Battles and Blessings

Where has the time gone?

I have lost it in a whirlwind of craziness and chaos.

I have to admit I am beginning to struggle a bit (perhaps more then a bit), not sure how to regain my footing and push on through. The last two months seem to have been a series of battles. Not hard battles just many battles. I have been trying my best to find the blessings in them.

I am sitting here eating snicker doodles rather then drinking the glass of wine that I really want because Buddy (what I have decided to call my 5 month old son) is refusing sleep. He is over tired and fighting it! I am afraid that once I give in and go get him, I will have to feed him, hence the sacrificial glass of wine.

The battle: mommy is tired too and would love a quiet glass of wine followed by her pillow instead of the anxiousness I am feeling listening to him fight against sleep.

The blessing: We spent a wonderful day with my grandparents, full of hugs and love. But also probably the reason that he is overtired.

It seems so small but all of these small battles are becoming the proverbial straws.

So I am going to list some of my bigger battles that have accumulated over the last two months because at least I might feel better about sitting here trying not to cry.

Battle: Buddies MCADD diagnosis which equals to small amounts of sleep and an intense fear of germs and illness.

Blessing: He is beautiful and growing and strong AND we have averted all crises.

Battle: Working full time with a schedule that has been continually changing since returning from maternity leave.

Blessing: I have a job and I really love what I do and my co-workers.

Battle: Since my many schedule changes my hubby and I are pretty much on opposite shifts. The time off we do have together seems to be filled with other obligations. Dinner together has happened once in the last two weeks.

Blessing: Our children need little daycare and the majority of the time they are with family.

Battle: Recovering from bladder lift surgery. Six weeks of lifting 10lbs or less. They did make an exception to my lifting restrictions- I can lift Buddy even though he is already 17+ pounds. But I cannot lift Boo (my 2 year old daughter).

Blessing: After my six weeks is up I will hopefully no longer pee my pants when I laugh, sneeze, cough, or run.

Battle: Potty training Boo.

Blessing: She is starting to get it. It is exciting to watch her grow!

I could probably go on and on. But I probably should go and try to get Buddy to sleep for the forth time tonight.

I am struggling more then I thought I ever would. The Blessing? I have been getting myself back to church. Something that I have not done in years. Though I am not sure I am going to make it tomorrow. After three hours of trying to get Buddy to bed, my plan is to sleep in tomorrow if at all possible. But if I don't make it, my heart is still there.

First Scare

We had our first MCADD scare this week.

Monday morning I dropped the kids off at my sisters, fed the baby at 10:30 before I left to work. At 2 I called to check in and she told me he hadn't eaten anything yet. He had a fussy morning and seemed to have a belly ache but at her first attempt he didn't want to eat. He was napping but she was going to wake him to eat at 2:30, the 4 hour mark.

She called me at work at 3:30 telling me that she still couldn't get him to eat. She tried breatmilk and formula and he was having none of it. My husband was closer so I called him to run over there and I quickly tried to call the genetic counselor. Of course she is not in on Mondays. I grabbed my emergency letter from my wallet and called the pager number. Luckily I was patched through to the geneticists office in Oregon. I got a real person who promised she would call back. I waited, and waited, and waited. It seemed like forever though only about 10 minutes. I couldn't wait longer so I called them back. In her haste she forgot to ask my name and had taken down the wrong number. She told me that the geneticist wanted us to take him to the ER. Panic set in as I called my husband.

HE WAS EATING. By the time it was all said and done he had gulped down 6 ounces which is a lot for him. I called the geneticists office and they told me that we didn't need to head to the ER but to feed him more often the rest of the day.

I am so very glad that we didn't end up in the ER. I am SO very thankful.

Back at it...

I think I have just about survived my first day at work. And I am proud to say that I have not shed a tear. Yesterday however was another story. I think I pretty much cried all afternoon. My hubby started out understanding and considerate and by the evening he was frustrated. I understand where he was coming from, I was pretty much ruining my last night before I was back to work.
I hope that I get home and my house is still standing and everyone is snug in their beds. Then the guilt will lessen and perhaps make it possible to sleep. Is it weird that I am excited that I get to wake the baby for a night time feeding just so I can hold him in my arms a few hours sooner? I guess there is a plus to baby having MCADD tonight.
So I work in a hospital in the MRI department and I have a fairly decent schedule for being fairly low on the totem pole. I work 12 hour shifts 3 days a week till about 10 at night. The problem is they are changing up our staffing model, and so far the plans for the future absolutely stink for my family. I am really trying to not freak out.

