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

Quick Post

After his oxygen requirements hitting 80% earlier this week, I'm happy to report that Caleb is currently at 55%.  I say this with some hesitation, because it was about a week ago that I was holding him and his oxygen went from 43% to 75%.  We know this number could change at any time, but we're thankful for the decrease.

Caleb had a new feeding tube put in yesterday.  Instead of eating every three hours with the food going to his stomach, the new feeding tube bypasses his stomach and delivers a continuous flow of food straight to his intestine.  One of the risks of the food being in the stomach is that Caleb could spit-up and then aspirate some of that spit-up into his lungs.  Obviously not good for a baby with chronic lung disease.  This new tube significantly reduces that possibility.  In addition, with the food going straight to the intestine his stomach won't be expanding with each feeding. The theory is that if his stomach is taking up less space, it will be easier for his lungs to expand when he breaths.  The risk is that bypassing the stomach may cause him to gain weight more slowly.  

Since Caleb has had a rough few days I worked from the hospital yesterday and was able to spend about two hours just holding his hand while he slept.  I love this little guy.

Not a good day

This morning did not start out good for me.
After getting a call from Lowe's to tell us they would drop off our new freezer (we need one for food storage and all the milk that's accumulating) between 11:30 and 1:30 (when I'm usually at the hospital with Caleb) and the friend that was going to pick up Julia had sick kids (hope you feel better soon) I realized I would have to go to the hospital during rush hour to get 30-45 minutes with Caleb before leaving to get Julia and be here for the freezer.

On my way in I was on ridge road trying to switch lanes. I had my blinker on and the person didn't want to let me over (or didn't see me). So I moved back into my lane and tried again once they were passed. The next car didn't want to let me in either so I just decided I had room and should go for it. Apparently they didn't think I should so they let me know. I muttered in the car, "It's called a blinker and I'm using it." I was bugged and frazzled.

I proceeded through town and got on the freeway. I was thinking about Caleb. I think about him all the time. We had a conversation with the Doctor yesterday that has been on my mind. A conversion that was hard to have. In order for Caleb to ever be able to come home he has to make some improvements. Even if he comes home with a trach and home ventilator he has to make progress before that can happen. Unfortunately Caleb is still creeping in the wrong direction which makes things even more difficult.

I know that miracles happen. I know without a doubt that Caleb can be healed.  But I also know that Heavenly Father has a plan for Caleb specifically and we don't know what that plan is. There are so many days I think he will be just fine and there are so many days I am wracked with emotion and sadness at the thought of not having him grow up with the girls. I want to raise him here and now more than I can express but I have learned that we need to be willing to submit our will to Heavenly Father.  If we pray for months for Caleb to get better and his plan was to come to earth to get a body than it seems as though heavenly father didn't answer our prayers. We are trying to teach the girls that we need to have faith in and trust heavenly father and know that he understands and knows all. He knows more than we do and can see beyond the now. That doesn't mean that our hearts don't hurt, they hurt a lot. It doesn't mean that heavenly father doesn't love us, he has a deep and abiding love for us. We just need to trust him and realize there are things beyond our understanding. Things we may never understand in this life. The WHY is a big question. That is where faith and trust come in.

I was thinking of so many things when I realized the next freeway I needed to get on was coming up. I tried to snap out of my thoughts and emotions and saw that the exit was backed up and I was going to miss it. Without good judgment I slowed way down and put my blinker on. In fact I came to a stop on the freeway with the back end of my car sticking out of the lane. I couldn't miss the exit. I only had a little time with Caleb and I needed that exit. Well, behind me there was a horn that blared long and loud. I looked up and noticed a policeman with lights on. He pointed at me in the mirror so I know I was to pull over. Well he was really mad and I didn't get a chance to pull over so he just hopped out of his car while we were in the exit lane. I rolled down the window, of course in tears, and he yelled and yelled. "WHAT IN THE BLEEP ARE YOU DOING? ARE YOU CRAZY? GIVE ME YOUR LICENSE AND INSURANCE NOW. YOU HAVE TO BE OUR OF YOUR BLEEP MIND. BLEEP. YOURE LUCKY I WAS BEHIND YOU AND NOT SOMEONE ELSE OR YOU BLEEP WOULD BE ALL OVER THE BLEEP FREEWAY. YOU CANT JUST STOP ON THE FREEWAY. WHERE ARE YOU GOING?" I kept crying and told him I was so sorry. That he was right. That I didn't know what I was thinking. That I was on my way to see my son in the hospital and that I just wasn't thinking clearly. He then yelled a bunch more. Over and over. He yelled about how he gets in trouble if there are wrecks on the highway and that I can't just stop on the freeway like that. He yelled and asked if I knew how to get there. I told him was going to Dallas Presbyterian and that i was going to the 635 to the 75. He handed me my license and insurance information back and yelled some more. I drove off without a ticket and watched as 2 cars ahead of me a silver SUV did the exact same thing I did, slowed down to a stop trying to get into the exit lane. Apparently I'm not the only person out there that makes bad judgement calls on the freeway.

