Sunday, May 30, 2010

Accomplishment of a Preemie: Look at me grow!

Well, after all that bottle drinking it is only natural that there has been some huge jumps in body size too. Kate still isn't the big girl on the block but she is holding her own and doing quite well. As with everything with these 'super' mini babies their growth in a year is very impressive.

For a normal healthy pregnancy the majority of the babies growth and weight gain is in the final trimester. Kate and I decided that was trimester we didn't need. So because of that she had to do all her growing on the outside. Challenging is putting it mildly, since she couldn't even take in feeds for the first month. Furthermore, having to survive on the outside world is a lot more taxing than on the inside.

Kate was 850 grams at birth, or 1 lb 14 oz. That is smaller than most young puppies or kittens. We couldn't not touch her without gloves until she hit 1000 grams, 2+ lbs. We waited and waited, and that happened on 6/25. I still have the post-it note from the night nurse, and it hangs in my office as a reminder of how far we've come.

To visualize how small she was and how big she is now is really hard even for me. I can remember when I first held her sometime in July, she was just a tiny little lump that would fit right on my chest. Today, I struggle to keep all of her in my lap in the rocker. And as some of you might remember, Ed's wedding ring went up her arm and up her leg at birth. Now it probably could go around a few of her fingers, but no where near her chubby little arms.

I found some pictures to help put it all into perspective. The first one is of her diapers she wore in the NICU and the diapers that she has on now. The little super preemie diaper (smaller than preemie) was too big on her in the beginning and we had to fold them up in 1/2. The preemie diapers that you might find if you look hard at the store are at least three sizes up from this hospital diaper. The diaper she is in now is a size 3.

The second picture is a onesie comparison. Most preemie clothes are for babies in the 4 to 5 lb range, that was August of last year. So in the beginning we just couldn't really put her in anything. Ed bought her a cute little pink jacket type top for 3 lbs, we have pictures of her in it with the sleeves rolled up and she is just swimming in it. That too is framed with the nurses post it note. The polka dot onesie on the left was one the first ones I bought her. I remember that I really was starting to feel like we had a 'real' baby when I started to put her in preemie clothes. She is wearing anything between a 9 month and a 12 month now, depending on the brand. Some of her pants and things are still 6 month size but you can tell from the picture that it has been one big size jump.

Last are her pj's. We brought her home in a similar pj to the one on the left. If you look closely in both the onesie and the pj her name is written in permanent marker, another small sign of life in the hospital. It was always interesting in the hospital you had to stick about seven cords out of her pj's (ECG, temperature probe, pulse ox). Besides being in such big cute pj's now, I am always just thrilled that there are no cords or extra equipment needed when we put her to bed.

Kate is now 8500 grams (18+ lbs), ironically when I did the calculations she has decided to grow almost exactly 10 times what she was at birth. That is so much growth it makes me tired thinking about it. I swear she'd be bigger now if she would just slow down a bit. Again, I just couldn't be more proud of our little girl.

(Footnote: This preemie mom is tired from having a little girl who gets up so early every day, and the computer is frustrating me so the pictures are obviously in reverse order and I did not proof read this one so bear with typo's and grammar.)

Thursday, May 27, 2010

Accomplishment of a preemie: "DRINKING A BOTTLE"

One of the best parts of having a preemie (especially a super micro-baby), is that you never take anything for granted. For those of you lucky enough to have a healthy full term baby (or termie), you may have mastered breast feeding or drinking a bottle within an hour or so from birth. And from there with any luck, it will just increase over time and then to solids, and table foods and so on.

Well, in the Katie world it was a different story. At first she was so compromised, that she just received liquid nutrition via a PIC-line. And if she remained stable, eventually she could start getting small amounts of breast milk through a tube in through her mouth that goes into her stomach. It took a few weeks before we got to that point. The first time Kate received any milk from me was on a cotton swab on her lips. It was called oral therapy to help promote the development of bacteria in her mouth and stomach and possibly spread some immunity to her.

Then the oral feeds began. I remember that they started with 0.5 ml every 3 hours, and as things went well she maybe got a total of 5 mls a day. That is a tiny amount. You'll see it in picture as the first amount on the end. And every time before she got more they would pull off the residuals, and if there was any abnormality in the fluid they pulled back then it was a big deal and determined whether to get more or not. On top of that if anything was off, she was more apnic, had a low heart rate, didn't have bowel movement, all feeds were stopped.

