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JEREMIAH'S JOURNEY

M.L.D.

September 2010

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MIAH IS DOING GREAT!

Dec 19, 2009 10:16pm (EST)

Where should I start, its been so long since I posted last. For those of you who want the almond cookie recipe. I'll have to see if my Mom read the piece of paper its on. My grandma wrote it for me, and about a quarter of it is in English.
Things with honey's mother turned out really, really bad. We rode in the car with her, and I found out she thinks car seats are restrictive. Seat belts, too. I was appalled and I said something. We went out to dinner at a very nice restaurant, and she was letting honey's little brother climb on people's tables and scream. I was appalled and I said something. I really doubt she's going to be coming to visit again. Thats all I'm going to say about that one. As Honey puts my mother came to visit and hilarity did not ensue.
I had the weirdest phone call in the entire world from that incompetent doctor. They left me a voice mail stating that 'Miah has Type C hemoglobin and we should not have anymore Children because they could have Sickle Cell Anemia. On a voice mail! My family knows their history really well, we do have many issues, and this is not one of them. I have a genetic heart defect and a couple of other things. Honey's family is completely healthy. So, it raised a little red flag for me. I called back to see what was going on. The first time I called the nurse who had called me was busy. I waited for her to call for an hour. I called again, oh she went home. Can you leave a message for me? Oh no not over night, she'll never get it. So, I nicely explained the situation, and I was very nice and patient. How we would never go back, and all I wanted is to know what was going on so I could tell his real pediatrician. Oh okay, I'll just pull his file. Well, its says here on his last visit that we drew blood and ran his hemoglobin. Orly? Thats weird, he never went to the lab or had blood drawn, and I have the copy of his hemoglobin typing from the hospital here again. Then there was a long awkward pause. Oh well, it says here we did. So we did. I'll make sure the nurse calls you in the morning, Ive got other people to handle, bye, click. I'm moderately annoyed at this point, but really I had no idea how crazy this situation would get. The next morning at seven am, the nurse who had called me woke me up with Hi I was just calling you to let you know that you have no reason to be suspicious, your son has type C hemoglobin, its not a big deal, just accept it. I said oh really, you're going to have to answer a few questions for me then. When was this blood taken? Oh at the doctors office. I said No it wasn't, he never left my sight at the doctors office and no one pricked him, he did not even go in the wing of the building where the lab was. Oh okay, then the hospital ran the rest. I've got a copy in my hand of the test the hospital ran. Oh well, Jeremiah is a preemie, sometimes the hospital sends blood to the state. Thats where it came from. Then she hung up on me. Mind you, all I've been insofar is skeptical. I haven't said anything rude, or insulting. I heard a click, I've been hung up on before by irate customers. I know the sound. As I'm googling their phone number my phone rings. Guess who? Oh its on. Its on and popping. We argued for three hours. I got hung up on a grand total of ten times. I hung up on her a few times. At 9:55 I yell out check the *%$ #^*% paperwork. She hung up on me again. And at 10:05 she calls me back and apologizes. I was right. It was that Jimmy's. That kid whos name the doc kept calling him. I apologize too. We're buddies again. I am NEVER going to that doctors office again. And, I feel bad it escalated to that, but she kept calling me. Poking at me. Talking down to me. I want you to understand that I never called her back, she called me. I couldn't really help it. What I decided is we are obviously really immature and both at fault. So, I didn't complain about her.
Miah had his real appointment with the good doctor last week. I liked her a lot. She listened to my questions: Miah hates sleeping unless he's sitting up or propped up. Miah's eyes are occasionally gooky. He has random stuffy nose. She checked him out. He is totally normal. He does everything a baby his age should do. Even some things bigger kids can do. He can roll over from his tummy to his back. I thought he could do baby push ups. The things that I thought were baby push ups where he gets up on his hands and knees and rocks. I started walking at seven months. The doctors think miah is going to too!
I'm also in training for a new job. Its not what I wanted but, its less physical then dog grooming. Not getting pee'd or poo'd or bit on is a definitely a plus.So I have no complaints. I was a little bit worried about daycare, but then Honey got laid off. So, Ive got six months of daycare for miah. Every dark cloud has a silver lining!
I also finished 'Miah's Christmas shopping yesterday. He got five books, a couple rattles and a lion that does stuff.
Merry Christmas
Happy Festivus!