So I spend the next 15 minutes in stop and go traffic on the 635 and just sobbed. I stopped crying and made it to the hospital without accidentally hurting myself or other drivers on the road. And thankfully the traffic cleared. I had 45 minutes to spend with Caleb and couldn't help but feel crushed when I saw that his oxygen was at 77 percent. I just sat by his crib and told him I loved him. That daddy would be there to see him and that I would be able to stay longer tomorrow. Before I knew it my visit was up but not before I got to change his smelly bum. I don't know that I have ever been so excited to change a poopy diaper. It allows me to have interaction with him and makes me feel like I'm doing something for him. I cried most of the way home.

Last night Hallie came into my room crying and said she didn't want to go to school today. I asked her why and she said, "Because people are going to ask how Caleb is doing and I have to lie to satisfy them." Poor Hallie feels like she can't tell people how sick Caleb is because she knows how much they want him to be okay. It broke my heart. I have to admit that when people ask me how Caleb is doing I want so badly to be able to say, "He's doing great," or "He had a great day," or "He may be off the ventilator soon," when usually his oxygen has gone up. So mostly I avoid the texts or type numb responses. I promise you all that if Caleb improves we will post it. We will. But in the meantime we don't post as much because he isn't improving and his oxygen changes so much, even on a daily basis. We are in a very hard position right now. It's like we are in limbo. Not knowing which way things will go and not knowing what Heavenly Father's plan is for Caleb. So be patient with us and know we will post when there is something to post.

And we will wait and trust.

xoxo

Me

6 Weeks

I can't believe Caleb is 6 weeks old. It's crazy to me that 6 weeks has gone by. If you go by gestation like they do in the NICU he is 35 Weeks and 3 days. 

I look back at the last 4 months and they seem like a blur. Just 4 months ago we were sitting in the office at the pregnancy spa with the girls waiting to find out if we were having a boy or girl. The girls held hands and jumped up and down screaming when the sonographer said it was a boy. They had each, at different times in months previous, mentioned that they wanted a baby brother. Sometimes begging for one. That day in the office was pretty awesome. By the end of that same month I was on bed rest for the first time in my life because of bleeding. By October my amniotic fluid started leaking while on bed rest but I didn't want to go in to the ER to see what was happening. I didn't want it to be my fluid. I listened to Zeb when he insisted we go in because deep down I knew something was wrong. And so my hospital stay began. My water resealed but broke again less than 2 weeks later. By November I had my first trip to labor and delivery but was able to go back to antepardem. Then December 12, 2014 our sweet little boy came into this world 10 and a half weeks early. Words can't express how much I love this boy. I have loved him long before I was ever pregnant with him. 

The NICU roller coaster is harder than anything I've ever experienced. The ups and downs so intense yet you can't escape them. One minute you're wanting to plan the nursery and get it ready and the same day you're crying so hard your face goes numb. The monitors for Caleb go off so many times I  lose count. I wish I could ignore them. 

We have seen so many babies in the same NICU nursery come and then go to special care that I lost track. We saw a baby that was barely 2 pounds be extubated and go to CPAP.  Caleb looks like a tank in there weighing in today at 5 pounds 7.5 ounces! But we all know I have chubby babies! He's on track to be like his sisters. 

I love these pictures. I love every picture of him. I took the one below because I like to feel that we are with him all the time. The animal the girls picked out is always in his crib. Our family picture is placed where he can see us. We pray that he can feel our love for him all the time. We pray that he will be strengthened and comforted. 

With the constant change on Caleb's many settings there are a few things that have remained constant. With all the uncertainty about what is to come there are a few things I am certain of. 

1. That we love Caleb and he is part of our family forever. 

2. That we trust our Heavenly Father and have faith in his plan for our family. 

One of my favorite scriptures that I came to love in college is Proverbs 3:5-6 Trust in the Lord with all thy heart and lean not unto thine own understanding. In all thy ways acknowledge him and he shall direct thy paths.  

