Your size

I think it's hard for people to visualize how big/small you are. When I take pictures you fill the lens so it's hard to get an idea of your actual size. The steroids also give you amazingly large cheeks and chins so it makes you seem bigger than you are too. Here is a picture of daddy holding you which helps us see your size better. There's no way around your cuteness and sweetness...it's there no matter what picture I take! 

Here is your growth chart. You were in the 75th percentile when you were born and are in the 25th percentile now. 

Today you broke the 8 pound mark! You're 8 pounds 1 ounce. 

The nurse said you were awake a lot more this morning which tells me you're feeling somewhat better. Dad and I both got to hold you today. I love holding you, more than you'll ever know. 

I hope you sleep well tonight, sweet boy. 

Love you to the moon and back. 

Xoxo

Mom

Care Conference

We are in the process of setting up a care conference to consult a long term plan. We will meet with a GI specialist, pulmonologist and neonatologist and discuss what they feel is best for you and why. Your oxygen got down to 52 last night but then the tube got pinched when you moved your head and you went to 70. It's really hard to oxygenate but you're fighting. Youve been sleeping very well which is such a good thing.

While I was at the hospital I pumped next to your crib. I had the nursing cover on so I couldn't see the bottles. When I was almost done I checked the bottles and saw this:

I noticed my milk supply decreasing so I've been pumping for longer each time and I guess I pumped too long too many times. Yikes.

After I talked to the lactation specialist I got to hold you. You were 78 percent oxygen before I held you and then you went to 69. It was so relaxing just holding you. We both loved it. 

While I was holding you I noticed you pull away and it almost felt like you were gagging. You were definitely uncomfortable. I think you have a lot of reflux, sweetheart. Hopefully we can help you out with that. There is a surgery called a gastrosemy where they put a tube in and it comes out of your stomach. You'd be fed through a hole out of your body. They also do a procedure where they close off the top of your stomach so that nothing can be refluxed and aspirated. So many things to think about. 

Daddy got to see you after work and hold you. 

 

Sure do love you. 

Xoxomom

Plugging along

You've been able to come down on your oxygen a bit. Sunday you were 100, they increased your steroid. Monday you were 80's and they started an antibiotic in your breathing tube. Tuesday you were 70's. Wednesday your IV antibiotic started and you were in 60's and 70's. Today you're the same as yesterday. The doctors are talking a lot about a tracheostomy. You may need months and even a year or two to grow enough lung tissue to oxygenate your body the way you need to. The great thing we have going for us is that you'll continue to grow lung tissue until you're 12. Babies are only born with 10 percent of their lung capacity. You're almost 3 months old and you're not able to really be a baby and develop like you should. A trach would allow us to interact with you in a completely different way. It will also help with oxygenation among other things. We've got a lot to think and pray about over the next few weeks. The surgery involved sounds miserable but after the week of recovery we hear that babies are really able to thrive. 

Just know that we will make the decision that we feel is the best for you after a LOT of considerations. 

Sunday night when you were at 100 percent we watched you until our eyes no longer stayed open. 

You mean so much to us Caleb, Luke. 

Love you like crazy. 

Xoxo

Mom

Gunk

You've been going up on oxygen even on the vent and went to 100 the night you were blessed. The nurses and respiratory therapists have been getting a lot of gunk out of your lungs. 

This is how much they got in 4 days. 

Over the weekend Aunt Amanda had asked if you might have an infection and when I asked the doctor he said your blood tests were all normal and your temperature was fine. But after 4 days of the gunk and the 100 percent oxygen Amanda was thinking a lot about things. She had an "aha moment" when she remembered that steroids can suppress the immune response in your blood. She suggested they do a culture of the secretions. I talked to the doc and he agreed to do a culture. (I am so grateful my sister is a NICU nurse!!!) When I talked to the pulmonologist he had already ordered the test and thought there may be an underlying issue...the other doc just hadn't seen the order yet. So after growing for two days, the culture showed you have bacteria in your lungs that came from your stomach. You have an infection from aspirating milk or stomach acid into your lungs which gave you aspiration pneumonia. We need to find out if it's a one time aspiration or if you are repeatedly aspirating silently into your lungs. Normally they do a swallow test but you can't because you have the ET tube. So I'm going to talk to the pulmonologist tomorrow to talk through things. In the meantime you're on an IV antibiotic and an acid blocker to help with the reflux. I'm grateful there is something we can do. Grateful there is an answer as to why you have been getting sicker, although we don't know how this plays into things. We aren't sure what long term is yet. 

Little buddy, your mamma has been given a tremendous amount of added strength this week. I am so grateful for the prayers offered on behalf of our family and for so many people that love and serve us. I feel such a renewed sense of strength that can only come from the Lord. I know you don't feel good and I am sure grateful you sleep a lot. That is such a relief. 