Posted by M.L.D. | Comments: (2) | Permalink

HAPPY TIMES!

Nov 12, 2009 12:00am (EST)

Last Saturday was my due date! 'Miah and I celebrated by making traditional dutch cookies with my friend from grooming school Amber. It took us three batches to figure out my Mom's recipe. Now we are traditional dutch cookie experts. 'Miah supervised us at this by grunting at us in his bouncy on the counter.
On Monday, 'Miahs grandma who lives far away in Conn. finally came to Washington to meet him. Unfortunately, the plane came in six hours late and he didn't get to see her until Tuesday. I also dropped off a resume at an auto repair shop. I'm a dog groomer by profession now. But, I'd really like to get back into the automotive industry. I miss selling car repairs. Truly, I can support my family better with the pay from selling car repairs. Yes I am married. Yes, my husband works. But, I have been the primary bread winner the majority of our time together. We've been married for almost five years, and together for twelve. We are both twenty five years old.
So Tuesday we made the trek to my husbands aunts house 45 minutes away to see her. 'Miah charmed everyone there. He showed them all that he can chew on his wrist rattle and rattle it. Its interesting to me that 'Miah has uncles that are about two years older than him.
Today we spent more time with Grandma, but they came to my neck of the woods to go shopping. First, we took Miah to a restaurant for the first time. He ate a bottle and snoozed in his car seat. He's just an awesome baby! He didn't even fuss when he got hungry. He started chewing on his hand like he does when he's hungry and I gave him the bottle. The restaurant was one of the ones that gave special deals to veterans- honey ate free and i ate at a discount. Honey's friend who is also a veteran joined us.
Then we met up with grandma. It was fun. I wasn't in a very sociable mood, so honey and 'Miah hung out with grandma while I purchased clothes that fit. Its pretty strange. I did not gain a pound while I was pregnant. I started out weighing 240 when I figured out I was pregnant. I now weigh 165. I went from a size 22/20 to a size 14/12. Its bizarre to me, but hey! It was easier then Jenny Craig.

Posted by M.L.D. | Comments: (2) | Permalink

WHAT A WASTE OF TIME

Nov 06, 2009 03:00pm (EST)

'Miah had his first doctors appointment today. We were scheduled for a doctor who didn't even read his chart before he walked into the exam room. First the guy started off calling him by the wrong name. I corrected him, no this is Jeremiah. He goes oh whoops wrong room. Comes back in, sits down and starts reading his chart. So Jeremiah was very ill when he was born and I think he should see a different pediatrician. I do typically take 36 weekers, but I didn't really hear that he had spent so much time in the NICU before agreeing to take him on. He didn't even examine him before saying that and he stood up like he was going to leave the room. My temper spiked, my husband thought I was going to hit that guy. I just spent three hundred bucks on 'Miahs insurance for the month, and a sixty dollar copay. Now I'm being told I'm going to have to go to a different place a half an hour away, pay more money and this guy just took money for telling me he could do nothing. I'm not calling him a doctor, he doesn't deserve the title. I asked are you going to bother with addressing our concerns or examining him? Oh no, I guess I could check him out. He gave 'Miah a once over.He asked me a really strange question: do you ever find 'Miah's coloring off, does he ever turn blue? I said "uhh no, if that happened I'd take him back to the hospital. His response was "Oh". My husband and I both thought that was a weird question. He also gave me a prescription for eye ointment and baby Tylenol. That was all.
I don't know how I feel. I'm not angry anymore, but I'm not sure if I'm satisfied. How did I get scheduled at this doctors office by the NICU when he only takes "healthy 36 weekers"? Does that mean that 'Miah is sick? I thought that he had a clean bill of health when he left the NICU. I'm confused.
Oh and btw does anyone know when its safe to circumcise a preemie? That guy didn't know and the new doctor won't see me until the twenty-something-th of November.