Xoxo

Me 

A Long Night

Now that I'm back at work, Leah and I decided that it would be a good idea for me to stay at the hospital twice a week so that I would be able to spend some time with Caleb.  The plan was to have me sleep in one of the hospital's NICU parent rooms on Monday night and Wednesday night.  That way I would see Caleb Monday evening after work, Tuesday morning before work, Wednesday evening after work and Thursday morning before work.  Then we could do our normal visits for the weekend.  To be fair, it was actually my idea, and it was a terrible one.

When Caleb was first born we stayed in one of the rooms that the hospital has for NICU parents.  It really is a great setup because it allows parents to be on the same floor as their baby after the mom is discharged.  In addition, it keeps parents off the road when they've gotten little to no sleep.  Being able to walk from the nursery to a sleeping room was a life saver that first week.  We spent so many late nights sitting with Caleb that by the time we made the walk to the room we were half way to dreamland.  When our heads hit the pillow we were out.  I guess I'm too well rested for that now, because that's not how it worked last night.  There was so much noise (the commuter train, shower next door, doors opening and closing, people on the phone, etc.) that I eventually called it quits and ended up driving home.

But the noise probably wasn't the only thing that was keeping me from sleeping.  When I got to the hospital last night Caleb's oxygen was at 43%!  I immediately texted Leah to tell her the good news.  Caleb's oxygen hasn't been that low since right after he came off the high frequency ventilator.  I called the girls on FaceTime to show them how well he was doing, and we were having a great evening.  To make it even better the nurse asked if I wanted to hold him.  To that point I had only held him twice, so with his oxygen that low it was a no brainer.  I settled into a chair and she worked Caleb and all his tubes and wiring out of the crib and into my arms.  He was pretty awake so of course I made every effort to try to get him to look at me.  But apparently I am a pretty boring dude, because he didn't have much interest.

Normally when we hold Caleb his oxygen requirement will go up a little, but then he settles in and he does really well.  But last night while I was holding him his oxygen just kept going up.  50%, 55%, 60%, 65%, 70%.  Finally I asked the nurse to put him back in his crib in hopes that he would settle down and his oxygen would drop a bit.  But it didn't.  In fact, it climbed to 80%.  At least part of the problem was that there is a leak around Caleb's breathing tube.  Caleb's trachea has been getting bigger as he has grown, and obviously his breathing tube doesn't grow along with him, so there is a gap between the tube and his trachea that allows some of the oxygen to leak out.  Over the past few days that leak has gotten larger.  Unfortunately, Caleb isn't quite big enough for the next size of breathing tube, so we have been holding off on replacing it.  The concern is that a tube that is too large could damage his trachea.  But after the rise in oxygen last night we didn't have much choice.  Around 2:00 this morning they pulled his breathing tube and put in the larger tube.  The nurse said that he didn't like it at all, but that the new tube was in and that his oxygen was down to 50%.  While I'm typing this his oxygen is at 64%.  At this point we'll just have to monitor him to see how he does with the new tube and hope that there's no damage, or that any damage resolves itself quickly.

So I guess this is the roller coaster that NICU parents talk about.  I told Leah last night that I am beginning to hate the monitors around his crib, the constant blinking and beeping.  The numbers on those displays are incessantly trying to control my emotions, trying to dictate happiness and sadness.  And while the numbers were all running in our favor I honestly really didn't mind turning over control of my emotions.  In fact I probably gave those numbers an unwarranted amount of my attention.  But now that the numbers are stalling, rising, and falling it can be difficult to take my emotions back.  Fortunately for me there is a 5 pound 4 ounce jowl faced munchkin that is in lying in the middle of all those monitors, and despite the blinking and beeping that unendingly tries to grab my attention, he somehow always seems to be able to bring that attention back where it's supposed to be.

Update and What's Ahead

Hey everyone, this is Zeb.  Leah had mentioned that people were getting anxious for a new post, so I thought I would take a chance to update everyone on how Caleb is doing and also try to explain where things may be going.

