Tuesday, September 14, 2010

Updates

We've been very busy lately so I haven't had time to keep up with my blog.

W
e're still waiting! Thankfully my body is acting normally, even if I'm not pregnant yet :) Hopefully I'll have good news to share sometime soon.

RSV has been on my mind lately. Last year Peanut was almost in total isolation (no public places, no kid interaction, etc.), got monthly Synagis vaccines (antibodies to fight against RSV), and he didn't get sick at all. I know this year we need to find some balance. He needs social interaction; so do I.

The doctors say that we should "be very careful but not too strict" (so that he doesn't get RSV but so he can have some exposure to build his immune system).

I wish I could invent a germ strainer to sort out all the RSV vs. Non-RSV germs.

In all seriousness, they do think he'll probably be okay if he gets RSV, but it could be very serious for him still.
We will be laying the ground rules starting in October...

...in the mean time, I'm going to take Peanut to the Children's Museum for the first and only time this year before the germies hit.

p.s. He has his 4th (or 5th? I lost count) cold this summer! He's almost over it aside from coughing (which sounds nasty when he gets into coughing fits at night, but the doctor listened to him and said he's okay and at 95% O2 saturation). He's handling each cold better, only one puke this time. :)



Monday, August 23, 2010

NICU Picnic

This past weekend we took Peanut to the NICU picnic. It's an amazing event. All of the doctors, nurses, hospital staff, NICU graduates, and their families are invited. There are rides, animals, trains, food, you name it.

Peanut had an absolute blast this year. He got to see his NICU "roommates" again. They are all walking and doing so so well. Peanut was born the earliest of them all. He isn't the smallest now (he is probably the tallest, actually!!). He is the last to walk, but we all KNOW he can walk, he's just stubborn. But hey, that's why he's here.

It's amazing is you look around and you see little miracles everywhere. It's amazing to think a lot of these kids went through what Peanut went through, and to see them laughing, running, and having fun.

I can't imagine what it would be like to be a NICU nurse or doctor and to save babies every day. They are such angels. It's such an interesting field to me, but I think it would be incredibly emotionally draining at the same time. Part of me wishes it was my calling, but it clearly isn't :) Kudos to these people that are amazing at what they do.

I feel like I owe them so much. I want to give back in some way. That's something I need to ponder.

Nerves

I'll be 12 dpo tomorrow of our first cycle TTC.

I'm normally a patient, rational person. I'm an engineer for heaven's sake. I think logically. I like data and statistics.

I'd like to ask myself WHY I feel so darn impatient about this. It is statistically unlikely that I'll get pregnant our first cycle. It is not logical to expect that. I have no reason to be impatient. I have an adorable toddler that keeps me insanely busy.

I do not feel pregnant at all. With Peanut, I had one sign - I was sore. I don't feel sore. I'm hoping to be pleasantly surprised tomorrow.
...

I'm trying to remember what my husband keeps telling me. That this will happen when it's meant to happen and we'll have fun in the mean time. He always know what to say when I need him.

Wednesday, August 18, 2010

Another story about TAC

I encountered this blog post from a quadruplet mother. She had a TAC put in place by the doctor I am seeing. :) I love success stories!

TAC Surgery
Post 2

Thursday, August 12, 2010

Weekly Inspiration

As I grow to understand life less and less,
I learn to love it more and more.

Jules Renard

Second Guessing

I suppose this is true with any mom, but I feel like I'm always second guessing myself.

Peanut has been sick most of the last 4.5 months. He didn't have classical symptoms (was gagging and couldn't sleep), but was diagnosed with a sinus infection via CT Scan. He had one long bigass sinus infection. After 3 strong rounds of antibitoics, the last round being 3 weeks long, he finally got better....for a whopping 10 days.

And now he's sick again. Tomorrow will be day 10. He's doing okay but cannot eat much (gags and pukes on table food), won't drink much, and sleeps with Benedryl.

I question myself. Is he just being normal and going through first time exposure to germs needed to build an immune system? Is his reflux contributing to his sinus infection? Is his immune system too weak? I had both a friend and a pediatrician (friend) mention this possibility to me based on his recently chain of events. Should I request a blood test? I mean, hasn't he been stuck enough and had enough tests? Is it a normal preemie thing? An abnormal preemie thing? Not a preemie thing?

I guess it doesn't matter. It's a Peanut thing. But it makes me sad for him. I'm thankful that this is all the bigger issues we have, and I remind myself every day how fortunate we are. I know we'll get through it together.

Wednesday, August 4, 2010

Waiting


This is totally TMI, but I'm entering my first fertile phase of our first TTC cycle. It's weird to think I could be pregnant this month. Eep!
We're both very excited at the possibility and to find out what's in store for us!

Saturday, July 17, 2010

Here we go again...


Now that Peanut is 18 months old and getting a little more independent (we ditched the bottles this week!), my husband and I are thinking about #2.

One part of me thinks we're crazy to think about this so soon. We've had a really difficult year and a half.

The other part of me is very excited and hopeful to try again. I want to experience being pregnant, big belly and all. Peanut is so much fun and to think of having another makes me happy. I like the idea of kids being close in age and getting passed the newborn stage. We originally wanted 3 kids, so we'll see how #2 goes.

