Gadgets

Well anyone who knows Mark knows how much he loves his gadgets. We've had several new ones to try out lately so you would think he'd be in his glory but alas....no. As a matter of fact it might be the only new gadget he has wanted to throw out the window within the first three hours of getting it. The new gadget you might have already guessed is the pulse oximeter. It tells us what Alex's oxygen level and heart rate is, and also alarms anytime it goes out of the desired range. This sounds so simple, should be so simple but instead has been one huge headache.

We brought Alex home finally Thursday night. We met with the Pulmonary team and discussed Alex at length. They agreed that he was stable, his oxygen requirements had been about the same with very minor fluctuations. Our goal is obviously to get him off of oxygen completely but did we really need to sit in the hospital, surrounded by potentially very sick people, just to wait until his oxygen levels came up? Everyone agreed no. We could certainly monitor this at home pretty easily or so one would assume.

We had all the equipment delivered (oxygen--a HUGE torpedo looking thing is our new focal point in the living room, I'm thinking we should wall paper it or something but Mark is not in favor, we have little "baby" tanks to go out with, lots of cords, oximeter, stickers to keep oximeter on and a new nebulizer machine to give him his steroid breathing treatments twice a day.)

The visiting nurse came out to help us review how everything worked and we soon learned that the oximeter that we received would not work on a very little eight pound baby, the sensor could simply not be twisted or molded into such a way that it could pick up anything on him, although all of us tried for over an hour to try to convince it to. The nurse called the company that delivered it but they said they had nothing else to offer at that time that would work any better. Ofcourse by this time it was after 9pm and where did that leave us? The nurse said we either could stay up all night to watch him, make sure he kept his oxygen in his nose and wasn't having any evidence of breathing problems or we take him back to the hospital through the ED.

Well obviously we chose to stay up with him all night, which was nerve wracking not knowing what his oxygen levels were and making sure he kept the prongs in his nose. I also happened to be talking to a dear friend who just happens to be a paramedic and she was able to get us a small battery powered pediatric oximeter that we could at least do periodic checks throughout the night which was a Godsend, THANK YOU Vickie!!!!!

After about a half dozen calls yesterday, we finally got a monitor that worked better on pediatric patients. Nothing is perfect but at least we can have him hooked up to it all day and it alarms us when his oxygen level drops which is usually because he has yet again managed to take the prongs out despite all the tape that we have plastered on his poor little face.

We already have a love/hate relationship with the new monitor and the sensors are still not the greatest and we continually have to switch back and fort between trying his little foot or even his hand to get a good reading. When we've used this monitor and the portable one, the readings don't always coincide and could be 5 points off even so its terribly frustrating not knowing if we can even trust the monitor but ofcourse its the best shot we have knowing how he is doing.

The pulmonary team was fairly confident that he would only require extra oxygen for another week or two at most and depending on his levels, we should be able to start tapering it soon (hopefully). But ofcourse we are looking at this monitor and wonder how accurate it is and how confident will we be about trying to taper the oxygen based on the numbers its giving us.

The doctors are still looking at other possible factors as well. They did a cardiac echo before he left to check his heart function and are trying to rule out anything else that could be contributing. We are awaiting results. They say if he is not able to come off oxygen in a week or so then they will look harder at what might be going on. What is more frustrating to me is that he's really back to not eating well, alternating fighting us or just letting the milk run out of his mouth. We've called GI again and are still trying different things for reflux in hopes that we can turn this train around but to be honest, if we thought we were tired and drained before, well I'm just not sure how to even describe this.

We know this is a temporary state and that we will get through this that much stronger at the end. We are incredibly grateful that we are not facing any of the other circumstances like pneumonia or RSV or anything worse. As always we are buoyed by the love and support of our wonderful friends and family that continue to see us through.

Hospitalization

Just a brief update. We brought the boys to their regular GI follow up yesterday morning and things kind of fell apart from there. While we were getting Alex undressed and weighed, we noticed that it looked like he was really working hard to breathe. The doctor was able to get an oxygen level and it was only reading in the seventies. We are not quite sure still if that was accurate but after several different oxygen checks, it was clear it was much lower than it should be. The clinic and our pediatrician were wonderful about getting things facilitated, getting him a STAT chest x-ray, a pulmonary consult and then finally getting him admitted right from the outpatient clinic instead of having to do the "normal" process of going to the emergency room and waiting for a bed. We are soooo grateful for everyone's understanding and compassion of trying to keep our babies as protected as possible. Alex did finally get a "bed" at 6pm lastnight and he remains his sweet self. Besides his disinterest in eating, there has been very little observed change in him, except now knowing about the oxygen level.

We've now met with the pulmonary specialists and they've run some more tests. His x-ray is clear of pneumonia so that is a huge relief. It does show scarring on the lungs consistent to his BPD which is not a surprise and a little bit of fluid. They've also run cultures and fortunately everything has come back negative so far. The pulmonologist believes that he might have gotten a mild virus and it was enough to inflame his lungs. He continues to need oxygen still and we are hopeful that this will improve and we can get him home very soon. They are looking at his medicines and are increasing one of his pulmonary medications, and if that doesn't work they may start him on some diuretics.