Do I want to work every evening till midnight leaving my hubby alone to put kids to bed? Leaving the only time for yard and house work on the weekends. And no time for my spouse and I.

Do I want to work every weekend making it impossible for us to leave town but making it so that I can tuck my babies into their beds at night?

It is seeming that we are going to have to make some hard choices......I have been trying not to freak out thinking that somehow it is going to work out ok but it is not looking likely. Really not exactly what I wanted to return to.

Defeated?

I wake up in the morning vowing to be a better mother. And by the end of the day I am hoarse from telling my daughter 100 times to leave her brother alone or to stop tormenting the dog. I feel defeated thinking how much I would have rather been hoarse from singing songs and laughing.

I wake up vowing to eat better and by lunch time I have been to the pantry more times then I can count. I feel defeated thinking how much I want to lose this last bit of baby weight.

I wake up vowing to run my old loop around the neighborhood and I feel defeated when I am too tired to even try or I only make it a few yards farther then last time.

I wake up vowing to complete all of my physical therapy exercises and feel defeated when I make it only through a fraction of them.

I wake up vowing to get the toilets scrubbed and the floors clean and feel defeated when all I manage is to get the toys picked up or the dishes put away. (notice I said or, it is usually an or, not and)

I wake up vowing to be a better wife and yep you guessed it... I feel defeated when I can't remember if I even asked him how his day was.

Am I defeated? Not hardly. I would be defeated if I didn't wake up and try to be better. And I really feel that if I keep trying I will get better at something if not all things. I am just going to keep on, keepin on.

An hour really does make a difference.

After my rant that night the baby has slept from alarm to alarm. And I must say it is such a blessing! An hour really does make a difference. I won't lie to you and tell you that I am not dragging my tail every afternoon, I am still tired but there is light.

This light is coming at the perfect time because I am gearing up to head back into the work force. I am full of anxiety!

Will my baby survive without me?

Will my family watching him go crazy with my constant phone calls and questions about his eating?

Will I be around for his first giggle?

Will I survive?

I know that I survived my return to work after having my daughter but this is a little different. Does everything have to be about MCADD? The answer is: not everything but most things. The best part is that it feels as though less and less is about MCADD.

What a difference an hour makes.

Ok not really. I was entirely gleeful heading home from the appointment with our geneticist to find out exactly the value of an hour but for some reason God has different ideas.

Our appointment went well and we were given the go ahead to go four hours between feedings. Problem is our house guests last weekend headed back to Portland, their daughter leaving behind a little bug she had. Now everyone, except for me, has the sniffles. The sniffles to our 11 week old baby boy has left him with fitful sleep. I was so excited to find out what it felt like to add an hour to my alarm clock, unfortunately I am still waiting to find out.

I know that I am having a pity party right now and truly I am more worried about my families health then getting more sleep. So far no one has spiked a fever and everyone is eating well. That, in my life, is the most important thing.

Calling all FOD moms....

We have our first appointment with the geneticist this Wednesday. I am compiling my list of questions for him and don't want to miss any important questions since he isn't local and only comes here quarterly.

I am asking for your help....is there anything that you all think is important to ask?

Thank you for everything these past two months!!!

First things first

We had two firsts this weekend.

The first, first....

Immunizations! As we approached my sons two month check up I was excited to see how much he had grown. I see it daily from the new smiles to the new cooing to the rolling over to the holding his head and chest up. I know he is getting chubby and stronger by the day but for some reason having the baby's doctor notice makes a world of difference. My victory for all the sleep less nights. (and I mean sleep less rather then sleepless, there is some sleep just less). But with the 2 month check up also came the immunizations.

As the day approached I got sick to my stomach. With my daughter her "shots" made her fussy and feverish. I was worried that the same would go for my son. Then I got to thinking, "does that mean I need to feed him more often?"...."What did they tell me to do if he gets a fever?"....

Well he and I both survived. He did get fussy and as instructed I gave him a dose of tylenol. Turned out though that he was merely gassy. So I had to laugh at myself.

The second first....

We took our little guy camping. If you can really call it camping. We stayed in an RV park in something more like a condo then a camp trailer.