Posted by M.L.D. | Comments: (3) | Permalink

OCTOBER 18-31

Nov 06, 2009 03:24am (EST)

Sunday, October 18 was the date of my baby shower. I was pretty ambivalent about having it. I was out of the hospital, 'Miah was not. I felt that if you had your baby before the baby shower you should forfeit the baby shower. My friends and family disagreed. So we took a brief recess from the NICU for the evening. It was fun, although my friends and family don't mix well. My family sat in the corner and watched us play games uncomfortably. Stupidly, throughout my pregnancy if I saw a cute outfit for 'Miah I bought it. 'Miah's wardrobe was almost completely full by then, and everyone gave me clothes. I did get lots of diapers and wipes. That was a gift that I thought was pretty awesome, also not something I would think of giving. Most of my baby furniture is hand me downs from friends. Also, a lot of the main baby containment units, such as the bouncy seats, play pens and swings were hand me downs. . 'Miah ended up with three bouncy seats, two swings and a bouncy horse that he can practice his riding skills on. Maybe one day he will want to show jump or event like Mommy. Also on Sunday, his bed was changed to a little bassinet on wheels in the NICU. That was nice, the nurses said I could pick him up whenever I wanted.
Monday 'Miah had a big achievement! He got to learn how to nipple. It was so cool to watch. The nurse who did it, explained exactly what she was doing so that we could try doing it next time. His suck, swallow breathe was more like suck swallow, suck swallow drop stats. Then the nurse would tilt his bottle down, and oh man he'd get so angry.
Then next time my husband got to try, I was too nervous to try because I had never fed a baby. . The nurse stood right above the chair Honey was sitting in with 'Miah and directed him. I felt silly not doing trying, I could of fed 'Miah competently with the nurse helping.
I got fed Jeremiah the next time, and it was difficult. I couldn't tilt the bottle right. The nurse had to take my hand to show me. I thought you were supposed to put babies on your shoulder to burp, thats how my sister did it. Not in the NICU, I had to hold him up by his chin and pat his back. It was awkward, but I understand the necessity.
The next eventful thing happened on Thursday the 22nd. I came in after lunch, and 'Miah's IV on his head was gone! I looked all over, I even took off his clothes to check his legs, his IV was no where. I paged the nurse. Where his IV? The nurse said that he didn't need it anymore because they ended his antibiotics. She figured Miah would stay until Saturday. They were going to take his oxygen off early Friday. Since he was such a rock star he'd be off it for 36 hours and get sent home.
Friday he was off his oxygen for six hours before he dropped his stats. I can tell you, I was beyond disappointed. I went home, curled up with my dog and cried. Jeremiah tried so hard for me, I sat and cheered him on. But, he just wasn't ready. That night, the nurse who had been an optimist came in and apologized to me.
Sunday October 24, Miah went off his oxygen again. He kept his stats up like a good boy, until twenty four hours later. They also changed his feeding schedule from a schedule to when ever he wanted and however much he wanted to eat.
Early Tuesday Miah tried again to come off the oxygen. Twenty six hours later he went back on the oxygen. At this point, my husband was calling him an 02 junkie and I was giving inspirational speeches. Honey and I were both getting pretty down about the situation. We decided to take a night off to have a date night. We went home at about 4:30. Five while I was in the shower my phone started ringing the ringtone I assigned the NICU. Answering that phone call was about as scary as looking at my six month old car the time a box truck rear ended me. It was one of 'Miah's doctors calling to discuss how comfort levels about taking him home off of oxygen. I said, I don't care what I have to do at this moment to take him home. If we have to take him home like that, thats cool. I was on oxygen from the age of two till three. As long as there is monitoring equipment and receive proper education, I can handle it. 'Miah was going to come home on Thursday after they ran the final tests and there were no change.
Thursday rolls around, and they do the chest x-ray. Guess what? His lungs looked the best they've ever looked. So much for coming home today. The doctors want to use the weekend to try and wean him off of the oxygen again. Oh the disappointment! My personal goal had been to have Jeremiah home by Halloween. My original due date was November the 7th, I didn't think I would stay pregnant until then. I knew that I would have the baby sometime in October. Don't ask me how, but I knew. My goal was to go into labor on Halloween, so switching it to him coming home by then was a logical step for me.
Its Friday October 30th, the nurse of the night is the optimist nurse. Jeremiahs been off of his oxygen since Thursday morning. Its about been about 34 hours since then. She is telling me as long as hes doing this good Saturday morning Jeremiah will go home. I look at her, take a sip of my drink and go back to playing my word search. I didn't believe her. So I stayed the night anyway, and stayed up most of the night.
Its Saturday at 10:45 am, I stayed up until four am playing with the baby. The nurse wakes me up with "Hey mom you'd better wake up and get going, your baby is going home today". That was the best statement I think I've ever heard. Better than my husband proposing to me. I asked the nurses if he could stop briefly at grandmas to trick or treat. They said yes. That was pretty good too.

