Thursday, April 29, 2010

Infertility Awareness Week

My friend posted this on her blog and I thought that it explained things very well. Although it only took me just under a year and a half to get pregnant, I was diagnosed with infertility. There were many times when I thought that I would never be a mother. Every month when the fertility drugs didn't work was another letdown. Worse than that were the months when the drugs worked but I somehow still wasn't pregnant. It took a lot to not resent my body.

When I found out that I was pregnant, The Boy and I stood in the bathroom and hugged and cried for a good long time. Then we said a prayer of thanksgiving. Then we went out to eat. I was starving. :D

Here it is. An article on "Infertility Etiquette," found here.

Chances are, you know someone who is struggling with infertility. More than seven million people of childbearing age in the United States experience infertility. Yet, as a society, we are woefully uninformed about how to best provide emotional support for our loved ones during this painful time.

Infertility is, indeed, a very painful struggle. The pain is similar to the grief over losing a loved one, but it is unique because it is a recurring grief. When a loved one dies, he isn't coming back. There is no hope that he will come back from the dead. You must work through the stages of grief, accept that you will never see this person again, and move on with your life.

The grief of infertility is not so cut and dry. Infertile people grieve the loss of the baby that they may never know. They grieve the loss of that baby who would have had mommy's nose and daddy's eyes. But, each month, there is the hope that maybe that baby will be conceived after all. No matter how hard they try to prepare themselves for bad news, they still hope that this month will be different. Then, the bad news comes again, and the grief washes over the infertile couple anew. This process happens month after month, year after year. It is like having a deep cut that keeps getting opened right when it starts to heal.

As the couple moves into infertility treatments, the pain increases while the bank account depletes. The tests are invasive and embarrassing to both parties, and you feel like the doctor has taken over your bedroom. And for all of this discomfort, you pay a lot of money.

A couple will eventually resolve the infertility problem in one of three ways:

  • They will eventually conceive a baby.
  • They will stop the infertility treatments and choose to live without children.
  • They will find an alternative way to parent, such as by adopting a child or becoming a foster parent.

Reaching a resolution can take years, so your infertile loved ones need your emotional support during this journey. Most people don't know what to say, so they wind up saying the wrong thing, which only makes the journey so much harder for their loved ones. Knowing what not to say is half of the battle to providing support.

Don't Tell Them to Relax

Everyone knows someone who had trouble conceiving but then finally became pregnant once she "relaxed." Couples who are able to conceive after a few months of "relaxing" are not infertile. By definition, a couple is not diagnosed as "infertile" until they have tried unsuccessfully to become pregnant for a full year. In fact, most infertility specialists will not treat a couple for infertility until they have tried to become pregnant for a year. This year weeds out the people who aren't infertile but just need to "relax." Those that remain are truly infertile.

Comments such as "just relax" or "try going on a cruise" create even more stress for the infertile couple, particularly the woman. The woman feels like she is doing something wrong when, in fact, there is a good chance that there is a physical problem preventing her from becoming pregnant.

These comments can also reach the point of absurdity. As a couple, my husband and I underwent two surgeries, numerous inseminations, hormone treatments, and four years of poking and prodding by doctors. Yet, people still continued to say things like, "If you just relaxed on a cruise . . ." Infertility is a diagnosable medical problem that must be treated by a doctor, and even with treatment, many couples will NEVER successfully conceive a child. Relaxation itself does not cure medical infertility.

Don't Minimize the Problem

Failure to conceive a baby is a very painful journey. Infertile couples are surrounded by families with children. These couples watch their friends give birth to two or three children, and they watch those children grow while the couple goes home to the silence of an empty house. These couples see all of the joy that a child brings into someone's life, and they feel the emptiness of not being able to experience the same joy.

Comments like, "Just enjoy being able to sleep late . . . .travel . . etc.," do not offer comfort. Instead, these comments make infertile people feel like you are minimizing their pain. You wouldn't tell somebody whose parent just died to be thankful that he no longer has to buy Father's Day or Mother's Day cards. Losing that one obligation doesn't even begin to compensate for the incredible loss of losing a parent. In the same vein, being able to sleep late or travel does not provide comfort to somebody who desperately wants a child.

Don't Say There Are Worse Things That Could Happen

Along the same lines, don't tell your friend that there are worse things that she could be going through. Who is the final authority on what is the "worst" thing that could happen to someone? Is it going through a divorce? Watching a loved one die? Getting raped? Losing a job?

Different people react to different life experiences in different ways. To someone who has trained his whole life for the Olympics, the "worst" thing might be experiencing an injury the week before the event. To someone who has walked away from her career to become a stay-at-home wife for 40 years, watching her husband leave her for a younger woman might be the "worst" thing. And, to a woman whose sole goal in life has been to love and nurture a child, infertility may indeed be the "worst" thing that could happen.

People wouldn't dream of telling someone whose parent just died, "It could be worse: both of your parents could be dead." Such a comment would be considered cruel rather than comforting. In the same vein, don't tell your friend that she could be going through worse things than infertility.

Don't Say They Aren't Meant to Be Parents

One of the cruelest things anyone ever said to me is, "Maybe God doesn't intend for you to be a mother." How incredibly insensitive to imply that I would be such a bad mother that God felt the need to divinely sterilize me. If God were in the business of divinely sterilizing women, don't you think he would prevent the pregnancies that end in abortions? Or wouldn't he sterilize the women who wind up neglecting and abusing their children? Even if you aren't religious, the "maybe it's not meant to be" comments are not comforting. Infertility is a medical condition, not a punishment from God or Mother Nature.

Don't Ask Why They Aren't Trying IVF

In vitro fertilization (IVF) is a method in which the woman harvests multiple eggs, which are then combined with the man's sperm in a petri dish. This is the method that can produce multiple births. People frequently ask, "Why don't you just try IVF?" in the same casual tone they would use to ask, "Why don't you try shopping at another store?"

