Milk

As part of this whole NICU experience, I have been having a lot of dates with my breast pump.

I feel as though I have spent a ridiculous portion of the last 7 weeks with machinery attached to my breasts, pumping milk for my boys. I don`t mind, because I know it is one of the best things I can do for them, and really, it`s one of the ONLY things I can do for them while they are in the hospital.

Proof that I have been spending alot of time doing this, is Rylen`s knowledge of pumping. He could be a lactation consultant by now.

The other day, I stepped out of the room to grab some milk containers and came back to see this:

The pump was turned on and everything. I asked him what he was doing, and he very seriously replied ``pumping milk for my brothers!``

If only this was possible! :-)

Truthfully, I am getting a bit tired of the pumping, and look forward to the day that I can just breastfeed the boys. My mom is also looking forward to the day that she can resume putting food in her deep freeze (which is currently jam packed with milk).

P.S. Thank you to everyone who have made milk runs back to Brandon and are storing milk for me!

Date Night

Hot date in the NICU!

It is a treat when Mark and I get to be at the hospital at the same time. We see so little of each other lately. Garrett and Rhys' beds are pretty close together, and if we stretch their monitor wires to the max, we can just manage to sit next to each other and have a chat while feeding or cuddling the boys.

I have a feeling this is as exciting as our date nights are going to get for quite some time. But that's okay. I will be so happy to be home with everyone together that it really won't matter.

Update January 20

Another update:

Rhys has unfortunately caught another infection. I knew I shouldn't have advertised how great he was doing. Seems every time we celebrate good news, something else happens to set him back. Next time he does well I'm keeping it to myself! He'll be discharged home and you will all still think he's in the hospital because I'll be afraid to jinx it all by sharing!

The infection is another UTI and was caught early, which means he isn't nearly as sick as he was last time. It started off that he was having some feeding intolerance, throwing up, etc. There was some concern that his tummy troubles were acting up again, but the discovery of the UTI may explain why he was throwing up his feeds. When a baby gets sick, feeding intolerance is often the first clue, and especially for Rhys, because his tummy is a weak spot for him anyways.  We are hoping that once the UTI clears up, he will be back to tolerating his feeds again (this is what happened last time he had the UTI, and once it cleared he was able to eat again).

The big concern is how long we will need IV antibiotics for. We are hoping not long and that maybe he can take the medications orally. On Sunday he got his central line out, so we are back to peripheral IV access for him which isn't easy for Rhys. His veins are small, weak and have been poked so many times already. Needing another central line would likely mean surgery and we do not want to go that route! So keep your fingers crossed that he can cruise through this without needing another line.

Garrett is doing well. His only issue is that he can't stay awake long enough to eat a full feed by bottle or breast. So, he needs to be topped up by a tube into his tummy. Obviously he can't go home with a feeding tube, so he needs to get some more energy and finish his feeds on his own. He is improving though and is gaining weight like crazy. Last time I checked he was 6 lbs 6 oz and that was a few days ago, so he is likely more. He has come a long way from his tiny 3 lb 13 oz birth weight!

So, that's the latest on my boys.

Thanks so much for thinking of them and wishing them well. They are so lucky to have so many people that love them.

Update January 14

Well, in an interesting turn of events, it seems that our little fighter Rhys has decided to compete with his big brother in the "Who Goes Home First?" contest!!!

Yes, that's right, the little man has taken some huge leaps in the right direction!

He has slowly been working on his feeds. All the doctors and nurses have been very cautious, trying to avoid any further tummy troubles. After a bout of necrotizing enterocolitis, there are a variety of complications that can arise, and they were worried Rhys was suffering from one or more of them. So, his feeds were started at 1 millilitre an hour of breast milk pumped into his belly by a tube. Very slowly, they increased the amount. A few days ago, he finally reached his "full feed" which is the full amount that he needs to take to thrive! Once he got to that point, they started feeding him over a smaller length of time...so instead of the pump running continuously, they ran it for two hours on, one hour off. Then one hour on, two hours off. Finally last night, he was allowed to try "bolus" feeding. Which basically means, he would take his full amount (49 millilitres) in a short amount of time. The feeds would still be given by tube, but the full amount would be all at once, similar to what a baby would naturally do on their own. The doctor said he could try to breastfeed or bottle feed, but the prediction was that he would not have enough energy to do so (he has never taken a bottle or breastfed before)

Well, Mr. Rhys is full of surprises, and he did AWESOME! He took over half to three quarters of his feed by bottle and the rest by tube. Which everyone thought was pretty amazing.