If things don't go smoothly, it'll be really difficult handling whatever situation is handed to us while taking care of Peanut. But we have to believe things will go as they're meant to, hopefully smoothly, or we'll never get through this sane. We also have a huge support system in the area.

And so it begins. We are officially not avoiding. I think He'll take care of us.

Weekly Inspiration


Every day do something that will inch you closer to a better tomorrow.
Doug Firebaugh

Wednesday, July 14, 2010

New Discovery Health Series on NICU

I can't wait to see this new series about the NICU and prematurity on Discovery Health. It airs on Thursday, July 15th at 10 PM.

The series follows real families as they experience the roller coaster of emotions that come with having a baby born too soon or with other complications. During the broadcast, viewers can use their mobile devices to text the word “hero” to 20222 to donate $5 to the March of Dimes.

We don't have cable but I think it'll be on Hulu.com. Click the link below:


New TV Series on Discovery Health NICU Highlights Struggles of Premature Babies & Families

Saturday, July 10, 2010

Options for Cervical Insufficiency

As we consider expanding our family, here are some options as we see them. For us, doing nothing isn't an option, as we're terrified that our next baby will be born prematurely. Doctors have advised us that certainly it will and it isn't unlikely that it could happen even sooner next time.

My ob-gyn said that we could get pregnant and to call when we did to schedule a vaginal cerclage (cervical stitch to prolong pregnancy in times of cervical incompetence) procedure. (In Layman's terms: sewing the cervix closed!) However, being 2 engineers, my husband and I wanted more of a plan, more data, and more assurance than that.

We met with an amazing MFM (Maternal-Fetal Medicine) doctor. We saw our options as either:
1) Get a vaginal cerclage at the end of the first trimester - easy procedure, somewhat successful
2) Get an abdominal cerclage at the end of the first trimester - placed via C-section surgery - proven to be very successful
3) Get an abdominal cerclage before pregnancy - placed via laparoscopic surgery - experimental

There are lots of advantages and disadvantages to these. There is a weigh and balance of risk of procedure vs. possible outcome. For us, we wanted to pull out every trick possible to prevent extreme premature birth.

Traditional ways of thinking indicate that option #1 is suitable for a case such as mine. Being a more major sugery, often abdominal cerclages might not be used until multiple losses or premature births are experienced. But those options are not acceptable to us.

So - We opted for #3. A few weeks ago I had an transabdominal cerclage placed. I am not pregnant. And it was placed via the DaVinci robot (it looked like the bad guy from Spider man 2....awesome) This is an experimental surgery and was considered a success. It was considered outpatient, but I was kept in the hospital 1 night for observation. I was feeling totally normal within about 4 days. The worst issues I had were recovering from the anesthesia and back pain as my stomach muscles healed.

We felt option 3 was the best for us for a few reasons:

1) We wanted the abdominal cerclage because of it's somewhat better success rates (ie: pregnancies that go to term) than a vaginal cerclage (note I don't have this statistics)

2) I believe that the probability for bed rest or hospitalization is less with the abdominal cerclage. This is also really important for us because we have a toddler at home to take care of.

3) The obvious advantages of the laparoscopic surgery are that it can be done before pregnancy and has a faster recovery time. I'd read some negative info on the internet about this method, but my doctor is an expert in this field and so I trusted his advice for our particular situation.

We weighed the risks of the experimental, major surgery vs. the reward and felt that option 3 was the best for us.

Some other factors that entered into our decision:
-Success rates (of carrying baby to term)
-Risks to mother
-Risks to fetus
-Probability of being on bed rest, resuming "normal" life during pregnancy, including taking care of toddler at home
-What happens if you have a miscarriage with option #3
-With vaginal cerclages you would have to repeat the procedure with future pregnancies, abdominal cerclages are permanent
-Abdominal cerclages require c-section at delivery of baby

Weekly Inspiration

"Tough times never last, but tough people do." - Robert Schuller

Thursday, July 1, 2010

So now what?

These days Peanut is 1.5 years old and doing great. So great in fact, that we want to do this again, and Peanut has only been home from the NICU for a year. I mean, he's just so darn cute. And he needs a brother or sister to give him trouble because he's crazy stubborn.

So many questions are in my head.

Will my PCOS result in struggles in getting and staying pregnant? Will I carry a baby to a viable gestational age? Will I carry a baby to term? What precautions should we take when considering down this path again? Will I end up on bed rest in the hospital, and if so, how will we meet our toddler's needs? Are we emotionally ready to handle this again? Are we crazy?

Nobody knows what will happen. My husband and I have done some research, talked to other moms, and have seen one of the leading high risk doctors in the country.

We have a plan. Will my body and the baby stick to the plan? Well, that's anybody's guess, but you better believe we'll be following God's plan.

More on our plan and decisions in another post!

Weekly Inspiration

"Be faithful in small things because it is in them that your strength lies."

-Mother Teresa

Saturday, June 26, 2010

Homecoming

One day the doctor told me the insurance company was asking "is he coming home tomorrow?". EEK! He said, "No, not tomorrow...but maybe Friday if he starts gaining weight." Whoa. Are you kidding?! Our baby is coming home..??! Are you sure he's ready??

Okay so after the initial shock set in....we started getting ready...it's now all down to one moment. The Thursday night weight check. He gained!!!! That means, he's allowed to come home.

