I walked in on Tuesday morning and the nurses had written the sweet message on his board. Under plans and procedures they wrote, “Make all the nurses fall in love with me” and then checked it off. We love how much our boy is loved!
It was a great weekend for David! First, he turned one month old on Friday. A bitter sweet day for us (see ‘The first month‘ post). He celebrated the day by having his first MRI. We had long been anticipating this promised MRI. He had had a few ultrasounds and x-rays all hoping to better understand the mass that had been detected in his liver. The original thought was that the mass was an abscess. As I’ve written before, an abscess carries with it a minimum of 4-6 weeks in the NICU on antibiotics. Not exactly our dream situation. David had to be sedated and intubated for the MRI. It was an event in and of itself and I won’t bore you all with the details of that afternoon. I’m just glad my mom was with me to distract me from the whole event. Since the MRI was finished around 4:00pm on Friday we assumed we wouldn’t hear anything about the results until Monday. It takes about 237 people to take, view, interpret, read again, view another time, interpret once more and pass the MRI results to us (I’m exaggerating . . . . kinda) So imagine my surprise when I got a call from the Dr. at 5:00 that night. He told me that he, the radiologist and the surgeon had all read the results 15 times (His words) to make sure they all agreed and were interpreting them correctly. The mass they had seen on the ultrasound was determined to be an abnormal cluster of blood cells, NOT an abscess! He told me that abnormal blood cells are actually common in almost everyone, but since they are benign and clear up on their own, we often don’t even know about them. Had they not been so desperately looking for something to explain D’s infection, they would have never even found the mass. I’m sure I don’t have to tell you why this is good news! Rather than 4-6 weeks of additional antibiotics, the antibiotics David have been on to ‘fix’ the infection are all that are required. According to the docs, once the infection is cleared up, it’s business as usual for feeding and working toward home.
Yesterday, David’s replogle was removed and today, he got his last dose of his last of three antibiotics. And today he was able to eat real food! Well, not steak and mashed potatoes, but he drank milk. They are starting him off slow at 12mL and he’ll work his way up to 3oz. Once he can handle 3oz of milk for every feeding for 3-4 days, he’ll be free to come home! The lesson I have learned these last 11 days is to never get my hopes up. So, I’m not anticipating any particular date. I’m just feeling blessed by his advances and celebrating each step he makes. He is such a fighter and everyone in the NICU is rooting for him. I have a whole post in progress about the NICU but I’ll save that for another day. For now, THANK YOU!! for prayers, support, kindness and donations. We truly appreciate each word and virtual hug. You have given us the strength to be strong for him.
Our baby boy is one month old today! It’s a bitter sweet day because originally, we thought he’d be home with us by now. Instead we have potentially another month before that happens. But, we’re celebrating small victories and anticipating when that sweet day finally arrives. Here are some pictures of David’s first month:
A beautifully written post from my husband:
I believe in the underdog.
When I was a kid, I always wanted to be on the team that wasn’t expected to win. I wanted my opponents to not think much of me. I wanted them to look past me. I wanted them to not consider me a threat, so that when I beat them it would hurt them as much as possible.
An underdog can play with a freedom that is not afforded to the favorite. An underdog can take chances. An underdog can be aggressive at all times. An underdog is allowed these opportunities, because if an underdog loses it was what was expected.
I’ve been an underdog as an athlete numerous times, but rarely have I ever been an underdog in life. My wife and I became parents for the second time one month ago. Our baby boy’s name is David Henry. He is an underdog.
David is an underdog, because he was diagnosed with Down syndrome while still in the womb. Roughly 95% of fetuses diagnosed with Down syndrome are aborted. David was an underdog who became one of the 5% who survive.
David is an underdog, because he was born prematurely, with a condition termed Duodenal Atresia. This condition left him with an incomplete intestinal track and an inability to process food. Bile gathered in his stomach and lungs, instead of progressing through his intestines. He underwent surgery less than 24 hours after he was born, to repair his intestinal condition. Again, David was an underdog who survived.
David is an underdog, because the doctors recently found an abscess in his liver. This abscess trapped David. He became septic and required multiple blood transfusions, as well as a variety of antibiotics, medications, and 100% respirator support to breath. His doctors gave him a 50-50 chance at survival and confessed that if he was born 10 years ago he would not have made it through the night. But, David is an underdog and a survivor.
David Henry has taught me more about underdogs than I ever imagined. He has endured more in his tiny lifespan than I would wish upon my gravest enemies. He is a beautiful boy, who makes being an underdog something to celebrate and cherish. I am proud of my son, the underdog. He has proven to me that winning is always an option, no matter what the circumstances may be.
I believe in the underdog.
I believe David can defeat Goliath.
I believe in my boy.
