blog@milenka.com

Saturday’s visit with Fox was really nice.  We got to hold him for around 3 hours, and Lucas actually got to feed him for the first time.  Of course, feedings involve a syringe and tubing, but still.

Sunday was a long, long day.  It wasn’t bad, but we discovered just how much the girls hate car trips and just how unwilling they are to nap anywhere except their cribs.  They had tons of fun out of the car, though, so it was worth it.

Today the news is that something in the boy’s bloodwork was elevated, though apparently it wasn’t his white count.  Lucas says he would remember if she used those words, so it was something else.  Anyhow, they suspect infection and have begun antibiotics.  Also there is something happening that I’m unclear on at the moment involving his belly girth.  Lucas came to me with the information that the boy’s belly girth was up, that it was due to the TPN, and that he had been given phenobarbital to resolve the issue.  Now, I’m no doctor, but my googling doesn’t find any information on these 3 things going together.  I’m wondering if he misheard something.  I cannot wait until tomorrow when I can be there in person and write things down.  I believe that they’re still feeding him 15cc every 3 hours at the moment.  In the meantime, another infection doesn’t sound like a good thing.  Even if it’s not an infection, he’s still sick and dealing with something.  How often can he fight this crap off and make it through?  It seems like he gets sicker the longer he’s there, not healthier.

The boy is one month old today.  I will not cry.  He’s still fighting, and that’s the most important part.

He had more bloody stool on Wednesday evening.  They don’t know why, and they don’t know if it’ll progress into another “infection” the way the last incident did.  We pretty much just have to wait and see.

He’s up to 11cc every 3 hours now, though probably more at this point because they give him an additional 1cc with each feeding if he tolerates the last one okay.  I need to get more information tomorrow in regards to what exactly they’re feeding him.  I’ve seen people speak of fortifiers and such, but no one has mentioned any of that to us.  Shocking, I know.  He did have some issues yesterday with residual, so they kept his feeding the same for a couple of times.  Apparently it’s getting better, though, with the increases.  I want him to learn to digest real food, and then perhaps he can try a bottle, and then perhaps he can come home.  I know it’s not that simple, but the bottom line is that he cannot even think of coming home if he’s not tolerating anything other than iv nutrition, and learning to eat from something other than a tube would certainly be a preferred method if he were in our home.

Very busy weekend coming up, and I’m still exhausted from the past week.  Tomorrow we’re going to the hospital for the day, and we’ve thankfully gotten someone to watch the girls.  Childcare was a bit of an issue for this week because most of the people I trust with my kids were either out of town or working.  Sunday is the family gathering at Lucas’s Dad’s home that I promised his Grandma we would attend.  I have nothing against gathering with his family, but the drive, the money, the idea of my kids without a nap all day…ack.  I only hope I can get decent photos to show them someday because who knows when we’ll get down there again.

Bea got her boss to commit to Tuesday off for her, so I’m planning a trip to Saginaw.  Very excited to see the boy more than once in a week!  Thank you all again for making it possible!

First off, thank you all. I will be thanking the people who sent donations via paypal privately via either email or snail mail, but I just wanted to put a blanket thank you out there. Thank you to the people who have sent donations. Thank you to the people who have sent comfort and prayers and blessings. Thank you for every positive thought and every shoulder you’ve loaned me. Mostly, thank you for letting me muddle through this without fear of judgment in this one space. It pains me to even admit that we’re struggling. Help is not something that I’m used to asking for. Honestly, the only reason we’ve even been able to afford our Saturday visits this far is thanks to my Aunt who insisted on sending a monetary gift when Fox was born. The boy is here and hopefully not going anywhere, and I will not put my own pride above his needs. I expect nothing from any of you, but I am thankful for everything that has been given. Money is not the only thing that matters, and hard times do not last forever. That said, if there is anything that I can do to give back, please feel free to let me know.

So today was one of those days where you just don’t want to deal with the bullshit anymore. Unfortunately for the girls, both Lucas and I were having those days. It’s a good thing they’re happy kids and can shake us out of a bad mood, huh?

My day was pretty much about speaking with the NICU Social Worker and looking into various ways that I could spend more time at the hospital. If money isn’t an issue, then renting a car and staying at the hospitality house is a good option…if I can find childcare here at home for 2pm through 8am. With Bea having put herself out so much financially while I was pregnant to be here with the girls, I’m just not sure that we can swing that. Of course, if she can get a day or two off per week, then that would work. She only got one day off last week, though, and she didn’t get one this week. While I’m still looking into things, the only definite option I’ve found is simply leaving here at 8am by myself and getting home around 2pm. I would be able to get at least a couple of hours with the boy before I had to get home to relieve Lucas of childcare duties, depending on how late I was running as far as actually leaving at 8am. The gas costs would be a killer because it’s around $25-$30 to refill the tank to where it was pre-trip with current gas prices fluctuating so much, but I could do it at least once a week for a few weeks with the donations we’ve received. I figure even a couple of hours once per week is better than nothing, right? But, yeah, it was difficult to run through the options and realize that I really cannot make it happen on my own. I like to be the one who fixes things, you know? Blah.