It would drive me crazy. Everything would seem fine to me, I would go to dinner and come back and there would be ten people around her isolette. She was bloated, they had taken x-rays, feeds would be stopped for 24 hours. Then you would start at a small amount again and so on. We were always very aware that at any moment she could develop NEC (necrotizing enteritis).

Then as time went on, the tube was moved from mouth to her nose. It would cause less irritation there, and could be in for a long time. Kate pulled her tube out all the time. She hated having it replaced, she would scream like crazy. I used to hold her during her feeds so that she would associate me with food, and also so she would leave her tube in. Once I decided to go eat dinner and felt bad placing her back in her isolette while she was eating, when I got back she had pulled her tube out and had milk all over the place.

It isn't until around 34 weeks gestation age that a baby starts to develop the ability to suck, breath and swallow all at the same time. See what I mean, who knew it was so complicated? I just assumed that a baby just took a bottle. We got started at 34 weeks, and at first she might seem like she was doing okay but then her heart rate would drop, and her alarms would go off. Or she just didn't want to do it.

Oh it took forever! I knew it was one of the last things that we had to learn to go home, it made it feel so much more urgent. And after doing better for a bit she, then just started to refuse the bottle and was really stuffed up. She was then diagnosed with reflux, and we were introduced to thickening feeds and zantac. I was at the end of my rope by this point, tired of being away and frustrated. I would just pray that she would take a bottle. Then one day she took 20 mls on her own (the next bottle in the picture). We were home within a two weeks.

Once at home, we had a rigid feeding schedule to follow. She had to get 60 ml every 2-3 hours 24 hours a day. That is bottle number three in the picture. We had to go to the doctors once a week, and weigh her to make sure she was gaining and getting enough. She liked to fall asleep, she liked to refuse the bottle, she liked to spit it up all over you. I thought the pressure was intense in the hospital. Now I was home, without sleep, and trying to feed Kate who at times acted as if I was torturing her. It felt never ending, and at times I really thought we would never get her to eat more than the little bottles we had gotten from the hospital.

But, you know what she did! She then started to take the little Dr. Brown's bottles with 4 oz in it (the first real bottle in the picture). She still liked to refuse the bottle, squirming like an electric eel at times. Oh and the reflux spit up, it rolled out of her at a speed that I didn't know was possible. Covered in vomit, and thank god we had leather couches. Though you still might want to look where you sit in our house.

Time kept moving on, and our little preemie just kept on growing. She started needing the bigger Dr. Brown bottles. And now she drinks 7-8 oz at a sitting. And most of the time its not too much of a struggle. She still has reflux, and don't you dare try to give it to her when she doesn't want it. But, she is doing it!

In one year, she has come from an IV only, to 5 mls a day via a nasogatric tube, to drinking a 20 ml bottle on her own in 30 minutes, to 60 ml bottles at home, to 4 oz (120 mls) with a bit of stuggle, and now 7-8 oz regularly! Way to go Katie, that was a lot of work and you've always done it on your own terms in your own time. The picture of Kate in her highchair from a few days ago says it all: bring it on, try to force that munchkin to eat, it won't happen! All and all we just couldn't be more proud.

Wednesday, May 26, 2010

The big birthday is coming fast!

Kate's 1 st birthday is coming very fast! She will be turning one in 8 days, and I just can't believe how fast it all went. Granted, she still has a bit of catching up to do but I've decided in anticipation of the big day that I will make the next several post on how much she has accomplished (complete with visual aids).

It would be easy, if not somewhat inevitable to get a bit bogged down with unpleasant memories of last year and her birth. So, to counter act this I am planning on focusing on all that we've accomplished.

Get ready to be amazed!

Tuesday, May 18, 2010

Some days are about the little things.

Today was a busy Tuesday. I removed a very gross sock from a young dogs intestines. I thought to myself, how do you eat a whole sock? Can you imagine what that would feel like to do? But, then I would have to think about all the other things dogs eat and that is really gross. I know dogs and or have removed the following objects from dogs intestinal tracts: underwear, a full bath towel, a carving knife, 1/2 of a fishing pole, rocks, rocks and more rocks, tampons, corn cobs, carpet. And then there was the cat that ate a bunch of landscaping bark. Well, let your mind wander on all that.

