! She just needs to work on her eating/digestion issues and then she should be on her way out of there. Unfortunately, there is no telling when that will happen and we just need to put on our patient panties and wait it out. And believe me, she is worth the wait.
Here are a few crappy iphone pictures to share with you guys…many of them were taken at night, so the quality is REALLY bad, but you get the idea at least!
Here is my very favorite picture of her so far…I can’t wait to get this little girl home and have a newborn session with her.
Here we are holding hands and I was giving her a little help with her paci because she is not quite so good at it, LOL. Either was Olivia!
Here I am feeding her a bottle…you can tell she isn’t exactly awake and excited about it.
Here we are kangarooing (skin on skin contact with mama)…best night of our NICU stay yet! I am not sure who needs it more, haha.
Here was the first night I showed up to the NICU to find her in her own clothes! I was so excited!!! Even though it looks like a boy outfit, I promise it is considered “unisex” and that some of the elephants have flowers on them. 
And finally, here is a picture of her and her daddy…he is so in love with her! And if you know what Olivia looked like as a newborn, you would know that she looks just like her! It is crazy. And she looks so much like me as a baby, even more than Olivia did.
