Overwhelmed

No warnings or words of wisdom could have prepared us for what life is like with a newborn. Yes, Mr. Boy is 3 months old now, but he is gestationally 3 weeks old and that is the reality in which he lives and operates. The sleepless nights took a toll on our nerves and attitudes, and when you are utterly exhausted and defeated, being nice to each other is the last thing you want to do. We found ourselves living in fear of the next ear-piercing cry and dreading diaper changes because his medical device never stuck. They sent us home with a month's supply of medical products and we busted through those in our first week home because Mr. Boy's anatomy is different from most and even the Dr admitted that we would have many extra challenges. Changing the medical devices is a nightmare for us and many tears were shed from both Mr. Boy's eyes and mine during those moments. I gave up breast feeding because he hates it and is already so used to the bottle, so I continue to pump and bottle him instead, which was upsetting to decide. We already had 5 appointments with doctors and I decided during those times that I may never leave the house with this child unless forced to do so for Dr appointments. The freezing weather doesn't help travel either. 3 days ago Mr. Boy began throwing up everything he ate and having diarrhea...needless to say, that was was not fun for anyone. By the end of this week we were ready to beg the hospital to take us back. We felt so unprepared to care for Mr. Boy's  needs and were at our wit's end. I think we can honestly say, without being too dramatic, that this was the most stressful week of our lives.

Yesterday I had a melt-down and cried on and off for hours.  The only thing that soothed me was a song I listened to while I was trying to soothe Mr. Boy. Here are some of the lyrics:

"My Little One" by Jon Thurlow

There's no need to be afraid, 

Daddy's here and its ok,

my love will take the fear away... my little one.

 You can give to me the doubts and fears,

pour out your heart, I'll catch the tears,

I've always been the God who hears... my little one.

You've held it in a long, long time,

 so let it out, it's ok to cry, 

my heart and arms are open wide... my little one.

I'll hold you close and tight to me,

I'll help you through the unbelief,

I said that I would never leave... my little one.

After our appointments yesterday with the experts and the Dr. regarding his throwing up and diarrhea, I felt much more hopeful for the future. We know things will get better and these days of utter helplessness and stress will eventually be filed far away in our memory reservoirs, but right now it seems so insane. Thank you all for praying, I could definitely feel the power of prayer yesterday when I felt like giving up. Sorry there are no accompanying pictures or videos, we haven't had a moment with clear enough minds to take any!

What is home like?

We found out this week that while having a child in the NICU is extremely difficult, having them in your own home is much crazier! :) Where are the nurses when its 3 in the morning and Mr. Boy is crying?? Where are the monitors when Mr. Boy is sleeping and we want to know if he is still breathing? Where are the doctors when its time to give him his medicine or when his surgical site looks inflamed? Things are really fun, scary, stressful and wonderful all at once. heehee.

Last night, I was changing his diaper while David got his bath ready. I got him undressed only to find his medical device was coming of and there was a mess. Changing the device is quite the stressful endeavor, so it took both of us to attempt. In the middle of changing the device, and amid shrieking screams of discontent from Mr. Boy,  the power went out because we had space heaters running in his room and the bathroom. Because we live in a very old apartment, we cant just go and flip the circuit breaker, we have to replace the blown fuse and of course this night we were out of them. David ran to Wal-mart for more fuses while I scrambled to affix a new device to my son and mix his blood pressure medicine into his milk using a flashlight.  I don't do well under pressure, so it took double the amount of time it should have due to my stress and due to running back and forth to make sure Mr. Boy's arm had not fallen off from all the screaming. As soon as I was ready to feed him, he fell silent... he had cried himself to sleep. This would have been nice accept once the milk is mixed with the medicine and warmed up, its only good for an hour. Needless to say, it was an eventful first night. After we got through the initial kinks and worked out a system and strategy for Mr. Boy's care, we were able to breath an just enjoy our son.

Last moments in the NICU

Empty Room!

Goodbye NICU

Arriving home for the first time

Looking so small in the huge crib

Lounging in the living room.