Homecoming. It was such a wonderful day. So many emotions. It marked the end of a long, 117 day, NICU stay. It marked the beginning of a new journey...one in which we were bringing home this "newborn" baby. We'd ended one long chapter, and opened another. We would face the challenges that any new parent would face. We didn't realize how challenging chapter #2 would be at the time, but we just felt overwhelming lucky to be bringing our healthy baby boy home with us.

Walking out of the hospital just gave us this amazing sense of freedom! This huge weight was lifted off our shoulders. We knew what a miracle it was that we were so blessed. At the same time, it was so odd to think that he "should" have been born, and we'd gone through so much with him already.

I was thankful the drive home was only a short 5 miles. I let my husband drive the vehicle holding our precious cargo.

When we got home, the first thing we did was take a picture of him on our doorstep. Next, we gave him a tour of his new home. Finally, we all went on a walk together in the neighborhood...WIRE FREE. It was so nice to hold him with no wires. As in we could move around and not trip...no beeps and false alarms...just us. At home!

Being home was the adjustment for all of us. While it was so incredibly difficult to have a baby in the NICU, it was also very difficult, in a completely different way, when he came home. His biggest struggle continues to be reflux and slow stomach motility. Thankfully, these problems are relatively minor and helped with medication. We are so fortunate that these are all the more struggles we have endured.

Probably the biggest source of stress, besides reflux, was that we were afraid that he would get sick. Micro preemie lungs are not fully mature for a couple years after they are born, and so if he were to contract RSV it would be dangerous for him. In an effort to help him to thrive as much as possible, we decided to do a quarantine. He did not go in any public places for a year. We were very restrictive of visitors in our home - never sick - always washed hands - and very few. He was not near any other children until RSV season was over (October-April in our state). We washed our hands like crazy people to ensure that we didn't bring anything home. Thankfully he did not get sick until he was 12 months adjusted, after RSV season ended.

The doctors were right. He did better at home than he did at the hospital. :) He thrived with us at his parents, loving him and catering to his needs in our own environment.

Praise God!

Wednesday, June 23, 2010

Weekly Inspiration - True Story

Gina* was rushed to the hospital at 21 weeks, 1 cm dilated. She is on bed rest and still pregnant. She just entered her 3rd trimester!!!!! I'm so happy for her.

*named changed for confidentiality

Blessed is the man who trusts in the Lord and has made
the Lord his hope and confidence.
- Jeremiah 17:7

Breastfeeding Experience

So how have I failed to mention this until now? I was so focused on all the pumping I did, I forgot to mention our breastfeeding experience. Yes! I was able to breastfeed Peanut in the NICU and it was encouraged!

When Peanut was really little, they gave him a pacifier during his tube feeds. So while he wasn't eating orally, he could start to associate sucking with getting full!

When he hit 34 weeks gestation, first we had a non-nutritive "practice" session. That means no actual milk - just getting used to the idea.

After that, I was allowed to breastfeed and limited per doctor's orders. I was allowed to breastfeed at first up to 1 feeding per day, later up to 2 per day. No more because breastfeeding is a lot of work for preemies. Sometimes he'd breastfeed for a few sucks, sometimes 15 minutes. I was told to guess how well I thought he did, and they'd supplement his feeding with more milk in his feeding tube.

When he came home (3 weeks after his due date) he was breastfeeding 1-2 times per day, depending on how often I could get to the hospital and when he happened to be hungry.

My goal was to drop 1 bottle feeding and replace it with one breastfeeding session every few days to transition into exclusive breastfeeding. Unfortunately, it didn't happen.

At 1.5 months adjusted age (more on that later) Peanut was really struggling to finish bottles - taking an hour to eat, falling asleep, nearly dehydrated, so we ended up using a faster flow nipple on his bottle. I also believe that because I was pumping so frequently and had a mature supply at that point (noting that he was only "newborn"), the flow was overwhelming him. He immediately developed a bottle preference and refused to breastfeed, and hence the exclusive pumping began...

Wednesday, June 16, 2010

Meanwhile...

While Peanut was in the NICU, I saw my job as two fold.

1) First and foremost - - - stay healthy!
2) Pumping

Stay Healthy

Remember that at the end of the NICU stay, you'll bringing a newborn home. You will experience many of the issues that any newborn parent faces, including lack of sleep, and you need to be prepared for that. Maintain your physical and emotional well being.

I tried my best. The NICU was emotionally draining at times, so I felt it was imperative for my husband and I to take nights off once in a while. Peanut was in good hands and we needed that time to recharge. Sometimes we relaxed at home, sometimes we went out with friends, sometimes we went on date nights. Obviously we spent a lot of time with Peanut, but, we recognized that there is a critical balance. He needed us to stay healthy, and our marriage to stay strong, even more than he needed us physically there with him.

Staying healthy also meant not getting sick! We were afraid to bring in any germs to the little guy. This meant getting enough sleep. Drinking lots of water. Washing hands very very well for 20 seconds and using hand sanitizer (probably too often!). My husband got sick with a stomach bug just once during his 4 month stay but considering this was in a sickly time of year (Dec-Apr) that wasn't too bad at all! Getting sick also means we couldn't visit our little man, so it was an additional incentive to stay healthy.

Pumping

Pumping was important to me because we were told it decreases the incidence of a serious condition called NEC. Also, I wanted Peanut to have my antibodies to help keep him from getting sick.

