Loose Ends...
          Well the weekend was a little hectic. I had a hard time staying focused at work. I couldn't keep my mind off my little peanut. (I have already promised Bricen I will cut the pet nicknames out once he gets older. haha) And of course on Sunday night I was late getting out. Go figure, 14hrs and 45 minutes from the time I left my house I walked back into it. Guess that's nursing for you.
          As of Friday, Feb 24 Bricen is officially a thumb sucker. I heard him smacking and I looked down and he had that little thumb in his mouth. I want to discourage him but at the same time he gets gagged so easily on the pacifier I almost feel bad. He also started doing some of what I call baby babble. He had made a few coos here and there but Friday he was telling me how he really feels about things! I was very relieved because I had started to worry about him talking and his speech development with the laryngomalacia. I feel like God made that happen to help calm my worries. Here are a few pictures to tie up the loose ends from last week.

 Bricen loves bubbly bubbly time. He has never had a bath time and cried during the actual bath. He will be one happy baby when his belly is ready for bath time again. He is a kicker and does this non stop outside the bath. Last week for the first time he started kicking and splashing in the bathtub as well.

Love, love, love this face.  

I do think Scruffy will be the gentle one that lets Bricen do whatever he wants to him once Bricen gets older. (Scruffy is in need of a trim. He is livin' up to his name right now. Marty calls it his "Hippie" look when he gets to this point.)

I ran across the picture a couple weeks ago. I look back at it and laugh now. This is one of the first few nights home from NICU. Our family was wanting to stop by and I sent this picture of the destroyed living room as proof that we just weren't up for visitors. I especially love that Marty's tall and lanky butt is on the love seat and Bricen's doll size body has the big couch all to himself. :0) Hey, he fell asleep there and we were not moving him. Then I can see the yellow bar that really goes across an activity playmat that we used to put on the bassinet in the beginning to string the 60ml syringes with for bolus feedings. You can see it somehow rigged up so I could feed Bricen right where he was without moving him. It didn't take long for Marty and I to learn that we could not both take the night shift. It was one or the other. I will say we have come a long way. Haha.  

         

Awesome Day!
          We had a great day Thursday (yesterday) with great news that I'll get to but let's start with the end of last week. We saw Speech Therapy on Friday of last week. She always seems to make me feel better about things. She gave me suggestions that would hopefully help with the gagging. She seemed to think it was more my technique that was causing the gagging than anything else. We were feeding in a bouncer seat and putting the dropper in at an angle. We now have the chair that she suggested we feed in and Bricen looks like such a big boy when he sits in it!

He has also found his ear. 

Thanks for the bib, Ali and Jenny! (All the way from Hawaii.)

          Of course, he did not gag when we did this with her and has gagged during a few attempts at home. It's usually towards the end. Perhaps he is getting tired and "lazy" in his swallows and they are going down the wrong way? Who knows? I suppose I'll call and update her and get her input. We also started to use a spoon. It's not like giving a typical bite of food to a kid. We simply put the spoon up to his mouth sideways, touching the roof of his mouth and let him work his mouth and tongue to get the food. He wears more than he gets down but the practice is good. We are suppose to be doing this twice a day.
          I asked the dreaded question. I know she doesn't have a crystal ball but had to ask anyway. How long does she think it's going to take for Bricen to have this eating thing down? Her response was that she didn't think he'd go to Kindergarten with a G tube (bit sarcastic), and most kids it's max 2 yrs. His could be all "fixed" way sooner than that. But she gave us hope by talking about starting him on baby foods and sippy cups sooner than other babies and by saying he would be eating just not drinking as soon as we like. My big fear is that he will be old enough to want a bite of what we are eating and have to be told no or what if he is outside in the summer and hot and wants a drink. What will he have to drink? Thickened juice? Gross. lol And how refreshing is that? (sigh) One day at a time. And what if things don't get better? Does that mean surgery to fix his chin? Is that something they'd do? And how long do we go before we start talking that way? Before we left NICU, when the surgeon consulted and said Bricen did not need surgery he said then that the he felt like the small chin was not causing the eating problems. (bigger sigh) One day at a time.

         

 This kid cracks me up sometime! I walked to the back of the house and when I came back this is what I found.

          And this was his face once I moved the hood. Hahaha.

 "If Daddy says no, ask Grandpa."

 Well, I think he's got his "Rita look" down. Pretty sure he was mad at me for changing out his tube.

          Poor guy does this all. the. time. It's become a constant battle. Three more days and he will get his G tube!

          Bricen has slept a lot for about the last twelve hours. He did this a couple times in the past. People tell me that this is the normal baby sleeping pattern and that his not sleeping is the abnormal so I should not worry. Last time I schedule a Dr appointment and was doing almost a complete head to toe assessment every couple hours and checking his vitals. Hahaha I can't help but worry that he's getting sick, especially with his surgery coming up. Time will tell I guess.