Home At Last

Getting Ready :)

Yesterday was a very stressful day as we tried to get all the last minute things in order for Mr. Boy s departure from the NICU.  Things like: getting his room ready, organizing the house, learning how to give him his medicine, meeting with his millions of doctors/surgeons, and getting follow-up appointments.  We have come to the conclusion that you can never feel ready or prepared for things like this.  Last night we got dressed up and went to a really nice dinner, just the two of us.  It will probably be a while before we can do that again.  :)

Despite how hard today has been, we are ecstatic about the thought that our little boy will soon be with us 24/7.  We were also told today by the pediatric urologist "Of the 30 or so cases of __ that I have seen, Mr Boy is the most healthy."  We know this is the Lords hand over Mr. Boy's body.

Today is the day!!!

HOMECOMING!!!!!!!!!

Mr. Boy is coming home!

We have had a whirl-wind of a week.  One day we think it will take a month, the very next day we think it will take 2-3 weeks, and a few days later we hear he could come home in days. After I heard that Mr. Boy could be coming home in a few days, I trembled for over an hour. We couldn't be more excited, scared, happy, nervous, terrified, and scared. haha. Mr. Boy is almost 90% positively going to come home Wednesday, Feb 16th. We've spent the last few days watching mandatory discharge videos, getting car seat checks, running to Target for last minute items, and saying goodbye to all the nurses we have grown to love so much.

Mr. Boy is now allowed to eat as much as he wants, when he wants it. He is like a new boy completely. He eats hard and sleeps hard and seems very content. We just cant wait to bring him home and hold him with no cords attached.   

Thank you to all of Mr. Boy's nurses, for loving our son, for answering our endless questions, and for entertaining us day after day. You have encouraged us and made this section of our journey that much more bearable. :) We love you all!!!

The walk we have to take to the hospital (in the distance) from our driveway. This distance will no longer separate us from our son!

More Casts for the Club Foot

After surgery, we did not put Mr. Boy's boots back on on for about a week since our prime concern was keeping him comfortable (even though they were supposed to be worn 24/7). We thought we were just hitting the pause button on the progress with his club foot, but we learned today that in that week Mr. Boy's foot actually digressed. Unfortunately, the orthopedic surgeron will have to re-cast Mr Boy's leg a few more times and then start the boots over again. It's always frustrating when there's no progress and even more upsetting when you go backward, but we still think the doctors made the right decision to keep the boots off the week after surgery since that would have caused him more pain and discomfort during a very critical time. He got his next cast on today.

Happy Due Date!

Last Tuesday, Feburary 1st was Mr. Boy's Due Date! It's crazy to think we were given the gift of knowing our son 2 and a half months longer than we should have. Gestationally, he is finally a Newborn (40 weeks old) and not a premie anymore! And he weighs in at a whopping 7 lbs 9oz which is up from 4 lbs when he was born. Not bad for a "newborn." 

I asked one of the Neonatologists this morning for the worst-case, best-case scenarios for getting Mr. Boy home. He said about one month best case, and 2 months worst case. They just aren’t sure if he’s got enough intestines and/or stomach to take full feedings of breast milk and that takes time and patience to determine.  Thanks to everyone who participated in our fabulous Baby Shower last Saturday, Mr. Boy's room is finally ready for his arrival whenever that may be! :)

Mr. Boy is doing much better now since surgery. He is still on the nasal canula to assist in breathing and he's still on narcotics for pain, but he is finally looking and acting a little more like the boy we once knew.

Sad face we saw allll last week as he had trouble sleeping and being comfortable. It was a hard week.

Finally able to sit in his bouncy again.

big yawn!

bouncing

Video of Mr. Boy BEFORE surgery. 

Video of Mr. Boy BEFORE Surgery

The Business of Breathing

Mr. Boy finally got off the breathing tube yesterday but he had such labored breathing, they put him on another breathing device called the C-PAP (see below) to give him a break overnight. This morning he then went to a less intense breathing aid which was fun because we finally got to hold him again! It's been 8 days since we were able to hold him, so that was marvelous. He still has trouble breathing because he has a small case of pneumonia, and so he's breathing up lots of fluid and mucus, he's pretty squeaky and crackly. He still seems to be pretty uncomfortable and restless, but hopefully in a few days we'll say goodbye to his furrowed brown, pouty face, swollen body and crackly voice, and say hello to a more comfortable little boy:)

C-PAP