Wednesday, July 22, 2009

When The Going Gets Tough...The Tough Watch Lifetime

So I have been off the blog for a little while. Partially because I am trying to heal and partially because writing about all of this makes it feel real. Oh how I wish that this was just a bad dream and I will wake up from this nightmare and find Ella safe inside my belly instead of miles away in the NICU. But this is our reality now. This blog is no longer a record of the fun preparations and arrival of our baby. It now is the slow progress of a tiny little baby on her road home to Shazam and I. I used to have a plan and a direction now we live moment to moment and I jump every time my phone rings.

To keep myself sane I have found myself watching lifetime movies...all the time. I think it is the mindlessness of them that I like. I don't have to think, you can pick up on the plot no matter what point you start watching (which is good when you are up every 2-3 hours pumping in the middle of the night), and it is nice to just get lost in the crazy situations that these movies present. It is my escape. I would say it is healthier than some other options so I am going with it.

One of the things I am really struggling with is the balance between getting rest and pumping. Ella is now eating (though her g-tube) every 4 hours. She is up to 23 ml of breast milk fortified with extra calories. So one of the few things that I can do for Ella is provide food for her. The lactation consultants want me pumping every 2-3 hours with one 4-5 hour break at night. This means that if I pump at 10:30pm I can take a break and sleep until 3:30 and pump. I should then get up at 6:30 at the latest to pump again to get back on the 2-3 hour schedule again. I know that this is what happens when you have a newborn but it is just so lonely to have to pump and not have your baby there with you. It is in the middle of the night that I miss Ella the most. That and my shear exhaustion is making this schedule so hard to keep up with. Since it takes about 30-45 min. to pump and clean up I am not really getting a full 5 or 3 hour stretch of sleep. I slept through the alarm at 6:30 yesterday and Shazam just couldn't wake me up I was just so exhausted. I am doing pretty well on my output and most times I produce about 60-70 ml of milk per pumping. In fact the nurse told us the other day that I should freeze some of my milk at home since she has so much right now in the NICU. So at least I am doing one thing well for my sweet Ella.

Ella is doing ok. She is very small for her gestational age which the Drs are concerned about. She should have been about 3 lbs at birth and this makes her case a bit more complicated. She is still having spells where her heart rate drops. They are not sure what to make of them and she is keeping her oxygen saturation up and doesn't seem to be dropping her respiration rate. She also gets herself out of them on her own most of the time, sometimes in a fraction of a second. We are hoping she outgrows them soon. She may have to go back on c-pap if they continue and I am fine with this. Her pda (heart murmur) has resolved itself. They thought that they heard it again the other day but it turned out to be a pfo which they do not treat and just monitor. I have not been able to talk to the Dr about it yet but from what I have been able to find of the web it seems that 80% of all newborns have this and it closes on its own. I hope it does, the thought of heart surgery makes me sick to my stomach. She is doing well on her feeds now that she has started pooping and her poop today was yellow so it seems that she has gotten all the merconium out of her system. She is a feisty one and lets the nurses know when she needs a diaper change. She got us all laughing last night during her care time as she went through three diapers since she started pooping in the middle of her change...we kept thinking she was done but she just kept going. I guess that teaches us to be careful for what we wish for! She is a whopping 2 lbs 9 oz this morning! Over 2.5 pound is so exciting! I am looking forward to her being 3 lbs as that seems so much more sturdy and strong. Oh the fun of a preemie when 3 lbs seems big.

One of the exciting changes is that Ella can now where what my grandmother in law calls street clothes. Since she is so small she doesn't fit into regular preemie clothes yet which go from 3-5 pounds. She will get there and we are really looking forward to being able to use the couple of preemie outfits we have now. She is currently fitting into what they call micro preemie clothes. There are several websites that we have found that offer these clothes and ordered a couple of shirts and a hat. So yes even when your baby is under 3 lbs you can still shop for your cute little girl. We found 2 great websites to buy clothes and with Shazam holding me back from buying all kinds of cute outfits we bought Ella 2 shirts and a hat to start her wardrobe. I couldn't figure out how to get pictures but you can see what we bought at the Early birds website. We got the organics t-shirt and hat and one of the sunny day isolette suits in pink of course. I can not wait for the clothes to come so we can dress Ella up! Oh the joy of a girl. My other favorite site is the Preemie store as they have some really cute things and carry our favorite brand Kissy Kissy in the micro preemie size! I also like how both these sites tell you what weight baby the clothes will fit. I will be sure to post a fashion show picture of Ella in her new wardrobe as soon as we get the clothes.

Finally our photographer from our wedding has a post about Ella and a way to get a discount on Ella's first photoshoot so go to her blog and help us out if you can. Hint the picture is of my dad's boutoniere on page 30! The last day is today so if you could help us out we would appreciate it!


Snickollet said...

Thanks for all the details on wee Ella. I'm so glad you found a resource for micropreemie clothing! So, so cute.

Re: pumping, here's my (unsolicited) assvice. If you get too exhausted, your body is not going to produce as much milk. If you need to sleep through that 3:30 pumping ever once in a while, do it. That will give your body some recovery time to be able to make more milk. I know my production always dropped when I got super-duper extra tired. Just a thought.

You guys are awesome. I miss you tons.

Meegs said...

Thanks for the update sweetie.

Just a note on the murmur: I had a disappearing/reappearing heart murmur for most of my life. It actually have a little game I play with new doctors called, "can you find the heart murmur?" ;-) Hopefully Ella's will resolve itself, but I wanted to reassure you that you can have a vivacious, healthy girl with a murmur. Not to toot my own horn. Lol.

Anonymous said...

I'm happy to see your little one is doing better, i was a preemie, my mother said she had to dress me up in doll clothes lol