Don't Be Crude

It is appalling that I even have to include this paragraph, but some of you need to hear this-Don't make crude jokes about your friend's vulnerable position. Crude comments like "I'll donate the sperm" or "Make sure the doctor uses your sperm for the insemination" are not funny, and they only irritate your friends.

Don't Complain About Your Pregnancy

This message is for pregnant women-Just being around you is painful for your infertile friends. Seeing your belly grow is a constant reminder of what your infertile friend cannot have. Unless an infertile women plans to spend her life in a cave, she has to find a way to interact with pregnant women. However, there are things you can do as her friend to make it easier.

The number one rule is DON'T COMPLAIN ABOUT YOUR PREGNANCY. I understand from my friends that, when you are pregnant, your hormones are going crazy and you experience a lot of discomfort, such as queasiness, stretch marks, and fatigue. You have every right to vent about the discomforts to any one else in your life, but don't put your infertile friend in the position of comforting you.

Your infertile friend would give anything to experience the discomforts you are enduring because those discomforts come from a baby growing inside of you. When I heard a pregnant woman complain about morning sickness, I would think, "I'd gladly throw up for nine straight months if it meant I could have a baby." When a pregnant woman would complain about her weight gain, I would think, "I would cut off my arm if I could be in your shoes."

I managed to go to baby showers and hospitals to welcome my friends' new babies, but it was hard. Without exception, it was hard. Stay sensitive to your infertile friend's emotions, and give her the leeway that she needs to be happy for you while she cries for herself. If she can't bring herself to hold your new baby, give her time. She isn't rejecting you or your new baby; she is just trying to work her way through her pain to show sincere joy for you. The fact that she is willing to endure such pain in order to celebrate your new baby with you speaks volumes about how much your friendship means to her.

Don't Treat Them Like They Are Ignorant

For some reason, some people seem to think that infertility causes a person to become unrealistic about the responsibilities of parenthood. I don't follow the logic, but several people told me that I wouldn't ache for a baby so much if I appreciated how much responsibility was involved in parenting.

Let's face it-no one can fully appreciate the responsibilities involved in parenting until they are, themselves, parents. That is true whether you successfully conceived after one month or after 10 years. The length of time you spend waiting for that baby does not factor in to your appreciation of responsibility. If anything, people who have been trying to become pregnant longer have had more time to think about those responsibilities. They have also probably been around lots of babies as their friends started their families.

Perhaps part of what fuels this perception is that infertile couples have a longer time to "dream" about what being a parent will be like. Like every other couple, we have our fantasies-my child will sleep through the night, would never have a tantrum in public, and will always eat his vegetables. Let us have our fantasies. Those fantasies are some of the few parent-to-be perks that we have-let us have them. You can give us your knowing looks when we discover the truth later.

Don't Gossip About Your Friend's Condition

Infertility treatments are very private and embarrassing, which is why many couples choose to undergo these treatments in secret. Men especially are very sensitive to letting people know about infertility testing, such as sperm counts. Gossiping about infertility is not usually done in a malicious manner. The gossipers are usually well-meaning people who are only trying to find out more about infertility so they can help their loved ones.

Regardless of why you are sharing this information with someone else, it hurts and embarrasses your friend to find out that Madge the bank teller knows what your husband's sperm count is and when your next period is expected. Infertility is something that should be kept as private as your friend wants to keep it. Respect your friend's privacy, and don't share any information that your friend hasn't authorized.

Don't Push Adoption (Yet)

Adoption is a wonderful way for infertile people to become parents. (As an adoptive parent, I can fully vouch for this!!) However, the couple needs to work through many issues before they will be ready to make an adoption decision. Before they can make the decision to love a "stranger's baby," they must first grieve the loss of that baby with Daddy's eyes and Mommy's nose. Adoption social workers recognize the importance of the grieving process. When my husband and I went for our initial adoption interview, we expected the first question to be, "Why do you want to adopt a baby?" Instead, the question was, "Have you grieved the loss of your biological child yet?" Our social worker emphasized how important it is to shut one door before you open another.

You do, indeed, need to grieve this loss before you are ready to start the adoption process. The adoption process is very long and expensive, and it is not an easy road. So, the couple needs to be very sure that they can let go of the hope of a biological child and that they can love an adopted baby. This takes time, and some couples are never able to reach this point. If your friend cannot love a baby that isn't her "own," then adoption isn't the right decision for her, and it is certainly not what is best for the baby.

Mentioning adoption in passing can be a comfort to some couples. (The only words that ever offered me comfort were from my sister, who said, "Whether through pregnancy or adoption, you will be a mother one day.") However, "pushing" the issue can frustrate your friend. So, mention the idea in passing if it seems appropriate, and then drop it. When your friend is ready to talk about adoption, she will raise the issue herself.

So, what can you say to your infertile friends? Unless you say "I am giving you this baby," there is nothing you can say that will erase their pain. So, take that pressure off of yourself. It isn't your job to erase their pain, but there is a lot you can do to lesson the load. Here are a few ideas.

Let Them Know That You Care

The best thing you can do is let your infertile friends know that you care. Send them cards. Let them cry on your shoulder. If they are religious, let them know you are praying for them. Offer the same support you would offer a friend who has lost a loved one. Just knowing they can count on you to be there for them lightens the load and lets them know that they aren't going through this alone.

Remember Them on Mother's Day

With all of the activity on Mother's Day, people tend to forget about women who cannot become mothers. Mother's Day is an incredibly painful time for infertile women. You cannot get away from it-There are ads on the TV, posters at the stores, church sermons devoted to celebrating motherhood, and all of the plans for celebrating with your own mother and mother-in-law.

Mother's Day is an important celebration and one that I relish now that I am a mother. However, it was very painful while I was waiting for my baby. Remember your infertile friends on Mother's Day, and send them a card to let them know you are thinking of them. They will appreciate knowing that you haven't "forgotten" them.