Posted by M.L.D. | Comments: (2) | Permalink

OUR STORY OCT 14-1

Nov 04, 2009 11:21pm (EST)

It was my assumption that since my pregnancy was so miserable, I'd be rewarded with a beautiful perfect little boy. I had gestational diabetes, gestational hypertension and severe swelling. My legs started swelling in July. By October they were so swollen that I could not step out over the baby gate we used to keep the dog out of the kitchen. My entire legs swelled, up to my hips.
My baby was notoriously uncooperative at the doctors office, I had ultrasounds that took two hours. Until the did the last ultrasound the day before I had him, they had never seen his face. He never had a successful NST. The nurses at my doctors office would ask me how my naughty little boy was.
On October 13th, when I got sent to the hospital for the fourth week in a row for further monitoring. I didn't think twice. Yes I was thirty-six weeks pregnant its what always happened. I hopped into my car, and drove five minutes to the hospital. . The nurses came in and hooked me up to the monitor. His heart rate was steady, but it didn't vary. Then the ultrasound lady came in. She was hilarious, she was a student and nervous. She explained that her mentor would come in at the end of the ultrasound in about ten minutes and verify all her findings. I said thats cool, I went to a technical school too. I understand you have to learn somewhere. She started working, and I asked her what she saw. She said she thought that maybe my fluid was low, but she couldn't tell but her mentor would be in shortly. It was the fastest ultrasound I ever had. Her mentor came in, said "Yup, no fluid. Not moving much either, and I cant tell if thats breathing motions or if hes sitting on her aorta." They wheeled the ultrasound machine out, and my husband walked in.
Then things got interesting, the nurse came back, but not with walking papers like the other four times. This time she had the items you need to start an IV. I was incredibly nervous when I saw the IV stuff. I am one of the worlds hardest sticks. I give them three tries to start my iv. If in three tries you can't find the vein, you go get your friend. The nurse didn't flinch when she heard, she said she enjoys a challenge and not to worry because she worked at a drug treatment center. First try, Blam! IV installed. It was awesome. I was admitted, and they said something about staying until I had the baby.
At 11:30 pm, the nurse came in, she asked if I could feel the contractions I was having. I said, I'm not having contractions, what are you talking about? She had to show me the contractions on the monitor before I believed her. The contractions were every six minutes apart. I called my friend who wanted to be here when I had Jeremiah. She lived forty-five minutes away, and she got to the hospital in twenty-five.
At 1:00 am, the nurse came back with the supplies for some sort of a ball induction. It sounded painful. It didn't happen because the doctor came in and asked if I was gbs positive. I confirmed. They started antibiotics and said when two bags were gone, I could get induced.
Its now 6:25 am, I remember the time because the clock was so big I could see it without my glasses and its directly in front of my bed. I cannot breathe. I'm coughing and gasping. I sent my husband home at 5:45 to walk the dog. I can't wake up my friend who is sleeping because I can't stop coughing to talk. And of course, they're monitoring my blood pressure, not my oxygen levels. I watch ten minutes pass gasping for air and coughing. I manage to get out Nurse. Apparently, she had been watching me, but I couldn't tell because I had no glasses on. She pages the nurse. The nurse came in, gives me oxygen and leaves. Then the doctor comes in. She makes me sit up, and pages the respiratory therapist. Eventually, everything calms down and I can breathe again. My husband came back about this time.
