Tuesday, February 26, 2013

Oh the Roller Coaster...

Things have been going so well with Madeline and Mason the past few weeks. I hate to say Jason and I were feeling too confident and relaxed lately, but maybe we were. It's hard when you see them doing so well and acting and looking like newborn healthy babies. You start imagining them home in their own little cribs without all the monitors and oxygen. I went home one day last week to do laundry and work on their nursery. That night I sat in their nursery, in the glider that I will hopefully soon rock them to sleep in, and cried. I just wanted them home with me so bad. I wanted to nurse them, read them a story, and tuck them in to their cute little cribs. Its those moment that you almost forget how fragile they still are. Then one tiny little set back occurs and it snaps you back to reality. These little ones, although they have came so far, are exactly still that. LITTLE. They shouldn't even be here with us for at least another month and a half. Their due date (40 week due date) was April 11th. I have to keep reminding myself this every time I start daydreaming about having them home with me. 

On Sunday night Mason started having a few drops with his oxygen. This is normal for Madeline who does this quite a bit. Mason, however, usually only does this when he is having issues with his reflux and is about to spit up. So late that night the doctors called us to inform us that they were running some tests on Mason because he was having more difficulty breathing than usual and seemed pretty out of it. So of course Jason and I become immediately worried. A phone call an hour or so later in the middle of the night they let us know they did a chest xray which appeared normal and drew blood and a urine sample. They initially thought Mason aspirated when he spit up and possibly had aspiration pneumonia. However, the chest xray looked pretty clear. So they were waiting on the blood tests and urine culture to come back. They then suspected he may have an urinary tract infection which is common in preemies but can make them pretty sick. Another hour or so later we got another phone call (no I did not sleep a wink that night between the worrying and mini heart attacks every time the phone rang). They were calling to let us know they had to increase Mason's respiratory support. He was previously on 2L of hi flow oxygen through a cannula in his nose. Now they were having to put him on a RAM cannula. This was a little upsetting. We had come so far with their breathing in the past month that I really hated he was taking a step backwards in the respiratory aspect. The RAM means he is still breathing on his own (it's not like he was put back on the ventilator). It simply gives him a bit of pressure in his airways and puffs of breaths at a low rate. They also started an IV in his right arm for antibiotics since they suspected an infection (whether it was pneumonia or an UTI they weren't yet sure). 
All day Monday Mason stayed on the RAM cannula. Poor thing just wasn't his usual self. He slept all day and seemed very lethargic. He did not fuss during diaper changes or when being repositioned. I missed my poor little baby boy's wimpers and cries. 
By Tuesday Mason was back to his usual self. The urine culture came back positive to show he did in fact have an UTI.  I was actually relieved to hear this. It made me feel better knowing there was a reason for his change. By that time he had a full day of antibiotics and the doctor informed us they would continue the IV antibiotics for 7-10 days. They took him off the RAM and back on the hi flow oxygen at 3L (he was previously on 2L so we still need to wean him back down a little to be back where he was). So we are hoping the antibiotics continue to do the trick for our little man!
It's crazy how such a little thing like an urinary tract infection can effect him so severely. I'm not sure I would have caught this at home until it was too late. He never ran a fever (I'm told preemies usually don't). And they both sleep so much anyway I'm not sure I would have quickly caught how lethargic he was. And when he's home and not hooked up to monitors galore, I wouldn't have known he was having trouble respiratory wise.

So while I am eager to get my babies home, this did remind me that although they have came a long way.....we still have a long way to go. 

So with all that being said.....here are some pictures from their weekend. 

Madeline got a new hat this weekend!

And they both had a busy weekend full of visitors!

Friday, February 22, 2013

We Hit the BIG 4 Pounds!

Last week Mason hit the 4 pound mark and as of last night Madeline did as well. Mason now weighs 4 pounds 5 ounces and Madeline is 4 pounds 2 ounces. They are also out of the isolettes and in cribs! This is such a big step for our little ones. They are able to maintain their own body temperatures outside of the warm and toasty isolettes and are gaining weight every day! We have been working hard on learning to suck a binky in hopes that in the next few weeks we can start trying a bottle. The little ones have both been weaned down to 2L of oxygen. We are so proud of the progress they have made so far! The next step is to continue to wean the oxygen and get the whole suck-swallow-breathe thing down so we can begin bottle feeds and nursing. So wish us luck over the next several weeks as we tackle this obstacle! 

Last weekend we were able to put them together for another play date.....which of course means I took way too many photos of these cuties cuddled up together. 

Mason and Madeline have also had a lot of visitors over the past week!




Madeline working on that binky! 

How cute are these signs one of our favorite nurses made for their one month birthday on the 12th

I went home one day this week to do some of the twin's laundry and get some work done on their nursery. It's starting to come together! Here's a little sneak peak. 

Tuesday, February 19, 2013

Mason and Madeline 1 Month Update

Last Tuesday, February 12th, Mason and Madeline turned 1 month old! Everyone around me keeps saying, "Can you believe they are already a month old?" or "Hasn't it gone by so quick? I can't believe they are already a month!" To that I say... HA! I feel like its been a year! A verryyyyy long and stressful year! A fellow NICU mom told me that many people say the NICU is a roller coaster ride. She then told me that what they forget to say is that you are tied to the back of that roller coaster by your ankles! She wasn't kidding! I will say since hitting this one month mark things have been so much better. The babies have seemed to take such a turn for the better and are growing so big! So with that being said.......Happy 1 month my sweet babies!