I am going to share my story because I had a lot of success with pumping. I'm sure some of that is my genetic make-up, but maybe some can benefit from my experience!

I started pumping the same day he was born. I think a few hours later, because fortunately, I didn't need a c-section (I'm not sure if that would have changed things). I pumped every 3 hours, with one longer stretch at night. This morphed into my pumping schedule that I maintained throughout the first 6 months - which was pumping at 7 am, 10 am, 1 pm, 4 pm, 7:20 pm, 10:30 pm, 3 am. I cringe a little thinking about it.

The first couple sessions I got a big fat zilch. I think within a day, I was getting maybe 1 mL. I remember the first time I filled a 10 mL syringe! The early milk is very special and was marked with a green dot to ensure that Peanut got it as soon as he could.

It wasn't long and I was overflowing my 6 oz bottles (on each side) into my lap. Our upright freezer, our fridge freezer, my parent's freezer, and my aunt's freezer were all full of frozen milk. Not to mention the NICU freezer, plus all the milk that Peanut ate along the way. It was pretty crazy! It's easy to stock pile since he couldn't take milk for about a month, and even then it was so little at at time!

Here are some things that I did that may have contributed to my milk supply. The funny thing is I was flat out told I probably wouldn't be that successful because I have PCOS.

1) I drank a whole lot of water. I'd hate to try to guess, but I toted around a 32 oz cup (the hospital gave me) and refilled it several times throughout the day. By the way, I hate drinking water. My husband always reminds me, and while I complain, I know it's good for me so deep down I appreciate the nagging :)

2) I ate. A lot. I mean I just never stopped eating. Even though, I lost weight (I was pumping so so much) but I literally couldn't eat any more than I already was and anyone that knows me at all knows that I love to eat. (Side note: This is really coming back to haunt me now that I've stopped pumping...I'm trying to retrain my self control and it's tough!)

3) For the first month I rented a hospital grade pump. This was awesome for 2 reasons. One, the hospital grade pumps just work really well. Secondly, I didn't have to worry about whether I should drop $250 on a pump if I wasn't able to produce or keep up with it. Minimizing stress is good! After a month, things were going well so I bought a Medela Pump In Style Advanced. It was a little noisier than the hospital grade pump (Medela Symphony) but I noticed no difference in my milk supply.

4) I told myself that any milk I would provide Peanut was a good thing. I never once counted or tracked how many ounces I got. I just flat out didn't worry about. I just did it.

5) I got a lot of sleep - took occasional naps during the day if needed.

I'll say that I absolutely despised pumping. It hurt a little at first, but I hated it because I hated being tied up allll the time. I hated washing the pump parts. And most of all, I hated leaving my baby's bedside to go PUMP. I was missing out on valuable time, and my husband would get to stick around and hold him. Unfair. But I was doing it for him!

I pumped for a very long 14 months. I pumped 7 times a day for about 6 months. Originally I wasn't going to keep pumping after I went back to work, but I was worried Peanut would get sick so I just decided that I would keep at it, and just reduce the number of pumps as I got overwhelmed, reminding myself that I was allowed to quit at any time.

When I went back to work I made a decision not to pump at work. I also made a decision that I would only get up at night if Peanut did. Peanut started to sleep through the night at 6 weeks, which meant that I was only pumping 4 times a day. I pumped 4 times a day from about 6 months to about 11 months. Then holiday season hit and I didn't want to be secluded, so I dropped to 3 times per day. Peanut's first birthday hit and I dropped to 2 pumps per day - my supply took a pretty good hit, my period returned, but I kept on keeping on because I wanted him to have the antibodies. I waited until I was ready to risk willing drying up my supply completely before I dropped to 1 pump per day, which was at 14 months, and also coincided with the end of RSV (more on that later) season. When he turned 15 months, and RSV season was over, I quit. Between the fresh supply and frozen stash, Peanut got 100% breast milk for 15 months. It was so so liberating to be done.

Tips for keeping at it

1) Use a hands-free bras so you can do other things while pumping (like using a computer, reading, helping with baby if needed, etc.) I just about quit at 2 weeks before I got one of these dudes - it totally saved me.

One option is to buy this. My problem with it was that I didn't want to change into this bra 7 times a day. It was winter and I was wearing a lot of heavy sweaters and that was a pain.

Another options is to rig up a bra you own, like this. Can't say I tried it.

The solution I discovered was to use this bra. Since it has a dip in the front, it worked just by slipping the pumping cups into the bra, so I didn't have to change my bra or rig anything up. Super convenient for someone pumping a lot.

2) My husband took all of the night feeding when Peanut came home, and I'd pump sitting next to them. It would have been too hard to do both and I would have quit much sooner.

3) Nobody else did, but finally one day I asked if I could pump at Peanut's bedside. They set up a curtain for me and I could pump sitting next to him so I didn't feel like I had to leave and lock myself up in a room. :) I might have been embarrassed at first to do this, but if you do it once you'll never look back.

Remember

If you don't want to pump, can't pump, aren't successful, have little milk supply, or just hate it, don't worry! The stress of the NICU can make it difficult to establish and maintain a great supply, but don't let it get you down. Remember that every little bit helps and that the first days are the most important. If you choose not to pump at all, some NICUs have donated breast milk that they will be able to give your preemie. If your NICU doesn't, I believe there are organizations you can contact to try to get donated milk. The moms that donate are screened and it is a very safe and beneficial option to consider.