I'll start with a short explanation of how Caleb and his ventilator work together. Caleb is still on the conventional ventilator, and he has three settings on this ventilator that we follow pretty closely, 1) oxygen percentage, 2) pressure, and 3) rate.  The oxygen percentage is pretty self explanatory.  Currently 50% of the air that is being pumped into Caleb's lungs is oxygen.  The air we breath contains approximately 21% oxygen, so his oxygen requirements need to come down in order for him to be able to survive breathing the air that you and I breath.  The pressure is actually comprised of two numbers.  The first number is basically a minimum pressure.  Caleb has to have a certain amount of air pumped into his lungs in order to prevent them from deflating completely, so this number stays the same all the time.  He also has a maximum amount that is being pumped into his lungs to ensure that his lungs are inflated sufficiently.  If Caleb can't fill his lungs on his own, this maximum number covers the difference.  The maximum amount can actually be reduced as Caleb learns to breath on his own and is strong enough to take breaths that completely fill his lungs.  Currently these numbers are at 7 and 16, respectively.  Finally, there is the rate of breaths Caleb receives per minute.  The conventional ventilator actually monitors whether or not Caleb is trying to breath on his own.  If he takes a breath on his own the ventilator won't initiate a breath.  However, if he forgets to breath, the ventilator will initiate a breath for him.  Currently his rate of breaths is at 28.  The great thing about the ventilator is that it is keeping Caleb alive.  The terrible thing about the ventilator is that it actually damages his lungs, and the longer he is on the ventilator the more damage it does.

When Caleb was first placed on the conventional ventilator his oxygen was at 38%.  So obviously that number has slowly climbed over the past few weeks, and obviously that's not what we want.  Last Monday we decided to start Caleb on a steroid treatment that we hoped would allow us to reduce all three of his ventilator settings. Typically the steroid results in a reduction in the rate and pressure settings first, and the oxygen follows shortly thereafter.  The largest benefits from the steroid are typically seen between days three and five.  We have now come to the end of the steroid treatment, and unfortunately, the steroid really didn't work for Caleb.  We were able to lower both his rate and his pressure, but his oxygen had to increase to compensate for the reductions in the other two settings.  The steroid treatment was really the last conventional option that we have available to try to speed Caleb's lung development, which is obviously something we want to do in order to avoid the damage the ventilator causes.

So at this point we settle in for a prolonged and difficult NICU road.  There may be one or two non-typical treatments that we may try, but of the options we've discussed none have been shown to have a direct benefit on lung development.  Caleb will need to grow new lung tissue and he will need to grow that tissue at a rate that outpaces the damage that is being done by the ventilator, something that, thus far, he has not been able to do.  So the doctors are increasing the amount of milk he receives, supplementing that milk with extra calories and nutrients, and continuing his breathing treatments in the hopes that our little guy will grow faster and his lungs will get stronger.

Caleb's situation is very unique.  In fact, only 1% of pregnant women experience premature rupture of membranes prior to 20 weeks.  And of that 1% approximately 75% of those women deliver within the first 48 hours after rupture.  I have read that a substantial portion of a baby's lung development, which requires the presence of amniotic fluid, occurs between weeks 19 and 21.  Since Leah's membranes ruptured just after 19 weeks, Caleb missed out on a critical stage of lung development.  So Caleb is in a pretty select group that is hard to compare and hard for the doctors to know how to treat.  We have had several friends, with very good intentions, tell us about friends or family with a preemie baby that was born at X weeks, was in the NICU for a month or two before going home, and is now alive and well.  And when Leah was taken to labor and delivery we thought that Caleb would follow that same track.  Now I'm not saying that Caleb will never come home with us or that it would be impossible for him to come home sooner than we anticipate, and I'm not saying that other preemies and their families don't have significant challenges, but from what the doctors are telling us, Caleb's challenges are very unique and he likely won't be coming home any time soon.

On Saturday we had a conversation with one of Caleb's doctors and he told us that a child with a history very similar to Caleb's recently passed away.  He had made it 7 months in the NICU, but ultimately wasn't able to develop enough lung tissue to survive.  Leah and I both know that Caleb still has a long road to be able to come home, but we really hadn't discussed mortality with a doctor since the morning after he was born.  Our most recent discussions have revolved around Caleb eventually coming home on some type of ventilation and how we would manage that type of a situation.  So to change the topic of discussion from the struggles we'd face when bringing him home to the struggles we'd face from never having a chance to have him in our home was a large blow.

Somehow all of this will work out.  I don't know precisely what the future holds for our little family, but we will continue to hold onto each other, and somehow all of this will work out.

Thank you for all of your prayers and support.

Zeb

Tuesday's Update

Yesterday's update from Leah:

We talked to the doctor this morning and he said Caleb's first eye exam went well. He still has premature eyes so they will repeat the exam on the 27th but nothing out of the ordinary for this first one. They are going to move Caleb to an open crib as soon as one becomes available. He gets hot in the closed crib so they have to open it a lot. It's better for him if his temperature remains constant. Hopefully he can do well in it and isn't overstimulated. Today was day two of the steroid. Maximum benefits are from days 3-5. Our hope is to be able to wean his oxygen down, if he responds well to the steroid, to get him to CPAP. The steroid isn't repeated and is a one time deal. I got to hold him today which was wonderful. Having him close to me is so amazing. It's so hard to see him every day for over a month and hardly get to touch him or connect with him. Feeling his little body snuggled close to mine is like a dream.