We knew something wasn't quite right with him during this last week but we would have never guessed this. My heart breaks thinking we missed something along the way. We worried that something like this might happen, but we thought we'd at least get further into the season. Right now we are just taking things a day at a time and we are just so thankful that Alex doesn't seem to be uncomfortable, except for the occasional swipe at the tubes up his nose, but who can blame him there. Mark and I are taking turns spending the day and night with Alex while the other is with Nicholas. As if we weren't nervous enough, we are now extra conscious of trying to keep Nicholas protected and pray that whatever is going on with Alex can be spared his brother. We would be very grateful for continued prayers.

Blessings!!!

NICU graduates

This week our boys have decided to flip flop on us just to keep us on our toes. Nicholas overnight has started taking his bottles like he hasn't eaten in days, draining it much faster than his usual. He still gets ahead of himself at times and gags and chokes but were quite happy that he at least is acting hungry. His weight check this week went up an ounce a day to seven pounds, 14 ounces. He is catching up quickly to his brother.

Alex however has had a week very unlike him. Just as abruptly as his brother changed in one direction, Alex seems largely uninterested in feeding. We are taking a full hour at times trying to get even two ounces in him, when he used to chug 3 to even 4 ounces a feeding. Alex has never been one to miss a meal so we are concerned. At times we feel like we're really almost force feeding him because he wants to stop after half an ounce or an ounce. We've been to the pediatrician, and even called neurosurgery with concerns about the shunt but were just not sure what is going on. Otherwise he's acting very much like his sweet self so maybe its just a short phase. His weight check with homecare was only eight pounds, 3 ounces, just an ounce more than his weight check with them last week. With our persistence, he is eating a bit more the last few days. We have lots of appointments this week including GI, Neurosurgery, and pulmonary so hopefully someone will have some ideas.

We had an appointment with urology last Friday which lasted almost two hours. We loved our doctor, and didn't realize it was someone who had already worked with Alex before in the NICU so that was a nice surprise. He took a lot of time with us explaining what was in the future for Alex. Alex will be needing some scans to check his kidney and bladder function again just to make sure that everything is working okay given concerns he had while in the NICU. Children with Spina Bifida we've learned commonly have problems relating to this so we are reassured that this will be monitored closely. We also spoke in great detail about Alex's hypospadius and corrective surgery he will need when he's bigger, about a year old. The surgery will be more extensive than we anticipated and he may need more than one surgery but time will tell and we are confident he is in good hands.

While we were there we also just asked the urologist briefly about Nicholas since he has yet to be circumcised since his hernia surgery. Fortunately the urologist was nice enough to sneak in an evaluation and discovered that Nicholas too needs more than just a simple procedure to have everything as it needs to be. He too will need a surgery when he is older, again about a year old but not as complicated a surgery as his brother. I have to admit I left this appointment feeling a bit saddened that more surgeries loom in their future. We want nothing more than to have all of this behind them but I hold onto the fact that they will still be young enough hopefully not to remember all of this.

On a great note, today we had over some of our favorite people that we were fortunate to get to know while in the NICU, along with their little ones. We had a wonderful time catching up and seeing the other NICU "graduates" that we once kept almost as close tabs on as we did our own babies. It is so wonderful to see everyone growing and doing so well. Seems like a lifetime ago we lived in the NICU, and yet we've really only been home about a month.

I know worrying goes along with the new job description of being a parent. We talked about this today with our other NICU parents. Ours may be a little more intensified ofcourse because of the very hard start all of our children had, so to say I'm a little stressed about the upcoming cold/flu season is a HUGE understatement. The boys doctors and the NICU staff drilled it home to us that this will be the hardest season to get through, the first season for the boys. They look like healthy full term babies now but their immune systems are so far from it. Ironically they are too small to get many of the vaccines that might help keep them healthy and yet they are the most vulnerable.

It is up to Mark and I to do whatever we can to keep them healthy which means for us and our family to get the flu shots, keep away from anyone who is sick, and also to minimize crowds and handling of them to try to keep germs and viruses at bay as much as possible. I know this is disappointing to the many people who have been following their progress and no doubt want to give them a squeeze or get their baby fix but please know we are not trying to be "stingy" with them, but instead do what is in our power to get them through this first critical year and let their immune systems and lungs mature. We have been cautioned that with their BPD (lung disease) even a simple cold this first season could be very hard on their lungs and frequently requires re-hospitalization for these very little micro-preemies. We know we can't keep them in a bubble, (Trust me, I've looked, can't find the real heavy duty ones) but if they do get sick this year, we want to know that its not because we weren't as vigilant as we could be for them.

Blessings to all!!!!

snuggle time

The NICU graduates---Thanks to Val and Sam for such a fabulous idea!!!!!

Our boys always seem to be so well behaved with company....maybe we should have them back more often, because ofcourse they made up for it for the next four hours as soon as everyone left, ha,ha. But boy they sure look sweet (and quiet) here :)