Support Their Decision to Stop Treatments

No couple can endure infertility treatments forever. At some point, they will stop. This is an agonizing decision to make, and it involves even more grief. Even if the couple chooses to adopt a baby, they must still first grieve the loss of that baby who would have had mommy's nose and daddy's eyes.

Once the couple has made the decision to stop treatments, support their decision. Don't encourage them to try again, and don't discourage them from adopting, if that is their choice. Once the couple has reached resolution (whether to live without children, adopt a child, or become foster parents), they can finally put that chapter of their lives behind them. Don't try to open that chapter again.

Tuesday, April 27, 2010

Mourning Lost Expectations

Our first family photo.

When I came to terms with the fact that The Kid would be very premature (well, I never really came to terms with that until they gave me my epidural) and they told me that he had a 90 percent chance of living and an 80 percent chance of having no lasting problems, my biggest concern was that he would be the small kid in class. The Boy and I are not big people and we both come from short families. I was concerned that The Kid would get teased for being short/small and that he would always be picked last for sports teams on the playground. That made me sad, because I didn't know what to say as a parent to comfort a kid like that in those situations. I didn't even know how to be a parent to the sports all-star kid. I didn't know how to be a parent at all.

When they told me that The Kid had bleeding in his brain, they said that it was very common, very mild, and most likely would go away. After a few weeks (they checked it weekly) they told me that the bleeding had progressed to the point that learning disabilities and sensory disorders were likely and that physical or mental disabilities wouldn't be surprising. Wow.

My biggest concern upon hearing this news was that I wasn't prepared. I didn't know how to be a parent at all, much less the parent of a kid with special needs. I knew that it would be ok. It had to be. There were no other options. I certainly wasn't turning back now.

When I signed up for parenthood I didn't say it was conditional. I didn't say, "I want a baby with an IQ over 100. If I can't have a baby like that, I don't want one," or, "My baby must have at least mediocre sports skills." That would be ridiculous.

The Kid's primary nurse, who we love, told me that no baby, no matter how healthy when born, comes with a warranty around his neck.

I couldn't stand the though of calling my baby's brain "damaged." He was clearly nothing short of perfect. His brain just wasn't like everyone else's.

And yet, the day I found out about the extent of the bleeding, I just couldn't stop crying. I cried all day. I worried that I would get burned out as a mom to a kid with disabilities. I know that all moms get burned out, but I imagined the guilt that I would feel getting burned out because my kid took more patience and I couldn't be perfect. I imagined not being able to have deep conversations about life and science and literature and religion with my child. I imagined that he wouldn't be able to go to college or on a Church mission. I imagined being 70 and my child still living at home with me because he could never be fully independent and there was nowhere else that he would fit in. I imagined the other kids at school teasing him, not because he was short but because he was disabled. That thought made me cry even more. I thought of when I was in school and thought it was uncool to be friends with the kids who were different or "less cool" than I wanted to be. I felt so much guilt and anger. How could anyone not love and accept my child for the amazing, strong, miraculous person that he is and will be? The mere thought made me angry.

I got the news in the morning, before I left for the hospital. I went to lunch with The Boy where we choked back tears around his co-workers. I knew I just had to go see The Kid. I had to see him and know that he was the same baby that he was the day before, and to know that I still loved him just as much and that I always would. When I did see him, he was just as cute. Just as cuddly. I held him in my arms and looked into his eyes and knew that he was the person who he was meant to be and that I was meant to be his mother.

But still, I had to mourn the loss of the child that I always dreamed of before I could truly appreciate the child I had. My dreams and my reality may be very different, but in no way is my reality any worse than my dreams. Just different. And who knows--maybe The Kid will be just how I pictured when I was starry-eyed and pregnant. We don't know at this point. But it's dangerous for my emotional health to count on that. There are no guarantees.

And now the question is how to prepare. How much do I educate myself? I, personally, believe that I will go crazy if I learn everything there is to know about cerebral palsy or mental retardation at this point. Since learning disabilities and sensory disorders are practically guaranteed, I will learn everything I can about those. As for the others, I will wait until I know more about The Kid's condition. Hopefully he will have another MRI within the next few months that will be more revealing. Until then, I'll just enjoy The Kid.

I got pregnant because I wanted a kid. What I got was a kid. A more perfect kid than I could have imagined. Surprises, but no disappointments. Who could be disappointed with this?

Monday, April 26, 2010

The Bonuses of Having a Tiny Preemie

There are a few things about having a tiny preemie that are nice. I relied on this list for the three months that my baby was in the NICU. Here is what I have come up with: (Ok, they don't really apply if you had multiples or a c-section. Sorry.)

1) Easy delivery. Well, I've heard that for a lot of people it's worse delivering a tiny baby. I don't know why. From the time that they broke my water to the time that The Kid was born was 30 minutes. That's how long I pushed and the only miserable part was the contractions, which are the same no matter what size your baby is.

2) Easy recovery. Once the epidural wore off, I felt as though I had never been pregnant, much less given birth. They offered to wheel me in a wheelchair up to the NICU to see The Kid, but that just sounded silly to me. I walked. The most painful part for the few days after delivering was my back where the epidural went in. And my IV site. My hand hurt for over a month.

3) No stretch marks/dark belly button line/extra weight. At my six week postpartum check-up I weighed what I did before I got pregnant. Woohoo! I don't know how long I was at that weight; I don't have a home scale. And I went home from the hospital and put on my pre-pregnancy jeans. Yep. I did. They didn't look as good as they did before, but they still fit. And now they look just as good. And I never got that dark belly button line. Or stretch marks on my belly. Well, I got the short end of the stick with that, I guess, because I got one stretch mark in the middle of my belly when The Kid was two weeks old. Not fair. But still, I never liked my body as much as I did in those few weeks following The Kid's birth, merely because no one else gets to look that good right after having a baby. Sorry, ladies. :D

4) Someone else took care of the dirty diapers for the first three months. That was nice.

