Slow and Steady

Slow and Steady...that is the mantra I keep repeating over and over in my head.  You see, I had an it in my mind that the boys would start coming home at a certain time (like next week) based on what the doctor had told us, and now it is clear that is not going to happen.  I just can't even describe the unsettled feeling I have, and don't think it will go away until Brennen, Graham and Liam are all home (and we have the cribs set up and a mini van purchased).  

Things have not changed much over the past weeks, just VERY SLOW.  Brennen is still on CPAP and it breaks my heart every day to see him to miserable. It's kind of a chore to get him out to hold him, but it's well worth it when he settles in falls fast asleep on my chest. The doc is hoping to try him off next week, so I am praying he will do well and be able to breathe with the help of the nasal cannula.  Graham is breathing on his own, and it sounds very simple to say all he has to do is learn how to eat and he can come home.  BUT, the little guy is very laid back and likes to sleep a lot rather than wake up to eat!  I think he has it figured out that if he doesn't take a bottle, he'll still get his fill delivered right to his tummy!  Liam is on nasal cannula, and seems to be the most alert and curious of the three, but his breathing is not slow enough to try to give him a bottle, so for now, he's just hanging out looking around with his wide inquisitive eyes!  

I would prefer not to be a regular at the children's hospital, but for now, that is our life.

Lil' Brennen, taking a peek

Cute smile from Graham

Liam taking a rest

Big sister Addie at the zoo

  

Waiting....

Brennen, Graham and Liam have been in the hospital for 48 days.  I met a mother in the elevator lobby this afternoon whose son was just discharged and he had been there for 115 days.  She was absolutely glowing and practically racing out of the hospital!  I cannot wait to have that feeling myself and am hoping the day(s) are quickly approaching.

We are definitely playing the waiting game at this point.  The boys are all stable and making forward progress most days, but there are still days that they take a step or two backwards and those are the hard days.  Things can change in a matter of hours, we can leave in the evening with everyone doing well, and come back the next morning to news that one, two or all of them had a rough night and and a set back.  I just keep telling myself that the end is near and this whole experience will be just a blip on the radar a year or two from now!


Brennen is getting stronger every day.  Although he only weights 4lbs. 3oz. he is a little spit fire and gives the nurses a hard time.  I think the CPAP is making him cranky (can't blame him).  Hoping he can come off of it in the next week or so.  I think he'll be a much more pleasant baby when that happens! 

Graham is breathing fairly well on his own without any support and now we are just waiting for him to breath steady enough to try bottle or breast feeding.  I have found that this is easier said than done, as we have only been able to attempt it once in the past few weeks.  The doctors think the VSD (hole in his heart) could be contributing to this, so the cardiologist is going to take a look and let us know if this is the case and needs to be treated.  In my mind, I had Graham coming home as early as two weeks, but it could be longer (and my heart sinks at the thought).


Liam is on high flow nasal cannula, which is a step down from regular nasal cannula.  We're hoping this is only a temporary change and he'll be able to go back on regular cannula.  We can't attempt to bottle or breast feed him while he is on the high flow.  The good news is his breathing is pretty steady and he seems very interested in breast feeding!

The highlight of the week was holding all three of them at the same time.  It was amazing to see how they settled in so well with each other.  They like to reach around and find each other, grabbing on to arms, legs and faces as they find them.  Graham was not bothered one bit when Liam ended up laying on him.  Payback from when they were in the womb!

We also won the March of Dimes Kangaroo-a-thon and got a snazzy little gift basket!  The contest ran for two weeks and every time we held the boys skin-to-skin, we were entered into a drawing.  We did A LOT of baby holding and it was amazing!  I only feel slightly bad that we had three times the chances as everyone else!

Also looking on the bright side, we are not quite ready for the boys to come home.  The cribs are not set up and we don't have a mini van yet!  Anyone willing to pitch in and help putting together 3 cribs and a dresser is welcome to come over any time!  

Graham and Brennen

Graham, Liam and Brennen- The TRIFECTA!

 

The First Month

It's hard to believe it's been a month since the boys were born.  Some days it feels like time is flying by, but others it seems to stand still.  The past few days have been really good for all the boys, as they have all made some big steps. 

Cuddling up with Graham and Brennen

Yesterday was a pretty exciting one month birthday.  I was able to hold Graham and Brennen at the same time!  It was so amazing to hold them both and watch as they settled in next to each other at long last.  I swear they starting doing the same motions with their hands, and even the stats on their monitors were very close...I'm sure they missed each other. 

Today was also a very special day, as we were able to get them all together for their one month pictures!  It brought me to tears to see them all snuggled up next to each other!  Poor Brennen wasn't able to interact much because of his cpap, but Graham and Liam ending up quite close and comfy with each other!  We also brought Addie down to see them and were able to get our first family photo!  

