Saturday, May 30, 2009


I wake on this morning feeling very thankful! It was an incredibly difficult week that began with our son Alex's surgery. The surgery went wonderfully and we were just anxious to have the same surgery behind his brother Nicholas so both could begin moving on. The surgery for Nicholas was delayed due to concerns that he might have an infection. First it was thought that he had an intestinal infection, a very scary thought but luckily this has been ruled out. Then just when we thought he would be cleared for surgery from this scare, we came in to find out that he was being moved to an isolation room. It turns out that he has something called "ORSA".

I feel bad for the staff who have had to tell me ANY new diagnoses or even change lately; these days they could tell me that their hair color looks ummm.....just a little bit different and I'm afraid I'd freak out. Any news these days seems just enough to put me over the edge and they have to explain very fast to reassure me that this is not as serious as it sounds. It was explained to us that this just means he has a bacteria found on his skin (found on many of us actually) that is resistant to certain antibiotics. He is not being negatively impacted by this, he is not sick from it. This basically means if it were to get into his blood stream, they would have to use different types of antibiotics to treat him. They mostly are just being very cautious, and the isolation room is really to protect his room-mates from getting the same thing. Ok, I could breathe again. It saddened me that I could not visit him and his brother in the same place anymore but that is something I could deal with.

Remember that roller coaster ride I was telling you about? Still on it. Just a short time after this, they stated that Nicholas's surgery had to be delayed again because his arm was reddened where an IV was and they worried that perhaps this was infected. So at a minimum, we had another 48 hour wait to see if he indeed had an infection or not. Keep in mind we've been told at least three times in as many weeks that Nicholas might have an infection, that turns out each time has not. I do understand that they need to be very careful and that they can't take a little baby in for surgery if he has an infection, but a red area on his arm? I wanted to shove my arm at them and show them where I just had a blood drawn, and it was still red where the tape touched my skin for a matter of a few minutes several hours earlier. If my little one has my skin sensitivity, we are in big trouble with these folks. I managed to bite back my frustration and respectfully ask whether this redness on him could in fact just be a skin sensitivity, and they agreed it could, but we'd just have to wait and see. I know we all want the same thing and I know I can't take my frustration out on his care providers, thats what husbands are for, right? (sorry honey).

We then found out on Thursday that Nicholas in fact does not have any infections and has been cleared for surgery. YEAH!!!!! The catch? Now they don't have a place to actually do the surgery. There is no room in the isolation room for all the equipment and staff needed. The operating room is full and the NICU room can't be used for Nicholas like it was for his brother because of all the other babies in that room due to his ORSA. So now we may have to wait until next week just to find a place to actually do the surgery. It didn't help to find out from one of his nurses that other hospitals don't even separate babies with ORSA because it is so common. This is simply maddening and I spoke to one of the doctors about it. She agreed to speak with the medical director to see what could be done.

Well, that was just a taste of how a few moments in our week have gone, just enough hopefully for you to appreciate how beautiful the week finally ended: Thursday night the medical director decided to make our NICU room the "ORSA" room and brought the babies diagnosed with ORSA, including our Nicholas back into the larger room, enabling them to have a place again for his surgery. They also decided to let his brother Alex stay in the room with him, they will take precautions with him but to be realistic, if Nicholas comes home with ORSA, his brother will be sure to get it anyway.

Friday morning, we got a call at 7am that they assembled all the people they needed for the surgery and it was going to happen, oops in about thirty minutes, could we get there? There might have been a few expletives going off in my head, a couple might have even slipped out but I think only after I hung up the phone but the important part was our baby got the surgery he desperately needed and we are sooooooo thankful that the staff thought so creatively and so many moves to make it possible.

Thanks to the phenomenal nurses, doctors, and ofcourse all the prayers being said in their names, both boys are recovering now. We are so hopeful that they will be feeling better and now have a chance to grow and keep getting stronger.

Sunday, May 24, 2009

Upcoming surgeries

We learned for certain that not one but that both of our sons will have to have the surgery to repair the vessel in their hearts. The team is hoping to do this on Tuesday. I feel very conflicted about this. Obviously I do not want them to have undergo any surgeries, they are so little, having just tipped the scales over two pounds each. I think about Alex who has already had to undergo and recover from one surgery already in his very brief life, now another one. The other part of me is feeling strangely relieved at the thought of surgery because hopefully this means having them finally get better and start to make gains.