He has been taped and re taped so many times that he has so much residue left on his cheek. It’s so hard to get off since it’s so sticky. The tape also smashes his cheeks into jowels. I can’t wait to see what his chubbier cheeks look like. It’s been so hard to visit him and not be able to touch him. Your heart wants to touch him and hold him the whole time you’re there, yet you can’t. The moments I can are beautiful. 

Leah is beautiful inside and out. She has a heart the size of Texas. She ALWAYS has.

Love you Leah Lou. Part of my heart lives with you in Texas. You amaze me over and over.

xoxo

Ang

To Steroids and BEYOND...

Today's update from Leah:
He had his first eye exam today which we will here the results on tomorrow. His eyes are swollen because of the exam but of course his is still cute. I love to hold his little hand when he's up to it. I love how he'll grab on and not let go for several minutes. We had him unwrapped since he was getting a little toasty. It was so hard to watch his chest go up and down. I wish I could breathe for him. His little body is trying so hard. Goodness I love him.

I wish I could kiss his cheeks! We started the steroid dexamethazone for Caleb this morning. The course is twice a day for 10 days. After 2 days the doc says you usually start to see some improvements. Babies that respond well can be weaned down on oxygen. We hope Caleb is able to benefit from the steroids. While we were at the hospital he pooped 4 times in a matter of 20 minutes. Zeb was wearing a mask and still caught wind of Caleb's business. It was hilarious. The fortifier they give him for added calories sure does stink. Like clear the room stink. He is up to 4 pounds 14 ounces although Zeb said after the poopy diapers he's probably more like 4!!!! 

I know their family feels the prayers being said for them. Thank you!!! A funny story... Christmas morning our kids were gathered in our bedroom before we went to see if Santa had come. Our youngest, age 3 was SO excited. We told him we were going to have a prayer first. He immediately got on his knees, prayed for Leah, said amen and was ready to go!! It made my heart smile.

I love you little stinky Caleb!!

xoxo

Auntie Angie

One Month Old

Caleb's oxygen has been floating around 50 to 60% today. We talked to the doctor and we will likely start an IV steroid tomorrow. His oxygen requirement has been trending higher so the hope is that the steroid will help bring the oxygen requirement down. As with all medicines there are side effects but at this point the benefits appear to outweigh the risk of the side effects. He now weighs 4lbs. 11oz. I was holding his hand through the blanket helping his oxygen saturation to come back up. Almost every nurse that has him talks about how cute he is, how much hair he has and that he looks like his daddy. We'll keep you posted.

I love this picture of Leah and Caleb. You can feel her love for him. It reminded me of a beautiful quote I love. President Boyd K. Packer (he is an apostle in our church) said,

"I have come to know that faith is a real power, not just an expression of belief. There are few things more powerful than the faithful prayers of a righteous mother." 

A little shout out to Zeb: Good work on Leah's new camera for Christmas!! These pictures look so good. Amazing the difference a good camera makes.

And now... I believe a little song is in order...

One month older and wiser too, Happy One Month Birthday, to You!!

Love you baby, Caleb.

Cohen and I sang to you today on the web cam. Wish you could hear it... Cohen thinks you can! He tells me everyday... "SHHHH he's sleeping. Don't wake him up."

xoxo

Auntie Angie

Believe

Last night's update:

Caleb had a hard night oxygen wise again. He went back up to the 80's. We decided to have him put back in the isolette crib to see if it would help his oxygen saturation. He was back in the 60s Friday morning. His oxygen trend has been creeping up instead of creeping down. This is a hard roller coaster to be on. We know there is a plan and purpose for Caleb and his life. We are putting our trust in Heavenly Father and whatever His plan is for Caleb. Thanks for your love, prayers and continued support.

I talked with Leah this morning and last night Caleb's oxygen was up to 75%.  Caleb has the hardest time using his lungs when he is on his back. He was 4 weeks old on Thursday. I love these pictures of him. I love the picture of his family's Christmas card in his crib. They are his biggest cheerleaders. It makes me tear up. 

Caleb was born into one of the most loving and committed families I know. Leah was on bed rest at home for bleeding when she chose their Christmas card. You can sort of see that along the bottom there is one word: BELIEVE. That was picked out and printed before Leah's water broke. It is perfect. 