The SW conversation was lackluster for me. She didn’t realize that Fox was even eligible for SSI based on his birthweight because she looked at his gestational age and assumed that he was over 2 pounds when he was born. Umm, no. She gave me several numbers to call about supplemental Medicaid, SSI, and WIC. I’m depressed just thinking of those calls and the fact that i can hardly hear what people are saying on the phone in the first place. I had hoped there was an office I could go to or paperwork I could mail in to avoid the phone thing. One of these days I need to get a proper hearing test and fix this problem. But, anyway, if the boy is approved for Medicaid, then our copays should be at least mostly taken care of by that, as far as i understood. Of course, it takes 6-8 weeks to get approved, so we’ll see. Since we, the parents, do not have Medicaid, they won’t reimburse us for gas mileage or give us gas cards to visit. She cannot help with WIC because we’re in a different county, but she gave me a contact here to call. According to the website, we should qualify for a family of five. Assuming that the boy is on the ridiculously expensive formula that the girls had…well, I remember what it was like to pay $15+ per day to feed my children. Honestly, that formula had a lot to do with our current mess. The SSI is a bit of confusion to me. They won’t give you money while the child is hospitalized, but then the payment once he’s out depends on income. If we don’t qualify based on income and only on the fact that he’s been there for 30 days…then what’s the point? Also, we were told to not expect his Social Security Card for 3-4 months. How does one get that all sorted out without a soc? This is why I had hoped for an office to visit for this crap. Tomorrow maybe I’ll wake up ready to tackle all of this, but today I’m just overwhelmed.

Lucas, on the other hand, got to deal with the nurse and doctor today. The nurse was telling him this morning all about how the cultures came back days ago and there was no sign of infection. This reminded him that we have *never* been given the results of any test or procedure at all unless we have asked. Remember how they did the Day 7 brain scan and never told us how it went until we asked? And how they told us they weren’t going to give the second dose of Indocin but then did and never mentioned it? Or how they took the boy from the delivery room and promised to call within an hour with an update but never called and never told us how to get to the NICU? Blood transfusions without mentioning them? Put him on a vent and never called to let us know? Getting the idea here? So Lucas is pissed and wants to have the boy moved, but of course it’s not an option. He kept calling every 30 minutes asking to speak with a doctor until they finally got one on the phone, and what did we learn? A bunch of nothing. If it wasn’t an infection, then why was he sick? No idea. It looked like an infection, so they treated it as such. Why was his white count elevated? Why was he anemic and in need of transfusions? Why the swelling? Why the continued difficulty in breathing? Pretty much we were told that it’s all within the realm of normal and we should trust them to do their jobs and not ask too many questions. So we don’t deserve straight answers about our son’s condition and treatment, but we get treated like shit when we don’t ask? I’m confused.

Lucas will call at 10:30 tonight to get the latest on his evening and weight change. I’ll try to update afterwards, but I’ve been pretty much falling into bed after that call lately. All of this complaining wears a girl out, right? Or would it be the twins who will be 21 months old tomorrow? My baby girls are 21 months old! How in the blue hell did that happen? We got to play with Miss Olivia Grace, Christina’s baby who was born in May, last Sunday. Not only did the girls adore her, but Lucas and I were in love. That’s what it’s like to have a baby in the house again. We nearly forgot. What with not having our baby here and all. Ugh. And there goes the anger all over again, you see?

I cannot believe that it was 4 weeks ago that I gave birth.  Seriously?  It feels like a moment has passed and yet an eternity that I’ve been unable to feel the boy moving around on the inside.  Odd.

Not much happening today.  No weight change, so either the swelling is going down or he’s at a standstill.  They resumed feedings today - 3cc every 3 hours.  We’ll see how he tolerates that.  He got up to 9cc before he got sick last time.  His oxygen is higher than ever at 30%, but I’m trying to ignore that.  One day at a time, yes?