If I did it all over again

I'm sure any lactation consultant would cringe if they read this. If I did this all over again, knowing what I know now and that I had plenty of supply, I wouldn't have pumped at night when Andrew was in the NICU. I would have dropped the 3 am pump. Yeah, I had great supply, but balance is important and now I realize that it really wasn't necessary. If, heaven forbid, we go through this again, that's what I'll do. If I need to supplement with formula, I will!

Everyone is different and you need to do what works for you.

p.s. I didn't use any of the traditional methods that I've heard of to boost supply, so I can't comment on their effectiveness!

Weekly inspiration - Romans 5:3-5


“And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, produces character, and character produces, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us." Romans 5:3-5

Tuesday, June 15, 2010

The rest of the NICU stay - 117 days

After a couple of detours, we're back to the story.

I told you about the first few days in the NICU in this post. Now I'll try to briefly (it's never brief, is it?) tell you about the rest of our stay.

Ask anyone who's experienced in the NICU, and they'll probably described it as a roller coaster ride. The ride starts out scary and is bumpy along the way. It has a lot of ups, a lot of downs, and you don't know what to expect. As the ride continues, it generally gets smoother and smoother, hopefully without any surprises along the way, but you never get too comfortable.

First, I'll talk about the NICU staff. Wow. It's absolutely amazing what they are capable of. Take comfort in knowing that they are one smart, incredible group of people. Neonatologists, nurses, nurse practitioners, respiratory therapists, dietitians, speech therapists, on and on and on. Not only do these people know their stuff, they act quickly.

For example, when our son's lung collapsed. They called us into the back room to view his chest x-rays. The doctor had 3 x-rays for us to see. We both had to sit down. The first one, he explained, was normal. The second one, he explained was all cloudy where his lung collapsed. The third one showed where the chest tube was inserted to vent the lung, and it was already healing. I wish I'd known everything was okay prior to the entire 5 minute discussion, but it was pretty incredible how fast they'd gotten from problem to solution.

Thankfully, our son didn't require any surgery during his stay. He received artificial surfactant (thank you March of Dimes!!!!) after birth to help his lungs be more flexible. His heart ductus closed with ibuprofen, so he avoided surgery. He had several eye exams (he passed thankfully), also after he came home from the hospital, to ensure that he wasn't developing ROP (Retinopathy of Prematurity - one of the most common causes of blindness in children). He has 2 blood transfusions, I believe both during the first week or two. He had a spinal tap to ensure there was no infection. He had blood pricks on a regular basis to make sure things are in check. He slept in an isolette, which was heated because he was too small to maintain his own body temp. He was also nested in a bundle so that he would feel more like he would be in utero. He mostly slept on his stomach because it aids digestion and is easy to breathe. We couldn't touch him for a while because that would have been stressful for him, and gradually we could rest our hands on him, and later hold him during kangaroo (skin on skin) care. He moved to a traditional baby bed when he had more meat on his bones - at about 5 lbs. I wish I could recall more about the first time I held him. I don't think I moved a muscle! His heart rate and oxygen levels were constantly monitored. He had lots and lots of people looking after him.

He had 2 head ultrasounds revealing both IVHs in his brain. Although he had a level 2 and a level 4 (worst), his level 4 was on the small side and both resolved. There was nothing to be done for this, and we were told that what it means in the future is unknown, but that in his case the long-lasting impact would probably be minor. They reiterated that babies' brains have a great ability to rewire themselves because they are not developing and that parenting can really impact the outcome. Their big suggestion that we heard loud and clear was to be involved, challenge him, and read, read, read. We started immediately and had a little library of books in his cubicle.

He was on a ventilator, oscillator, CPAP (continuous positive airway pressure), a high flow nasal cannula, and a standard nasal cannula, until one day he was weaned to room air with no breathing assistance. (Oh happy day occurred at 37 weeks gestation - - so, 11 weeks later!) We are so thankful he did not come home requiring oxygen. Most of our son's problems revolved around his stiff lungs (RDS - respiratory distress syndrome) as well as feeding.

Feeding

He initially received nutrition via TPN via IV initially, and later a PICC line in his leg (more long term solution). The TPN fluids contain everything he needed to maintain adequate nutrition. Then, at some point, I can't recall when, they start giving him breast milk via tube. I believe they started with 1 mL but I cannot remember. They watch him very closely (by withdrawing stomach contents and examining) for any signs of NEC, and gradually increase the amount of milk the baby gets to ensure it can tolerate the milk digestion. Then, once our son reached 34 weeks gestation, when babies develop the ability to coordinate their suck-swallow-breathe mechanism, we began oral feeds. He did well during his first feeding but it wore him out. I'd have to look it up but I believe he ate about 10 mL. Whatever he couldn't eat, they'd give to him via a feeding tube so he could rest. They fortified his milk so that it is more calorie dense (so he has to eat less!). As he gained weight, they gave him more milk. The requirement to come home was that he must be able to take all his bottles for 24 hours while gaining weight. Sounds easy enough...poor little guy did pretty well, but was stuck at 50% bottles for months, and then started to downright refuse. A week after his due date, we were scared and didn't understand why our son would not eat. They started to talk about sending him home with a feeding tube when we eventually learned that he has severe GERD/silent reflux with no clues! Once medicated (Prilosec!), he started taking bottles within 2 days. Then one evening, during a busy night in the NICU, he ripped his own feeding tube out. It's like 8 inches long so it was pretty funny. And they didn't make him put it back in! About a week later he started gaining weight (albeit slowly with fortified milk to 24 calorie per ounce instead of 20 calorie per ounce)...and we were home!

