Tuesday, March 31, 2009

Fun at the waterpark

We went to the water park and boy was it fun!! My teenager had been there years ago, and requested to go again. As always, I was a little apprehensive about taking Randy. I want to do "normal" family activities with him, but I don't know how to quiet the worry. I worry about him having a shunt malfunction. I worry about him catching a "bug" from someone. I worry about him being overstimulated.

Fortunately, we were not far from home. Actually we were closer to the neurosurgeon at the water park than we are when we are at home. So I did not have to worry what I would do if he got sick. Next I was worried about how Randy would handle all the people. His sensory issues are relatively mild and they have improved, but he still struggles around a lot of commotion and people. That is why we decided to skip a first birthday party. When he is in a stressful situation he whines and vomits and is generally cranky for the rest of the day and sometimes the next day. I hate to send him through things like that for my own enjoyment.

Well he did GREAT at the water park. He actually like the loud roar of the water falling around us. He looked around and played with us. He splashed around in the water and thought he could swim in the heated pool. He didn't even cry when the water got in his face. He only vomited twice, and I think it is because he swallowed a little water. It was so nice to do something with him that was not "therapy" related. Even during our play, i try to incorporate the things from therapy. But this weekend, we just splashed and played and said to heck with therapy!

So his first trip was successful. I have tentative plans for two more in the near future. The next one is in April for four days. This trip will be 12 hours from home. The next one is in June; destination unknown. So I pray for wisdom and the ability to discern between caution and irrational fear.

Mr. Randy in his first swim trunks

Saturday, March 28, 2009

Eating Woes......Fixed?

I am almost scared to type this entry in fear of jinxing our progress. I had been feeling down about Randy's poor eating. Well I talked about it to his OT and she suggested looking for a new nipple with a wider base. But before I did this, she wanted me to resume with thickening his feeds again. I used to make his feeds pretty thick with cereal to help his reflux. Since his reflux improved and he was eating baby food, I did not thicken them as much. Well she said that the thinner liquid could feel like it is choking him so he stops drinking to protect himself.

In addition to thickening his milk, I changed his meal schedule. I cut his bottles from 4 to 3 (he was barely drinking 3 anyway) and I spaced out his bottle and meals. I was following every meal with a bottle. This was how I was told to do when we first introduced foods. But now he takes a whole jar at a feeding, so he was just not hungry for his bottle. I moved him to a more "toddler like" schedule of 3 meals and 3 snacks (bottles). It is working wonderfully. He eats/drinks every 2.5 hours. He has drank 21 oz of milk for the last four days and I am too excited!!!!

Tuesday, March 24, 2009

Eating Woes

I need to vent about one of the most frustrating topics of micro preemie moms-feeding. Randy has had a fairly decent experience in the eating department. He has always had a weak suck and according to his swallow study, he expends a HUGE amount of energy to take his bottle. Randy was diagnosed with failure to thrive in September of 2008. Despite the fact that is was due to his fragile neurological state and many surgeries, I felt an immense amount of guilt. This was the second time I felt disappointed with being able to provide nourishment for my son; the first was when I stopped nursing him due to a milk soy protein intolerance.

He had the NG tube for a month and gained a pound. We shortened the overnight feeds and her gained another pound in a month. We stopped the night feeds and he gained another pound in a month. From October to February he gained 4 pounds! Whoo hoo!!

Now we are at the end of March and he has lost four ounces this past month. He has gone from consistently drinking 24-26 ounces of milk per day to me almost forcing him to take 15 ounces. I don't know what to do?

So far the docs are not concerned; maybe I shouldn't be. But I am. I worry about everything where he is concerned. Every milestone has felt so huge; and every set back has felt so huge.

For right now I will continue to work with the OT from Help Me Grow. She has suggested switching to a different nipple; I will try that. I am open to suggestions from others.

Monday, March 23, 2009

One year check up

Randy went to his one year check up today. He was suppossed to get shots, but he has been having a fever the last few days so the pediatrician decided to hold off for a week or so. I asked him when I was going to stop freaking out over every little thing about his health. He told me it would be a while and give myself some time. He told me that most of the time I have been right that it was more than it seemed. I love my doctor! He has been my daughter's doctor for thirteen years.

He asked a lot of questions about Randy's development. He was not happy to hear that he was not tolerating textures past stage 2 baby food. So.... we add another specialist to our list-speech therapist. I try not to get discouraged about where he is; most of the time I am quite pleased. I think it just is a reminder of what a battle he has fought and will continue to fight when I am asked questions about his development. Randy can:
  • sit up unsupported (but cannot get in and out of this position)
  • transfer things from hand to hand (will not hold an item in each hand)
  • "conversate" (still is not using many consonant sound like b, m, or d)
  • roll from belly to back (not back to belly)
I am to keep him on formula for at least three more months. This is going to be tough. He is falling out of love with his bottle. Ideally, he should drink 24-28 ounces per day. I am struggling to get him to take 18-20. It seems like he is losing his ability to suck. Hopefully speech therapy can help with this.