And then this morning, he decided he had enough of the tube business, and decided to start taking his full amount strictly by bottle!!!! Everyone was very impressed!

And THEN, even better, when I got there in the morning today, he breastfed and took MORE than his full amount by breast (56 mls!), plus an additional amount by bottle. He's a genius!!!!

Just to put it in perspective, Garrett has never been able to accomplish this, and he hasn't had the health issues that Rhys has. So, despite all of his illness and complications that he endured, in the feeding department, Rhys is actually further ahead than Garrett!

He still has some issues that need to be addressed, but it is a HUGE step in the right direction! He has quite a bit of catching up to do as far as his weight gain and growth, and there is a concern that he may not be absorbing his nutrients as well as he should be, so that will have to be monitored for a bit. Also, he still has his central line in, but it isn't really being used anymore so they are going to likely remove it tomorrow!

Everyone kept telling us that babies can "turn a corner" really fast and all of a sudden just take off in the right direction! As far as Rhys was concerned, we didn't believe it.  It just seemed like it was one thing after another with him. But now we are starting to believe it! We are so proud of that little guy.

The nurses are now taking bets on which brother they think will go home first. Wouldn't that be something if it was Rhys after all he has been through?

Garrett is pretty close too. He is doing very well with his weight gain (he is over 6 lbs now!), but he is a bit pokey with his feeds. He can't seem to consistently take his full feeds without being topped up by the tube. I think he may have just been waiting for Rhys to get better so that he wouldn't have to leave him there alone. They say that multiples have a special connection with each other right?

Anyways, we couldn't be happier with this turn of events. We are still a bit apprehensive, hoping that this is for real and that Rhys if finally out of the woods. But this has given us so much hope that he is on the right track!

Here are some recent pictures of the boys....

Garrett

Rhys

Having a cuddle together!

Garrett in the world's cutest bear bum pants. Thanks Auntie Mandy and Uncle Robert! (Rhys has a matching pair but he can't wear them yet because of his central line)

Rylen holding Rhys for the first time

Another cuddle. Rhys on the left, Garrett on the right. Garrett used to be alot smaller, but Rhys has some catching up to do now!

Rhys and his BFF the soother. He was not allowed to eat for so long that he got addicted to this thing. I've never seen a kid suck so hard on a soother before.

Christmas 2011

Finally have a few moments to post some things...such as Christmas! I know it is long gone, but I reminded myself today that one of the reasons I am doing this blog, is for a "journal" for myself. One day I will want to look back and remember all the details...such as the boys' first Christmas!

It wasn't a great one. As I've stated before, Rhys was super sick and that sort of took the "Merry" out of the whole holiday. But, I was determined to do "proper" Christmas for Rylen's sake, especially since this is the first year where he sort of "got it". As in, he knew that there was this guy Santa that would bring him a present.

I know, I know....this isn't the true meaning of Christmas. But, when you are 2, it's really hard to focus on much else. Presents trump everything else. One day I will make sure he knows what the holiday is really about, but for now it's all about Santa.

We actually did the whole Christmas thing a day early because my dad and brother worked Christmas Day. That's the benefit of your kid not being able to read a calendar...you can make holidays whenever you want them to be! On the 23rd, I promised Rylen that we would make cookies to leave out for Santa. Unfortunately, that's the day Rhys got very sick. His nurse literally had to kick me out of the hospital and make me go home to Rylen, reminding me that I promised him we'd bake cookies. That was the first (but not last, I'm sure) time I have felt completely torn between my children. But, Rylen was at home super excited waiting to bake (one of his favourite activities), so off I went.

