We are family (and we're all under one roof!!)

Well, I apologize *once again* for the lack of updates. But, WE ARE HOME!! We've been home, as a family of four, for 3 weeks now.....and I couldn't be happier!! I could be more rested, but that's ok!
Miles is doing well. He came home on a heart monitor (which is another post in itself!) and is doing great! We were going to see our friend who is a family practice doc, but his office didn't quite know what to do with someone who wasn't even 5 1/2 lbs! So we were referred to a new doc whom we LOVE! She is such a sweetheart, and Miles has captured her heart! We came home weighing 5lbs 6oz. At our visit one week after discharge, we were only weighing 5lbs 6oz again. We are trying to exclusively breastfeed, so we went back last week for a weight check....and the little piglet weighed 5lbs 10oz! He gained 4oz in 6 days!!!
We go tomorrow to meet with the lactation specialist at the hospital, so we should have another weight tomorrow!
In other news, we moved into our house the weekend before Miles came home. We have been unpacked, but we are starting to make our house a home. Mom and I have been busy painting!! And it looks so good - amazing what a good coat of paint can do! Today, we started hanging pictures, mirrors, etc. I'm loving it! So what does one do when they are trying to paint and have a newborn who wants to be held most of the time? Turn to the Baby Bjorn of course!
Graham is adjusting well to Miles being home. In the mornings, he looks for Miles and then pats his head and gives him kisses. So sweet. He continues to amaze us with what he knows! He can now identify all of his letters and numbers. He is a puzzle nut! Tonight, as we were driving to Target, we were stopped at a traffic light and I hear "Z. F. E. N. D. S. Letters mommy!". I look out of the window and he is reading the letters off of the rolling marquis at the bank!
Come back for up-to-date pics of the boys, and stay tuned for pictures of the new house as it comes together!!!
Thank you for all of the thoughts & prayers!! God truly does wonderful things! We are so blessed to have our family under one roof!
With grateful hearts,
Jeff, Lauren, Graham & Miles

Blue is not a good hue...

I apologize for the lack of update yesterday, but it was an emotional day for me. Miles had a wonderful day and it looked like he would be coming home this weekend!! He came off of his oxygen, was breastfeeding wonderfully, and had lots and lots of alert time. He was so glad to get rid of his feeding tube as well! I needed to head home to spend some time with Graham while Jeff headed out to practice. Nurse "Auntie Karen" was going to take good care of him while I was gone, and after such a wonderful day, it was really at peace with heading home for a while. After Graham & I ate dinner, I called to see how Miles' 6pm feeding went. Nurse Karen picked up the phone, and the tone in her voice said that it wasn't good news. She told me that while Miles was eating his oxygen level dropped significantly and he turned blue. She thought that the nipple on the bottle might be too fast, so she changed to a slower nipple...but that didn't seem to help either. He ended up having 3 episodes during his feed. She assured me that this is common in preemies; and I reluctantly asked about a weekend discharge and was kindly told not to expect it. :(
I was home with Graham and tried to hold it together, but I just couldn't. Graham was exhausted; I was exhausted. Graham wouldn't go to sleep so I held my firstborn and was crying that he was so healthy, and I longed to have BOTH of my boys home, rocking them both to sleep. Graham felt a tear hit his face and he looked up at me and said "Here Mommy." and handed me a nunu. Well, that set the waterworks into full force! I told Graham that we needed to pray for Miles and he folded his hands and said the prayer after me. It was so sweet!
When Jeff got home from practice, I headed up to the hospital to be with Miles. The 45 min. drive felt like an ETERNITY! I called to check on him and Nurse Erin said that he had 5cc left of his bottle and hadn't had any episodes!! I got to the hospital and ran in to see my little man fast asleep. I spoke with Erin and she informed me that he had an episode right when we got off of the phone. There were new orders written to add Oxygen when feeding. Erin wanted to feed him at midnight, so I was able to get some much needed rest. I fed him at 3 without incident. At 6, he had an episode and needed oxygen. I am happy to say that since his 6AM feeding, he has only needed a "sniff" of oxygen once!
I was exhausted and laid down at 4pm this afternoon. Nurse Joanna asked me how I like to be woken up. My response was "it doesn't matter...but please don't let it be a set of 2-year old eyes that are staring at me and scare me to death". At 5:38 I felt someone standing over me...I open my eyes and it was Jeff & Graham! They decided to make a surprise visit to come see us! Joanna and I laughed at how I was woken up!! It was a much needed laugh to say the least! :)
Jeff & Graham held Miles for a while. It had been over a week since Graham saw Miles and he was in heaven. He helped change Miles' diaper. Handed Jeff Miles' blanket. And then ate a bag of chips - which he offered to Miles!! While I was feeding Miles, Graham was very interested and also wanted to be held. For the first time, I held both of my boys, but since I was feeding - it wasn't very photo-op friendly! I can't wait to have them both in my lap again!
I'm staying the night with Miles tonight and will head home early in the morning to have a packing-spree with Mom! Hopefully we will be super productive (and I might even get a nap in my own bed!) and get anything that doesn't breathe packed into a box!
Thank you for all of your prayers. Unfortunately, patience is not my forte. But I'm learning. I didn't say it was easy though!
Keep the prayers coming!!
Held in His healing hands,
Jeff, Lauren, Graham & Miles

