Saturday, January 26, 2013

Madeline and Mason's First Week Update

 The first week (specifically the first two days) in the NICU was a doozie. Like I said in the last post the day of their birth Madeline was off the vent and doing great while Mason was on the vent and worrying us a little. That quickly changed. The night after they were born Jason and I were asleep in my hospital room (I was in Barnes Jewish Hospital which is attached to Children's Hospital where the twins are). My cell rang about 2:00 in the morning. The doctor called to let me know that Madeline was having trouble keeping her heart rate up and her oxygen levels were dropping. About an hour later they called to let me know they had to to place a breathing tube and put Madeline on the vent. About an hour after that they called again to tell us that they were running some tests to try and figure out what triggered these events since she was previously doing so well. One of these tests was another head ultrasound to check for a brain bleed. The day they were born the twins each had a head ultrasound that came back completely clear. This was such a relief to me because for some odd reason this was a fear of mine. So at 4 in the morning to hear they were doing another head ultrasound to check again for a brain bleed had me very concerned.

That same night I spiked a bad fever and was having trouble with tachycardia (my heart rate was running very high). They thought I was getting an infection and started me on antibiotics. So I was not allowed to go down to the NICU myself until later that Sunday morning. I also made the mistake the first day of not taking any pain medicine after my spinal wore off. I'm not a huge fan of taking medicine and I felt pretty good so I refused the pain meds they were offering me later that day. Stupid! Because that next morning I was hurting quite a bit more than the day before. So on top of all that here we go over to talk to the Doctor about what they heck happened that night with Madeline.
The doctor (who is fabulous by the way) took us into a small conference room and explained that they found a grade 3 brain bleed on the head ultrasound. This means that Madeline had a bleed in the ventricles of the brain. (Think of the ventricles as the plumbing system of the brain). The bleed did not escape out of the ventricles into the actual brain matter. That was a good thing. However, we were told they had to keep watching the bleed over the next few days for two specific things. They did not want the bleed to progress and have blood go into the actual brain. They also had to watch that the bleed in the ventricles didn't cause the ventricles to expand and put pressure onto the brain causing hydrocephalus. So the next few days would tell us how severe this situation could be. The doctor did give us a ray of hope in saying that if the bleed did not progress that it was likely she would have no long term effects from the bleed and over several months time the blood would dissolve sort of like a bad bruise. There is obviously no guarantee in anything like this, however, it was very reassuring that if nothing progressed it was likely in a year or two we would never even know this happened. They also told us Madeline had a pericardial effusion (basically extra fluid around the heart) that was probably caused by a duct in her heart that had not closed at birth. This duct normally closes a few hours after a baby is born, but in preemies it often doesn't. They were not going to do anything for this except watch it closely.

Jason and I were obviously very upset by all this news however we kept our cool and went back to the NICU afterwards and sat for about an hour or two with the babies. As we left the NICU to head back to my hospital room I lost it. I have never had a panic attack before, but that was exactly what happened I couldn't stop shaking and could not catch my breath! I thought my heart was going to beat out of my chest. It was like everything that had happened over the past 2-3 days had finally caught up with me. Jason and my mom rushed me back to my room so I could lay down. I really thought they were going to have to admit me to the looney bin! If I thought I was sore that morning, all that shaking and trembling I was doing most certainly did not help my soreness. And don't worry I was never admitted to the looney bin, they did not have to put me in a padded room! Hopefully that was my first and last panic attack and I've managed to hold myself together ever since! Well, I can't say I don't get a little emotional from time to time seeing my sweet babies go through so much, but overall I think Jason and I have handled it all pretty well now.

Over the next week they followed Madeline's brain bleed very closely. It never progressed to above the stage 3. They are now calling the bleed stable and are now only doing scans on it twice a week. The fluid on Madeline's heart has also improved. The duct in her heart is still moderately open but the doctor's are monitoring it. We have been so relieved the bleed never progressed. We later came to find out that Mason had a small bleed as well, however, it was just that....small and was caught only by a routine head ultrasound. He never had any indications that there was a problem.
Not to be outdone by his sister, Mason also gave us a few minor scares later that first week. They took out Mason's breathing tube.....however he evidently was not ready. Jason had to stand and watch as his alarms were going crazy and 6 doctors and nurses came rushing over to quickly put in a new breathing tube. I think Jason actually saw this happen 3 times over the course of that first week. To say this was a heartbreaking and scary sight for Jason to watch was probably an understatement.

Here is a video of Jason giving Mason a little pep talk the night before they were going to give him another try off of the vent. Every time I watch this video I either cry because it's so darn sweet or laugh at how it seems as though Mason is listening to every word his dad tells him.

The pep talk worked because the next day they removed the breathing tube and Mason has been off the vent ever since! Yeahhhh Mason!!!

Mason's first football is bigger than him! 
Miss Madeline stretching out! 
Madeline at 1 day old

I know the pic is upside down but how tiny are their diapers?

Madeline all snuggled up.

Mason and I during some skin to skin time.

I love this picture. I think it captures exactly how Mason feels about being in the NICU! haha! 

Mason during some skin to skin time with Jason.

Mason wide awake! 

So that was our little ones' first week. Like I said it was rough. The next week was a bit less stressful. I'm trying to get caught up with the blog post updates so I can start updating everyone on their progress as things happen. So tomorrow or Monday I will do their 2nd week post. I can't believe they are two weeks old already!!!! Crazy!


  1. Congratualtions Ashley! They are so, so precious! I actually worked in the NICU before staying home with my little ones, so all your pictures and stories definitely brought back memories. Looking forward to your next update ~ they are beautiful! Hope you and Jason are doing well :)

  2. Thank you for the update. I cried when I read it, not only that things happened to them, but that you and Jason were getting all of this, including the early birth, thrown at you at once, yet through God's amazing love, the Riminis made it through. I am saying Rosaries for each baby and the best day of all is when I get to hold each of your Miracles. God is good all the time. Love you all.

  3. Sending prayers your way! The look like such little fighters!!

  4. Prayers always coming! We know I am emotional but I find myself always crying when I read these! I am also sooo thankful you can keep us updated through this so I dont drive you crazy with texts!!! L-E-T-S-G-O Lets go Madie!! Don't let your brother show ya up sister! :) love you guys!!