So, we baked.....

And made a mess....

And wrote Santa a letter. And laid out cookies and milk. I have no idea why Santa needed two mugs of milk, but according to Rylen it was of utmost importance.

The next morning, lo and behold, Santa had arrived! Rylen was pretty excited. He got a Mack truck that he decided to ask Santa for at the last minute (thus making "Santa" run out to Walmart despite the fact that Christmas shopping had been completed long ago...oh the things "Santa" does to compensate for creating utter turmoil in their child's life by having babies)

Later that night, Mark and I were at the hospital with Rhys and Garrett. Earlier in the day Mark had purchased little stockings for the boys and we hung them by their beds. I also read them both "Twas The Night Before Christmas" before leaving. It was very important to me that I make their first Christmas a little bit "normal".

Garrett`s bedside

Rhys, so sick. His Christmas onesie is there waiting for him, but he had too many tubes to actually wear it.

Rhys` stocking and ornament

Reading to Garrett

This was the night that we received the awesome Christmas bags from the NICU staff with the pictures in them. So awesome. Like I said, we really needed a "pick me up" and they sure came through!

 Christmas Day, we all came to visit. And got another Giroux family photo! This one wasn`t as great. Garrett could not be close to Rhys due to his illness, and you can clearly see in the picture that Rhys is white as as ghost...not well at all. But still, we got it done, and the important thing is we were all together for a few minutes at Christmas time. That was the best present ever. :-)

Update January 5

Alot has happened since my last update!

On Dec 29, Rhys developed a blood clot in his leg as a complication from his central line. It was quite serious initially. I was there with him when it was "discovered". Basically we turned him over to change his diaper and saw that his previously normal looking leg had ballooned in size and was purple. Like, literally purple. It was shocking. I remember thinking "OMG, his leg is going to fall off."  and then thinking "it's okay...he doesn't need two legs, he just needs to live". Because at that point he was still pretty sick from his infection and was requiring blood transfusions to keep his platelet levels up. The antibiotics hadn't fully kicked in yet and they were really worried about why his platelet levels kept dropping. I couldn't believe that he was having yet another health problem to deal with. The poor kid has been through so much already.

Anyways, the whole purple leg thing really freaked everyone out. But after a little while the colour got a little more pink and it was determined that they would just monitor it for any changes.

At 2am on December 30, I got The Dreaded Phone Call. You know the one. The phone rings and you just know that the person on the other end isn't calling to tell you some good news. 2am phone calls are always bad. Sure enough, it was the doctor telling me that Rhys' leg situation was nagging her so badly that she couldn't sleep. So she called the radiologist up in the night to do an ultrasound and they determined he had a large clot in his leg as well as in the central line. They thought the best thing would be for Rhys to be transferred to HSC Children's Hospital where the pediatric surgeon would likely pull his central line and take him to the OR to do a jugular line. They also needed to treat Rhys with a clot-busting medication to ensure that the clot would disappear and not travel elsewhere in his body. The side effect of this drug is bleeding, and with Rhys' platelets being so low it was a risk. So, he needed another transfusion to get his platelet levels up before they gave him the medication.  After all this information, the doctor told me she was sorry for waking me up and to try and get some rest. HA! I know she was just being nice, but that was hilarious. Who can rest when your kid is in such rough shape???

At 8 am I arrived at the hospital and accompanied Rhys on his first field trip outside! He got packed up in an isolette and off we went for a ride in a Medi Van (disappointing, I was hoping he would get his first real ambulance ride!) to HSC. He loved the trip over, eyes wide open and looking around the whole time. He's such a curious little boy :-)

Once we were there, he had another ultrasound and assessment of his leg (which was actually improving quite rapidly) and the surgeon who put in the central line came to see us. At this point I began to relax...the slow pace at which everyone was moving made me realize that his leg was likely not going to fall off anytime soon.

In the end, it was decided that the risk of removing the line and having an operation to put in a jugular line, was too great. It was better to leave in his current central line, and since the ultrasound showed that the clot had resolved and his leg was improving, this was the best decision for Rhys. However, the surgeon wanted to keep him at HSC for a few days just to make sure.

