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.
Mauricio and I are home from the hospital and trying to find the energy to
tackle some insurance paperwork before we get to sleep. Thankfully
though, we can rest a bit easier tonight after receiving this news earlier this
According to the doctor, RJ's head ultrasound showed no change in the bleeds compared to the last scan performed a couple days ago. Of course, we would prefer that there were no bleeds to begin with, or that the bleeding in his brain had miraculously disappeared. But, for now, knowing that the bleeds have not worsened gives us hope that our little guy has a fighting chance. From the bottom of our hearts, thank you to all of those praying for us! It seems to be working, so keep doing what you're doing.
While you're at it, please pray for Mauricio as well. The stress of the last two weeks has taken a toll on his body and he's developed a pesky cold. Obviously this wouldn't normally be a big deal, but today it prevented him from visiting RJ - since our little man is so fragile, any illness or infection could be life threatening. We didn't want to risk passing anything to him, so Mo waited in the waiting room all day while I sat with our son. Hoping to wake up with a healthy husband tomorrow morning!
Good night everyone. And to baby Luke - I'll be dreaming of you.
I walked into RJ's room today and started my routine of checking all of his monitors: Heart rate is a little higher than yesterday. Blood pressure is a little lower, but still within the desired range. Respirations look good, just like they always have.
And then I checked the whiteboard, and when I saw it my heart sank.
RJ is continuing to lose weight and now measures exactly 1lb. My heart breaks when I look at his little body...I see his ribs poking through his delicate skin and I just want to cry. Our little guy weighs almost nothing, but continues to fight with all he has.
The doctor met with us soon after we arrived this morning. Here is the update from overnight:
-Ventilator: RJ was a little difficult and somehow dislodged his ET tube overnight (he is very active and his little hands are always pulling at the wires across his body). He was reintubated around 3am and has since been breathing above the vent settings. This means that RJ is partially breathing on his own, with only minimum assistance from the ventilator.
-Blood pressure continues to be within good ranges and they have been able to keep RJ off of the Dopamine drip.
-Blood tests showed another drop possibly indicating more bleeding in the brain. Another head CT was performed this morning and we are anxiously and nervously awaiting results. We are hopeful that the brain bleeding has stopped, as the doctor says this low blood result could also be due to multiple blood draws tocheck blood sugar yesterday.
-RJ had another blood transfusion overnight due to the anemia
-A repeat chest x-ray was done this morning. The lungs look "beautiful" today with no edema (prior X-rays showed lots of fluid on the lungs). The doctor even showed us both the old and new x-rays, and we were able to see for ourselves that today's scan looks completely normal!
-RJ pooped again today and the bowels look excellent on x-ray. Concerns for NEC or dead bowel are even lower than before, but the antibiotics will continue just as a precaution.
Obviously, the biggest worry for the day is his weight, for which doctors seem to have a plan in place, and the head ultrasound which will be read this afternoon. Please continue to pray for good news!
Mauricio just got to change RJ's diaper for the first time. It may have been the first time I've seen my husband smile in over a week! We are so thankful to the NICU nurses for giving us the chance to feel like parents, if even just for a second.
Also, I still can't get over just how small our little guy is. It's hard to really grasp his size from a photo, so here's a pic of his diaper next to an iPhone. Even with such a small diaper, it still has to be folded to fit his tiny body!
Today officially marks 1 week since our baby boys were born...I really can't believe that. In some ways it feels like just this morning that we were holding baby Luke, and at the same time it seems like pregnancy was a lifetime ago.
Today, we are back in the NICU with RJ, the only place we feel like we belong anymore. When we are away, we have the biggest heartache and our anxiety levels are through the roof. We know that there is absolutely nothing we can do for RJ right now, but being close to him is the only thing we want anymore. We hate that we have to leave for dinner, or that we have to go home to sleep. We count down the minutes until we can be next to him again - kissing the glass of his incubator, whispering words of strength to him, and reminding him that his Mom and Dad are here for him every step of the way.
Today, RJ seems to be doing okay. Thankfully, there were no big developments over night. He is still on the ventilator but requiring less support than yesterday. He had also been on a Dopamine drip to maintain blood pressure...this was stopped today and blood pressure has no longer been an issue.
The biggest concern for the day is his blood sugar, which has been pretty high. Doctors are worried that the high sugars are causing him to urinate more frequently, which prevents him from maintaining the fluids he needs to gain weight. He was started on an Insulin drip and hopefully the blood sugars will balance out by this afternoon.