Another special thing about the Christmas card in his bed is the story behind the picture... We were in San Diego with Leah's family. A few of my sister's families and my Mom rented a house and spent the week together last August. We all traveled separately and met at the house on a Sunday afternoon. We were all so excited to see each other and the kids were running around thrilled to be together. We hadn't even been there for an hour when Leah pulled her family aside and then asked us all to come into the living room. I knew right away what she was going to announce... not that she told me.... but I know Leah. Steph made the comment... "You do realize what we all think you are going to say, right?" I grabbed my camera and video camera. Leah's girls each held up a sign announcing baby #5 in the Fish family. We screamed and cried (that is the most typical McConnell female reaction!). It was wonderful. I took the family picture of them on the beach. Leah is 12 weeks along with Caleb. Less than 8 weeks later, hardly even showing, her water broke. 

Caleb HAS taught us to BELIEVE.

I love you, baby boy. SO much. Your life has changed mine. You keep fighting and we'll keep praying.

xoxo

Auntie Angie

Big Boy Bed

This morning the nurse put a note on Caleb that said he was in a big boy crib!! He has been regulating his body temperature well so the nurse moved him to an open crib. The doctor said the nurse moved him sooner than he would have, since Caleb tends to be sensitive to noise, but hopefully he will tolerate it well. Dr Green said that his chest xray looks better today than it has in the last few weeks. We are really excited about that. The next 4 weeks will tell us a lot. If Caleb is able to move to the CPAP machine he'd be moving in the right direction. If he isn't able to then we would start talking about a trachea and possibly coming home on the ventilator. He just needs time for his lungs to develop more lung tissue so he can breathe better. The more he grows the more lung tissue he can grow. He's gained over a pound since he was born so that's fantastic.

Being in the big boy bed means Caleb can wear clothes and socks, which I think is super fun! 

You can see the peace sign dragon fly picture that Julia colored for him that's taped to his crib. She was super excited to see it by him! 

Zeb was able to see Caleb for the first time in a week. He wore a mask and gloves, since he still has a cough, which I'm sure was worth it. His daddy has missed him. While Zeb was talking to him Caleb was wide eyed and very happy. 

I was able to hold Caleb for about 30 minutes today. It's stressful since his saturation tends to go down and the alarms go off but he seemed to tolerate it okay. They go off even when he's not being held. I love him more than words can say. So glad he's doing better than he was at the beginning of the week. It's definitely up and down and we do the best we can, one day at a time. That's the way our lives have been and will be for a while. 

Well I'm going to go to bed now. Thanks for your love and prayers.

xoxo 

Me

I See You

Our sister, Amanda, came across this article that was beautifully written and deepened my understanding of the NICU journey. It was written by a NICU nurse who has watched first hand parent after parent go through this process. I have said it before... I HAD NO IDEA how hard this was going to be. I have a new respect for every family that has gone through this. But, I know our family will be better for this journey... for Caleb's fight.

I got permission from the nurse who wrote it to share it here.
This article and picture are from her website: www.peekabooicu.net

Thank you for your love and prayers!
xoxo
Ang

* * *

I have read your blog posts and your Facebook status’, I have had the honor of getting to know a lot of you through social media, and have watched and cheered your children on from the NICU days through early childhood. I have had the privilege of meeting some of you in person and I must say you are an amazing group of people. You have candidly shared your thoughts, your lives, your children, and your heart with me and I am truly grateful to have this bird’s eye view of your world.

Being a NICU parent is hard. I know this, not because I am one, but because you have allowed me into your world and have given me a perspective that I would have never been able to have without this gift you have given me. To see through your eyes, to understand what it is like to walk in your shoes, and to really grasp the other end of the spectrum from your point of view. It is a gift, and I am, and will be forever grateful for this gift you have given me.

I know I don’t understand, and I will never understand completely what it is like to be you. Nor, do I pretend to understand what you are going through. But I do want you to know that I get it. I get that having a child prematurely or spending time in the NICU is not what you had planned and it is extremely hard watching your child suffer, feeling so helpless and full of fear. Having a medically fragile child is difficult and you may feel alone, isolated, or invisible. But today, I want you to know that you are not alone. You are not invisible, and that I see you.

I see you rushing into the NICU with your hair pulled back and your sweat pants on. Bending over at the sink scrubbing your hands with intent, hoping and praying that you made it in time for the 8am feeding. You are beautiful.

I see you sitting at your child’s bedside. Journal in hand, writing down your baby’s latest statistics: weight, isolette temperature, amount of oxygen, and ventilator settings. Things that no parent should ever have to think or worry about, but you do it. You are brave.