So, those are the things that I enjoyed about having a micro preemie. But really, the bad outweighs the good. Next time I will gladly endure 42 weeks of miserable pregnancy uncomfortableness. Give me all the stretch marks that will fit on my huge belly. I'm just trying to be optimistic because I have no other choice. Next time I hope it's different.

And let me dispel a myth: Just because your baby is three months early does not mean that you have three extra months to prepare at home. No. Once you are no longer pregnant, you lose all of that "nesting" stuff. I had no desire to paint The Kid's room. And I had no time. Instead of conveniently taking your baby with you everywhere you go (in your belly, of course), you have to spend hours in the NICU. Even when you have to be somewhere else, you don't want to be. And you only have a few hours at a time to do anything, because you have to constantly pump. It is not a time to prepare. It's a time to have no time to do anything else. So there ya go.

Saturday, April 24, 2010

Weight Carries a lot of Weight

Yesterday The Home Health Nurse came by to check up on The Kid and weigh him. He now weighs 9 lbs 13 oz (at five-and-a-half-months of age, or two-and-a-half-months adjusted age). The minimum recommended weight gain is three ounces per week. Here is how The Kid's weight gain has looked the last few weeks:

Last week he gained something like four ounces because he had a few days of bottles fortified to 27 calories (instead of the regular 24 calories).

The two weeks before that he only gained two ounces each week. The first week of only a two ounce gain they told me that it just wasn't enough. He was short on a few feedings that week, so we put the tube back in and made absolutely sure that he was getting full feedings every single day. Then when he only gained two ounces again The Nurse asked The Doc about it, and he said that it was enough. He's five months old, he said, and it's expected that he'll slow down his weight gain.

This week he only gained 1.5 ounces. Not enough. I still keep track of every ML he eats, and he ate more than enough this week. The Nurse said that I need to talk to The Doc about three options: 1) increasing The Kid's feeding volume, 2) fortifying my milk more, or 3) switching fortifiers.

Here are the problems with those options:

1) The Kid barely makes the minimum feeding volume as it is. If he was expected to eat more than 520 ML in 24 hours, we'd have to put the NG tube back in. It's just too much work for him.

2) Breast milk, on average, is normally 20 calories per ounce. I use Similac Neosure to fortify my milk to 24 calories per ounce. The Doc wanted me to fortify it to 27 calories per ounce, but we tried that for a few days and it gave The Kid such a stomach ache that he didn't want to eat at all. He was noticeably bloated. So, we backed down.

3) Apparently there are some other, easier-to-digest fortifiers out there that we can try. When The Kid was teeny-tiny (like in the three-pound range) and they tried to fortify his feedings with Human Milk Fortifier, he had such a hard time digesting it that they were worried about him perforating a bowel. An x-ray showed that his intestines were so gassy that they were all of the way up to his nipples. Poor guy. So, they stopped all tube feedings and just fed him through his IV and they used the "Anderson Tube"--they put a tube down his throat and sucked out all of the air and food from his tiny little gut. Poor Kid. Then, after he was out of danger, they started using Nurtamigen, an already partially-digested fortifier. He could handle that, thank goodness, but it doesn't have as much of the good stuff as Human Milk Fortifier (like protein). So, as soon as The Kid was bigger (I think around 5.5 lbs) they switched him back to the HMF. He was noticeably more gassy, but could handle it. So, now that you have the whole long story, it's easy to see that The Kid has a sensitive tummy.

I, personally, would like to see if The Kid can handle his milk being fortified somewhere between 24 cal and 27 cal before we try anything else. Maybe just adding a teaspoon of formula when mixing a big bottle for the day would help out just enough.

And why, might I rhetorically ask, does it matter so much that he gains just a little bit more weight each week? Let me tell you. If he doesn't get enough nutrition to grow, that means his brain isn't developing how it needs to. And we all know that The Kid's brain needs all of the chances for good health as it can get.

Thursday, April 22, 2010

My Favorite Game--The Waiting Game!

The Waiting Game began a long time ago. When The Kid was six days old The Docs did a head ultrasound and found bleeding in his brain. "Very minor and very common; the kind that usually just goes away and no one would ever know," they told me. Grade I on one side. It looked like it was already starting to heal, they said. Probably actually happened in utero. But don't blame yourself, they said. Well, that's a whole different story. But in this story, they checked The Kid's brain again a week later and found bilateral Grade I, almost Grade II. The wonderful Nurse Practitioner, Charlene, explained this diagnoses with pictures and all. Learning disabilities can be expected but not guaranteed, she said. And they would keep a close eye on it. And do daily head measurements to make sure that he wasn't getting hydrocephalus.

A few weeks later it was Grade II, almost Grade III. Learning disabilities and sensory disorders are almost guaranteed and physical or mental disabilities would not be surprising. When his eating abilities were drastically lagging behind what was expected of a baby his age, they did an MRI to check for unseen damage. They found one very small spot where the bleeding caused damage on the surface of his brain. It isn't bad enough to cause his eating problems, but depending on where it is in his brain it could cause mental retardation or cerebral palsy.

So, The Waiting Game begins. There is no real way to know what problems we may face with this "brain damage" until The Kid reaches his developmental milestones. So far, he is right on track. Thank goodness. All of his social milestones were reached early, as a matter of fact. A few weeks before his due date he smiled his first social smile at his favorite nurse, Catherine. I saw it. She was talking sweet to him, he liked it, so he smiled at her. It was adorable. He cooed his first coo at another nurse within the week following his due date; she was very much taken by surprise. I guess that doesn't happen much in the NICU. Weeks before that, I used The Clown (in two posts prior) to test The Kid's tracking abilities. He did great.

Now...we wait. He holds small, light rattles, but he doesn't yet bring them to his mouth. That should happen very soon. We practice every day.

It is very nice to know that there may be some delays, so I can take note of everything he does and get him help at the very earliest sign of trouble (and besides, there is an OT, an RN, and a case manager who visit regularly to check up on these things with me, give therapy, and show me what to do and watch for). But it sure is easy to go crazy. There is a very wide range of "normal ages" to reach milestones. If my kid is in the late range (according to his adjusted age) of normal, I'll probably start having heart attacks. Daily heart attacks. I mean, we can handle any problems that come our way, but waiting and watching for the problems is the hard part.