On a good note, he is on the chart for his actual age in height. He is in the 5th percentile! YAY! He is not on there for weight or head circumference yet.

Friday, March 20, 2009

Randy turns 1!!!!!

Oh happy day! Our little boy turns one. A year ago, it was hard to imagine the fragile little baby that they wheeled me in on a gurney to see has made it to this day. He looked like nothing I've ever seen before. My friend has 2 lb micro preemies eighteen years ago, so I thought I was prepared. But I realized later that I did not see them until they were a few weeks old. But today he is thriving!!! He may not be running around like other one year olds, but he's happy and developing more and more each day.

And he LOVED his birthday cupcake.

Wednesday, March 18, 2009

Latest MRI results

The nurse from the neurosurgeons office returned my call yesterday. I wanted to know the results of Randy's MRI taken last Wednesday. He had to get a repeat scan because his scan from last month showed inlarged ventricles. The latest MRI showed the ventricles to be smaller.

I should back up. Randy has hydrocephalus. This resulted from grade III Interventricular Hemorrhaging (IVH) shortly after birth. They are more commonly called "brain bleeds". Well the bleeds caused the spinal fluid to collect in the ventricles in his brain; thus resulting in hydrocephalus. He has a shunt, and has had many revisions. You can get more detail when I post the other parts of "his story".

I am now waiting on the nurse to talk to the neurosurgeon to schedule our next appointment. Hopefully we can wait three months, and then move to a six month schedule. This nurse is new, so it seems that I have to explain everything to her.

Monday, March 16, 2009

Randy's story-Part 1

The last few weeks have been really strange. It started February 26th of this year and I blurted to a co-worker "This is was the date that I was taken off work last year". I was 22 weeks and 6 days. SInce then, I feel myself remembering very vividly what happened each day after the day when the doctors said "Your cervix is short. Go to the hospital." For the next three weeks, I laid in the bed. I prayed. I checked emails and answered phone calls. I tried to mother my daughter from a hospital bed. I tried to love my husband from a hospital bed. But my most important job was to keep my son inside.

On Saturday, March 15, 2008 things headed downhill. I began having regular contractions again. All night I told the nurses I was contracting; but the monitor told a different story-no contractions. All night I tossed and turned. I was given pain medicine. Well, that lasted about an hour. The nurse became concerned. Put me back on the monitor-no contractions. In the wee hours of the morning, I found a pen and paper and used my cell phone to write down the times. I did this for an hour. The contractions were six minutes apart. I called the nurse again and she tried the monitor again-no contractions. She was concerned. She had been my nusrse several times during my two and a half week stay and knew I was not a whiner. She said she was going to manually check for contractions (she was an experienced nurse who had been working for a long time). Sure enough, I was contracting. She began to tell me when the contractions were coming.

Things began moving fast. I was given an IV and given a shot of a med called tuberteline (sp?). This was to stop labor. The side effect is that it makes your heart race. Ten minutes or so later, she was to give me a second dose, but my heart was beating too fast.

I was wisked away to ICU and they began giving me this drug called magnesium sulfate. If I live to be 100, I'll never forget how it makes you feel. You are hot, and disoriented, and weak, and high, and confused; shall I go on? I stayed on this drug for two days. It was not working. I dilated to three centimeters inthe process. They then tried Idocin again (it had worked when I was first admitted). It worked! They began to wean me off of the mag, and they almost got me off and BAM! contractions started again and I am now five centimeters. Back to the magnesium sulfate.

It's Tuesday. They know the baby is breech and he is in the birth canal. They turn my bed almost upside down. My feet are higher than my head. It's called Trundelberg or something like that. The purpose is to use gravity to your advantage. At this point the doctor suggests that my husband stay at the hospital. We know it's not long now. I pray harder than I can ever remember praying. My husband and mom tour the NICU (I did this about a week ago while he was at work).

The next morning I wake up VERY early to a little foot kicking me; it was my son's foot. The nurse checks me; she feels his foot hanging. He has to come out now by c-section. She goes to my white board, erases the number that was there and writes "26 weeks, 0 days". I was in bad shape. I had not had anything but liquids since Saturday, I was getting fluid in my lungs from the bed rest, I was having contractions, I was nauesous, my bones ached, and I was hanging upside down; but I longed to carry my son one more month, one more week, even one more day. I whispered to the nurse, "I can hang on another day." She shook her head no and said, "It's time."

Randy entered the world on March 19, 2008 weighing 1lbs 10oz and 13 inches long.

Saturday, March 14, 2009

I finally started a blog!

I've been wanting to blog about the experience of being a mom to a micropreemie for months now. With Randy's first birthday coming soon, I finally stopped procrastinating and started the blog. My next post will give an overview of our experiences to date.