Because perhaps that is not enough to worry about, we also received a phone call from the hospital at two in the morning sharing concerns about Nicholas and problems with his intestines. Originally I think they were concerned that this was very serious but seems by the time we got there this morning, they had ruled out the most severe causes. It looks like the liver is producing bile that is not going through the intestines but getting backed up in the stomach. They are still not clear what this is (infection, blockage?) and are running more tests. It could be a side effect from the medication that they had been using to try to close the vessel in his heart. We are anxiously waiting to hear word from the surgeon and praying that this doesn't delay the treatment/surgery that he needs for his heart.

The hardest part perhaps in all of this for me at least is watching my baby become more expressive. Both boys are becoming more alert at times, but Nicholas in particular is now showing me signs that he is feeling distress. He has had even more scans, blood work, pokes and prods by numerous hospital staff the last couple of days and I've actually seen him grimace and frown and look like he could cry if he were able and ofcourse seeing this, is enough to pull my heart right out.

At some point, I'm sure every parent with a sick child wonders why their son or daughter has to be the one struggling such a path, whether that child be an infant or an adult. Life just seems to have a way of asking questions that we will never learn the answers to. It is in these dark moments that the feelings of anger, bitterness, fear, sadness, and guilt all surface. I wonder why my body did not provide a better environment for my children to stay and grow, why it couldn't be a safe haven for them but instead they had to be ripped out into this hard world. I miss being pregnant; for days after my sons came, I kept touching my stomach unconsciously like I had for months before to feel them move only to be suddenly reminded that they were no longer there. I am told that this is all quite normal given everything that has happened. I try not to let myself languish in these moments, for they don't do any of us any good but like everything else, some days its harder than others.

It is a very strange mixture of happiness and grief when you give birth so very early, an incredible three months early for my sons. Obviously the sheer happiness at seeing your children in the world is unparalleled, but its also coupled with the grief of seeing them struggle with tubes and monitors and all kinds of lifesaving equipment. At the same time I am reminded that it is because of this very technology and the expertise of the amazing NICU staff that my children have a chance at all. Well, that and all of the prayers being said in their name. I know that my sons being born at 28 weeks have already defied the odds and I know that with God's help, they will continue to do so.

Wednesday, May 20, 2009

NICU Rollercoaster

We are just 18 days into life at the NICU and I'm ready to get off of the NICU rollercoaster ride, I honestly don't even remember signing up so please...a little help? I know I need to be and am incredibly grateful that the boys are in the best possible hands, and we've met some of the best nurses and doctors who have taken us and our sons under their wings. But in all the years that we dreamed of having our family, it certainly didn't include nor prepare us for this. I go and look at these beautiful, amazing boys in their tiny incubators day in and day out, I ask about them, learn all kinds of medical jargon, ask a million questions of the nurses, doctors and try to be the best advocate I can be but I don't yet feel like a mom. I mean my heart overflows with love for them, dreams for them, a desperate desire to kiss their wounds and make everything better for them...but I feel so helpless. I can't pick them up to comfort them, I can barely touch them without "permission" and even when I talk to them, I am at risk of "overstimulating" or agitating them. I jump at every opportunity to help change their diaper, their bedding, or take their temperature but most of the day I just sit there and watch them behind the Plexiglas, listening to all their alarms sounding when their blood pressure or breathing is not normal, or watch when one more person comes to do blood work, another test, another scan. I'm too scared to even let myself dream of the day we might be able to finally bring them home, it seems like they have to overcome so much.

Even when I first arrive for the day and think they are stable and things are going well, there is not one day that we haven't left before hearing about one of the boys needing one more test, one more possible diagnosis, or another new medicine or treatment. Every day blurs into the next day, and I come home completely spent not having "done" anything. There are a hundred "tasks" to be done, a dozen people who want updates and calls back. Everyone says to call when we need help or wants to know what can they do. I'm so grateful for their love and support and I feel guilty that I don't even have the energy right now to figure it out, or to return those calls.