I was a little worried about going. My sons immunizations were the same day and I was already nervous about that, and there is always that little worry in the back of my mind, what if he won't eat? But I came armed with bottles and formula and I knew where the nearest ER was.

I don't want his diagnosis to change our lives drastically and I don't want him to miss out on a single thing in life. I do realize that he won't remember this camping trip. He will see pictures when he is older and probably not care all that much but his sister loved it. She loved every minute of it and that made it worth it.

Bruneau Sand Dunes

Robbing Peter to Pay Paul

After several heated discussions with my husband I have decided there is no way to get everything done.

I have been back at the gym and I am excited to be back running. The problem? An hour and a half trip to the gym puts me an hour and a half behind at home. I get back and depending on when I left I am either scrambling to get dinner made or my daughter in the bath tub. By the time I feel like I can breath I look at the clock and its 9, the time that baby boy and I prefer to be in bed with the lights out.

There you have it. So what gives? My alone time with my hubby and a calm end to our day.

I could try to get more done during the day but I am having a difficult time occupying my 2 year old daughter without the help of the television. I would stick her in the backyard but she doesn't stay where I can see her.

What to do....I am struggling. As soon as I walk through the door my "runners high" quickly sinks to a low as my family all starts making their demands. Not that they are really demanding they just have needs. My husband is also struggling with the same thing but he doesn't see the kids all day so he misses out on them in lieu of yard work or a little exercise. So then I panic because in 4 short weeks I throw work into my mix too.

I am panicking. Going back to work is daunting. I love my job and in all honesty we rely on my income. I would switch roles and have my hubby stay home but he provides the insurance for himself and the kiddos. He stayed home with my daughter until she was 9 months old and even then she had limited time in daycare. Now with an infant with MCADD I am struggling to not at the very least do the same for him. I am scared for him and want to know I am doing what is right for him. I keep telling myself that I have given it to God and that whatever the solution, it will give me peace in my heart. So far no ideas we can come up with is doing that for me. I may have to take a huge leap of faith to keep my hubby home at least when I am at work and to sacrifice a little us time and extras now while the kids are young. Maybe I haven't fully given it to him. I trust that his will is what is best for us. I just feel like time is running out.

No Rest for the Weary

We have had our first battle with stomach flu at our house. Even though it was the worst 12 hours that I have had in a long time I am thankful for a few things.

1. That it was my daughter and not my son with MCADD. I felt guilty all day thinking that, I don't want her to be sick either but the thought of an ER visit with our infant is daunting. I imagine I will feel like that every time she gets sick.

2. That it happened on a Saturday night so my husband was home to help. I am sure he would have loved it to be a different weekend however because he had run Robie Creek that morning, "the toughest half marathon in the NW."

3. That my mom came over to keep the baby away from his sister while we ran around with buckets and towels.

4. That we were able to take short naps yesterday. 2 hours of sleep is not enough for an already sleep deprived momma.

5. That my mom is coming over again today. Baby boy decided that nighttime was over at 6am this morning. So even though big sister is sleeping away, we are both wide awake.

6. That I remembered I have an appointment this evening for a free hour massage.

I could come up with a few more things to be thankful for but I will let it rest at that.

(I am not however, thankful for the rain falling outside my window, I am definitely over the unusually wet spring we are having.)

My husband I am sure would shake his head right now at my positive post since less then an hour ago I was giving him such a bad time for going to work instead of changing the babies diaper. I have an excuse: sleep deprivation.

He hasn't been sleeping in the bedroom with us (sad I know, I miss him but at least he is somewhat rested) he keeps the baby monitor with him in case I need him in the middle of the night. Last night I asked that he listen for the alarm clock because I was afraid that I would not be able to get up.

In the middle of the night I awoke with a start and there was a dark face looming over me. I have not been so startled, I jumped and my heart started racing. Once I figured out what was going on he asked if I got up for the 12:30 feeding. Again my heart started racing and I threw off the covers not having any idea what time it was. Luckily it was only 12:50 and that he did get up to wake me up.

Do you think the massage therapist will mind a little snoring this evening?

Say Uncle

OK so I quit. I threw in the towel. I couldn't do it.

I figured that after 10 "accidents" the timing was not right. She is most definitely not ready. I think she can do it, I just don't think she wants to do it. So we will wait for the right time for her rather then what was the right time for me.