The doctor called at 7am Sunday morning and left a voicemail, so we were unable to ask our questions.  We have yet to speak to him and still really don’t know anything about the questions we had.  However, he did update us as far as saying that they planned to try to get the boy off the vent on Sunday and possibly begin feedings once the antibiotic course is over.  The vent was replaced with CPAP around Noon on Sunday.  According to the day nurse, the boy was quite agitated with the CPAP and kept tearing it off.  By 3pm they had given up and replaced it with a nasal cannula.  He’s running around 29% oxygen, which is higher than he has ever needed, but at least the vent is gone for now.  The nurse today told us that they did more bloodwork and x-rays this morning, but the results are not back yet.  As of last night his weight was up to 3 pounds and 15 ounces, mostly due to swelling.  He weighed a full pound less a week ago, and we know that he’s not really gaining that quickly.  For some reason they’ve only discussed lasiks and not actually decided to administer it again at this point, though he has received it in the past.

Many people have mentioned the Ronald McDonald houses to me, and I’ve been searching for a way to explain our situation without sounding like a whiner.  Pretty much I can’t think of a way, so I’ll just give you the facts and hope you won’t judge me.  There is not a local Ronald McDonald house to our hospital, but they do have a Hospitality House.  It’s $10 per day and is located 2 miles from the hospital.  My hope before I delivered was that i would be able to stay there regularly, if not every day, until the boy was discharged.  The reality is that it is impossible in our current situation for several reasons.  First there is the childcare situation.  Bea cannot really afford to continue cutting back her work hours and driving back and forth, so I don’t have anyone to watch the girls.  They aren’t allowed in the NICU for obvious reasons, not that I would want to wrangle them in a tiny room all day long.  Even with childcare, though, transportation and money are problems.  I can’t afford the $10 per day to stay there.  Even if the fee were waived, we don’t have a second car that I could use to get over there and then to and from the hospital.  Public transportation costs more money that we don’t have, and the hospital isn’t really in an area that I would want to walk a couple of miles in a few times per day.  I’ve played the “what if” game in my mind for weeks now, and there is always a flaw in each possible plan.  It’s simply not going to work out, and I’ve tried my best to come to terms with that.  My greatest hope is that the boy does well and is discharged in the next 6 weeks or so.  I need my family healthy and together.

In an unrelated note, the girls met their Great-Grandparents yesterday for the first time when Lucas’s dad brought his parents up for a visit.  I hadn’t seen them in around 9 years and really had only met them once or twice to begin with, as they live in Las Vegas.  It was a nice visit, and the girls loved them.  It was interesting to learn that Inara and Fox both share middle names with their Great-Grandparents.  We chose Louise because it honors both Bea (middle name) and my biological mother (first name), and it happens to be Lucas’s Grandma’s middle name.  Frederick was my Grandpa’s first name, and it’s also Lucas’s Grandpa’s middle name.  Funny how things like that work out.  The girls were also entranced by their Aunt and one of their Uncles.  Lucas’s dad remarried and has 5 kids who are younger, and an 11 year old and an 8 year old are great fun to pester.

We went to see the baby today.  All the nurse could really tell us was that he is very, very sick right now and isn’t getting better.  The swelling is quite bad now, and he is having a lot of green drainage from his belly despite being NPO for the past 4 days.  The nurse told us at Noon that we should really talk to the doctor to find out what is actually happening.  We waited as long as we could for him to speak with us, and he kept saying that he would come down soon.  Finally we had to leave to get home, and the nurse said that he would call us.  Not only did he not call, but we were told when we called back that he had gone home and would call us tomorrow sometime.  I especially don’t understand the lack of communication.  We have been under the impression this entire time that the doctor would speak to us if there was a problem or a change in the boy’s condition.  Apparently this isn’t accurate.  Apparently they won’t be telling us anything at any point unless we ask.  And only then if they decide to actually speak with us.

…I had a 1 pound son?

And then I had a 2 pound son?

I now have a 3 pound, 3 ounce son.

The nurse said he has some swelling but not much, and his output is good.

He’s still growing.

So I haven’t written because, honestly, I’ve been a mess. I still am but decided that I needed to crank out an update because the people here actually seem to care about my kid.

Where were we? Tuesday night, was it? At that point, I believe I was anxiety-ridden over the news that the boy had been put on a ventilator due to a suspected infection. And trust me when I tell you that I do see the ventilator as the enemy in the long run, after reading countless accounts of preemies who have developed CLD due to long periods of time being ventilated.  It pretty much scares the shit out of me, and thus it is Public Enemy Number One this week.

So, anyhow, Bea had gotten my voicemail and drove up Tuesday night with the intent of watching the girls and giving us money for gas to go to the hospital first thing Wednesday morning. I wound up taking a few sleeping pills and getting more sleep than I have in months. I couldn’t have imagined sleeping that night without drastic measures. Frankly, I was concerned that the boy wouldn’t be able to hold on until i could get there the next day. Lucas, of course, went to work. What’s the point of staying home with your wife, right? Nothing to be done, after all.

Oh, I forgot. The boy’s stats for the eve of his 3 week milestone were 14″ in length and 2 pounds, 14 ounces. His birth stats, for those who don’t recall, were 12.6″ length and 1 pound, 14.5 ounces. Not bad, small child. Not bad at all.