The doctor says Friday we will learn if either or both of our sons will have to have surgery to close the vessel that is open in their hearts. They are each on their second course of medications to attempt this but surgery is the next option. He reassures me that this is not an overly complicated procedure and recovery for them would only be a couple of days. In my heart, all I can think of is I don't want either of them to have to go through one more procedure no matter how "uncomplicated" it is. Its more anesthesia, more cutting. My head has to remind me that if they are struggling and this will help them, then lets get on with it. (My head is just not working as easily as my heart these days but I'm told that it has a lot to do with being a parent). The doctor says if we can get this vessel closed, either with the medication or the surgery, then they can get on with the treatment that Nicholas needs to help with all of his respiratory issues and both boys can begin feeding. Surprisingly he says that Nicholas has the longer road due to all of his respiratory issues and to be patient, both boys will need to remain in the hospital for at least several months. How do parents do this? I mean I know you don't have a choice or anything, but literally I wonder how do people get through this time, watching their babies struggle with even the very basic of things and being able to do very little about it? It is heart wrenching.

Yikes--- I apologize that you've wandered into Holli's pity party, but to be honest, it does feel better to get some of it out. I know these are the times that I have to remind myself this is not forever, and there will be days where things will actually move forward for them. I know they need their mommy to be near them even the days that I'm not allowed to touch them or hold them, I think and hope that they can still sense that I'm there. And I love just watching them even wriggle and move. Nicholas loves moving his tiny hands and feet everywhere and even bundled up, manages to escape the wrapping. Alex likes moving his hands, touching his face, his head as well and recently discovered how much he enjoys his pacifier. (Its the tiniest pacifier you ever did see and he needs help keeping it in his mouth but he will work at it for over a half hour if you let him). These are the moments I know I need to focus on when I need to re-energize and for anyone else who also finds themselves on the NICU rollercoaster ride, it really is true what everyone says: One day, sometimes one hour or minute at a time. Just breathe.

Oh....and let me never to forget that these are the two amazing reasons that we will do whatever is required of us, always! We are so blessed to have them simply in our lives!!!!!

Alex's close up

Nicholas out of his incubator for a few priceless minutes!

Saturday, May 16, 2009

Holli's first Mother's Day

My first Mother's Day was celebrated a day early on May 9th, 2009. I had been visiting our sons in the NICU and talking to Nicholas's nurse about his condition. He continues to be struggling from issues with his blood pressure, and respiratory status but his nurse reassures me that these are very common issues for babies born as early as ours and hopefully will not have long term effects. Ofcourse I have been wondering like any new parent, and especially a NICU parent--how long until I can hold my baby in my arms. When your baby is born full term, most parents get to have that contact almost immediately but because of how early and small our babies were born, and all of their health complications, no one ever really told us when it would be possible and we really had been to afraid to ask, fearing to hear how long it might be.

Somehow on this day, I finally got the nerve to ask, how long might it be before we could hold our babies for the first time? I wasn't sure what I expected to hear. I thought "possibly a couple more weeks", or "lets see how things go". Instead, the nurse was looking over Nicholas's vital signs and said "He's pretty stable, why don't we try it now?" My heart felt like it was going to jump out of my chest and I was afraid for a moment that I misunderstood until he came back with a sweetly knitted blue cap. The nurse explained to me that each of the nurses were different when it came to comfort level of taking these micro preemies out for holding (basically don't expect this often right now) and that really one of the biggest issues in babies this size was their inability to keep their body temperature up so he prepared me that I may only get to hold him a few minutes and see how things go. I would settle at this point for 5 seconds if I could just touch him and whisper to him without the thick Plexiglas being in the way.

It took what seemed like forever for not one but two nurses to prepare everything needed to bring my baby out of his incubator and into my arms. I almost felt guilty that they had to do all of this for just a few minutes for my own pure joy. I was also wondering if Mark would get back in time to see this and boy was he going to be jealous....but really all of those thoughts disappeared the second they placed Nicholas in my arms. I couldn't believe he was really there, certainly I could barely feel him since he still weighs under two pounds. But I could touch him and whisper to him and stare at him without anything in the way. It was the most amazing day. Mark did make it in time and I love him even more for not being upset that I was the one getting the first try at this, rather he was genuinely happy just watching me with our son. I held him for about 15 minutes but it was 15 minutes of bliss!