          This week we've just been working on getting things cleaned and organized and ready for Monday's surgery and hospital stay. In a perfect world I'll have everything done today before I go to bed and work Saturday and Sunday, including mine and Bricen's bags packed. Marty and I are both pretty exhausted come Mondays and it's going to be rough going right into a surgery Monday and sleeping at the hospital Monday night. Prayers are appreciated. I'm sure we will make it through. :0)

          And we will end on a good note. God has answered prayers and we are so thankful! They called yesterday (Thursday) with Bricen's sleep study results from last week. THEY WERE BETTER!!!! He is not "normal" but they were definitely better!! I couldn't help it. I started crying when the nurse told me. My emotions pretty much have a "mind of their own" lately. AND...AND when I asked when the next sleep study was the nurse said they were just going to schedule the follow-up appointment in April and then go from there.

          I think I've mentioned AHI (apnea hypopnea index) numbers in the past. While they do not go by this completely, they play a big role in the results. They were soo much better. (I'm going to go into detail here more for my records.) He still had up to 9 obstructive events in each position so we still have to wear the monitor at all times except when bathing but that's ok. We will take what we can get. Supine (back) he had 6 obstructive events, and his AHI was 5 (it was 8 in January). Side lying he had no events and his AHI was zero!!! (It was 34.3 last time and comparable to that in Dec as well!!) On his belly he had 9 obstructive events and his AHI was zero!! (It was 21.3 last time.) In the car seat he had 8 events and his AHI was 3. (It was 31.1 last time!!) These are big differences. And these numbers are even better than his very first study done while in NICU. AND...we got the okay to use the upright car seat. We were using it anyways even though they didn't suggest it but now we can use it and not have to be "breaking the rules". Anyone who knows me knows that it stresses me out to not follow the rules. lol

          To sum things up, we are thankful yet prayerful. We are thankful for those results and praying for next weeks surgery. Now I better get a nap before Bricen decides he might miss something and wakes up.

         

February Sleep Study and End of Week
          Well, I prayed and prayed for Bricen to sleep and for the most part he did. Thank God. He still screamed bloody murder in the beginning as he was getting hooked up to everything and had his short bouts of screaming but overall he did really well. He was a little high maintenance (shocker). At one point I was holding one hand and the pacifier in his mouth and Aunt Bri was letting him hold her finger on the other side so he couldn't get to all the wires on his head. He also had no spit ups the entire time! Yay! The arches of my feet are currently having random sharp shooting pains through them from standing at the beside for five hours in flats, but I'd do it all over again.

          This time we took his lamb and peanut to help get him thru. I couldn't help but take some pictures.  

My faith has been restored in Riley. The manager of the sleep study lab did our sleep study. We were very pleased this time. The Pulmonary NP had already talked to her and confirmed that, contrary to what those people told us last time,  no it does not matter which order we do the sleep study (side, back, belly, car seat). I was not surprised to hear this, especially conducting this test on kids. There is just no way you could keep the test that structured. Not one word was said about the rail being down while I stood by it. And we confirmed that he did not have to be asleep for the car seat portion. We had been told two different answers last time. I hope our experience from last time is never repeated.

Daddy does not like the outfit on the left. He says it's too pretty boy. So, we wore it during the day and the colts outfit was on by the time Daddy got home. :0) (Truth be told, he had spit up on the "pretty boy" outfit and had to be changed.) Colts outfit is still a little big but I think it makes it even cuter.

We are scheduled for the G tube February 27th. I have started counting down the days for Bricen. Yesterday morning (Thursday) when I woke up Bricen's whole face was red where he had been trying to stratch it. He actually gets fussy with it now. While I'll be grateful for the G tube I know he will have some recovery and I'm praying it's just the overnight stay that they predict.

Now, I must get a nap because we have day2 of being at Riley at 9am today (Friday). Hopefully it's in and out, a quick visit with the Speech Therapist. Hope everyone has a good weekend. :0)

Valentine's Day

 I was organizing his medical supplies in his closet, talking out loud to him. I glance over and see this. He still loves his lamb. We have affectionately named the lamb his "girlfriend" or just his "friend". Probably the first of many times he will be ignoring his mom to talk to friends or girlfriends.

I think this little (big) girl was wanting a little attention. Scruffy has found a new favorite spot, under Bricen's bassinet. This is cute until I forget he is there and I almost run over him.

 This is not how he started out. I know this looks like a poster that should be hanging in your Dr's office telling you how you should not put your kid to bed (extra blankets, etc). Rest assure, Mom was awake and beside him the whole time. I do think him and Peanut might be starting to resemble each other.

 Marty and I agreed not to get each other anything for Valentine's Day but he sure did have fun picking out this card.