So, I just need to relax. I don't want The Kid to grow up too fast. I want to enjoy his tiny baby stages. Let's live in the present, ok? Ok. I'll keep telling myself that.

But for now check this out:

Does that look like a kid with cerebral palsy to you? No? Me neither. He clearly has control over his skinny little legs. And as we speak he is doing the same thing with his arms. He can't grab the toys yet, but he bats at them. Go, Kid!

And he played with his legs like that for at least 45 minutes straight. ADD/ADHD? I think not.

Autism, you might say? I might say that, too, especially since it's in my family, but the last time that The OT was here, she looked at him and he looked right back. They stared at each other. She said, with awe and delight, "He's the kind of baby who when he looks at you, he sees straight into your soul." And he does that often. Many, many times a day.

And he "talks." I say something, he looks at my mouth, I pause, he looks at my eyes and babbles something back to me. And on it goes. And he moves his mouth into many different shapes, as if he sees my mouth and thinks, "How do you do that? Is it like this?"

Ok, so I'm a little crazy, but wouldn't you be? Every little thing he does calls for celebration. I don't think we parents celebrate life enough. We have these little miracles who do these amazing things. Have some cake and ice cream. Why not? Life is good.

Wednesday, April 21, 2010

"The System"

The first time we took The Kid's NG tube out, it was out for two weeks and then he just couldn't cut it any more. He got full feedings for two weeks straight, and then was unable to keep it up. So we had to put the tube back in. It was in and out every couple of days for a week or so, and now it's been out for 11 days. Pretty much every night it comes down to the last bottle. If he finishes it, we can leave the tube out for another day. If he doesn't, he'll need the tube again. It is rather stressful. The only reason he hasn't needed it for the past 11 days is because we have been waking him up in the night. Stinks, I know. He wants to sleep through the night, but he just can't. Eating is more important than sleeping for this little guy. Sleeping is more important for me...but HIM eating is more important than ME sleeping. Motherhood. Oh, well. It's worth it.

But the night before last was different. I figured we'd give him a go at sleeping through the night again. He slept for eight hours straight, and by the end of the day he was 45 ML ahead of his minimum! So, I let him sleep all last night, too, and so far he is rocking the house!

Without The Kid's NG tube in, I haven't been so excited about breastfeeding him. With the tube, I could check residuals and know for sure how much he got. Without it, I have to guess. Since it takes more energy breastfeeding than bottle feeding, I worry that we'll waste too much of his energy trying to breastfeed and then he'll come up short at the end of the day, and "hello tube." That's just not worth it to me. I expressed my concerns to The Occupational Therapist, who visits every other week, and do you know what she told me? "Trust the system." The System? If I trusted the system my baby would have been starving to death. As far as I knew, the most he ever got breast feeding was about half of a full feeding. Sure, we top him off with a bottle after attempting to breastfeed, but by then he's tired...or is he full? I don't know! How should I know? Wet diapers? Sure. He has five a day, two of which are soaked. Does that count? The OT says yes. She also says that if I don't nurse The Kid multiple times a day then he'll decide he doesn't want to do it any more. Yikes.

So, I decided to have a little faith in The System. And surprisingly, it's working out quite well. I can tell when The Kid does really well by the difference in what I get pumping. And he is really getting better. This week my roller coaster is up. I think he'll succeed at breastfeeding. Maybe Purser will be a Nurser after all! And if not, at least he doesn't have a feeding tube down his poor little nose. And doesn't he look so happy about that?
I could just look at that handsome face all day. In fact, I do. And I just can't get enough.

Tuesday, April 20, 2010

Mad Skill

My mom, The Nana, made this adorable bear for The Kid. She crocheted it herself and I picked the color of yarn for the hat and scarf. She's thinking about selling them. She makes custom orders for the color of bear and accessories. She could also make different accessories, if you'd like. What do you think her asking price should be? Would any of you be interested in buying one? They are rather big. See?

As a bonus, they also come with a cardboard heart in the chest that she can put a special message on. The Kid's says, "I love you." Awww!

She also made this a-stinkin'-dorable clown that accompanied The Kid in his bed during his NICU stay.What do you think an appropriate price would be for The Clown?

Monday, April 19, 2010

The (Bother) Dog

Meggie Dog somehow got it into her head that she needs a treat at least once a day. Maybe it's because every day (or every meal, rather) for the past ten years my dad gave her a part of what he ate. Tisk tisk.

We want her to be happy with us in The Valley, so we have been giving her a treat once a day--but no table scraps. One night we were going up to bed and The Boy was calling Meggie to come up the stairs. She wouldn't come. He asked me if she had her treat for the day. She hadn't. And she just would not go to bed without getting it.

When my mom brought her here from Minnesota, the first thing I did when she got into the house was give her a milk bone. She proceeded to hide it. First in the corner of the dining room where we had a paint drop cloth. She tried to dig the plastic over the treat. That didn't suffice. She tried behind the dryer. Not good enough. Then the computer desk. Nope. Then the TV. Nope. I think by that point she either thought there was no threat in the house and it was safe to eat her bone or she was just too darn hungry. She ate it.

Another day I gave her a treat in the middle of the afternoon instead of before bed. I was in The Kid's room changing his diaper and Meggie Dog was in my bedroom with her milk bone. Then I heard The Boy's radio come on. We don't have night stands at the moment (that's what part of our tax refund is for) and The Dog was in the corner behind The Boy's books trying to find a safe hiding place for her treat. She stepped on the "on" button. I turned off the radio, uncovered the bone, said, "See, Meggie, that's not a good place to hide it. I found it. Ha." and proceeded to finish dressing The Kid. Then I heard the radio again. Crazy Dog. I turned it off and Meggie decided that it was best to eat her bone.