Daily Stuff

We were involved in his care. Most days we got to take his temperature, change his diaper, change his clothes (he wore clothes after about a month - he swam in preemie clothes) and fed him (once he was older than 34 weeks gestation) and did kangaroo care (skin to skin).

And I can't forget weigh in. He was weighed every night at 8:00 PM. You better believe I wrote down every single weight, in grams, and that we put the graph in his baby book. The doctors think us engineers are pretty silly sometimes.

We also did a lot of visiting with nurses and asked a lot of questions. Not only did we want to understand what was going on, but we wanted to understand how these contraptions worked and what this beep and that beep meant etc. We got to be pretty knowledgeable. We even know when his alarms were going to go off before they did :)

Fun Stuff

We did have fun too! We got to give him baths when he got big enough. We read to him. We did crosswords and wrote in my journal and played video games (Nintendo DS) at his side. We took breaks to get food in the cafeteria. We brought in pictures to hang. His nurses made him pictures and signs and documented so many of his milestones. I brought my digital camera in with me every day and took way tooooo many pictures - that was very therapeutic. I pumped a LOT and prayed a LOT. We stopped by the hospital's chapel every night to ask for God's strength and help.

Schedule

We visited him every day and every night. Thankfully we live very close and have no other children or pets to take care of. I worked part time and spent the afternoon with him. Then my husband and I went back to see him every night after dinner. We had a regimented schedule that went like this. We took one night off a week to relax. We spent most of the weekends there too.

6:00 - wake up
7:00 - pump
7:30-12 work, pump at work at 10:00
1:00 - pump at hospital
4:00 - pump at hospital, go home
wash pumping parts, eat dinner, etc.
7:20 - pump at hospital
8-10 - visit baby
10:30 - pump at home
11:00 - bed
3:00 am - pump at home ! sometimes call to check in on our little dude.

It was a long 117 days. The beginning was the most difficult, with the end also being very difficult in a different way. Andrew came home just prior to reaching 43 weeks gestational age, with a conditional of a 2 day weight check that he passed. :)

I think I covered most of it!

Monday, June 14, 2010

Question asked

"Is it difficult for you to tell this story?"

Eh, not really. Writing this does remind me that I don't want to go through this again, but I don't hold onto that time in our lives. I'm not bitter or angry about what happened to us. I think there was a reason, beyond the medical reason, why it happened. I try to take the good from it and apply that to our lives now.

Granted this is easy to do, because our son is bigger and stronger now.

I hope and pray that this doesn't happen again, and even more important, I hope that in years to come with further research, situations like this can be minimized.

Sunday, June 13, 2010

Back the train up

So I guess my first post should have been an introductory post, explaining the purpose of this blog.

While it's fairly self explanatory from the title, it's more than that. This is not about me.

I want to help moms. Moms like me. Moms who might be able to recognize symptoms before it's too late. Moms who are on bed rest, at risk for delivering preterm, who are looking for hope in success stories. Mom that want to believe that anything is possible is God. Moms that have been diagnosed who want to have another healthy, term baby, and are facing life-altering decisions about how to go forward. Moms who want a friend to talk to who understands.

First Days

The stats: 2 lb 3 oz, 13 inches, and a whole lot of feisty.

The first days after our son was born are kind of a blur.

They let us stay 3 nights (instead of 2) in the hospital since we were in close contact with the doctors at that point. This mean we celebrated New Year's Eve in the hospital too. Recovery wasn't too bad, but it took me a while to regain my strength enough to walk.

My husband saw our son for the first time when I wasn't there. I really should ask him about it. Later that day, they brought me a blue piece of paper with our son's footprints. He had big feet. His 2nd toe was longer than his big toe - just like me!

The day after he was born, they wheeled me in my hospital bed to the NICU. They'd offered a tour when I was pregnant, but I decided I didn't want to see it yet. I couldn't believe it. I'd expected little metal beds in rows, and this place had a little "home" for each baby and murals on the walls. It was really nice. Lots of beeps. Lots of babies.

Peanut, as we called him, was in the corner nearest the doctor's room. We thought that was a nice place to be! We couldn't touch him or hold him, but just look. I imagined he would look like a newborn, just smaller. He was longer and skinnier than I expected. I couldn't see his face because he was intubated and it was hiding under tape. He had a lot of hair. His skin was red - like lobster red. I remember thinking "I need to figure out a way to quantitatively recall how small he really was"...and then I measured. That's the engineer in me. His wrist was as big around as my pinky finger.

We were told he was doing well. I didn't know what that meant, but to me, it meant he was fighting. They said he was really cute and very, very feisty. Funny - he still is.