First Family Photo

Addie is still partial to Graham but has decided that it's best if he doesn't sleep in her room with her!  She also says that all the boys are her buddies now and she can't wait to hold them.  Brandon took her to the wishing fountain in the hospital today and she dropped in three pennies.  Brandon asked her why she put in three pennies and she said because she has three brothers.   

Graham has been off cpap for a couple of days and is tolerating it well and is not requiring any extra oxygen.  He hit 5lbs. tonight and the next step is to try bottle feedings with him.

Graham

Liam was taken off of cpap today and was given a nasal cannula to give him a little bit of support.  He's only been off since this morning, but seems to be doing well so far.  It's amazing what a difference it makes to their moods to have the cpap out of their noses.  It's like they are different, happy little guys...can't say I blame them!  

Liam

After a rough couple of weeks, Brennen appears to be on the upswing.  The infection took quite a toll on his body, and they are still keeping a close eye on him to ensure he is stable and there are no lasting effects.  He is back on cpap now, down from this machine called IPPV that gives him an extra burst of air between his breathes to help keep his lungs inflated.  He is doing well on the cpap, so we're hoping he keeps moving forward from here.

Brennen (with CPAP briefly off)

We had a meeting with the neonatologist Dr. Doctor (yes, that's his real name) today and he was pleased with all of their progress and said that Graham and Liam are exceeding expectations. Brennen has a lot of catching up to do, but he's still doing well considering everything he has been through.  The doctor can never tell us for sure when they will get to come home, but he expects Graham and Liam to be home a few weeks ahead of their original due date of June 21.  He thinks that if Brennen keeps improving at a steady pace, he'll be home before then too.  

Brennen, Graham and Liam

I can't tell you how happy I feel after the past couple of days.  I admit, I was at my breaking point on Monday morning and had a little melt down when I got to the hospital.  I am thankful for the nurses that are following the boys.  Not only are they there taking care of them, but they have also been a great source of support for me.  One nurse, Kathy, said something that is so true, "We ask how people are doing and the standard response is 'fine', but it doesn't have to be fine."  I am happy to report that today I am fine, but I reserve the right to feel less than fine at any point in the future! 

Proud Sister!

 

Save My Sanity

I have the funniest little girl!  Her love and humor definitely helped me get through the week.  She gave me a lot of laughs when I really needed it.  Highlights included her singing a song of words that rhymed with "Stitch".  I really couldn't help myself when she landed on a choice word that started with a "B".  Luckily, she had no clue what she was saying.  I felt a little guilty for laughing, but like I said, I needed a laugh!  Last night she made me go crazy by thinking I had misplaced the dvd remote.  I was frantically looking for it for a few minutes before I went back into the living room (for the third time), and noticed her sitting coyly on the couch.  I said, "Addie, do you have the remote?" to which she burst out laughing.  Of course I couldn't help laughing too. 

Addie also has a little connection with Graham.  We think it's because he is not closed up anymore, and therefore more accessible. We were talking last night about how excited we are for the boys to be home.  Addie is most excited about holding Graham first because he is her "buddy" and because he is "open". 

Brandon also helped save my sanity by doing the dishes when I just couldn't take it any more, folding me laundry (he is a MUCH better folder than me), and thankfully, taking a 1/2 day yesterday to be there when I was at my breaking point.  There is a fine balance to be had between being at the hospital with the boys and being home with Addie.  I feel we are doing a pretty good job at this, but with Brennen having a rough time this week, I could not help wanting to be there as much as possible.

Thankfully, Brennen seems to be improving a little every day.  The doctors could not find any particular reason for his regression, other than the infection taking a toll on his body, combined with prematurity.  He is still on IPPV respiratory support, which is one step above CPAP, but he is doing well at this level and has avoided having to be re-intubated.  I FINALLY got to hold him again today after not being able to do so since last Tuesday.  It was exactly what I needed, and I think he enjoyed it as much as I did; settling down the instant I put him on my chest.


Graham and Liam continue to do well.  They are both big eaters and gaining weight like champs.  They still both struggle with alarms after their feedings (something about the full bellies makes it harder to breathe), but we are told this is normal for preemies as well.  


I have a hard time keeping track and remembering all their stats (writing it down might help), but as of last night Brennen was 3lbs.12oz., Graham was 4lbs 10oz. and Liam was 4lbs! 


We are approaching the one month mark in a few days.  I would like to say that time has flown by, and at times it has, but other times it seems like an eternity.  All in all I think the boys have made great progress and I'm excited to see what the next month brings.  With any luck we'll have them home!

Now let's play a little game we call "Name that baby"  Admittedly, if we don't label the pictures we take immediately after we take them, it's hard to tell the little guys apart already, especially when they have their cpaps off.  Answers below.

1.

2.

3.

  



1. Liam; 2. Brennen; 3. Graham