Wednesday morning arrived with no significant changes. Well, except that Bea would be driving me to the hospital, as Lucas had decided that he would stay home with the girls. I was angry, not understanding his reasoning at the time, and I’m still bitter about that decision. When we finally arrived at Nursery 3, the door was closed. Having never experienced such a thing, I waited until someone entered the room and asked if we were allowed in. No, we weren’t. It seems that another baby in our nursery (there are 5 babies in our nursery at full capacity) was getting ready for surgery, and the parents were in there with the doctors and chaplain. Of course, this is what I learned later, since no one could tell us anything, including whether or not it was my kid alarming behind that closed door.

Fox’s nurse started our conversation with “He’s about to receive another blood transfusion…” at which point I stopped her with an incredulous “Another? No one told us he received a first blood transfusion.” and she looked horrified and found a doctor to speak with us. Apparently his blood tests on Tuesday morning showed a level of 20 on something (I assume not hemoglobin, as that’s what I have tested and routinely run at 10) that should have been in the 30’s, so he was deemed anemic and given blood. The doctor explained that they had received the news of the elevated white count and realized that the boy was feeling too worn out to breathe properly on his own, hence the ventilator. He’s been running between room air and 23% oxygen so far, but the fact that they haven’t taken him off it or switched to CPAP or a cannula concerns me. The antibiotics will be a 10 day course, and feedings are likely to be withheld the entire time. Thinking of how much of a setback 10 days is makes me a bit ill. He received his third transfusion today and is likely to just keep getting more blood as they do daily testing. Daily x-rays to check for bowl perforation, among other things I have yet to google, have come back within the realm of normal, though not perfect. The doctor informed me that they’re watching very closely for NEC, which has been my biggest fear all along.

All at home is chaos, as per usual. The girls are wonderful and got to play in the rain today. We were on the deck playing in the sandbox when a storm popped out of nowhere and drenched us. Pagan was willing to follow me inside, but Inara wanted to dance in the rain. Not so strange behavior, as Inara was the one who loved the water and Pagan the one who feared it on Sunday when Aunt Toni came to take them for a day at a local lake.

I fear that the Reglan is not only interfering with the Zoloft but that it is also making the depression and anxiety a lot worse. If nothing else, it is certainly not increasing my supply. I am hovering at around 10cc total per day now. That’s with 6 pumping sessions. Less than a half of an ounce. Hell, the boy was taking in 9cc per feeding right before they made him NPO. Another 3 hours, and he would have exhausted my entire daily supply in a single feeding and been given formula three hours later. Ugh. I’d order Domperidone if it weren’t quite so expensive. At this point I’m at a loss. The Medela Symphony that I can use at the hospitals seems to work decently, but none of the places who my insurance will cover will rent out a Symphony. It’s the Lactina or nothing, and the Lactina doesn’t work any better than this Ameda Elite. My milk obviously never really came in, and I’ve never experienced letdown at all. Fenugreek does nothing except make me reek. Honestly, I’d like to speak with a LC familiar with gastric bypass to find out if it’s normal for me to not be producing as a wls postop. Because I feel like everyone is accusing me of not doing enough, and I’m failing my kid by not making this “liquid gold” (I fucking hate that they call it that) for him. How long can I spend 6 hours per day pumping (and ignoring my kids) for a measly 10cc? I’m honestly not sure that it’s worth it to me. Maybe I’m the worst mother ever for admitting that, but there it is.

Oh, and Lucas did call the head nurse on Wednesday after I told him about the blood transfusion that they failed to inform us of. She assured us that she would speak with the nurses about communicating better with us. I really want a huge sign on our chart stating that we love our son and want to be there for him but have extenuating circumstances that allow us to only make it on Saturdays.

Elevated white cell count.  Infection.  Ventilated now.

I’m in so much pain that I just want to disappear, and I cannot think of a single thing that I can do to make it better.  Nothing touches it.  I don’t know how long i can go on this way.  And, trust me, I’ve asked for help already.  It’s just not working.

All the nurse would tell us was that the x-rays didn’t look “too bad” and that they’re waiting to get a stool sample for culture.  Too bad compared to what?  Why must we be so vague?  I feel like they’re withholding information because we’re not there in person, but we cannot afford to be there.  Add to that the fact that they say they need more breast milk and I am not producing more than a half an ounce per day even with the Reglan.  Is there anything else that could be added to make me feel like more of a failure?

More updates as we get them.  If we get them.  This could be potentially very, very bad, but I’m hoping that it’s just a bump in the road.  It’s no wonder I can’t attach to the boy.  I still don’t believe that he’ll come home to us.