I see you walking the halls to the maternity ward to get a drink from the vending machine. You pass by a couple taking a stroll with their newborn baby in tow in a bassinet. They look so happy, you smile as they pass. The look on your face is one of admiration, but you march on. You are resilient.

I see you unpacking your never ending pumping supplies, lining up your bottles, and preparing for your next power session, even though you did this routine just 2 hours ago. You are dedicated.

I see you standing over your baby’s isolette, counting down the hours until the next “hands on care”, longing to touch and hold your child, and praying you will get to have kangaroo care time today. You are loving.

I see you as new parents enter the NICU for the first time. They are scared, nervous, and afraid of what the future holds. You too, are worried about the future, but I see you approach them and offer a shoulder to lean or cry on. I see you explain to them the ropes, telling them that it won’t be easy, but  assuring them that you are there if they need your help. You are compassionate.

I see you as the neonatologist leaves your baby’s bedside after giving you an update and the plan for the day. You look puzzled and somewhat afraid. Confused by the medical terminology, you ask questions, and you begin to research and learn all that you can about your child’s diagnosis and possible future. You are an advocate.

I see you as your family and friends visit your child who has now been in the NICU for weeks on end. They ask questions, the wonder, and they sometimes make uninformed or even hurtful comments. They may fail to recognize that this journey is long and hard, not just for your baby, but for you too. You don’t get upset. You answer their questions politely, and educate them the as best that you can, and then you thank them for their concerns. You are amazing.

I see you as you perform diaper changes through all the wires, tubes, and machines. You look beyond all this medical machinery and smile in admiration of your little fighter. You have been through so much, you have seen so much, and you have loved so deeply and abundantly through it all. You are courageous.

You spend countless hours worrying about, defending, and advocating for your baby. You spend days, weeks, months, and often years beyond the NICU experience learning best therapies, best medical devices, finding the best doctors, and the best schools for your child. You may be burdened with huge medical bills. You may feel isolated and alone in this new NICU world and beyond these doors in the years to come. But today, I want you to know that you are not alone and you are not invisible. I can never truly say that I understand everything that you have been through because I haven’t walked in your shoes. But I hope you can hear my heart when I say I get it. I see you.

I see you when you’re tired and at the end of your rope but you truck on. I see you when your patience is wearing thin but you continue on with determination. I see the amazing strength you possess for your little one. I see you when you are astonished by the wonder of your tiny brave hero as you celebrate another amazing milestone. I see you when you are left standing between your baby and this sometimes cruel and critical world we live in. I see it all, and I see you.

I acknowledge you.

I admire you.

And

I applaud you.

We love our nurses!!!

Update from Leah:
Caleb had a blood transfusion a few days ago. When they do a transfusion they hold the feedings. When they start feeding them again once the transfusion is done, they start a little at a time. Unfortunately Caleb hadn't popped since then. They gave him 3 suppositories over a few days and still nothing. Apparently he pooped after I left because the nurse put this note in his crib with him so i would know. My mom noticed the note and called me. I loved it. I love his nurses!

While I was there today Caleb had his thumb in his mouth. The tube makes it hard but he managed to get it in there. It was adorable.

Caleb's oxygen was in the 40s and 50s today which is good. He's a fighter like his daddy.

Keep going little Caleb. We love you.
xoxo
Auntie Ang

A hard night...

Sunday night text: Between five and six Caleb had what is called a Bradycardia episode. It's when his heart rate drops under 90 which causes his oxygen saturation levels to drop. Because of this his oxygen is now at 80 percent. This Brady episode is often caused when the baby forgets to breathe. Monday afternoon text: After needing 80 percent oxygen last night and this morning we are glad that Caleb is down to 60 now. They ran blood work and tests and they are negative for RSV and the flu. He continues to get breathing treatments every 6 hours that have albuterol and pulmicort (steroid) to help his lungs.

Leah also asked that I mention how grateful they are for the continued prayers and faith. After a scary night, he is doing better today.

After talking to Amanda (our older sister who is a NICU nurse) I learned a few things. Bradycardia episodes are common for preemies. What is not common is that Caleb's oxygen settings stayed so high overnight. Typically after half an hour or an hour, the baby is able to recover and stabilize. The reason they started the testing and were so concerned was because his numbers didn't improve for such a long period of time after his initial episode. 