You're up to 7 pounds 14 ounces buddy! Atta boy! I can't get over your cute chubbiness. I got to hold you today and shower you with kisses. Loved every second. 

Sure do love you. 

Xoxo 

Mom

P.S. Guess what?? A friend brought me 3 extra sets of pump parts so I have 5 now.  I'll only have to wash once a day instead of 3 times!!! This is soooo awesome. I'm stoked, and grateful. Yessssss

Your Special Day

The day the girls got to meet you was so precious and sweet. I realize now that with the camera so close to you and the girls far back you look like a giant baby out of, 

"Honey, I blew up the kid." (Little 90's flashback) 

But you're still stinking cute. I adore the rolls you have on your chest here. You're on your left side because you right lung was collapsing a little. It's pretty much the cutest.

You have 5 mothers who love you to the moon and back.

And one amazing daddy that loves you like crazy.

Audrey was beaming.

Julia grinned for a solid 10 minutes.

Hallie quietly took everything in and couldn't take her eyes off you.

Claire was captivated and didn't leave your side.

After they each got to meet you, we got you dressed in your handsome church clothes.

Then daddy and the bishop blessed you. It was extremely special to be together as family and witness your baby blessing. It is evident that the love we have (and so many others) is immeasurable. Your Heavenly Father and our Savior love you too, Caleb. We are so blessed to have you in our family. 

I am still in awe that the girls were able to be there. That with flu season in full swing they were allowed to meet you. What a truly special day.

xoxo

Mom

Dreaming

The girls were beyond excited to meet you. Audrey told me just before we left to the hospital, "I feel like I'm dreaming!" Hallie told me she couldn't believe she got to meet you. They couldn't wait to get to the hospital. Unfortunately the drive to the hospital took extra long since there was an ice storm. We got there safely and we "scrubbed in." Julia said, "I'm nervous I'm going to wake up my baby brother." I assured her it would be okay if she did. 

Your sisters asked for a baby brother over and over starting this time a year ago. A few months before I was pregnant Claire said, "Mom, I need a baby brother and dad needs a son." At church one day Audrey said, "mom. I want you to get pregnant and have a boy." Hallie begged sooooo many times for a brother when I was already pregnant with you but no one knew. The day we found out you'd be joining our family, that they would have a baby brother, they jumped up and down and squealed again and again. After months of begging for a brother, months of uncertainty while I was on bedrest, and after the first 84 days of your life your sisters got to meet you. 

They oohed and aahed over and over. They loved your toes and fingers. Loved your cheeks and hair. They adore you and were finally able to see you face to face. Claire told me that you're even cuter in person. Hallie couldn't believe how little you actually were. Audrey was memorized and Julia couldn't stop smiling. It was a beautiful moment. One of my most treasured memories. 

I have lots of pictures on the computer that I'll post tomorrow. But until then I wanted to tell you how much the girls love you and how thrilled they were to finally meet you. 

You are so loved, sweet boy. 

Xoxo

Mom

P.S. After we got home last night we called to check on you and your oxygen was at 100 percent on the ventilator. Last night was extremely difficult. We didn't sleep much. Thankfully you were able to come down a little on your oxygen. The doctors are running some tests to see if you have an infection since you have lots of gunk in your lungs and they are so hazy right now. They gave you a few new medicines that will hopefully help as well. We are so grateful the girls got to meet you. Sure do love you, Caleb. More than we can say. 

Exciting

This week has been hard. Extremely hard. I would say one of the hardest weeks since September last year when everything started. I was thinking about you today (as always) and it dawned on me that I haven't been able to hold you. The last time I held you was Sunday when you went up to 98 percent oxygen and it was rough. That means I haven't had my therapy holding sessions and I can tell. Although things are still uncertain, when I hold you it gives me strength and comfort. It energizes me in a way I can't describe. The love I feel from you is something I can draw from. It is beautiful. I am so grateful I got to hold you today. 

You're up to 7.7 pounds and they upped your calorie supplement to 27. The doctors are giving you lots of extra calories to make sure you grow. You are definitely not dissapointing. Your daddy is a wonderful man. There wasn't time for both of us to hold you today so he insisted that I hold you. 

You are pretty worn out and your vent settings are still high. You deserve a very long break and I hope you continue to sleep well. 

These pics are from my visit with you yesterday. 

You're just so sweet I can hardly stand it. I love seeing your hair again and the little fluffy spikes you were sporting yesterday. I love the dimple in your knee. I love seeing your eyes and nose again. And your jowels, I love them. 

I have the best news....you get to meet your sisters for the first time tomorrow!!!! The head nurse agreed that they can meet you this one time since they haven't seen you yet and we want to bless you. It's something they have been wanting so much and I'm just so excited. We get to be together, all of us, for the first time on your blessing day. We can't wait. 

Get some rest my sweet boy. Tomorrow is going to be exciting! 

Xoxo

Mom