Baby steps

This morning your blood gases showed good carbon dioxide numbers so they were able to go down from 22 to 20 on your rate (the rate per minute that the machine gives you breaths). We will take any step in the right dirextion. A baby step is still a step to celebrate. 

You had an echocardiogram which showed that there is still a small leak in your heart. They are pretty confident that it will close up since it's so small it's hard to even see and it's in the muscle. Since the muscle portion of the heart grows over time it closes as it grows. If the leak were in the membrane it's not as likely to close. Your pulmonary pressure (the blood pressure that is in your lungs) is a little high so it's a good thing we have you on one of your medications. We started it so your borderline high pulmonary pressure didn't increase any more. The medicine dilates the blood vessels in your lungs so the heart doesn't have to work too hard to deliver the blood to your lungs. The harder it has to work the higher the pressure. When some of the sacs in your lungs don't work the heart has to work harder to deliver the blood to the sacs that are working, causing the pressure to increase. 

After being re intubated and the stress yesterday you've been tired. It's good for you to sleep. You didn't have a setback as far as oxygen which is great. You're about the same in the 60's today. I just wish we knew why your oxygen won't stay in the 40's and 50's when you get there. We are hoping to turn a corner. 

While I visited you today I sang you lots of songs. I love to sing primary songs. I would sing to you when I was pregnant each night before bedtime. The few hours I was there you just snoozesd so I sang. I'm glad you rested so much. Sleeping and growing are what you need right now. I always rest my hand on your head while you sleep. Its comforting just to touch you even though I cant hold you. It's the strangest thing (and pretty tough) to see you every day and not be able to scoop you up and rock you. To not be able to feed you. To not see what your sweet cheeks look like and smother them with kisses. To not be able to hold you without restrictions. So we just make our new normal. I touch your head, hold your hand, sing you songs, talk to you, and hold you when I get the chance. 

Audrey asked me yesterday, "so what did you do today?" So I told her what I do everyday:

Pump then wash the pump parts 

Get girls ready for school 

Pump

Pay bills or straighten up the house 

Pump and wash 

Go to the hospital and spend time with the sweetest baby boy 

Pump

Pick up girls from school

Do errands and homework and spend time with the best girls. 

Pump and wash 

Have dinner and do bedtime routine 

Pump

Do a few things before bed like post etc

Go to bed 

Pump in the middle of the night if I wake up to the alarm. Many times I turn the alarm off and go back to sleep with absolutely no recollection. 

And then start again the next day. Gotta get you some good food so you can grow! 

I love you sweet boy. Sleep tight. 

Xoxo

Mom 

Quite the Scare

I got to the hospital this morning and you were wide eyed. The nurse had you dressed in one of your new onesies and I loved it! I held your hand, changed your diaper, and then they got you ready for me to hold. We got you all situated and settled in and I was ready to just hold you for an hour and snuggle you. Unfortunately that wasn't what happened. After just a couple minutes you lifted your head up (you were laying on my chest on your tummy) and pulled away from the tubing. You tend to do this a lot lately but this time the tape was loose and when I saw you pull away I could see the tape coming off. You acted like you were going to gag and your stats started dropping and dropping. So I gave you to the nurse and she called another nurse. The one nurse asked the other nurse to grab the bag that they use to inflate your lungs. When that happened and the nurse swore I knew it wasn't good. I stepped into the corner and cried while they called the doctor. I could see you heart rate dropping even more and the alarms were going crazy. I knew I needed to leave the room to call dad. I stepped out to see all the nurses running down the hall. Everything happened so quickly.

I wanted to get on my knees to pray but a nurse didn't want me to be alone so she stayed with me. About 2 minutes later the doctor came into the room where I was and told me not to worry. He had re intubated and your stats were coming back up. Somehow the tube had been pinched or blocked so you were unable to get the support you needed. They had to put a mask on you and pump oxygen through a rubber bag until they had you re intubated. It was quite the scare. I called dad to let him know you were stabilized and he arrived soon after. 

It happened so fast and it was surreal. You see things like that in the movies but you usually don't live it. All I can say is I am grateful for added strength, I'm grateful for doctors and nurses that worked quickly to save you, and I'm grateful you are still here. One minute you were wide eyed and chillin, which is when I took this picture. 

5 minutes later you were crashing because you couldn't get the air you needed. If only you knew how much I love you. How much we love you. But I think Heavenly Father lets you feel of our love. I really do. I pray that you can feel our love and that you are strengthened. 

