blog@milenka.com

Another good day for Fox, so what more could I ask for?

He gained another 10 grams (a third of an ounce?) and they’re going to attempt a breastmilk feeding at midnight tonight.  He’s been on iv nutrition only since Friday, so I hope that his digestive system can handle it and there isn’t a lot of residual.  They only start out at half a cc of milk in the first place, which is amazing to me when you see how little that really is.  I’ve done a bit too much googling in regards to the residual milk and have managed to read up a lot on Necrotizing Enterocolitis.  Honestly, NEC isn’t even anything that the doctors or nurses have mentioned to us at all, but I still worry and wonder, especially being so far away and feeling as though the communication isn’t so good on their part.  I won’t borrow trouble and will instead just keep my fingers crossed that his body begins to accept the milk soon.  He cannot grow and come home if he can’t eat, right?  Well, you know what I mean.

Apparently the genetic testing results have come back.  How do we know this?  We asked.  Seriously, no one ever mentioned it.  Apparently the nurses don’t want to talk about it because the doctors are supposed to give results like that, but we haven’t been in touch with a doctor since Saturday.  Lucas asked tonight and the nurse hesitated as she pulled up his chart.  While I’m certain her response would have been quite different if the news had been bad, she was willing to tell us that the results all came back completely normal.  While I felt all along that the boy didn’t have any genetic issues, the high risk ob was pretty certain that there was a genetic reason for the lag in growth and lack of fluid.  By the end of the pregnancy I was getting a bit concerned that he could be right because I had heard it so often.  I’ve never been happier to be right.  Now, that’s not to say that I wouldn’t love my son and take care of him no matter how the tests had come back, but it certainly does give us a renewed sense of hopefulness that things could continue to go well.  Honestly, I just want to know what we’re up against here, you know?  I would love to get a clear answer when I ask how sick my son is so that I may process and deal accordingly.  That won’t happen, of course.  These people are pros at not saying too much.  As it is, it’s so hard to process right now.  I know Fox is tiny and early and supposed to still be on the inside growing and maturing.  That said, he doesn’t seem sick to me at all.  He seems just fine, which makes me fear that I’m wearing my rose-colored glasses.  No parent wants to face the idea that their child is sick and could die.  In my mind, I know that we’re not out of the woods yet and that things could change in an instant.  Somehow, though, I find it hard to believe that he could be doing so very well these past 9 days and suddenly take a huge step backward.  Just one serious infection, though, is all it would take to bring that dreaded call.  Ugh.  I cannot focus too much on that.  Honestly, the only way I make it through the day is by processing what has already happened and not thinking at all about what is going to happen.

Bea had the day off and offered to spring for gas to take me over to the hospital. We can really only manage one trip per week, and I want to save that trip for the weekends when Lucas can make it. Anyhow, I am ever so thankful for Bea and to have gotten to go, even for a short bit. I would love to go and sit by his side for 8 or 12 hours, but a 3 hour round trip and a 2-3 hour visit is about all I can manage between the time Lucas gets home from work and the time he has to get to bed. If we didn’t have the girls…but the girls are the only thing making life bearable for me right now.

Speaking of the girls, they’ve learned so much since I’ve been in and out of the hospital and on bedrest. Sometime soon I need to go into great depth about them. They just amaze me. Though I hear that they were a bit naughty while I was gone today. Something about naptime, poopy diapers, taking off said diapers…well, you get the idea. I would hazard a guess and say that Daddy was very upset over all of this, but he had it all cleaned up and the bedding in the dryer by the time I got home. He even seemed ever so slightly amused by it, but I’m glad I missed the entire thing! It would figure that the one time they don’t have pants on over their diapers…oy.