I had to go for a good run at lunch, as the pressure of a busy day was starting to get to me. It was one of the spring moments when the clouds cleared and the sun came out. The forest smelled like fresh rain. It was a great run, not too long but I could go really hard for a bit listening to some loud music. And I wondered how do other people handle themselves without running? How do they get out these angry, frustrated emotions? I think that if I couldn't run I would just explode, probably do something violent or start screaming a lot. Again let your mind wander on that.

Lastly, I heat the water for Kate's bottles in the microwave for 2 minutes. I am here to say that you can get a lot done in 2 minutes. I can unload the dishwasher, fill four more bottles, preprogram the coffee maker, check your email, and on and on. I challenge you someday to just time yourself for two minutes and you'd be amazed at how much you really can get done in that time. Don't let your mind wander on this, that would be a waste of a good 2 minutes of productive time.

Saturday, May 15, 2010

Swim class!

This weekend we went to Kate's first swim class. I wanted to be sure and post that we are loving be out of home quarantine. The real world is great! Just being able to go to a baby swim class is fabulous, and nobody there even knows anything about all that has taken to get us there. She loved the class, giggling and splashing. I thought she was very advanced already, but of course I am her mother.

We also went out to dinner tonight (not the first time), but it just seems so casual and easy. Granted we ate as fast as possible since it was close to bedtime and Kate's mood was only going to last about an hour. On other days I have also went to the pharmacy and a quick run into a grocery store. I just can't explain how great it is to feel normal. She also finally got to meet her young cousins too.

We are still cautious with her, but for the late spring and summer of this year our restrictions are gone and we are absolutely thrilled with it. Ironically one picture above is from our house, but it cracked me up because it just looks like she is having some type of wild party with herself. I can imagine all types of captures to go with it.

Saturday, May 8, 2010

Me, myself and the pump.

For some this might be included in the 'too much information' section, but I feel that I most talk about something that I have devoted so much time to in the past year. For me it is something, that I had absolutely no idea about when I was pregnant. I remember I had it on a 'to-do-list', research breast pumps, or some such item I could cross off the list.

When I was pregnant, I had a few things that I knew I wanted to happen. I knew I wanted to have an epidural. I also knew I wanted to breast feed. In fact of all the crazy things that ran through my hormonal haze during those brief pregnant months breast feeding was something that just really struck a cord with me. I know now that I had an over romantic view of breastfeeding. I held tight to a vision of holding my baby close and providing for her everything she needed.

When I was helicoptered into the level III hospital confusion and fear as well as the magnesium drip made everything feel somewhat surreal. I could not understand the magnitude of the situation we were in. I was listening to everybody, but it felt as if I was underwater watching them on the shore. It probably was a defense mechanism but, I did not think that I was about to deliver my baby. I was 23 weeks pregnant, barely over 1/2 way through my pregnancy. I thought that maybe I had a urinary tract infection when we went to the first emergency room.

So, when I was placed in a labor and delivery room with an incubator my confusion was starting to be replaced by panic. Then in typical hospital style, a nurse came in to ask me standard questions about how I wanted my birth experience and baby treated. Somehow I was able to answer the questions, about whether I wanted my baby to be vaccinated and whether I wanted an epidural. I didn't even fully realize that my baby would have died if she was born then. I was holding it together pretty well, and then they asked me if I planned to breast feed.

I remember it was that question, that suddenly made me realize what was really going on. My vision of a picturesque mother and daughter breast feeding, was not going to happen. Christ we might not even have a baby. I started to sob, and sob hard. My husband asked her to leave and offered to sign anything else.

I'll save what happened during the ten days that followed my first day in the hospital for another blog, or maybe just keep it to myself. But, with a small miracle a great medical staff my labor was held off for 10 more days. We reached the glorious 25 week mark, where viability of survival was greatly improved. Then, at 25 weeks and one day just after dinner I started to bleed and the fetal monitors started to ring. Nurses and doctors started moving very fast, and within three hours later I delivered my daughter at 8:01 pm. And, I did get my epidural after all.