A light at the end of the tunnel?

Just a quick update before I head back to the hospital. (We get kicked out from 7-8 AM & PM for shift change).

Miles is doing VERY well!! What a difference 48 hours can make! 48 hours ago, he was sluggish, lethargic, and just interested in sleeping; now, he is vigorous with his feeds, pulling his oxygen & feeding tube out, and waking up 30 minutes early for his feeds!! Praise God!
Last night, Miles weighed 5 lbs 1.8 oz. I'm curious to see his weight tonight b/c he has been eating so well! His shortest feed today was 27 minutes. As I was leaving the hospital, his night nurse came in and was shocked at how much better he looked! She said that the other night when she was on (Fri. night) she wasn't convinced that he wasn't getting sick. I'm so glad she didn't express that concern to me on Friday night! Just goes to show the power of prayer!

Today, nurse Linda had to change out Miles' id bracelets b/c they were starting to cut into his little wrists! Linda commented that he was "indeed porking up"! That's what we like to hear!!

Miles has been maintaining his Oxygen saturation at 99-100% all day, including feeds. This is also on HALF of the Oxygen that he was on yesterday. So we are definitely doing better, and I think that he is telling us that he doesn't need it anymore. Both nurses feel certain that it will come off tomorrow!! :) That's one less tube in the way of me kissing his sweet little face!!

Graham has the "daycare crud" going on right now and doesn't understand why he can't go to the hospital to see Miles. Jeff & I were hoping that today we would be able to have a family day at the hospital, but we have to look out for Miles' best interest. I know that Miles won't be able to live in a germ-free bubble, but he's still to fragile to expose him to any illnesses. Mom has offered to keep Graham tomorrow so that Jeff can come up and love on Miles.

A funny Graham story: Graham loves guitars. He developed this love on his own (makes me wonder if it's in the genes...). He has recently been carrying his guitar around the house singing a song that he made up. The words are "Daddy. Mommy. Daddy. Mommy. Maddy. Dommy." It is quite funny when he combines Mommy & Daddy. However, the other morning it went like this "Daddy. Mommy. Daddy. Miles. Mommy. Miles." How sweet is that?!?! I love him more and more every day!!!

That's about it! I hope that you are all having a nice, long-weekend.

Still praying for a discharge date...(although, Jeff's silent prayer is that Miles doesn't come home until we are settled into the new house!)

Jeff, Lauren, Graham & Miles

FIVE

Miles is finally five pounds ... and I have five pound to go to pre-pregnancy weight!! WHOO HOO for both of those! :) Although Miles deserves the credit for both of these!! He's worked so hard to keep his body temp. up, breathe, eat ... you know all of those things that he shouldn't even have to do right now!
He received his Epogen yesterday and the doc said that after his second dose we should see significant improvement. I can already tell that his color is getting better! He was keeping his oxygen saturation up pretty high last night, so they have cut his oxygen in half. The doc that was on last night (LOVE HER!) is at a different hospital for the weekend, which means that with a new doc comes a new plan of care. Thankfully Dr. S will be back on Tuesday!
Dr. S told me last night that best case scenario would be for Miles to come home next Friday; worst case is the following Friday. I can't believe that he is almost 3 weeks old!
Yesterday evening we had a little run in with his feeding being 2 1/2 hours late, Dr. S wrote some very explicit orders on feeding schedules, tube feedings vs. breast, etc. I'm telling you this lady loves her job (and her patients and their families!)! She told me that if there was an order written over the weekend that I wasn't comfortable with that I was more than welcome to have her called at the other hospital and she was rectify the situation to be as close to the plan that we had discussed. How many docs are going to make themselves that available??
That's about all that is new right now. Jeff & Graham had a boys day at the house which has included: wrestling, cleaning out the car, playing outside, and eating chocolate covered doughnuts!
Please continue to pray for Miles!!
With grateful hearts,
Jeff, Lauren, Graham & Miles

Also, please keep Kelly, Scott & Harper in your prayers....hop on over to her blog for the updates on Harper. Harper was born yesterday and has had a rough start at life. She was air lifted to another hospital an Kelly wasn't able to leave and be with her. The NICU life is stressful!!!