I hope you can stay content while you are intubated. Some babies have to be sedated because they can't handle the tube. You've done amazing so far. Depending on your oxygen levels over the next few weeks we will know if you'll be given a trach or not. If you're the same as you are now when we get to your due date/1-2 weeks past then you will most likely need a trach. If you improve then we look at CPAP. You are such a sweet baby, Caleb. You've been through so much your first 7 weeks of life. You are so strong. It's so hard to see you so sick. It's so hard not to be able to help you. There are no words to compare my love for you to. No words to describe how much my heart loves you. No way to measure it. I would do anything for you. 

Hallie was crying for you today. She's worried about her baby brother. Audrey asked for a picture of you to take to school so she could put it on her desk. When I told Audrey that today was really hard and yesterday had been so good she said, "then maybe tomorrow will be good!!!" I hope so. I really do. 

Xoxo

Mom

A first

Well baby boy, I was able to kiss your cheek for the very first time today. The nurses were changing the tape around your ET tube and I mentioned how badly I wanted to kiss your cheeks. So before they put the new tape on they told me to come kiss you. At first I froze, nervous I had germs and might get you sick but the nurses quickly told me to just kiss you! So I did. And I totally teared up. Kissing your babies cheek is something that is so natural and normal but in over 50 days of your life today was the first time I was able to kiss yours. I loved it. 

During the re taping you were super upset and your heart rate dropped a ton. The monitors were beeping like crazy. My heart skipped some beats but you eventually calmed down thank goodness. 

The nurse got back your blood count this morning and they were low. The doctor ordered blood for you to help your hemoglobin levels. Hemoglobin carries the oxygen in your blood so getting more might help your ability to oxygenate a bit. While you are receiving blood they have to stop your feelings but after about 6 hours you'll get milk again slowly. It takes about a day and a half to get up to eating where you were. You had another does of LASIK the Sunday night. Even with a rough morning your oxygen was in the 50's which was so great!!

The nurses asked me if I wanted to hold you but after you getting the IV, being retaped, starting blood, and more I was super hesitant. But the nurses said to go ahead. So I held you. I was able to kiss your head. And just love on you. And as if it wasn't wonderful enough, your oxygen was 44 while I was holding you. It hasn't been in the 40's for several weeks. The nurses took some pictures so I could send them to dad. 

When he walked in the NICU during his lunch break he had a big smile. You stayed in the 50's for most of the day and were 60 when we called at bedtime. You're probably super tired. Sleep tight sweet boy.  Today was a great day. I'll see you tomorrow. 

Sure love you sweetheart. 

Xoxo

Mom

Oh my

Mom and dad know that when you gain a lot of weight in a day or two that you are retaining water. Yesterday was no exception. When they did your chest x ray this morning your lungs looked very wet, so the doctor ordered an oral diuretic that you've had before called LASIK. It pulls the excess water from your body and you get rid of it through your pee. After weighing you this evening you had lost 8 ounces! That's a lot of excess fluid buddy. You're now 5 and a half pounds. Your oxygen tonight is hovering at 68-70 percent and you're just as cute as ever. I brought the few new things we bought you last night and I loved putting you in my favorite onesie. I will post pictures as soon as I download them from the camera. 

When we got to the hospital you were wide awake. It was so fun to watch you look at the mobile and look around wide eyed. Then tonight just before the girls went to bed we watched you on the web cam and they oohed and aahed. They love to see you especially when you have your eyes open like you did tonight. The girls talked to you and wished you could hear them. Julia said, "I bet when he's a teenager he'll be mean to us." It was so funny. 

Hope you sleep well. Can't wait to see you again tomorrow. 

Xoxo

Mom 

Growing like crazy

Hey Mr. Caleb, way to go on gaining a few more ounces!! You were 5 pounds 11 ounces yesterday and are are up to 5 pounds 13 ounces today. Last night when dad and I were going to bed dad got up and said, "I'm going to the hospital to spend the night with Caleb." So at 10:30 last night he left to the hospital. He only got a few hours of sleep in a chair next to your crib but I know it was time well spent. 

When he came home this morning he said that your oxygen was up to 80 percent and I have to admit that I had a good cry. I prayed for you and for all of us to be strengthened. At 11:00 dad called and the nurse said that you were at 56 percent oxygen after a change in the way the ventilator gives you breaths. You were taking 2 short breaths before one big long breath from the ventilator so they decreased the amount of time between the big breaths so you didn't have to take small ones. I jumped for joy. I knew it's not a guarantee but was just so excited to see a change the other way. By afternoon you were at 65 percent, but that is lots better than 80. 