I may as well update on my physical health, since some people have been asking. The c-section was less than stellar. The spinal took a lot of work to get in place, and I fear that it never quite reached its full potential. I won’t claim to have felt it, but there was a lot of pain. It was definitely more than the “pressure” that the nurse kept telling me I was feeling. Actually, it didn’t hurt at all until after Fox was out and they were trying to stop my bleeding. I bled. A lot. And they spent over an hour after he was born stopping the bleeding and sewing me up. Obviously I didn’t bleed enough to need a transfusion, but I have no other explanation for why they so vigorously palpitated my uterus for an hour. I just know that it was the palpitations that hurt terribly. Lucas left with the girls to the nursery after they were born but stayed with me after Fox was born, so he couldn’t help me to compare. I recall no pain, just pressure, with the girls and actually being able to drift off and relax a bit while they stitched me up that time. Blah. This c-section thing is for the birds. They had to do the classic section (horizontal on the outside but vertical inside) because of how small my uterus was and the placement of my placenta, and the doctor warned me that I would not be allowed to labor at all or attempt a VBAC after this type of section. At that point I didn’t care. The kid was breech, in distress, and needed to come out. So now I’m awaiting results on the host of clotting tests they’re running as well as the pathology on the placenta. More than anything, we’re just all curious to know if this could be prevented in the future. Not that we’re planning a future at this point. Who knows where we’ll be in 5 years, though, right? Anyhow, I have an ob appointment and one with the hematologist next week. Hopefully my body will be on the mend by then. I was feeling okay in the hospital but have had a lot of pain since being discharged. Apparently carrying toddlers and moving large containers of baby clothes from room to room is hard on an incision. Lucas keeps telling me to take it easy, but who does he think is going to do all of this stuff if he doesn’t have time? Grandparents coming to help means playing with the girls 99% of the time, not cleaning my house or getting things ready for Fox. I won’t complain because I didn’t have kids just so other people could take care of them, but it’s hard sometimes to walk around knowing that people are watching me do things that they know I’m not supposed to do but aren’t offering to assist me at all. It’s not their responsibility, though, and I understand that. It annoyed me more when I was supposed to be on bedrest than it does now that I’m just trying to heal from being cut open.

So, about that little boy of mine. Well, he’s up to 1 pound and 15.5 ounces today. I asked the nurse more than once if it was just fluid because she said he gained 80 grams in the past 24 hours, and she said that the combination of him not looking “puffy” and the lasiks that he received over the weekend should indicate a true gain. That said, we’ll see how the next few days go on the weight front. Since he’s not on any kind of forced air device (and hasn’t been since Friday) and isn’t receiving breastmilk, his feeding tube was gone today. It was so odd to see him without anything on his face! The apnea spells are few and far between, so that shot of caffeine on Saturday seems to have done the trick for now. Apparently somehow there was a miscommunication and he did actually receive all 3 doses of Indocin after all. We’re awaiting news on the follow-up echo to see if further steps will be necessary to close the PDA. He was running a bit warm (99.1-99.4) last night, so they turned the humidity in his cage to 40%, which cleared the issue right up. Still withholding feedings, which is probably good with all of the bad luck I’m having with pumping. I won’t go into a rant right now about how my body can’t do anything right for this kid, but consider it all said.

The very best news, which obviously deserves its own paragraph, is that they did the scan for brain bleeds and it was all clear! Of course, they check again on day 30, so this is just the first hurdle. Still, I felt an immediate sense of relief when I heard that there were no bleeds right now. I just keep waiting for the backward steps to come. I know from speaking with other preemie moms and reading blogs and boards that setbacks are completely normal, so I’m wondering when ours will come. Have we already experienced some and I’m just so thankful for what we have that I haven’t noticed? Are we building up a long stretch of good stuff just to have a really big bad thing hit us soon? Uncertainty is not something I will be able to avoid over the next few months, so I may as well just go with it. It is what it is.

*edit @ 10:36p - Just talked to the nurse. His latest echo came back normal, so no need to look to surgical means to deal with the PDA! Also, he’s up to 2 pounds and 1 ounce tonight! I’ve never had a 2 pound son before!

Being here while he’s there is harder than I expected, and I expected it to be hard. There’s just no other way, though. I hate feeling alone and empty in a house full of people.