Shall we dance?

Miles has been doing so well, that it was inevitable that he'd have a couple bad days. He was eating like a champ, off of his oxygen, heading towards getting out of his isolette......and then he started having apenic episodes, his heart rate started dropping randomly, he became tired and sometimes lethargic....he was trying to remind us that even though he's doing well, he's still small & is supposed to be taking it easy having everything done for him in utero! Yesterday he had a rough day with his feedings and actually took most feeds by his tube. He was not interested in waking up to eat, let alone eat well!
This morning when I arrived at the hospital, the nurse was stalling on moving him to an open crib. No big deal I thought. They just had 2 admits of bad babies and they were busy. That was until the nurse practitioner came in and talked to me for a while. She explained that he was back-sliding, taking 2 steps forward and one step back is normal, it's known at the NICU 2-step -- but we had taken 2 steps backwards. Since she went off 48 hours prior (when he was tube free and eating fabulously), he had regained all of his tubes back and was sluggish. She said that he looked like a totally different baby today. They sent some lab work down to see what was going on. Was it infection? Anemia? Everything normal and he was just trying to tell us to take it slow? Thankfully the labs came back showing that he was very anemic. His retic count came back and they decided to start him on the Epogen protocol. Epogen will help Miles make more red blood cells and should allow him to carry Oxygen better throughout his little body! Our prayer is that this helps him. He will receive the shots on M-W-F's. His first dose will be tomorrow AM and then the next on Monday, etc. They will draw labs on Tuesday to see how his body is responding to the treatment. Please pray with us that this helps and that we see him turn the corner back to his perky self. Prior to yesterday the little piglet was rooting an hour before it was time to eat! Thankfully he is continuing to gain weight. Last night he was 4 lbs 15.7 oz. We might hit the 5 lbs mark tonight!!!
There are 3 private rooms attached to the main room of the NICU. Last night the nurse moved a baby out of one of the rooms and put Miles in the room. So we now have a private room, and it has a bed in there for me!! I am spending the night tonight to work on breastfeeding with him (not that he has a problem with this!! Just trying to see how he does for 24 hours of breastfeeding). As exhausted as I am, I am looking forward to this sleepless, restless night!! I can't believe I'm getting to spend the night with my little man!!!
As anxious as I am to have him home, I have come to the realization that he's in the NICU for as long as he needs to be. As much as I long for a "going home" date, I have to practice patience and wait...and wait...and wait.
Yesterday and today I came up later in the day and it was nice having a slow morning at home. Graham is handling this all so well! But he is so confused. He doesn't understand why Mommy is gone a lot; why he stays at school a little later because Daddy is visiting Miles; why he can't go see Miles whenever he wants, etc. I know it must be hard on him.
I've rambled long enough and my dinner is getting cold! There is no internet at the hospital (real up to date, huh?) so I'm sitting at McAlisters :) !
Thanks again for all of the prayers! Keep them coming!
Praying for Strength,
Jeff, Lauren, Graham & Miles
Sorry for no pictures tonight - I left the camera cord at home...

Guess who's graduating out of his isolette?

Miles continues to do well! He was having an increased number of bradycardic episodes and his oxygen sats were dipping to 89%, so they have given him his oxygen back. He's only on 25%, and you & I breathe 21%.....the little stinker just wants that extra little sniff!! I guess I can't blame him - he's still supposed to be cooking for another 6 weeks. He's accomplished a lot in the last 2 weeks!

He is on his way out of the isolette! Since the outside temp has dropped in the last couple of days, they are taking it slow. We moved his isolette away from the window yesterday because it was downright cold right there!! Mom and I were freezing so I can imagine what the little guy was having to do to keep his temp up! But by the time we get there today, Miles should be in his big boy bed!!
I'm going to be able to stay at the hospital on Thursday night to work on feeds. I'm really looking forward to that! Since Miles still has alarms going off, they won't allow him to come to my room, but I'm sure that sleepless night will be bliss!! :)

Miles had an episode of apnea on Monday night, which means we will be there for at least another week. We have to go 7 days without an episode before discharge (we also need to get off of oxygen, continue to gain weight, not poop out during feeds). So please pray that we will not have anymore episodes!! This was his first one, and he resolved it on his own, but it still happened!