I think the last few ounces you've gained have gone straight to your chin and it's pretty impressive. Your checks are so great. I seriously can't wait until I can kiss them for the first time. 

A few times a week I take home your dirty clothes and blankets to wash. This surprise was waiting for me tonight. Atta boy, buddy. 

On the way home from the hospital we stopped at Carter's and bought you a few things. I can't wait to get you dressed tomorrow. A friend brought a darling valentine outfit for you tonight that will be so cute, I mean handsome. When I talk to you by your crib I always say. "Hi beautiful," and then correct myself and say. "I mean hi handsome." :) I should watch what I say better or I might offend your dad, or you! 

I love to touch your head when I come visit. I just rest my hand on your head and love that I can actually bring your oxygen saturation up by doing it. It's like you know it's me and that you are responding to being touched and loved. I can't even express how much I love you. How much your daddy loves you. And your sisters, oh they love you like crazy. Plus your aunts, uncles, cousins, grandparents and all our friends. You are one loved little boy.  

I'll see you tomorrow. 

Xoxo

Mom 

P.S. Just called the NICU and the nurse said you weigh 6 pounds!!!! 

Shift in Audience

I've decided to change my posts. From now on my posts will be to Caleb. I want to write specifically to him. Tell him how he's doing, what we are feeling, what progress he's making and just how much we love him. So these notes are to Caleb.

Caleb,

Hi sweet boy. This morning was a tough one for me with lots of tears and the desire to stay in bed all day long. It's so hard to have you fighting for your life? I feel helpless. I managed to stop crying and get out of bed because you were waiting for me to come. I also had a new outfit from one of your aunties to dress you in. Something you need to know about me is that I love to put clothes on babies. You look mighty handsome in the outfit. 

After I changed you I got to hold you. Only this time I put you on my chest and snuggled you like crazy. Your oxygen was around 65-70 all night and when I held you we actually got to turn the oxygen down a percent or two. I loved that you loved being held. In fact I held you for 2 hours and fell asleep with you for a couple minutes. Dad was so sweet to let me hold you for so long that he didn't get a turn. He even left to get the girls from school so I could be with you longer. 

I love the way you smell and that your hair was greasy. We haven't seen a response with the meds we are giving you so we are going to try a different steroid to see if your lungs will respond. We will probably start that next week. I wish we didn't have to give you so many meds. But we have to try them to see if they'll help. The new breathing tube still has a leak bigger than the doctor likes so they may add a cuff to it to eliminate some of the leaking. I told the doctor that even though you still need a lot of oxygen that you have made a lot of progress. You have done awesome in the big boy crib, you regulate your body temperature, you didn't go back to the high frequency ventilator, you have gained over two pounds, and you're eating a good amount. Not to mention the amount of stimulation you can tolerate now. I'm so proud of you. Your little body and lungs are working so hard. You sleep a lot and I am grateful that they haven't had to sedate you because you really tolerate the breathing tube rather well. 

There are so many people praying for you Caleb. So many people who love you. When I left you were on 68 percent oxygen and when we called the NICU tonight you were still at 68. Julia has a fever tonight so mom or dad may just come to be with you tomorrow instead of us both coming. Your sisters want to meet you so bad. Hopefully soon. 

Love you sweet boy. So much. 

Xoxo

Mom

49 Days in the NICU

Exactly 7 weeks ago at this exact time Caleb was born. He has been in the NICU 49 days so far. He is weighing in at 5 pounds 6.8 ounces and has some awesome cheeks going. Zeb and I both got to hold him today. Instead of the kangaroo holding we just held him wrapped in his blankets to see if that helped. He tolerated it much better. He has been in the 60's oxygen wise yesterday and today. The eye exam the other day went well and they'll continue to do check ups. The ultrasound on his brain showed a grade 1 brain bleed but apparently that's normal for preemies. You worry when it's grade 3. It's so nice to be able to hold Caleb's hand, touch his face and sing to him and not have his saturation alarms go off. That is a blessing.

I wish I knew the future, but I don't have super powers. And knowing the future wouldn't require faith and trust, I suppose. I have so many thoughts go through my mind each day. I have so many feelings. I feel like I'm living another life. It's hard to explain what this experience is like.  I know I receive so many blessings and I truly believe that I'm not even aware of most of them. Blessings given by those around me and from my Heavenly Father that I just don't know about. But I can feel them. I'm so grateful for so many things. So many people praying for us. So many acts of service. So much love. Thank you. 

Xoxo

Me