Let’s see, what is there to report? They ran an echo on Saturday and found a rather large heart murmur. They gave the first of three doses of Indocin, and there has already been a bit of improvement. The second dose has been put on hold because his output has been down a bit the past couple of days. Also on Saturday, they gave him caffeine because he was having episodes of apnea. Those have since gone almost completely away for the time being. He’ll go back on CPAP if the frequency increases. Today he weighed in at 1 pound and 12 point something ounces, so he’s not doing too badly with the weight loss. They are still withholding feedings until the doctor decides that his digestive system can handle them.

Honestly, sometimes it feels pointless to even call and check on him. They never really have anything to say, though of course I’m happy to hear that he’s holding steady and not getting worse. I just feel so disheartened when I think back to the pregnancy and the past week and the months that loom ahead. I know that my feelings are not the important thing here. I know how incredibly lucky we have been so far to have avoided major issues. I just feel like this road, the relatively easy road, is so damned long and difficult. I feel like there is no way that we’ll make it to the end before the other shoe drops, and I live in complete fear of that phone call.

Fox officially breathes like a normal person these days.  The doctor had them discontinue the nasal cannula this morning after noticing that the child has it out more often than in.  He works very hard to pull that tape off, as a matter of fact.  So he’s been without any forced air at all today, and he’s still doing just fine.  I hope it continues!

He’s currently not taking any breastmilk after an episode with green sludge residual in his tummy this afternoon.  We’re pumping and freezing, though, so it’ll be there for him when he’s ready.  He hadn’t had a bowel movement in 24 hours but managed one just in time for my first attempt at a diaper change.  Changing boys is…different.  And changing a baby that small is intimidating as all get out.  I also got to be in charge of his Aquaphor rubdown, and he’s a cranky kid who kicks and hits a lot.  I assume he’ll startle less easily as he develops more.

Hey, did you know that it takes 12 vials of blood to check for clotting disorders?  Or that 12 vials of blood is enough to knock a surgical post-op on her ass when she simply does not have time to sit and relax?  I get discharged tomorrow, and then it’s right back into the world of toddler twins and moving stuff to make room for another baby.  Strangely, I’m mostly worried about how I’ll be able to make time to pump every 3 hours at home.  The girls are not trustworthy enough to occupy themselves for 20 minutes while I sit still with my hands full.  Man, I miss them.  I thought I’d see them today, but obviously not.

First off, thank you all for the ideas and advice on the pump situation.  We’re still looking into the insurance situation, but my awesome friend, Brooke, has offered up her Pump In Style.  I feel odd accepting such an extravagant gift, but the boy needs it and I’m not about to deny him anything.  Also, if anyone is in California’s Sonoma, Marin or Napa county and is thinking of having photos taken, please do check out Brooke’s flickr portfolio.  The lady is awesome, and I would totally hire her in a heartbeat if she weren’t so dang far from Michigan!

Fox is doing okay again today.  He was a bit jaundiced this morning, so he’s been under the bili light.  They took the iv out of his umbilical area this afternoon and replaced it with a PICC line in his arm.  This means that they got to take away his antibiotics, which were only being given to prevent infection in the iv area.  His weight is still hovering right around where it was at birth, and he’s taking a half cc of breastmilk every 3 hours.

I have a whole host of bloodwork to be done in the morning regarding clotting factors, so I’m going to try to pump a bit and then get some sleep.  Thank you again for all of your kindness.  The thoughts and prayers and blessings are obviously working thus far.