Meggie wanting my brownie.

Meggie waiting for her Beggin' Strip. She just couldn't hold still. She never tries to hide her Beggin' Strips. They're just too yummy. She can't risk any other dog finding it. Even if she hides it in such a good place as behind the dryer.
PS--When I told my niece that Meggie was going to come live with us (at that time she was living with my sister's family) she said, "I'll miss her, even though she is a Bother Dog."

Sunday, April 18, 2010

The Horses are Home!

The Shed

The Granddad was out here for a few days and worked really hard to get our yard horse-ready. A huge reason why we bought our house is for the acre with animal rights, which is hard to find in Utah Valley in our price range. Our house is perfect for us (although by no means perfect) and now it is perfect for our ponies!

Our family is now all together. The Dog is here, The Horses are here, and most importantly, The Kid is home. Now we can all relax and enjoy our lovely life. Well, now we have more chores, and we still have a lot to worry about with The Kid, but the view out of our back windows is better, and when I need a 20-minute sanity break, all I have to do is step out of our back door. It's lovely.
See? Hank is happy, too! (Visiting with Cody, the neighbor horse.)

They make The Mountains so much prettier.

Wednesday, April 14, 2010

Coping with the NICU Experience

Ok, so I know that most of the people who read my blog really have nothing to do with NICU babies, other than that they know my family. So, please, if you know anyone who is currently in the middle of their own NICU experience, or may be soon, or who are dealing with the effects of having a preemie, and you think this may be helpful, please refer them here. Thanks!

Why am I qualified to give advice on this topic? Maybe I'm not. But...I did spend 100 days in the NICU with my 27-weeker baby (90 days early) who dealt with small problem after small problem, as most micro-preemies do. What did we deal with? A partially collapsed lung, an open PDA that almost required heart surgery, being intubated three separate times, an almost perforated bowel, five weeks in the intensive care nursery, 9 weeks in the "eating and growing" nursery, being tongue-tied and needing a frenectomy, needing thickened milk, reflux without symptoms, and bilateral grade II (almost grade III) brain bleeds. Eating is still up in the air. He came home with a heart/apnea monitor and still needs it. He also came home with his NG feeding tube and still needs it from time to time. I like to think that I'm still sane after all of this, so I thought I'd share how I got through it all (up to this point). So here ya go.

(*Disclaimer: I have no idea how to deal with the reality that your child might not make it. My baby was given a 90 percent chance of living; if you are not so fortunate, I don't know how much my insight can help you. There is probably a lot that you can teach me. We all feel for you and wish you the best.)

Things to remember as a Stay-At-Hospital-Mom:

1) It could always be worse. Your baby could be earlier, sicker, etc. This could be your tenth child. You could be 16, alone, and without insurance. (If you are 16, alone, and without insurance, nobody judges you--we feel for you and admire your strength. That situation wouldn't be easy for anyone.)

2) Be glad that it's you with a baby in the NICU, not someone who can't handle it. You can handle it. Or else God wouldn't have put you in that situation.

3) It's hard to feel like a mom when you can't hold your baby and someone else (tons of people, in fact) is the primary caregiver. Enjoy all of the diaper changes you get to do. But then just enjoy the fact that you don't have to change every diaper! Especially the poopy ones. That's what your insurance pays the nurses for. :)

4) The end takes more patience than the beginning, but wouldn't you rather worry about your baby learning how to eat than your baby learning how to breathe and, you know, stay alive? When the end is in sight but still seems unreachable, relax. You'd rather have your baby stay too long in the NICU than come home too early. If he comes home too early, he'll probably just end up back in the hospital. You really don't want that.

5) It won't last forever. It feels like it will, but it won't. They can't keep your baby there forever. No NICU has ever sent a baby to kindergarten.

6) Every baby is different, but every baby is a miracle.

7) If your baby is facing possible long-term problems, relax. At least knowing about it this early puts you in a better position to provide early interventions and minimize the problem.

8) We all break down. Having a baby in the NICU is STINKIN' HARD! Go ahead. Cry. No one will blame you. Yell, even. You are dealing with more than many people face in a lifetime. It's hard seeing your baby on life support. It's hard not knowing what to expect, and just "seeing what happens" day to day. No one expects you to be superwoman. Besides, it's a mom's job to worry.

9) Pumping stinks. I despise it. It's like having twins, only you hate one. I hated going home with my pump and not my baby. You can't do anything without thinking about your pumping schedule. It hurts. You have to get up in the night, not to a crying baby, but to an alarm telling you that you need sit for 20 minutes of pain for the eighth time that day. Just remember: the first few weeks is important for your baby. When nurses and doctors are doing everything else for your baby, you are providing the very most important thing that your baby needs and no one else can do that but you! So, go ahead and schedule your pumping schedule around your favorite TV shows. Don't lose sleep over getting behind in your milk production. And when the time comes that you will be a better mom by not pumping, STOP! Pumping is a darn huge sacrifice and with all of the stress that your situation already gives you, you don't need to put yourself through more misery. Don't feel bad about stopping.

10) You can never, ever fill your miracle quota. Keep asking for miracles, because God loves your baby more than you do, believe it or not, and He wants to work His miracles for your benefit. It never hurts to ask for more.

And above all...

DON'T WORRY ABOUT WHAT YOU CAN'T CONTROL! Seriously. I know, it stinks not being able to control much about your baby's situation, but it will drive you crazy if you just sit and worry all day long. Just have patience. Have faith. Do what you can. And don't worry about the rest.

My very first time picking up my baby; two days old.

My very first time actually holding my baby; 13 days old.

Two to three weeks old.

Tuesday, April 13, 2010

Kids and their Legs

The other day The Boy and I took The Kid to our neighbor's house to see their new baby goats. They had two sets of triplets born in the last two weeks. It was my first time seeing baby goats and I had no idea how stinkin' playful they are. One baby, I swear, didn't walk anywhere--he bounced. This video doesn't capture it very well, but they're still cute.