 He is a little bit of a dork but the big card was fun. :0)

 We try to keep Akita from licking Bricen but she does get some drive by licks in every once in a while. I hope as he gets bigger Akita is as gentle with Bricen as Lily and Cuddy are with Ainsley.

Happy Valentine's Day! Who doesn't love love? I sure do love this 9lb 9 ounces of burning love!

Last Week
Last week we had an entire week with no appointments! It was wonderful. We worked hard on the little therapy exercises they gave us to do and just enjoyed being at home. Bricen's head control is getting better, slowly but surely. He actually did a lot better with the reflux last week. His spit ups were normal baby spit up. Again, I have no clue what we are doing different, if anything. Unfortunately the last few days they have been worse. Who knows.
          We've stopped the dropper feedings. It seemed like Bricen was aspirating them as well. We see Speech Therapy again this week. Guess we will see what she has to say. I did put the call in to her last Monday asking her to get the ball rolling with a G tube placement. I feel bad for waiting this long. I can't wait to get this NG out. He still just fusses with it and tries to scratch his tape and pull at that tube. Riley is awesome but, if it's not an emergency, they are typical specialty Dr's that take forever to get things done. I'll have to call back and harass them if we don't hear from them the next few days. :-)
          I've got a cold. I am praying and praying that Bricen doesn't get it. And it's a little frustrating because every time I sneeze or cough it wakes him up. Every once in a while he will get startled, puckers up, make his sad face and then just lets the cry go. It's kind of adorable. :0) I am watching him like a hawk. Listening to his breathing, etc watching for signs of a cold. So far, so good.

        We sent this picture to Daddy at work. We wanted him to have something to remember Mommy's orange hair with.

 Goofiest (did I just make that word up?) smile but oh so cute!

 He has become a little Houdini and gets that tube out quite often now.

 I'm gonna try to lift my head but first I think I'll chew on my arm.

Bricen has started holding his own hands if our hands aren't available. (aww)

He is also reaching for toys and tries real hard to get his thumb in his mouth. He hasn't found it yet and I'm not going to help him. Haha.

 Bricen wears this sleeper every weekend while Mommy is at work. He has two of these and they are Dad's favorite sleeper. He says they are the easiest to get off and on. At least the kid is dressed and clean. :0)

           This week we also have another sleep study (BOOOOO). We all know how I feel about this. I know I said in a previous post that I was just going to pray he sleeps and for good quality testing and blah blah. Well, here we are a few days away and I can't help but ask God for the results to be better. :( I'm only human. Regardless of the results, my God will be there to get us through it. I just hate it for Bricen. Happy (early) Valentine's Day! We will post more pictures later in the week. Bricen has a couple Valentine's Day outfits  he will be sporting and, of course, I will be taking pictures. Love this kid more than I could ever put into words. :0)

          We got to get out of the house Thursday for a Synergist injection (helps keep RSV away) so we wore some clothes that were too big for Bricen not too long ago.  Bricen cried appropriately and in true Jenny Pieper style I couldn't help but chuckle at him as I comforted him. I was not however laughing when he was cranky the next 24hrs. Poor fella.

    

          We worked hard on therapy exercises and activities as well as trying the dropper. Here are some pics of Bricen trying to work on neck control and to be able to breathe but lay on his back enough to get the back of that head flatter. :) :)

 

          It's Saturday evening and I have been home since about 4:30. I had to leave work early to come home and put Bricen's NG back down. He had taken it out and no one else was able to get it in. Part of the problem was that his cheeks are getting some breakdown so I was trying to put the tape in a different spot to help his little cheeks heal. Once I got home and put it down I have been taping this thing over and over all day/night. How are we going to keep him from getting at this now and as he gets older? He will go to town itching that nose on whatever he can rub it on.

          Speech Therapist keeps telling me every time we go that if I think we are ready for a G tube to just give her the word and she'll get the ball rolling. I've never really thought I wanted to put him through it until tonight. I know NGs are meant to be short term. He does not do well with intubation because of his small chin. And I've found the things that we would give adult patients sedation or pain meds for they don't give it to the babies. I. simply. do. not. understand. this. (For example, his bronch). I am afraid we are quickly heading that direction. I'm also afraid my expectations for eating are quickly being rained on because of the way things keep going in the opposite direction. If he has to have a tube, so be it. My sister had one, then replaced with a button and then my mom had a GJ tube. I'm just worried about him actually having the procedure done. Seems like it should be a simple little procedure but nothing is simple with my family and especially not this little pumkin'. Lots to think about.

          Another reason I came home was because his alarm kept going off for high heart rate. Marty said it was in the 260's. It happened about three times. During which he was not mad or upset. Hasn't happened since. Hope that goes away and stays away. Again, lots to think about.