The only thing that saddened me on this day was the longing to also hold his brother, and with his medical issues and needs for healing, I know that it will be some time before we are allowed to have this experience with him. But Alex is making us so proud, he continues to surprise all of the medical staff with how well he is recovering from his surgery, and the preemie issues in general. I will be patient and wait until he is ready and continue to thank God for our two incredible miracles!!! I look so forward to the future where Mark and I will be sitting together, each of us holding one of our sons close to our hearts.

Thursday, May 7, 2009

Alex's Surgery

Monday, May 4th.

It's hard to comprehend that our sons were less than 2 days old when the doctors had to start talking about surgery for Alex, to close the opening in his spine. We ofcourse knew this had to happen due to the spina bifida but at the time we were learning about it, we just assumed that he would be much bigger and stronger. Talking about doing surgery on one of your children is terrifying enough, talking about it in the context of a less than 2 pound baby already hooked up to seemingly every wire and machine was very hard to wrap our minds around.

We knew that time was of the essence, every hour that went by where his back was left open meant higher and higher risks for infection which could lead to devastating outcomes. Ofcourse they also had to explain all the risks that came with anesthesia and surgery in a baby this small. Ultimately everyone agreed that to give Alex the best possible outcome, surgery had to be done and waiting even a couple of days could be detrimental. Surgery was scheduled for that afternoon.

With the help of several incredibly compassionate NICU nurses, we were able to page the NICU chaplain and have both the boys baptized that morning. We hope to do a more formal ceremony in the months to come surrounded by our family and friends but felt compelled that this was the right thing to do for our sons as soon as possible.

The surgery was expected to take approximately two hours from beginning to end and time went by achingly slow. Just before they took Alex into surgery, they had an obligation to inform us of all the possible things that could go wrong and its pretty hard to stay positive in the face of all that knowledge. Luckily, we had our parents with us, we held onto them, eachother and our faith. I'll never forget when the surgeon walked into the room afterwards, I don't think any of us could take a breath and he didn't have the type of face you could read. But when he said things went as well as could be expected, there was such a huge sense of relief that somehow could be physically felt by everyone.

I know this road is going to be a long one for both of our sons, and Alex in particular has some very special challenges. I wish I could take the struggles from them, my heart aches to make things better somehow. We are not allowed to hold them and have barely been able to touch them due to their under developed nervous systems and how easily over stimulated they become to even light or movement. So we sit next to their incubators, tell them over and over how much they are loved and pray that they can feel our presence and that its enough to comfort them somehow.

Boys have arrived

Where do I even begin? It has been quite a roller coaster ride and one that will likely continue for some time. Everything was calm for days last week and we were feeling very optimistic that we would be able to continue the pregnancy further and further. Last Friday, everything started to change quite quickly.

One of the routine monitoring sessions on Friday night did not look good at all, both boys heart rates were dipping at times and within a matter of minutes, they transferred me back to the more active labor and delivery unit. Adrenaline really kicked in when we got over there and the room was filled with doctors, nurses and even anesthesiologist. Everyone was trying to be calm and reassuring but their expressions did not match their words. I was put on oxygen, a newer IV was put in, more consents to be signed, etc. We really thought, this must be it. They whisked the mobile ultrasound unit in and looked at the boys positions, and for any other further evidence of distress, etc. Long story short the boys again looked just fine on the ultrasound and bio physical profile and heart rates were again stable.

I continued to have intermittent braxton hicks contractions, nothing that was bringing on labor or anything but Baby B still did not tolerate these well. They began giving me injections every six hours to try to calm these down and kept me on the monitors. Needless to say it was a VERY long night of constant monitoring and the "wait and see". Obviously the doctors wanted to avoid delivery if at all possible given how early we were but we knew the time was very near. Doctors said at this stage of the pregnancy, even every hour being kept in the womb was beneficial.