I’ve heard before that it is impossible to dream of your own death. The human brain cannot wrap it’s mind around our own mortality, so even if you have a dream that you are about to die, your mind will not allow you to dream that you do die. Whether or not this is accurate, I think the same must be true of mothers and the death of their children. Our brains cannot allow us to comprehend that scenario. On Thursday, I came very close to that reality. Even when David was truly at deaths door and I was having very real conversations with the Dr. about his prognosis, I couldn’t actually wrap my mind around that option. There were many times when I felt as though I was an observer of the conversation as opposed to a participant. At no point could I actually speak the words and so we both kept talking about “survival”, “percentages” and “what his body could handle”. My chest tightens up with emotion and fear just remembering it.
At one point in the day I thought to myself, “Is today going to make me stronger when I get through it, or are the end results going to kill me?” Thursday was a turning point, but I didn’t know which road I was going to journey. The day came to a head for me when at 3:00 the Dr. practically pushed me out the door and insisted I go downstairs and get something to eat. David hadn’t stabilized at this point and according to the Dr, we had a “50/50 chance” of him surviving. I was holding his hand and stroking his hair. I told her, “I feel like I’m on one of those cheezy game shows where the contestant who can keep their hands on the car longest, wins it. I don’t want to take my hands off him because I’m afraid I’ll lose.” She walked with me to the elevator and made me promise I wouldn’t come back for 15 minutes. When I was down in the cafeteria, I couldn’t even focus on the food choices. I wasn’t the least bit hungry and I couldn’t remember what half of the items tasted like. At one point, I was standing in front of the cooler trying to pick something to drink. I almost reached for the orange juice, thinking I probably needed some Vitamin C and energy for the long night ahead. But, I stopped when the thought entered my mind, “I don’t want to remember that I was drinking orange juice on the day my son died.” I opted for water and grapes and didn’t finish either.
David is doing much better today. It was a terrifying day and we are not out of the woods yet. He is off his stabilizing blood pressure medication. His respirator has been turned down to 30% and they removed his catheter this morning. The Dr. just called me with the results of his ultrasound. It looks as though the abscess in his liver is getting smaller and now they’re curious if it really is an abscess or a collection of abnormal blood cells. When David can recover enough to be placed on the lower level respirator, they’ll be able to do an MRI to get a better idea of what the mass is in his liver. He is improving and he has shown us what a fighter he is. I was afraid on Thursday that his calm nature and sweet spirit meant he didn’t have any fight in him. He has already proven me wrong and I can’t wait for him to do it again and again.
Another post from the NICU (I’m going to need to start bringing my laptop)
David is doing MUCH better! He had a good night. He’s off one of the BP drugs & they’re planning on reducing the others today. His BP is 60 which is actually a little high so they’re ahead of it enough to bring him down a bit. His respirator is down to 74% from 100% so he’s breathing on his own a lot more. I’m waiting for the Dr to stop by & tell me what their MRI or ultrasound plan is for the weekend. The prayers are working and we are so grateful!!
Warning: I’m writing this post from the NICU so it may be full of spelling & grammatical errors.
I went home to change this morning after David’s day nurse told me he’d had a rough night (I figured I may have another long day at the hospital) When I walked back in there were 5 nurses & 2 Drs in his room & they suggested I not come in. The Dr sat me down & said she is concerned. They’re not sure what’s going on, but he’s ‘worse’ than yesterday. His platelet count is WAY down, his blood pressure is very low, he’s been holding his breath, his output of bile from his tummy has increased to 50 (from 20 yesterday) & they’re suspicious he’s septic. They were inserting a breathing tube when I walked in. They have decided to do an MRI instead of the ultrasound to get a better picture of the abscess & anything else in his stomach & liver. Right now, they’ve given him medication to raise his blood pressure & depending on how quickly it raises, they’ll do the MRI. They started another antibiotic & gave him some morphine. His color is much better & he is comfortable & calm. No joke, this poor kid has 5 IV’s in his extremities & 2 tubes in his mouth. They have just brought in an extra set of pumps so now there are 5 machines trying to get him the fluid, medicine & blood he needs to increase his BP & keep him calm. The echo came back ‘clear’ & once his BP FINALLY increases they can do the MRI. The Dr was thinking she’d like to pull a little fluid from around his liver to test but right now there’s not enough & the risk is a little too high. He’s on 2 antibiotics & his BP is SLOWLY climbing.
The doctors have determined that David is sceptic. I’m sure I don’t have to talk about how terrifying this is. I have had at least 3 of the conversations that no parent ever wants have; what David will survive & how to know when everything has been done that can be done. I’ve cried all day tempered with moments of numb. He’s SLOWLY improving but even remaining stable is a small victory. We were told at one point today his chances were 50/50. Tonight is a critical night.