They thought they were Mountain Goats.

Later that night, after I gathered everything for bed, I went upstairs to find this:

Too cute. I love my boys.

Monday, April 12, 2010

Happy Five-Month Birthday, Kid!

Today is the five-month anniversary of The Kid's birth. Five months ago...sheesh. It's so strange to think about the reality of that day. I woke up thinking that I'd be pregnant in that awful hospital bed for three months and by the afternoon I had a baby! It's been crazy since then, and yet the most wonderful five months ever. I can't imagine my life without The Kid.

At five months (two months adjusted age), The Kid...
  • weighs 9 lbs 8 oz,
  • wants to sleep through the night, but can't get enough to eat if he doesn't get an extra bottle in the we've been waking him up so that we don't have to put his NG feeding tube in,
  • knows that his arms and legs belong to him--he kicks his toys with determination and pulls his NG tube out with precision and accuracy (and scratches his face as he pulls at his tube, no matter how short his fingernails are cut),
  • wears size one diapers, newborn outfits, and 0-3 month onesies,
  • can roll to either side,
  • loves to smile and "talk," especially before feeding time and at The Girl, The Boy, The Grandma, and The Grandpa.
The Kid's growth is being documented with his little buddy, Flat Stanley. I have dreams of him taking Flat Stanley to school with him for show-and-tell, along with the first picture of him...

at one week old.
Then here at nine weeks old (four pounds bigger than at one week old).
Three months old.
And today! Five months old. Seven pounds bigger than the original Flat Stanley picture.
What a miracle.

Sunday, April 11, 2010

The (Crazy) Horse

Our next door neighbors have a horse and a daughter who is about my age. We decided to be riding buddies. My horses aren't yet at our house, but they are being boarded only about one mile down the road, so yesterday I drove to the barn, tacked up Hank, and met my neighbor for a little trail ride. (Ok, not really a trail ride, since you'd have to trailer your horse to any trails, but we rode through a neighborhood or two to a little park with a big patch of grass and no "no horses" signs. It started out well. Hank seemed really happy to get out. He was walking very briskly with his ears forward the whole way to the park. Once we got there I asked him to canter a little, and he TOOK OFF! Boy, was he feeling his oats!

I spent the next 30 minutes fighting with him to keep him from taking off with me. A mom and three little kids came from a house across the street to say "hi" to the horses, but I couldn't let Hank get close to them--he couldn't stop moving for even a second. Good thing Cody is a good horse and appreciated a little scratch from a toddler who couldn't stop smiling and saying, "horsey!"

The ride back was just as bad. I'm impressed that I still have that kind of strength to my arms since this was only my third time riding since The Kid was born in November. Hank was taken out of lessons at that time, too (he used to be a lesson horse for kids with disabilities, believe it or not). He was very happy to get out. And to not be in an arena.

Now I have blisters on my hands and I was too tired and sore to get up with The Kid early this morning. Good thing The Boy is such a good sport. What would I do without him?

Now I want to see a chiropractor. My back hurts.

Not bad for a 21-year-old horse, huh?

Some pictures of us competing in our younger years.
Can you imagine this horse giving lessons to kids with disabilities? Pretty incredible.

Western Pleasure at the MN State 4-H Horse Show
English Equitation at the same show--versatile horse, huh?
Just a little backyard practice.
Our much younger years.
Yeah, he's still got it. We may have to get us some blue ribbons at some shows this summer.

Saturday, April 10, 2010

The Play Date!

The Boy and I made friends with a few couples with babies in the NICU at the same time as The Kid. We figured that if we have to be germ-free, and they have to be germ-free, why not be germ-free together and try to maintain our sanity a little bit by getting together?

So, we got together! The Boys' very first play date ever.

Aren't they just the cutest little preemies ever? D. is on the left--he is the biggest at 14 lbs (I think). A. is in the middle and is a 10-pounder. The Kid is on the right, and he is 9 lbs 7 oz. When the other two were born, The Kid was about 6 lbs (I think) and made the others look tiny. Now they've passed him up. What good eaters! And what cuties!
And don't we all look smashing? Kids AND Girls. We are going to make a habit of it. Getting together, I mean. And probably looking smashing, too.

Friday, April 9, 2010

Purser's a Nurser!

The Kid and I have spent the last few weeks practicing breast feeding, and just a few days ago something clicked. (They told me something would click within the few weeks preceeding his due date, which was two months ago now. Hmmm.) Since he has his feeding tube in, I have been checking the contents of his tum-tum before and after breastfeeding to see how much he gets. He shattered his old record of 8 ML. He got 30. Whoa. And he made it look easy. Not a lot of struggle. It was nice. Kind of, I think, how breast feeding is supposed to be. And he's been consistent. The last four mornings The Kid has gotten 30, 39, 25, & 24 ML.

We had an appointment with The Lactation Lady at the pediatrician's office yesterday. She was thoroughly impressed with the handiness of the NG tube when it comes to looking at the contents of The Kid's stomach. She was also impressed with how well he nursed. She went to tell The Doc how The Kid has been doing, and he said, "So, Purser's a nurser, huh?" I like The Doc. And yes, Purser IS a Nurser!

Recently, I've been thinking that it will be just as likely that The Kid will learn how to nurse as it is that he won't be able to cut it with bottle feedings and will need surgery for a g-tube. Opposite ends of the spectrum, same likelihood. Just another "wait and see." But The Lactation Lady said that she thinks The Kid will be nursing well within a month or so. And apparently she's a miracle worker, so if she says it then maybe I can believe it. How nice would that be?

Tuesday, April 6, 2010

I can be positive.

They told me that only about one baby per year goes home with a feeding tube (an NG tube--in through his little nose, down his throat, and into his stomach). The Kid is one of the only kids who didn't learn how to eat by his due date. Stinks. However, there are some nice things about having an NG tube. They are as follows.

1) When you can't get him to burp like all of the other babies, you can use a syringe to pull the air out. Keeps him from throwing up. Nice.