Obviously there was no sleep to be had again on this night as we kept our eyes glued to the monitors all night. By morning, things again were looking more stable and we were thinking maybe we could buy a few more days afterall. We continued the constant monitoring, the injections, etc. Things were so calm that my dad and Mark went home for a little while to get some more work done on the basement while my mom and sister and I passed the time watching TV, doing crosswords and knitting. By early afternoon, more docs and nurses were flooding the room again. They put the oxygen back on me and asked me to change positions several times while they watched the monitors. I knew it was serious again when they asked where my husband was and suggested that we call him back. I think my dad and Mark got there in warp speed. On the way to my room, they passed a rather large group of hospital staff dressed up in their fanciest blue scrubs talking and organizing. But by the time they arrived, the boys started to stabilize out again and the docs said they could not justify delivering this early if things were looking good again so we prayed that the roller coaster would calm and buy the boys more time.

The time that we bought unfortunately was only a couple more hours. Sometime after 4pm, Baby B was back to having numerous heart decelerations and it was happening more frequently and for longer periods of time. At this point the doctor wasn't willing to risk waiting any longer and within just a few minutes I was being wheeled down for surgery.

They started out trying an epidural and we waited for what seemed like forever, with the anesthesiologist repeatedly asking me "can you feel this, how about now?" And each time, I answered "yes". I thought it was odd when he asked me if what I was feeling was dull or sharp whenever he touched me, ummm even if what I was feeling was only "dull", that's still more than I wanted to feel when they are about to be using very pointy instruments. By this time, the stress of delivering my sons so early, and the thought of pending surgery, I have to say that I felt relieved when the team concluded that the spinal wasn't taking and I was given general anesthesia instead. I couldn't imagine having even one more minute to think and to worry.

On Saturday, May 2nd: Baby A--Nicholas Owen was born at 5:18pm weighing 1 pound, 12 ounces and his brother Baby B--Alexander Steven was born at 5:21pm weighing in at 1 pound, 10 ounces. We had to wait until about midnight before we could see them and it was the longest, yet most worthwhile wait in our lives. As scared as we are about their prognosis being born so small, we can't help but feel elated at becoming their parents. We are already so proud of just how strong they are, what fighters they have already shown themselves to be.


Friday, May 1, 2009

28 weeks

Today marks week 28 of pregnancy which even though early, is still quite an accomplishment. We obviously hope to go further but have to remember to count our blessings too.

I am still in the hospital and it certainly has its ups and downs. The best part is having such close monitoring on the boys. Whenever I get nervous that I'm not feeling them being as active or feel like I'm having contractions, all I have to do is push a button and someone is there to check and reassure me. On the flip side of the coin, there is a constant flow of people that come in the room even when things are going "fine". Someone is there to check your blood pressure and temperature every couple hours, then someone comes in to check fetal monitoring every couple hours (mind you this is throughout the whole night long and the only equipment they can seem to find needs some serious oiling and the squeaking seems to be amplified in the middle of the night), then your hooked up to the non stress test for an hour each morning and night, then you have the doctors coming in to check in with you every morning as early as 6am and again at evening time. Twice a week I go for more specialized tests off of the unit.

All of this on top of having a room mate who ofcourse has her own issues and different cycle of monitoring throughout the day and night and each of us using the bathroom a million times during the night and well you get the picture. My room-mate's IV machine kept wanting attention and proceeded to beep loudly about every hour overnight lastnight and the nurses couldn't figure out how to fix it so neither of us got much sleep. --Again you think with the amount of money they charge for every tylenol, and parking space, etc that they could manage to put funds back into newer machines that are less tempermental. Either way, every time we would drift off, there was another nurse coming in to check either her or I. It sounds crazy to say that I get to lay in bed all day but yet am still utterly exhausted. I feel like I spend the days almost in a fog, I have no idea where the time disappears to, and am feeling ridiculously unproductive. I keep trying to remind myself that in the grand scheme of things, this is such a short time in my life and for the best benefit of the boys.

As far as the boys, they seem to be holding their own. They have been doing pretty well on all the daily fetal monitoring tests and seem to like the bed rest, the braxton hicks contractions have significantly lessened as well which had been stressing Baby B before. We had another doppler test yesterday and Baby A's cord blood flow looks good and Baby B's is still concerning but at least not worse. We are anxiously awaiting Monday's testing which will again look at the blood flow and also their measurements to see if and how much they have grown. It sounds like we'll get an update with the next goal or plan after these results. We would be grateful for continued prayers!