Sleep Tight, sweet baby RJ
Post Surgery Update
This morning, they told us he might not make it through the surgery. He was prepped and sedated for the operation, and Mauricio and I were moved to the waiting room where we sat for three hours before the surgeon came in.
The good news: RJ is still alive!
The bad news: The bowel perforations that had been repaired on Friday were beginning to leak again. And once again, stool had been spilling into the abdominal cavity putting him at an exceptionally high risk for infection. The surgeon made some changes to the location of his ostomy (the portion of the intestine that is now exposed), but assured us that this is nothing that can't be put back together in the future. At some point, RJ will have yet another operation but should regain normal bowel function.
Having been at the hospital so early this morning, Mauricio and I went home to take a nap while RJ recovered from his anesthesia. Unfortunately, we were once again awakened by a phone call from RJ's doctor. This time, we were told that his vitals have been very unstable since the operation.
We are back at the hospital now and, after speaking further with the doctor, here's what we know:
-RJ's ventilation settings were extremely high after surgery requiring him to once again be put on the oscillator. He is on moderate settings on this machine.
-RJ's blood pressure remains low despite a blood transfusion and almost maximum doses of medication for blood pressure support. The "last resort" medication (epinephrine) has been ordered but is on hold for now.
-It is possible that the stress of surgery today, combined with all of the fluctuations in blood pressure, will cause RJ's brain bleeds to worsen.
-RJ's condition is so unstable that he has been assigned 2 nurses specifically for his care tonight.
-4 antibiotic medications will be continued to fight any infections caused by the bowel perforation.
Despite all of this, the doctor told us that there is still hope RJ will recover, although he is obviously not recovering from surgery as easily as last time. We were told that the next 24 hours are critical and if we can get past that hurdle, he should begin to stabilize.
RJ has been put through the ringer today and it is killing us, but we know our little boy is stronger than the two of us combined. As usual, thank you for your continued support. We are hoping against hope that we can get back to everyone with good news tomorrow. Please say an extra prayer for baby RJ tonight.
Overnight Mauricio and I received a call from the doctor informing us that the incision from RJ's bowel surgery had "bust open." We were told to get to the hospital first thing in the morning for repair of the site. Unfortunately, what I thought was going to be a simple stitching repair has turned into a full repeat of the bowel resection surgery that was done last week. I guess with the PDA issue ruled out, doctors feel that RJ's continued low blood pressure issues could be a result of infection from yet another intestinal rupture. RJ is in surgery as I type this, and Mo and I are a ball of tears in the waiting room as we wait for results from the surgeon. Please pray for strength for our little man!
After yesterday's confusion, we received welcome news. RJ had an echocardiogram earlier today and the results show he most likely does NOT have a problem with his PDA. We were fearful the PDA (a valve between his heart and lungs) had reopened, as doctors told us yesterday that all of the oxygen and blood pressure variations were indicative of a reopening. If you remember, this is the vessel that we were relieved had been closed by medicine given last week; If it had reopened, he would have likely needed to have surgery to tie it off. Coming on the heels of the first surgery for his intestines, it may have been too much for him. So we thank God for that, and to all of you praying and sending your positive thoughts his way. Everything is stable.
I would have posted RJ's daily update a little sooner, but the truth is I'm not exactly sure what to say. As far as I can tell RJ is stable despite slightly higher ventilator settings and lowered blood pressure. We didn't receive any bad news when we came in this morning...but, various alarms have been going off all day today in what seems like 30 second increments. Oxygen saturation is up, then down, then up again. RJ is moving around like crazy, but these movements seem to be more like agitation than anything else. We have asked the doctor everything we can think of, and despite our concern we have been assured that everything is okay.
I guess these alarms are getting to me because I can't help but think that something is wrong today...and I am one nervous mom sitting in the corner of this hospital room!
Please pray for wisdom for our doctors and strength and health for baby RJ.
Changing My Perspective
I'll admit it...my first Mother's Day was difficult to get through. I woke up to get ready for a quick brunch with the family, not quite ready to face the day. I opened a sweet card from Mauricio and the boys, then cried in the car on the way to breakfast. Once at the restaurant, I cried again when I opened a very thoughtful gift from my sister. I tried to quickly wipe away the tears and put on a brave face instead, but in all honesty it was all a little too much for me.
Instead of happily celebrating Mother's Day, all I could think about were the things I didn't have. I have two cribs and two car seats waiting at home, but no babies to put in them. I have little boy clothes and soft baby blankets, but nobody that I need to keep warm.
After breakfast, Mo and I raced to the hospital where my pity party continued. We were met with news that RJ's blood counts were down again, indicating that he possibly had a worsening brain bleed or internal bleeding as a result of his recent surgery. Hopefully though, the decreased numbers were simply a result of the continued blood draws for various labs. Additionally, the doctor let us know that RJ's white blood cell count was up, possibly indicating a new infection since the surgery. Given RJ's tiny body and non-existent immune system, any type of infection could be fatal.