Potty Training Day One

I should have known today wasn't going to be great. Baby boy had a difficult time going back to sleep after his feedings last night so needless to say I am tired. So it probably is the wrong day to start potty training.

My daughter always uses the potty first thing in the morning so she can get her morning purple jelly belly. After that we put on big girl panties. We bypassed the plastic pants at her request because they "hurt." I did explain that if she had an accident she would have to wear them. We got breakfast started but she was acting sort of sad. I picked her up and gave her a squeeze. She took my face in her hands and looked like she was feeling sad for ME. I think it was her way of saying sorry for what I am about to do to you.

15 minutes later her pants were wet. We cleaned her up and put on new panties covered by plastic pants.

15 minutes go by and we go to sit on the potty again only to find her pants filled with poop.

Frustration sets in.

I clean her up and put her in new panties and plastic pants. Mind you in between I am trying to get her brother fed, changed, and his pants changed.

15 minutes later, success.

15 minutes after that wet panties.

Now I am considering next time just letting her sit in her wet plastic pants until she tells me she is wet.

Also up for consideration is aborting the mission altogether. I thought she was ready and now she seems determined to not be. Maybe having a new baby in the house has really impacted her more then I thought it would. I was hoping to use my last 6 weeks at home to get her potty trained.

Well looks like option number one. She told me she had to go poopy only to find her panties soaked through.

Can I let her wear diapers forever?

Good news...

After two rounds of blood tests baby's tests came back normal. A little anemic but nothing to worry about. My second opinion doctor came up with a plan to see if we can get his bilirubin down. He wants me to feed him only formula for two days and see if that makes an impact. I could not agree. I do not do well with pumping only because I don't feel like I pump the same amount that he eats. I worry that if I pump exclusively for two days then my milk supply will decrease.

I wish I was one of those mommas that had tons of breast milk. Sadly I am not. When I was breastfeeding my daughter I compared my milk to gold. I fought for every drop to store for when I had to go back to work. Now, same story. Someone told me that it is better the second time around. I have found that to be true only because I am more comfortable and feel like I know what I am doing. We were encouraged to give my son a bottle at least once a day so that he would be used to it. I had been pumping so daddy could give him that feeding. Again it has been difficult to get ahead even that one feeding plus a little extra for when the dreaded end to maternity leave arrives.

So I made a compromise. He can have one to two feedings of formula and I will pump those feedings to save for when I have to go back to work. The physician thought that would be enough to tell if my breast milk was contributing.

If anyone one has tips on how best to increase milk supply I am all ears. I have tried somethings but so far no luck.

Successful Sunday

My Sunday was an absolute success!

Success # 1

Our local ski hill takes 45 minutes to get to even though it is only about 16 miles away because of all of the turns and curves. So far this season the drive up has made my daughter sick every time. We have learned to pack towels, extra clothes, and barf bags. We also have decided to wait to have breakfast till we make it to the lodge. Now this is something that we can't do with our son because of his MCAD, though the genetic counselor assured my husband that if he does get car sick as long as he eats once we get there he will be fine. We are hoping that it turns out he has a stronger stomach then his big sister. Anyway, we made it all the way up with no vomiting. It was slow going and we did have to pull over twice but we did not have a mess to clean up and my car will still smell good this week.

Success # 2

My daughter skied on her own. She is usually wedged between her daddies legs and he is holding her up under her arms. Today she did it herself. Of course daddy had the harness just in case she got out of control. The best part? It was a beautiful day so I bundled up baby boy and put him in the front pack, he loved it, and I got to watch my daughter ski.

Success # 4

Lunch on the patio with good friends. Ahh, grown up conversation!

Success # 3

I got to spend the entire day with my hubby. I have been giving him a bad time about me finding a brother husband. My husband works full time, is on the reserve team for our local paramedics, is training for the toughest half marathon in the northwest, and has been painting a friends house because he broke his leg and can't do it himself. Needless to say he has been gone a lot. He made me a yummy salad for dinner and I even stayed up to watch a movie just to soak up a few more minutes with him.

A few hiccups in the day, a few yawns here and there, and some serious bags under my eyes (thank goodness it was sunglass weather) but it was one of the best days ever.

Yellow Belly

Our 5 week old son is having prolonged jaundice. At 6 days old he seemed a little yellow so the pediatrician decided to test his billirubin at the same time as his confirmatory MCADD test. It turned out that he did have a bilirubin of around 18 so they put our little guy on a billi blanket. After 6 days his level dropped to around 15 enough to get rid of the blanket. For some reason in the weeks that followed he was not looking any less yellow.

