Anthony - Sleeping with a nice full tummy
Nurse Ilene burping Anthony (He would close his eyes every time Jason took a picture)
Jared - Sleeping on his tummy after being intubated again
Jared - Sleeping on his tummy after being intubated again
In my last post on Friday afternoon, I mentioned that we had received good news all day and would wait to see what tomorrow brings. Unfortunately we didn't need to wait very long for a bump in the road.
When Jason and I went to visit the boys on Friday night, Jared had been re-intubated. Around 7 PM on Friday, his O2 saturation and heart rate dropped and the nurses could not get him to recover. Dr. Basiri was in the unit at the time and decided to intubate him because he would not breathe on his own. Jared recovered very quikly once he had the help from the ventilator.
Needless to say, this was not at all what we were expecting when we arrived at the hospital. Dr. Basiri spoke to us at length about the cause of this episode. Both he and Dr. Kamran thought that it was either an infection or his PDA. There were signs that both suggested and opposed each. Dr. Basiri took another blood and urine culture and indicated that his PDA would need to be dealt with sooner rather than later. Jared was practically on his way to CHOC that night!
The initial read of the blood and urine cultures came back negative (again) and this made everyone think that the PDA was to blame. Dr. Basiri ordered another echocardiogram to be administered on Saturday morning when Dr. Patel arrived. Jared remained stable all through the night, with me calling every 2 hours to check on him of course.
To our (and Dr. Patel's) surprise, the cardiologist at CHOC said that Jared's PDA had closed based on his reading of the echocardiogram that morning. We could hardly believe it. We were thankful, of course, but shocked at the same time. Here we were, trying to ready ourselves for the idea that one of our precious babies would have to be transported to CHOC to undergo surgery when in fact, it would not be necessary. The doctors and nurses still hear a murmur in his heart, which they all just assumed was the PDA, but now they realize it is just a murmur.
This begs the question - what caused the "crash" on Friday night? Dr. Patel said "we're chalking it up to a preemie being a preemie." Good news...I think?! We can't treat the cause if there is not a cause - so it is impossible for us to stop this from happening in the future.
So here we are, a gigantic step backwards in our eyes. Jason and I hardly slept that night. Jared is the one that needed to do all the the sleeping anyway. He needs to do all that he can (or actually do nothing) to get stronger and stronger.
Although his vital signs were indicating that he was doing well, the doctors decided to keep Jared on the ventilator Saturday and Sunday and possibly extubate him Monday AM. They also discontinued his feedings until further notice.
Dr. Basiri thought it would be a good idea to repeat the head ultrasound to make sure that this episode was not caused by some sort of brain event. On Saturday night, we received good news about his IVH. The ultrasound indicated that the bleeds have not gotten and bigger and that actually one of the sides is actually showing signs of "softening" which means it is beginning to be reabsorbed into his system. This is amazing news, and exactly what should be happening.
Fast forward to today, Jason and I spent the afternoon in the NICU with the boys. We are only allowed to stay until 6:30 PM because of the nursing shift change and then we can return at 8 PM. Jared's nurse indicated that he had been fighting against the ventilator to breathe and he was becoming fussy and restless. She decided to see if suctioning was necessary, and sure enough, it was (apparently he has won the title of "Booger Boy" from the nurses).
While trying to suction him, his O2 saturation and heart rate dropped and the nurse couldn't get him to recover as quickly as she would have liked. She thought that maybe she had moved the intubation tube and it was no longer getting a good seal in his throat. Dr. Rehan was called to take a look, and they decided to take out the tube and reinsert it. Jason and I were asked to leave during this procedure. It was quite a tense moment for us as our baby was surrounded by nurses, respiratory therapists and Dr. Rehan. Then, just like that, we were informed that they would not be intubating him, but rather they would leave him on nasal cannula because he was breathing fine on his own. Talk about a turn in the right direction.
Not exactly what we were expecting, but in a good way! It was now 6:30 and we had to leave for shift change, but everything was a little chaotic so we decided to return promptly at 8PM, which we did to find him resting comfortably and breathing well on nasal cannula. Hopefully there is no change tonight.
Anthony is still stable and has been moved from CPAP to nasal cannula also. He is still tolerating his feeds well and is up to 10ccs every 3 hours as of tonight. He is really filling out and is a whopping 2lbs. 5oz. Tonight we were visiting during one of his feedings and we saw Nurse Ilene sit him up to burp him, it was so cute to watch. We aren't sure if he actually burped, but he did get a mad case of hiccups. He is pooping regularly now, a few dirty diapers each day, which is a good sign that his tummy is working well and digesting the breast milk correctly.
Jason and I take each bit of good news very cautiously. We talk often about the fact that it is hard to be happy about good news when you don't know what kind of news is waiting around the corner. Friday night is a prime example of this. If this weekend has taught us anything, it is that you have to take each situation step by step. Don't worry about what is coming next, just deal with what you have going on right now. We are always so worried about bad news coming, when the truth is that good news may be what is on the horizon.
Finally, I would just like to thank each and every one of you who attended my shower on Saturday. Your generosity is truly humbling to Jason and I. That is the only way to explain it. We are so appreciative of all of your gifts but most of all your love. Our two little babies are going to be surrounded by the most wonderful family and friends, and we are truly grateful for all that everyone has done for us. I would also like to thank Auntie Kellie, Auntie Stacie and Auntie Carrie for all of their hardwork to make my shower so amazing. Thank you also to everyone who had a hand in making it possible.
Fight On! Little Fighters!! - Love Momma