Lots of things happened the first several days. Blood transfusions, ventilators, collapsed lung due to a pneumothorax requiring an oscillator, head ultrasounds revealing worst grade (4) and a (2) IVH, and correcting his open PDA ducturs in his heart (thankfully via medicine, not surgery). It was tough. But Peanut was fighting and after a week, fairly stabilized. The doctors were pretty sure he would make it.

Born at 26w2d

They wheeled me into a labor room for prep. They checked me, finally after 2 weeks, and I was 7 cm dilated. I got an epidural (It was so easier than I expected). I was so numb I couldn't even feel my butt cheeks, and finally for the first time in 2 weeks I wasn't in pain. Awesome.

The took me to the OR to deliver because it was literally attached to the NICU. A team was waiting. The baby was out within 30 minutes - 3 small pushes.

I distinctly remember listening to see if he could cry. He did!!!!

"It's a boy!!!"

He came out all wiggly and they set him on my stomach for a split second while they cut the cord. Then they whisked him away.

My husband and I were still calm. Scared, but hopeful. We had an overall feeling of "we did the best we could" and prayed for God's help.

Saturday, June 12, 2010

The Hospital Stay

I'll try not to get too wordy with this one! :)

To sum it up:

-At 24w2d, I was taken to an amazing hospital with an amazing NICU. I am so so grateful for this. I was told it's a level IV NICU, but I don't know if that's accurate.

-Another quick exam indicated that because I was too far dilated and with my water bulging, I was not a candidate for a cerclage. Bummer.

-I wasn't having any regular contractions - just a tiny bit of irritability on the monitor (nothing I could feel) when I was admitted. I was monitored around the clock during my stay.

-I was told I would be at the hospital until I delivered, and that it would be very unusual if that were more than 1 or maybe 2 days.

-The neonatologist laid it all out for us. We decided they have one of the toughest jobs on the planet. They did a great job though of being personable and also clear and professional. They told us that the odds of survival (50%) at 24 weeks, many of those facing risk of significant long term problems. They told us to consider how hard we would want to fight if we were to deliver at 24 week baby, with the biggest risks being intraventricular hemorrhaging (due to immature blood vessels in the brain) and I cannot recall the other. They told us ever hour inside is critical, and how statistics dramatically improve over the next few weeks. And so we had our mission. Keep that baby in (as if you have any control over it...)

-The doctors ordered that I lay in the trendelenburg bed position, which means that the bed is slightly tilted such that your head is below your feet. In other words, they were using gravity on their side to keep pressure off my cervix and hope that my water didn't break. They did let me sit up to eat.

-I was put on a Magnesium Sulfate intravenous drip. Magnesium Sulfate is meant to decrease uterine contractions and delay labor, although I think I've heard some controversy regarding its effectiveness. I surely hope it helped because it makes you feel really awful, especially when you're laying upside down!

-I received one round (consists of 2 injections, 24 hours apart) of steroid shots to increase fetal lung maturity. The doctor's goal for me was to stay pregnant long enough to get both injections. We were very happy to make that goal.

-Towards the end of my stay, I received 2.5 rounds of Indomethacin to try to stop uterine contractions when the magnesium sulfate wasn't enough. A risk to this medicine presents itself to the baby because it may result in the heart ductus not closing on its own after birth, but it was worth that risk that could be addressed later.

-My body hates catheters. That's enough about that :)

-We had not even talked about names....we came up with a boy (Andrew) or girl (Clara) name.

-I couldn't do a lot (I was too dizzy and "upside down"!) but we had visitors, celebrated Christmas with presents, decorated my room (well, I watched!), colored, ate all day and ordered strawberry shakes at night, prayed a LOT, played a ton of Euchere (I won a lot more than I usually do because I was loopy and taking huge risks!!) and Gin Rummy, I got massages (doctors orders!), and I did some yoga in my bed (well, what I could do with my arms!), and had inspirometer contests (I was getting fluid in my lungs so I had exercise them by blowing into this device that measures lung capacity!)

-All we wanted for Christmas was to still be pregnant. Best Christmas present ever. Oh, and my friend brought me a mini real Christmas tree and our familes had Christmas in my room :)

-I came up with a whole list of things I wanted to patent to improve hospital beds, patient comfort and entertainment, etc. but I never did that. I should.

-My husband and I are Catholic and probably were closer to God going into this situation than we'd ever been. I'm so glad we were because it really helped us get through it. The priest came to visit us, in a blizzard, on Christmas Eve for an Annointing of the Sick. I also wore a Scapular during my stay (and later, Andrew had it at his bedside), which was loaned to me by my grandma, and has been passed to various members in our family in emergency situations.

-I stayed pregnant for...ready for it...2 WEEKS!!!!! *insert cheering here*

Although I have a whole lot of people to thank for this, and I really have to give my husband huge props. He can get pretty stressed out easily in tense situations...but in this situation, the most stressful situation either of us have ever been in, he was amazing! He was so optimistic and calm, and so I was too. He told me that I was the best wife, the best mom, the toughest person he never met, and that whatever God's will was, we were okay with it. And that's how we truly felt. We were hoping God's will for us was a healthy baby, but we recognized that we don't always understand His will and that he has bigger reasons that may be beyond our comprehension so we have to trust Him.