Other than that, RJ seems to be resting comfortably in his incubator and is covered by a tiny blanket that is very special to Mo and I. It was given to us the day I delivered, and we were told to sleep with it between us so it would capture our scents. Since that night, it has been at RJ's side and has hopefully been soothing to him. We are comforted knowing that even though we can't touch him, little RJ has always has a small piece of us with him!
As always, thank you all for the thoughts and prayers. Mo and I are humbled by the support from all of you and know that we can win this battle with all of you standing firm behind us.
Needless to say, after the doctors told us that our boys would perish if they were born, we focused on NOT going into labor. My poor wife Kelly was put on bed rest so that her head was 4 degrees lower than her feet. She could not get up for any reason whatsoever. She was given Magnesium Sulfate and a steroid that helped mature the lungs of both boys. The Magnesium did double duty, primarily to help protect the brains of our children, but also to slow the contractions. We breathed a huge sigh of relief when the contractions stopped. It now appeared that we were in for a long wait while the boys developed in the safest place for them, their mother. Surrounded by our family and close friends, we had plenty of support and love. For four days, we prayed and hoped that they would hold fast. Each day that passed was a momentous occasion, it meant our precious boys had grown just a little bit more, had fractionally built up their defenses against this cold and raucous world. We ate at bedside and drank gallons of water (staying hydrated slows contractions). We watched television for hours. I finally became well acquainted with Kelly's all time favorite TV characters, those crazy kids from "Friends". Hotel Kaiser Permanente kindly put us up in a big room with a couch that pulled out into a full sized bed. Familia and amigos brought us snacks and visited, brightening our days. So we waited, not with impatience but with wishes that the wait become longer and longer. On the fifth day, our wait was interrupted...but thankfully we knew we had barely made it to the 24 week mark. We breathed a sigh of relief knowing that our boys would at least be given a chance to live. At the same time, we cried and braced ourselves for a whole new roller coaster.
We have just finished speaking with the Director of the NICU as well as a pediatric surgeon regarding RJ's condition.
Luckily, the x-ray of RJ's bowels does not seem to show any necrotic or "dead" sections at this time. This is excellent news because had there been any necrosis, little RJ would have required surgical intervention. Obviously, given his tiny body and fragile state, this would have been cause for great concern. Instead, the surgeon thinks the bowel is just a little inflamed and "sluggish" due to RJs prematurity. For now, the plan is to treat him with an antibiotic simply as a precaution.
As for the bad news, RJs head ultrasound did in fact show a new hemorrhage on the right side of his brain. These are called Intraventricular Hemorrhages (IVH), and can happen spontaneously with premature babies due to their fragile blood vessels. If a bleed is shown on ultrasound, it is assigned a grade of 1-4 according to the severity. We have been told that grades 1 and 2 typically resolve themselves with no long term effects to the baby. Grades 3 and 4 are the most serious, causing irreversible and permanent damage to the brain. For RJ specifically, he has been diagnosed with a grade 4 hemorrhage to his left side and a grade 2 to his right. We have been told the grade 4 is not catastrophic, but will likely cause some muscle stiffness and other developmental delays in the future. Please please please continue to pray that these bleeds do not worsen, as they have the potential to evolve and continue bleeding over time. The ultrasound will be repeated once a week to monitor any changes.
Lastly, I forgot to mention earlier that RJ's heart was being monitored as preemies often have a problem with their PDA, which is a blood vessel outside the heart. Typically, when babies are born at full term this vessel closes on it's own. Preemies, however, often have trouble with this PDA closing which causes problems with blood flow between the heart and lungs. The only options for closure are a medication therapy or surgery, if necessary. Well, we are happy to report that as of today it appears RJ has responded to the medication and will not require any heart surgery!! An echocardiogram performed today showed no abnormalities and no heart murmur was detected, indicating that the PDA is closed.
We are so thankful for this and will take the good news where we can.
I'll leave you with a picture of our little guy...his eyes have not opened yet, hence the awesome sunglasses to protect against bright lights.
April 26 was supposed to be a day of new beginnings, but it's outcome was nothing like we expected. We had just gotten keys to our new home! We drove there to roam its empty rooms and fill them with our hopeful plans. In the car, Kelly felt some pain in her left side but attributed it to ligaments stretching to accommodate our growing sons. We arrived at the house and had only a moment of joy in the future nursery when our entire world was upended. Kelly's mucus plug came out, signaling the beginning of preterm labor. We rushed to Kaiser Permanente Hospital in Anaheim, where Kelly was immediately admitted and found to be 3.5 cm dilated, and worse, she was having contractions every 4-5 minutes.
We were 23 weeks, 4 days pregnant. That is three days short of the time when a baby is considered to have any chance of survival outside the womb. The doctors told us that, due to this "industry standard," our twins were going to arrive too early for anyone to help them.