Mauricio and I stayed at RJ's bedside the entire day, anxious for ultrasound and lab results that would clear up the unknowns regarding the brain bleeds and infections. I cannot begin to put into words how nerve wracking those moments are...hoping for the best, but bracing ourselves for news of the worst possible outcome.
Evening came and we still hadn't received any word from the radiologist. I (annoyingly) asked the nurse for an update, and she was kind enough to pull up RJ's chart. It was then that she read the sweetest words a mother could ask for: head ultrasound showed "no significant change" in comparison with earlier scans. Even better, the x-rays performed earlier in the day showed no sign of internal bleeding. Then, the doctor came in to let us know that follow-up lab draws showed RJ's white blood cell count in a normal range, leading him to believe that the earlier test was a false reading caused by RJ's delayed reaction to the stress of the surgery.
I breathed a HUGE sigh of relief and within a minute my pity party was over. Everything we'd learned was good news and my perspective was completely changed.
I have been given the chance to be a mother to 2 beautiful baby boys that, in just a matter of days, have changed my life forever.
I have a husband that loves me with all of his being, even on my worst days.
I am part of a strong family whose love is constant and whose support is unwavering.
And, most importantly, I was blessed with the chance to spend another day sitting beside my son - touching him, loving him, and fighting with him.
PS- A sincere thank you to all of you that took the time to wish me a Happy Mother's Day. Your sweet words made it easier to manage my way through a very difficult day. I cannot say enough how appreciative we are of your support and prayers. Keep 'em coming! It's working so far!
Happy First Mother's Day, Mommy!
Luke and RJ got Kelly a Mother's Day card and flowers this morning. I presented them to her on their behalf, naturally. I knew if they could, they would have showered her with kisses and hugs, so I did that too. Happy Mother's Day to all the Moms reading this blog! Your support means so much to us.
Although this is not how we pictured our First Mother's Day going, we will treat it as the very very special a day it is. Luke is with us here, at RJ's bedside, as we celebrate the venerable institution of Motherhood.
RJ is chugging right along (literally chugging...the oscillator sounds like a miniature train minus the whistle). His heartbeat is solid, they are slowly weaning him off the oscillator because he is breathing so well, and his weight is up! Whether the weight increase is due to fluid retention remains to be seen, but he is up to 620 grams. He is still resting, recovering from his surgery.
I hope everyone has a great Mother's Day, and thank you for your thoughts and prayers.
Good afternoon everyone. RJ is holding steady today. His blood gases are looking good, his lungs looked mostly clear on the x-ray, and they may transfer him from the oscillator to the ventilator later today. He is on 3 kinds of antibiotics to combat his infections. RJ is on morphine to help him with the pain from the operation, poor little guy has been through so much. He is resting now as we sit by his side, hoping our voices and love reach him and give him strength and courage. He has already fought so hard and will need to continue fighting in the weeks ahead. With preemies of his size, it's never a linear progression. There are tiny steps forward and big steps back all the time. He is constantly struggling with a body that is not yet equipped for this world of ours. But his heart is strong, stronger than any I've ever seen, and I know he will persevere. Meanwhile, I hope he is dreaming, dreaming of days filled with hugs and kisses and candy. I know I do.
The operation to RJ's intestine went exactly as planned. They repaired two tiny parts that almost perforated, and cut away a small part that was dead. He now has one end of his intestine sticking outside of the incision. They'll reattach the intestines in a couple of months, and if all goes well it will be like it never happened. Unfortunately he wasn't returning to stats. Stats refers to the levels that the doctors and nurses want to see him at, whether it be his blood pressure, amount of oxygen in his blood, heart rate, etc. So the tests were showing his oxygen level was low, probably because the operation had left him with a little bit of air in his chest cavity. They had to put him on an oscillator, meaning a machine is pumping oxygen into him at a high rate, helping his lungs to fully expand. It hurts us to see him on it because it makes his chest shake :(. His status is critical but stable at this point. He is septic due to the spilling fecal matter into his abdomen, and they have him on antibiotics for that. The good news is the doctor says that typically they don't foresee the bowels dying anymore than they already have. So it's good that it was only a small section that died. That would have been a very hard sentence to write two weeks ago but after everything that's happened....we'll take every silver lining we can get. Thank you to everyone who prayed or sent good thoughts for our little boy. He soldiers on!
Okay guys...we really really need your prayers today. When we came to the hospital this morning we were told that RJ's stomach began to show some gray discoloration over night. This prompted yet another x-ray of his abdomen and doctors were unable to see any gas bubbles in the intestines. They are concerned that a portion of RJ's bowel is dead after all, and he will have surgery with possible bowel resection this afternoon. Mo and I are terrified and begging for your prayers for our little guy.