Mason Dallas Rimini
At Birth: 2 pounds 6 ounces, 14 inches long
1 month: 3 pounds 10 ounces, 16 1/2 inches long

Madeline Sophia Rimini:
At Birth: 2 pounds 7 ounces, 14 1/2 inches long
1 month: 3 pounds 4 ounces, 16 inches long

You have grown so much in the past few weeks. Every nurse that walks by comments on how quickly you have grown. You have also become quite a little flirt! A few of the nurses get so upset if they don't have you on their schedule that day. You love to grin in your sleep and it melts everyone's hearts. I think you are going to be a little heart breaker when you are older.
Even though you have the cutest little grin you also are the most vocal between you and and your sister. You don't like to be bothered much and will make the most pitiful faces and let out little cries during diaper changes and baths. I think you may be the more sensitive one!
You are getting feeds through your NG tube every three hours. However, you are having issues with reflux and spit up quite often so your feeds are given slowly over an hour and a half time frame. So it seems all you do is eat!
We are currently working on binky sucking, which I think you like! We have also started dressing you in your cute little outfits.
When we put you with your sister for bonding time you can't stay away from her. We kept trying to move you back because she kept hitting you in the face (on accident I'm sure! ha!). No matter how far back we scooted you, you would inch your way back so your face was right next to hers. I think you are going to be such a good big brother. Speaking of big brother.....you are also now bigger than your sister which was not the case when you were born!
Mason I am so proud to be your mommy. Every time I look in your isolette and see your little face so full of expressions it melts me. I know you are going to bring so much joy to me and your daddy, because we are already are so in love with you.
Love you to the moon,
Your Mommy

I was so happy when we found out we were having a little girl. I know you are going to have me and your daddy wrapped around your little finger because you are just so tiny and sweet!
I am so proud of how far you have come in your 4 weeks of life so far. You have overcome so many obstacles in such a short time. You have proven to be one independent little girl! You seem to only do things when you decide you are ready! You even took out your own breathing tube when you decided it was time!
Since then you have really started to grow and show us your personality. You never get upset! You are very easy going. In fact, your daddy and I have never even heard you cry! You can be poked and turned every which way by the nurses and all you do is give them a little scowl.
You have the most delicate little facial features and big dark eyes. You are such a pretty little baby. We are just now getting to dress you up every day. I have such fun picking out your cute little outfits for the day, even though almost every diaper change, when the cool air hits your bottom, you pee all over and we have to find another outfit!
Madeline we could not be happier to have you in our lives. We were so worried about you the first few days after you were born that you will now always hold a special place in my heart. I am so proud of you and your independent little personality. Words can not express how much your daddy and I love you.
Love you to the moon,
Your Mommy

Happy One Month Birthday Madeline and Mason!

Tuesday, February 5, 2013

Guess Who is Breathing on Her Own!

 Yep, that's right! At the end of last week they had started Madeline on steroids in preparation to take her off the vent on Saturday morning. Well Madeline had other plans. On Friday morning I was stuck at home and unable to go up to the hospital (I had mastitis and was dealing with a 103 degree fever.....no fun). I got a call from the doctor that Madeline had pulled out her own breathing tube and since they were planning on removing it the next day anyway, they decided to just leave it out and see how she did. Well, little girl must have known she was ready because she has been off the vent since and has done great! I was in complete shock! My fever finally broke by that evening and I was able to go up to the hospital. She looked great! I think she knew how stressed I was every day we had tried to remove it in the past, so she saw I wasn't there that day, and decided she'd just take care of it herself so I wouldn't have to go through another stressful day of watching the doctor's pull the tube out and then stare at the monitors in fear all day. Such a smart little girl! ;)

So now Madeline is on a high humidity oxygen at 3 liters. Mason is now on 1 liter of oxygen. They both are tolerating much more breast milk (still through their NG tubes) and the nurses are fortifying my milk with extra calories and protein. Madeline's head ultrasounds are continuing to come back stable and the bleed is starting to "dissolve". Her heart murmur is even starting to become difficult for the nurses to hear so hopefully this means the duct is starting to close up on its own. All in all everything is really looking up. The focus over the next few weeks is to just grow and gain weight. They both had their OT and PT evaluations today. Both therapists said they thought everything looked great and they saw nothing of concern. Our homework is to start working on sucking on a binki in preparation for nursing and a bottle.

Jason was able to give Mason a bath 

And after the bath we put them together for the first time since they were born! (Madeline was still on the vent at this point)

Holding hands! 
Mason checking out his sister
Here's a video from their little hang out together session! 

Pics of Madeline off the vent! Love seeing her little personality now! 

Working on the Binki sucking

Few more pics of Mason:

On Saturday we were able to dress them up for a few minutes and have a little photo session. I put the smallest onsies we had on them and they were still huge! But they looked so cute! And they were able to hang out together again for a few minutes. 


And my favorite picture to date....