Graham is ready for Miles to be home, too! Last night, Mom brought me to the church to get Jeff & Graham (someone locked their keys in the car for the second time in 2 weeks....) so that we could go rescue Jeff's car keys and car from the Mortgage Company parking lot. When Mom dropped us off and we got settled into Jeff's car, Graham says "Hopipal. Miles." He wanted to go see Miles!! MELT MY HEART! He was so upset when we said that we were going home. For a split second I thought about loading Graham up and heading back the hospital ... but then I came back to reality and realized there was no way that I was going to handle both boys, by myself, in the NICU ... not to mention I was exhausted!!

Thanks for keeping up!! We feel the prayers!!
Anxiously awaiting a discharge date....

Jeff, Lauren, Graham & Miles

PS - We should be closing on our house at the end of next week!!!! :) I wonder which house Miles will come home too...

2 weeks old

Once again, I apologize!! Between trying to fit in pumping every 3 hours, eating, sleeping, quality time with Graham & Jeff and being at the hospital for 6+ hours a day, blogging has taken the backseat.

Since I last updated, Miles has taken his first car (ambulance) ride, come on and off of Oxygen a couple of times, managed to pull out several feeding tubes, is breastfeeding like a champ, has been fed a bottle by his big brother, and has become much more alert!

Last Tuesday, we were transferred to North Florida's Level II NICU. Miles no longer needed to be in the Level III NICU at Shands, and the docs felt like we would have a more pleasant experience at North Florida. It is a smaller, more intimate, family friendly setting -- 6 babies as opposed to 54! I'll take that!! So far, we have loved our nurses. One small run-in but that was cleared up with some orders!

Overall, Miles is doing FANTASTIC! Who would have thought that he would be breastfeeding as well as he is. I'm trying to be there for at least 3 of his feeds a day. It's not as easy this go-round...having a 2 year old throws a whole new dimension into the mix! Not to mention the hospital is 50 min. away from home. As of now, he is still pooping out with some of his feeds, so they are having to use his feeding tube 2 out of the 8 feeds a day - not too bad (although we wish we didn't have to use it at all!). He is also using Oxygen with some of his feeds. Not all of them, but he tells us when he needs it!! So we aren't tube free anymore, but we're heading back in that direction - and that's progress!

On Saturday, Graham came up to see Miles. I love seeing my boys together!! :) It truly melts my heart! I can't wait to have Miles home with us so that we can fully adjust to being a family of four. As much as I want to have Miles at home, I know that he is where he needs to be right now. He's still experiencing some drops in his heart rate and his oxygen sats; fortunately they resolve themselves, but he is still little! I know that he will come home when he is ready, but the mom in me still wants to rush him home so I can love on him whenever I want!!

Back to the boys being together.....I had just finished feeding Miles and he was needing to be supplemented. So I asked Graham if he would like to help Jeff feed Miles, and he replied "OK!". So I hand the bottle to Graham (not sure what I was thinking!) and he attempts to put it in Miles' mouth, only Miles won't open up. So Graham then puts the nipple in HIS mouth and quickly pulls it out, frantically begins wiping his tongue and saying "AHHH. YUCKY".....it was a bottle with formula in it! I'm hoping Graham learned his lesson! I then started over with a new bottle and put it in Miles' mouth. Graham grabbed a hold of the bottle and took Jeff's hand off of the bottle saying "No thank you". Mr. Independent wanted to do it himself! And he was mighty good if I say so myself! :)

On Sunday, Pops took a little break from class in Jax to come spend some quality time loving on Miles and visiting with me! We had a great time together, even though it was short! One things for sure.....Miles will never be without someone to hold him and love on him!

Today, mom & I visited Miles for a while. Mom got to love on him....and it's amazing how he just fits in the crook of her neck! I have a feeling he will fall in love with that spot a lot over his lifetime! The NP today wrote orders to start weaning Miles out of the isolette into a big boy bed!! We are going to take it slow so that we don't end up back in the box, but nurse Karen seems to think we'll be in our big boy bed tomorrow!! WHOO HOOO!! :) :) :)

Thanks again for all of the love and prayers!! We feel them and see them at work in Sweet Little Miles!

Love,

Jeff, Lauren, Graham, and Miles