2) You can feed him when he's asleep. Last night, for instance, he needed to be "topped off" to make up for not getting enough to eat during the day. He went to bed at 11:30. I went to bed at 12:45 (late, I know). I put an extra ounce down the tube while he slept, and he was full enough to make it to 7:30 in the AM. Nice. Really nice.

3) You can check residuals. One of the OTs thinks he has a slow-emptying stomach. I don't. How do I know? Before every feeding I check to see if he has any undigested food in his little tummy (by pulling it out with a syringe, then putting it right back in). If it's been a full three hours, he's completely empty.

4) You can know how much he gets when breast feeding. His record before was 8ML. This morning he was on a roll (of course, he was hungry after sleeping for 8 hours) and he got 30 whole ML! I had to use a huge syringe to pull that much out.

5) Instead of being hospitalized because of not getting enough to eat, I can put a little tube down his little nosey (ok, it's not that easy...he really hates it, and so do I) and voila! He gets food No hospital. That's the best part.

6) I can tell something's up. His stomach is irritated. Once or twice a day I pull up little tiny specks of blood. Yep. I wanna see a specialist.

So, what does this mean for my diaper bag? Well. We have a 60ML syringe, a 10ML syringe, extra duoderm and tagaderm (used to tape the tube to The Kid's face), an extra NG tube, and a stethoscope. Yep. Plus all of the normal baby stuff. It's nice, though. Twice now we've tube fed him in the car. What a time saver!

Having an NG tube has its perks, but it's also a little scary. If I don't check that the placement is right, I could put food into his lungs. That would be very, very bad news. Very bad indeed. But it's easy to check the placement, and I'm so used to it by now that I've got the routine down. I'm just glad that we're going through this at home, not still in the hospital. 100 days was enough for us.

Monday, April 5, 2010

If you laugh about it it hurts less.

Seriously? Look. Kate Gosselin carried her sextuplets to 30 weeks gestation. The smallest of the six weighed 2 lbs 7.5 oz--that's half an ounce bigger than my kid. The Octomom carried her EIGHT babies to 31 weeks gestation. Seriously. And I can't even take one baby past 27 weeks and one day. I have the same fertility problem as Kate (polycystic ovary syndrome). With the fertility meds I have to take, I have a 10 percent chance of having twins. Can you say "bedrest"? Yikes.
Four days before The Kid came.
My first time touching him.With The Boy's wedding ring.
You must understand...The Boy's ring finger is a girl's size 8.5. It's pretty small.

Saturday, April 3, 2010

Happy Mornings

The Kid always...always...wakes up on the right side of the bed. Even for his night feedings, he wakes me up by grunting, not crying. A normal feeding routine goes like this:

1) The Kid starts getting really smiley. He "talks" to me, cooing and smiling like mad.
2) After a few minutes of being extremely happy, he'll throw in a little bit of a cry. Just a few seconds. And it's usually sandwiched between coos.
3) The Hungry Leg gets goin'. You'll see.
4) If he doesn't get any attention after a minute or two (i.e., we change his diaper, move him into a new position, give him his binky, etc.) he cries until he gets attention. Then he stops.
5) Once his bottle is warm and he's on my lap, he'll cry a little more if the bottle isn't in his mouth fast enough.

This is big for him. The fact that The Kid can feel hunger--on time--and tell us--shows a lot of improvement from when he was full-term in the hospital. He's just been too content his whole life. The NICU OT even said that he had the best temperament out of all of the babies in the NICU. I love it when he gets ravishingly hungry. It means that he's closer to being an independent eater. I wanted to cry for joy the first time I heard his "hungry cry." It was music to my ears.

The cutest coo ever.

All smiles, first thing in the AM.

The Hungry Leg. He was cooing before and after this video was taken, too.

(These were all taken about a month ago. Caleb is now almost a pound bigger.)

See what I mean? I think I could handle three babies at once, if they all had The Kid's personality. I would just hope that they were at LEAST 30-something weekers. That's my goal for next time. Not three babies at once, but one baby in the 30s. 37 would be nice. 39 doesn't sound so fun, but I'd take it. It would still be better than the 20s. I'd just like a third trimester next time.

Thursday, April 1, 2010

Roller Coasters Make Me Sick

I had a good cry today. Putting a tube down The Kid's nose and into his stomach tends to do that to me. We cried together. I thought we saw the end of the NG tube, but I guess I was wrong.

We had an appointment with the lactation specialist this morning because it was time we start seriously trying to breastfeed. That's how good he was with the bottle. But these last few days he started his squirming, uncomfortable routine again and wouldn't take more than 30 ML at a time. In the past week he only gained 2 oz--he should be gaining almost an ounce a day. The OTs want me to get a referral from The Kid's pediatrician to see a specialist. I agree with them. If he can't get enough to eat from a bottle, how on earth is he going to succeed at breastfeeding? It takes way more energy. At least now I have a good pump so I can be ready to breastfeed whenever (or if ever) The Kid decides he's ready.

What have I learned?

I recognize that I don't have any control over this situation, so I try not to worry about it. I just do what I can; that's all I can do. But still, I'm a little sick of not having control over anything but my attitude. Having a micro-preemie is a roller coaster; I would have picked the Ferris Wheel if I could have, but when you decide to have a kid you just get in line and go wherever that line takes you. I'd much rather be on the roller coaster than not be at the park at all. And by the end of all of this, the roller coaster and I will be good friends. I'll know all of the twists and turns and I'll be able to help others who never signed up for that ride. And even though I would never call it fun, it's a familiar sort of comfortable. I could do it again if I had to, and hopefully it wouldn't make me quite so sick.

But really, please, just let me get on the Ferris Wheel next time.

The moral of the story?

It is worth every minute. My kid isn't like your kid, but he's still perfect. You don't need to be tube-free or wire-free to be perfect.

And all bad things must end.

The picture is deceiving; he really doesn't like the NG tube. He just has a hard time not smiling. What a sweet kid.