Day 12

So he we are almost 2 weeks in, and we are getting restless. All we are waiting for at this point is for Eli to decide he wants to eat by mouth. It is so fruatrating. Last Saturday he took 4 full bottles. We were so excited because it was his first day of trying, so we got our hopes up that he would be flying out the door.

Unfortunately, Eli was still losing weight, so they started fortifying my breast milk on Sunday. This means simply that they are adding calories to my milk to help him gain weight. In doing this, he began to stay full longer. In the nicu, babies are fed every 3 hours. In orser to come home, they have to take all 8 daily bottles for at least 2 days to come home.

After Eli's one successful day, he went until Wedensday night taking nothing by mouth. The increased calories made it so he was no longer hungry at feeding time. Some feeds he would sleep, others he wouls be wide awake and happy...nevwr was he hungry! You can't really blame the poor guy for not wanting to eat!

He finally hit his birth weight again, and last night they started reducing calories again. He finally starting taking a bottle again. He has not yet finished one, but I am hopeful that we are getting closer. Occupational therapy has been working with him too, so they are working on finding something that works for him.

We were told early in the week that a Christmas homecoming may be pushing it, but that will continue to be our goal.

On the home front, LJ and Kaycie have both been sick. Fevers over 104, and just blah. Today everyone seems to be over the worst. We are struggling though. Poor LJ is over this. His routine is off. His mommy and daddy are not there att he same time, and he knows Eli is here but doesn't quite understand why he hasn't seen him yet. Thank you for all of the offers to watch the kids for a few hours but besides some visits with my parents, we are keeping them close right now. LJ is a sensitive soul anyway, and this is just wearing on him. Kaycie doesn't really know what is going on besides things are different right now, so she has also been extra clingy. All of this makes mama on the verge of tears all day every day. No matyer where I am I feel like I need to be somewhere else.

Thank you for all of the prayers. Please continue to pray that we can all be together again soon and that we come out of this stronger than before.

And then there were 5!

So here we are again! I am sitting here in the Northside NICU while Eli quietly sleeps. His monitors are for the most part silent at this point. He was moved to the step down unit Thursday night, which means he is stable and at this point pretty much what they call a feeder/grower. He has a few things to accomplish before coming home. The biggest thing standing in our way is taking 8 feeding by mouth.

I will backtrack a bit...last weekend I woke up at about 3 am to my water breaking. Once again, I was just getting confident that we may get to 37 weeks. I was not having contractions but since my water was broken my doc wanted me in right away. Baby boy decided to play hard ball...after breaking my water, he floated back up into my ribs. I spent all day making little progress, but long story short, after major pitocin, an epidural that sporadically worked, and 26 hours, Elijah Christian made it into my arms...briefly. He was 5 lb 13 oz and 19.25 inches. They took him to the nicu since he was 35+1 (to the day the same gestation as Kaycie). They immediately admitted him with respiratory failure and respiratory distress syndrome. Initially he was getting more respiratory support than LJ, who was born 6 weeks earlier. His lungs were just not ready, and LJ had the steroids to speed up his lung development, whereas Eli did not. It really hit when the nurse told me that if he needed an ounce more of support, they would have had to put him on a ventilator.

Eli was born Sunday and I was released Tuesday. LJ and Kaycie had a blast with grandma and grandpa. I think it has been harder on Matt and I than the kids. Matt has taken the rest of the year off. He has been playing Mr. Mom while I am here...today we are switching out midday. With LJ we had no one else to worry about while he was in the nicu. This time, my heart breaks every morning when I leave LJ and Kaycie and every afternoon when I leave Eli. That said, Matt is taking over this afternoon and I have a Candy Land date tonight with LJ.

Luckily, Eli's lungs have matured pretty quickly. He was taken off oxygen after 4 days. Now we are working on feeding. He has been trying to nurse for 2 days but still figuring it out. About an hour ago, he took his first complete bottle though, so we are making progress!

It is hard to say how long he will be here. Initially we were told 2 weeks was a good guestimate. It has been 6 days, so we will see. At some point, the eating will just click and we will get on out of here.

A quick note about boys...white boys specifically. Kaycie was born at 35+1 with no real "preemie" related issues. Eli, born at the exact same gestation, really struggled at first. This is a classic case of wimpy white boy syndrome. I think I offended some when I used the phrase earlier in the week, but it is a concept accepted across the board by nicu doctors and nurses. They remind us often that white boys struggle more than any other race/gender babies. Who knows why, but when we were here with LJ, it became pretty apparent pretty fast that this is true. That said, obviously it isn't a long term issue :)

A few things we have learned about Eli so far...when they found out about Kaycie's hearing loss, they wanted to go ahead and do a full ABR on him. This is the test the Kaycie had to be sedated for and we only got scheduled after 2 months of appointments. HE PASSED WITH FLYING COLORS! Since we have not done any of the genetic testing for Kaycie, we were unsure how that would go. We also learned to day that his thyroid is underactive. They are retesting before treating, but given that Matt and I have no thyroid anymore, we have always known at least one of the kids will likely have issues. Last week Kaycie's neurologist also referred her to have hers tested because her soft spot has not closed. Who would have known that was a sign of thyroid disease in babies. She will also get tested next week. Heck, at this point, we may just get LJ tested too!

So here we are. I don't want to get my hopes up, so I just keep tellong myself that I will be happy if our whole family can be home together by Christmas. I think that will be the final piece to making our family feel complete. In the meantime, we will make it through this chaos together!

 I will add more pictures later. I am on my phone since I haven't had a chance to sit down with the computer at home ans upload pics.