While my hit count is still up, I wanted to put this question out there.  Does anyone know of anyone selling a gently used Medela Pump In Style?  I don’t know if our insurance will cover pump rental or if they’ll approve it before I’m discharged, and we definitely cannot afford the monthly fee right now.  I have a pump packed away somewhere in storage, but it’s not really heavy duty enough to do strict pumping, if I recall correctly from the early days with the girls.   I can use the hospital pump while I’m here, but only being here once a week or so won’t cut it.  Of course, everyone likes to push on me how important breastmilk is for Fox (and I agree that it is) but no one can actually help with the logistics of the situation.  Oy.  So, anyhow, my plan is to try to find said above mentioned pump and figure out from there how to acquire it.  According to the lactation consulant here it would be $200 to rent a pump for the 3 month minimum that he’ll be here, and it seems like he could very well need expressed milk after he comes home anyhow.  So, yeah, a wordy explanation for why I’m whoring myself looking around.  I’d try ebay, but I just read a blog about how someone ended up with a stolen pump that way and had to send it back for a paltry $150 credit!

Life has already settled into a steady pattern of eating, pumping, visiting the NICU, and getting a bit of sleep. I really hate to even consider what it will be like once I’m released and can only get up here once a week or so. I know that Fox is in good hands here, but I really like to just sit there and stare at him whenever possible. The photos we have don’t accurately show just how tiny he is. He doesn’t look skeletal or sickly at all, but he’s simply smaller than I could ever explain. Camera zoom covers most of that, so I’ll take a photo of him with one of our hands the next time Lucas visits with the camera. I assume that he’ll come when I’m discharged to pick me up, but perhaps Bea will be on duty at that time. Either way, the camera can make the trip!

Day 2 in the NICU has been very quiet, which is the best possible news I could have for you all. Everything is still looking good so far. When I got back after lunch his CPAP was gone! He now has a simple nasal cannula, still with room air. He’s a feisty kid and can tear off the tape and remove the cannula in a matter of seconds. Luckily, he seems to breathe just fine without it and actually had it off for over 30 minutes today and maintained a 95-98 O2 sat. I have to say that I was pretty impressed with him. I’m acutely aware that the next time I call or walk in the room he could be on a ventilator because it only takes a second for things to turn the other way, but for now I’m hopeful. I even got to touch him a tiny bit this morning, though I was terrified of startling him. He had no interest in grasping my finger and instead slapped my hand away. Yeah, that’s my kid.

Fox Frederick arrived at 12:45pm on July 15, 2008 via an emergency c-section. We made it to a point where he was safer on the outside than on the inside, but at least we managed 30w2d rather than the original 24w2d that we were given. Pertinent details would be that he weighs 1 pound and 14.5 ounces and is 12.6 inches long. I know those numbers really mean nothing. They certainly meant nothing much to me. Once I saw him, though. He’s painfully tiny but surprisingly cute. Preop I was telling Lucas that I thought that babies that small were not at all cute, just sad and pitiful. I stand corrected. I believe that he looks a lot like Pagan in her first day photos, but I only noticed this because I spent some time this morning at flickr looking at the November 2006 shots of the girls and their first days.

As for the medical stuff, let’s see what I can remember right this moment. I’ll try to do some sort of birth story soon, but we’ll see if I can get through it. It was difficult, and thinking about it isn’t easy yet. He did come out crying, which was comforting. He also immediately peed, and the idea that his kidneys had already shut down had been a concern. He has had a bowel movement tonight, too. All of the blood gases that they’ve done have come back normal, and he shows no outward sign of a genetic problem. They’re sending blood out in the morning for genetic testing, but it could be a week or so before it comes back. They did x-rays and all is normal on those. They’ll test at 1 week and 4 weeks for brain bleeds. His iv goes in through his umbilical cord area and doesn’t look too bad. The best news is that he is on CPAP with room air, so no extra oxygen has been needed yet. I know that the first few days with preemies are often the calm before the storm, but I’m feeling hopeful at the moment. The RNICU is open 21 hours per day, so I can go see him pretty much whenever I want while I’m here. I don’t want to think about what I’m going to do when I’m released later this week. One day at a time, yes?

Everyone is still alive.

Thank you so much for the thoughts and prayers throughout all of this.

Details as soon as the Vicodin kicks in.

Not just one big sister anymore.

The Wee Fox before they took him to the RNICU.

And around 3 hours old.

Definitely delivering.  Please send out hopeful vibes that the girls come out of this with a little brother.