We contacted the pediatrician who told us not to worry. I couldn't help but worry. Finally we convinced her to test it again. It was still hovering around 15. I asked if his MCADD could be to blame, she said no. She said we would test again in a week. Meanwhile I contacted the genetic counselor and asked her if his MCADD could be causing the elevated bilirubin. She thought that was probably not the cause but could be the reason that he can't get rid of it. Here we are one week later and his bili level has not really budged. According to the phone call from her nurse, the pediatrician is "very happy with the results and she wants to test him again two weeks from now."

Momma is not so happy with the results. Last night as I laid in bed, stomach turning with anxiety, I decided that I needed a second opinion.

Today I took my little guy into the family practice doctor that I see. He was awesome! He did not make me feel like a paranoid parent. He also said that there was no reason not to test him for anemia and liver function. We are awaiting those results and hoping that they come back negative. He also said that he agrees with the genetic counselor. It would make sense that if he has a liver enzyme disorder it might be harder for him to get rid of it since bilirubin is removed by the liver. However our pediatrician says that because infants have immature livers the bilirubin is removed by the GI tract. Argh!

I am feeling better at least we will know for sure that nothing else is the cause. I am praying that everything comes back negative. It just means that I have to patiently wait for the jaundice to go away. My husband has been having me stick the poor little guy in window to soak up the sun, someone told him it helps.

Our little sun bather

Guilty

Thank heavens for all of the comments from the FOD mommas!!!! They help more then you know.

Yesterday was one of those days where all we really did was survive.

I was feeling extreme guilt for letting my two year old have a Dora the Explorer marathon. Luckily my hubby came home and we all went for a walk to soak up the sun, it has been very rainy the last 4 weeks and it was nice to catch the sun while it was out. We were only out for 15 minutes but that has to erase a few minutes of Dora from my guilty conscience. Right?

Baby was pretty fussy all day so he took pretty much all my attention all day. As I was trying to go to bed my two year old started crying out in her sleep. Oh how I wish my husband had still been home. As I ran to her room the baby of course started screaming. I took him with me into her room, I held her as he lay screaming on the foot of her bed. Mommy guilt is the worst kind of guilt in the entire world. Luckily my daughter was easy to get back to sleep even with the baby screams coming from the end of her bed. But that was all it took to feel defeated. I had planned to make the baby transition easy for my two year old but I don't feel like I am doing a very good job.

Speaking of jobs I admitted to my husband that being at work sounded better then being at home lately. Of course I feel guilty and when the time comes for me to go back to work I am going to be devastated. I still haven't quite figured out how that is going to work. I am praying that God will give me direction and will help us choose the right thing to do.

I am going to throw a goal into all of this: do something special for my daughter this week.

Here we go again.

What started as a blog about melanoma quickly turned into a blog about goals. I discovered that when caught early all you can really say about melanoma is: remember to wear sunscreen.

So for some reason shortly after child birth God decides to give me just an extra little challenge. With my daughter (now two) came the melanoma diagnosis. With my son (one month) came the discovery that he has a genetic disorder called MCADD. Although the first few weeks were pretty scary we have come to learn that it is something that is very manageable, basically the little guy cannot fast. So I am getting him up every 3 hours to eat whether he wants to or not. For me it has just been a matter of learning to live with very little sleep. The part where this disorder gets frightening is when he gets a fever or the stomach flu. His metabolism will run high and he won't feel like eating, or he won't be able to keep anything down. We then have an express pass at the ER and he goes in for an IV of glucose. We have had a meeting with a genetic counselor and are waiting for an appointment with the geneticist. Our geneticist comes to Boise from Portland 3 times a year so we have to wait to meet with him until his next visit. I am hoping that he will let the little guy go a little longer between feedings.

So instead of melanoma, or goals, or MCADD I have decided to focus my blog on survival. Dramatic I know.

It is all worth it and I wouldn't trade in anything. Not my sassy, fun little two year old or my beautiful little boy that just needs to eat, not my crazy husband that always wants to do something because he can't sit still, and not my desire to run even though I dread heading out to do it. I am going to charge into the day with bags under my eyes. If the house is still standing and I have had a shower at the end then it most definitely has been a great day!