When you have a baby that is 1 lb 12 oz, you are lucky if you even catch a glance of it in the delivery room. There is a large staff around them, and they are instantly placed in huge incubator that honestly seems like something that could take off into outer space. My husband went with the NICU staff, and I stayed in a recovery for the next two hours. I was given a pumping kit, with parts and access to a hospital grade pump. I cried and started pumping within two hours of her birth. I pumped before I actually got to see my daughter.

The beginning was the hardest. To get your milk to come in when you body thinks you should still be pregnant, you need to pump religiously every 2 to 3 hours for about 30 minutes. And so I did, round the clock. I was discharged from the hospital the day after our daughters birth, the only problem being that we had been traveling when I went into labor and so my husband and I didn't have anywhere to go.

There we were. Our daughter as fragile as a piece of tissue paper. No home, no friends or family. And me hooking myself up where-ever I could find a little bit of privacy to a machine that felt a bit like breast torture machine. And during that whole first month while I waited on a list to get into the Ronald McDonald House, I hauled around this big hospital grade pump and equipment. Working hard to produce milk for a daughter I had never held. She wouldn't even be able to take in any of my milk oral for 5 weeks. I just kept doing it though.

Things got better. I finally got my own room to sleep in so I had some routine to my day at the hospital. I had a place to store my 10 lb pump as well. After 6 weeks, I was able to hold her and she was getting my milk via a nasogastric tube. She started to grow, and I felt that I was a big part of that. The NICU was great trying to help us breast feed as well with the lactation consultant helping everyday.

One of the big keys to getting out of the NICU is being able to take all feedings by mouth. I had been away from home for 3 months. My husband drove back and forth each weekend. The summer was coming to an end. My dreams of breast feeding were pushed to the back burner, I pushed Kate to learn how to take a bottle so we could all go home. I figured we could learn breast feeding when we got home. I continued to pump every 3 hours 24 hours a day.

We got home! Now I really had an infant to take care of all the time. I also had weekly doctor visits to make sure she was gaining weight. I didn't have the nurses, or the lactation consultant. In fact I was going back to work part time in just a few weeks. I tried for the next several weeks. I contacted the La Leche League, they sent me to the hospital. I went to the local hospital. They had never worked with such a small baby before. I worried constantly that if I let her breast feed she wouldn't get enough and wouldn't gain as much as was needed. Maybe she would even go back to the hospital.

Needless to say, I gave up breast feeding. I just couldn't keep going, I would nurse her then feed her a bottle and then pump. The whole thing could take up to two hours, and then we would start it over in hour or so. Plus once I started back to work we had even less time time to practice.

I let go of the dream.

Or did I?

I just kept pumping, every three hours 24 hours a day. I learned how to do everything while I pumped. I can get ready for work. I can feed, play and watch Kate while I pump. I can drive and pump. I even trained myself to sleep and pump, though I have to be sitting up.

I also tried to breast feed every once and awhile. I was pinched, bitten and pushed away with screams. I learned how to act like it didn't bother me to pump, I even could joke about it from time to time. I trained myself to be able to pump with people walking in and out of my office, or asking me questions. I worked on not flinching when people would make comments about how I didn't 'actually breast feed', or when I'd have to repeatedly tell people that she receives breast milk. Yes, breast milk from a bottle.

I thought about quitting, many times. There have been lots of tears while attached to the pump. But, I have just kept doing it. I would always say just one more month. Then I finally couldn't get up in the middle of the night anymore, as Kate was starting to sleep longer and I was at 9 months of every 3 hours. So I started spreading it out a bit, maybe 4 or 6 hours at night.

Now I am just a little short of a year of pumping. By my calculations, I have spent 53 days (full 24 hour days) pumping in the last year. Roughly 70-80 gallons of milk. We have two freezer full of milk. So why do I feel so bad about stopping? Why do I cry as I watch my daily supply dwindle down? Why am I not rejoicing that I have made it to a year?

Because it is not about pumping. Its about something much more than that to me. It is about a dream that I never really mourned. Its about a connection and link to my baby that kept me going for months during our NICU stay. It has been a real and imaginary safety net of immunity around my daughter. Its something that not even I understand completely because I just can't.

Daily now though, I am forcing myself to not be connected to the pump. I have to not worry about not producing enough today or the next day. Because it is time. It is time to stop, and move on.