These are some of my favorite pictures of Mr. Caleb. I also have to mention that Leah and Zeb have handled this difficult journey with faith and grace. It was in September that she first started bleeding with her water breaking two weeks later. I can't count how many up and downs there have been in the last 4 months. One things I have learned through out this process is that they weren't kidding we were told it would be a "roller coaster."  Until I had a front row seat, I had no idea how hard it really was to have a mirco preemie. I have a new respect for any family that has had their own NICU journey. 

We are stronger as a family because of Caleb. I see Leah and Zeb holding fast to each other and to the Lord. That is what has gotten them through this. I have always loved Leah... it is not hard! We have always been close. Watching her go through this pregnancy and the last 25 days with Caleb has been beyond heart wrenching BUT I also love her and respect her deeper than I ever have before. Thank you for letting me share my heart on here... not that you had any choice! :)  

I love you Fish family. More than you know.
Another day down. 
xoxo
Auntie Ang

I got to hold him!!!

After 24 days I got to hold my precious little boy.  Of course the emotions were high. Just yesterday I was crying in the closet not knowing what the future holds. Some days are good and I do okay with my emotions. Other days out of the blue I will just break down and cry. 

Zeb got to hold Caleb last week and I knew my turn would come. I havent felt sick and scrubbed my hands like crazy. I had fresh clothes on and slipped out of the house without hugs and kisses so I didn't have any "sick germs" on me. For the record I hate leaving the house without a kiss from Zeb and hugs from the girls, but it was a must. 

When I got to the hospital the nurse asked me if I wanted to hold him, I was caught off guard since the nurse the day before said he needed his oxygen in the 40's to be able to hold him, his oxygen was hovering at 60 when I got there. After texting Zeb about if I should hold him with the girls sick or not, he said he thought I should hold him. I got my chance today and it was beautiful. 

Yesterday when I brought home blankets from the hospital to wash I saw Zeb smelling them. He said they smelled like Caleb. I smelled them and thought they did a little bit but when I held Caleb today I completely understood. He has a certain smell and I still catch a wave of it even after being home. I love it and wish I could smell him always. 

It's really stressful to see him uncomfortable while you're holding him but for the most part he did great. I loved having him close to me again.  

I can't get over how much hair he has. How dark it is. How big his feet are. How tiny he is. How he smells. How his ear has a divot in the top like mine. How he's getting some cheeks. How he moves his eyebrows. How he has jowels because of the way they tape his ventilator tubes. How perfectly round his eyebrows are. How his thumb nails are like Zeb's, super long. How his toes are long like his daddy's. I just adore him. 

You gotta love the double chiln in the picture below. I know I do. 

They had to re tape his vent tube since it was coming out a little. And I couldn't help but take this picture of him since we hardly ever see his little body uncovered. His legs are so skinny I just love it. So grateful that I am healthy even though everyone else is sick because I was able to hold my little baby boy. Such a special moment. Such a long awaited day. Oh little boy, how I love you. 

xoxo

Me

I Really Hate Coming Up With Titles...

I talked with Leah this morning and Caleb had made some improvement with his oxygen settings in the 40's today. The doctor felt comfortable with the small improvement with just the one dose of lasix and decided against a second dose.

Except for Leah, their whole family is sick. The oldest three girls are throwing up and have colds. Julia is coughing and Zeb has a cold. Obviously they will not be going to see Caleb for a while. Thank goodness for the web cam! Get better quick little Fishies!

Leah had a post op appointment with Dr. Gillean today. She is Leah's OB. The one that took such wonderful care of Leah when she started bleeding at 17 weeks and then when here water broke at 19 weeks 5 days. She was so faithful in the hospital. When I was there for a week in October, I looked forward to seeing her. She was so positive and so good to Leah. What a blessing she has been. When Leah told me she had an appointment with her today I told her to get a picture of them together... Leah is always obedient! She said it was so good to see her.

I believe that a loving Heavenly Father puts people into our lives to help us deal with our individual challenges. I also believe Dr. Gillean is one of those people for Leah. When Leah made it to 23 weeks they transferred her to a bigger hospital with a level 3 NICU. They gave us 15 minutes notice for the transfer. Dr. Gillean got the news and literally ran to say good bye to Leah. She knew she had to switch Doctors when she moved to the new hospital and Dr. Gillean wasn't going to miss that good bye. It was so sweet to watch. They cried together as Leah thanked her and they loaded her onto the stretcher. I was grateful to be there. Dr. Gillean and many nurses got Leah to the point in her pregnancy that Caleb had a chance at this life on earth. We will be forever grateful for her and for all those who have worked with Leah and Caleb. Thank you!!

xoxo
Angie