-Finally the night came. I knew it wasn't going to be long. I was bleeding for the whole 2 weeks and it got really heavy. I could feel contractions and they were starting to get painful! I hadn't had any cervical checks prior to this point (did not want to risk disturbing anything!) so we really didn't know how fast I was progressing. I had very painful contractions all night long. They were giving me more and more meds, and Nubain (wonderful drug...!) for pain the last couple of hours, but contractions were getting more and more intense. They told me to call and tell them if anything changed, so I kept buzzing the nurses "it hurts more!!" and eventually the answer was "there's nothing more we can do."

-My favorite nurse came in at the start of her shift at 7 AM and said "I think it's time." We all knew it was.

The Doctor

I talked to the nurse and she didn't sound alarmed, but said I should probably be seen. I even debated about whether to miss my meeting at work, but decided I should since it was an additional 45 minutes drive from my doctor's office, which was already across town.

I drove 45 min to the doctor. I had to do a urine test and was a whole new scared when there was red blood.

The doctor wanted to do an exam. She looked and was so quiet I could have heard a pin drop. I knew it wasn't good. Then all she said was "I'm sorry."

Not what I wanted to hear.

She explained that my membranes (water) was bulging out of my cervix and that I needed to go to hospital right away. The biggest fear that my water would break at any time, forcing my body in labor immediately. I wasn't having any contractions and was about 1 cm dilated (but she didn't want to look any further so that was an estimate) - - she tells me I have an incompetent cervix.

She told me to call my husband (at work) while she called an ambulance. I'm laying on the exam table, in my gown, afraid to move a muscle, and my husband is in a meeting at work. I call about 5 times. Desk phone. Cell phone. No answer...I can't even leave a message and just leave a blubbering mess of sobs.

Thankfully, my mom lives just down the road from my doctor and she's home (thank God!) and we get ahold of her. She's at the office in no time because she'd just gotten in her car to run an errand. The ambulance arrived fairly quickly - I'll never forget the look on the nurses faces, staring at me with pained expressions as they watch me leave down the long, narrow hallway.

The ride to the hospital took for.ever. It was just beginning to snow - the roads were really icy. The paramedic was really nice and I was calm, considering, although I didn't appreciate the bumpy road and hoped it didn't break my water (possible irrational thinking!)

So, to recap, up to this point, here were my symptoms:

23w - noticed increase in clear, mucousy discharge (TMI, but just sharing to help anyone else out there recognize symptoms) but wrote it off as "pregnancy stuff"

late in 23w - had a (Braxton Hicks?) contraction, but that was it, which can be normal

24w1d - noticed increase in back pain, pink spotting

24w2d - bleeding


Thank goodness my husband urged me to go the doctor. I think if I'd waited any longer it would have been too late.

Moral of the story: always follow your gut and NEVER ever hesitate to call your doctor. No question is dumb and you're not being annoying.

Uneventful Pregnancy


I was due on April 6th. I knew 3 other girls due within a week from me. Some of us were comparing our pregnancies. Mine was strangely easy. No morning sickness. No nausea. No spotting. Nothing. I had a little back pain in the morning, but passed when I got up and around. I went to prenatal yoga classes, I took my vitamins, and I didn't eat lunch meat or drink coffee or alcohol. I was insanely hungry in the first trimester. I gained 3 lbs in the first trimester and had steady weight gain from the on out. My 20 weeks appointment was perfect. We were waiting to find out the sex because I like surprises and I thought it would be a good motivator to get through labor :-) By 24 weeks, I was up 11 or 12 lbs (I forget) total.

But come 24w1d..something changed and my husband urged me to call the doctor. My back really, really hurt and I started spotting. Then I Googled "pre term labor" and I got really scared.

I called the doctor first thing Monday morning...

How it started...

I have PCOS. I was diagnosed in high school and it was controlled with birth control pills until my husband and I wanted to have a baby.

The doctor gave me 2 options - I could take clomid or Metformin. I thought about it and decided I wanted to correct the root problem first, and was fearful of multiples, so we tried Metformin first.

I started on a very healthy, low sugar diet. I tried to exercise, get enough sleep, and do everything in my power to help my body ovulate. I charted for the full year, hopeful that I would some day see a temperature spike.

If anyone is curious, this is the diet I used that year while on Metformin. Note that when I say "diet", it was not my intention to lose weight (as my weight is already a healthy mid-range weight), but to get my body/hormones/insulin on track.


-Tried to incorporate protein in every meal. (So for example, eating toast with peanut butter instead of toast with butter!)

-Eating low sugar foods such as:
Trader Joe Natural Peanut Butter with no added salt (Sooo tasty and I hate Jiff now!)
Trader Joe Low Sugar Jelly
Home made yogurt (It's amazing how much sugar some store bought yogurt has)
Home made granola (low sugar, easy to make!)

-Swap out all white bread/rice/pasta for whole wheat whenver possible

-Avoid all desserts, coffee drinks, sugary cereals, etc.

-Enjoy snacks such as peanut butter on celery, almonds, fruit, string cheese, home made granola (low sugar, healthy) on home made yogurt

-Drank 2% milk. I've read that whole milk is better for fertility, although being a Skim drinker I couldn't handle that, so I settled for 2%!

Finally, after a year of trying, and after 3 months of increasing the dosage of Metform to 500 mg twice daily, I ovulated and got pregnant that cycle. It was ironic considering I still hadn't had a period all year :) Seems a little crazy, so I thought "this is our miracle baby"...little did I know how true that was going to turn out to be.