Thus began a period of time which I will refer to as "Holy Crap Stress Overload" or "Please Someone Cut Me Into Three" or "Postpartum Mama With Three Kids In Three Places CANNOT HANDLE THIS!".  Many meltdowns occurred. Likely a psych consult was written up by one or more nurses. Up until that point I felt I was handling things pretty well. But the two babies at two different facilities thing really put me over the top. Coping skills went out the window. I felt like I couldn't give any of my kids enough time/attention and that my level of involvement with Garrett and Rhys was diminished. I felt like a visitor coming to "look" at my babies rather than be a mommy to them.

Thankfully, after expressing my dislike of the situation to ANYONE who was willing to listen (or not willing to listen but had no choice, such as strangers in the elevator) all the doctors agreed that Rhys could be transferred back to St. B to be with Garrett.  The clot had resolved, his leg was looking better and they were definitely not going to put the jugular line in.

So, happy day! On January 4 Rhys came back and is now happily parked beside Garrett. This makes mommy very happy :-) As soon as he arrived back, I could feel the stress melt away. And, his leg is looking even better. It is the same colour as the other one and the swelling has gone down. He is starting to get fed again because his infection is finally resolved. He is back to being his feisty little self (his special talent is unbundling

Garrett is also doing very well. He is getting so chubby and really getting great at breast and bottle feeding. They predict he may be able to be discharged in the next week or so!

Today was a great day. It was the first day since the 29th that I had both babies in the same place all day long. I got to go back and forth between them all day, cuddling Rhys and feeding Garrett. They are both so sweet and snugly. I just can't wait to get them home.

Thanks to everyone for thinking of us and praying for Rhys. He will definitely grow up knowing that so many people cheered him on in his early days and wished him well.

Update December 28

Just thought I'd post this update about Rhys. Alot of people already know that he has been through a lot in his little life thus far. But, that kid is one tough cookie!

His latest battle is a urinary tract infection that he became ill with right before Christmas. It has taken awhile for the antibiotics to kick in, but he is finally starting to show signs of improvement. However, he still has some pretty major tummy issues which may be another infection, or may be complications from when he was sick the first time (in early December) with necrotizing enterocolitis.

Due to all this, he has required two blood transfusions over the past two days. This was complicated because it was very difficult to get and maintain IV access on him. Poor guy has had more IVs in the past week than you can imagine. His veins are weak and small and all the medication is very irritating, so the IVs do not last very long. He has had a few IVs done in his scalp which has resulted in the need to shave little bits of hair from his head. Well, the poor guy is starting to resemble Caillou at this point. He basically has no hair left on the top and either side of his head. The back has been left untouched, causing him to look as though he has a very severe baby mullet.  I had to run to the gift shop to buy him a cute hat because I think he was feeling self conscious!

Last night, the surgeon came to give him a central line. This is basically a catheter that travels through his veins straight to his heart. Central lines are more permanent than regular IVs are. This is the second time he has had a central line so it's old news for tough guy Rhys. He took the procedure like a champ as he does with most of the things that are done to him. His only complaint is that he is damn hungry and nobody is feeding him!!!! (He has to keep an empty digestive system until they can figure out what his problem is).

The complaining about being hungry is actually very good news. Over Christmas, he was basically acting like a limp noodle. He didn`t care about anything and very rarely cried or put a fuss up, even when he was being poked with needles. He has definitely become a lot more like his old feisty self over the past day or so. This is good news. It is puzzling though, because all his lab work and tests show that he is indeed a very sick boy, but yet, he is acting so much better.

We are hoping that the blood transfusions do the trick and he makes a full recovery. He has a lot of catching up to do to get to where his big brother is! Garrett is doing very well. He is starting to act more like a term baby, waking up to eat on his own, and learning to breastfeed! He is 4 lbs 12.5 ounces already!

Thank you to everyone who continues to think of our boys and send us their well wishes and prayers. It is so comforting to know that Garrett and Rhys have so many people that are rooting for them!!!