At 10:00 am, the doctor started oxytocin. The coughing and contracting caused me to dilate 4 cm. I didn't need the ball torture sounding induction.
At 12:00 noon, the nurse stopped the oxytocin because 'Miah's heart rate was dropping as I contracted. She buzzed my stomach a couple of times, with the stimulator. His heart rate recovered.
At 1:45 they tried to restart the oxytocin. Almost immediately, his heart rate dropped back down. They stopped it and my nurse went to find the doctor.
Around two, I don't know the exact time because the doctor was in front of the clock. My doctor came in and talked to me about having a c section. It was weird, it was like he was asking me my opinion. I said, We need to get Jeremiah out the safest, fastest way possible. If this is it, slice and dice. Get him out.
By 2:30 I was back in the operating room. I got tortured by the anesthesiologist for a couple minutes, it took him four tries to get my spinal started. I was screaming like a little girl. I stared at the blue sheet for a while. Then there was some pressure and my baby come out. He was covered in poo, he had pooed in-utero. They worked on him for a really long time. He cried a couple of times and was put on my chest. I held him, then they took him away. Then I was wheeled back to my room. My baby went to be checked out at by the NICU.
A while later- I don't know how long because they gave me some morphine and I was pretty stoned. I remember being really happy to eat cookies and drink juice again. They rolled Jeremiah into my room! They said he was just fine. I was so happy! I held him and breast fed him. We marveled at how beautiful he was. Pictures were taken, life was great. Everyone who came to support me during labor went home and my husband went to walk the dog again. I felt as if I had dodged a huge bullet.
'Miah was on my left breast, I remember that, he looked like he was purple. I told the nurse. She took him away from me, and put him in the warmer. A few moments later, his chest started wiggling, he looked like he was not moving much air. The nurse called the NICU. The nurse who brought him came back with the isolette.
That night they took my husband to see him. I couldn't. He said that 'Miah's lungs were either sick from the meconium, premature, or he had gbs. They would know more in the morning. I slept.
That morning I got to go see him. It made me so sad. I felt guilty. My beautiful baby was on cpap, he had lines and wires everywhere, and the nurse said I could help her by keeping him from pulling his cpap off, but I couldn't hold him. He wasn't allowed to have a bottle or my breast. He hadn't eaten all night. When the doctor came to explain to me what was going on, he said 'Miah was doing a little better, and could eat 5 cc's of breast milk or formula through his og tube. That night his nurse made me cry, I don't think she made to, but all of my family had come in two by two to visit. Miah had a huge desating episode after they were done. It was terrifying, I thought he was dieing. He recovered. But his nurses said he was overstimulated and I had to stop holding his little hand. In fact, it would be best if I went back to my room so she could work. I could come back at 1:00 am when he ate next.
Friday morning he was in an isolette when I came to visit. He was all alone in the big NICU quad room. He was fussing, he looked so sad and lonely, and I didn't know if I was allowed to open the doors. So, I sat there and looked at him through the plastic and cried. I hid it as best I could. I was afraid they'd accuse me of having post partum depression. The nurse came and threw me a bone. She let me hold him. I felt so much better. Jeremiah was okay, I could tell. She was so much nicer than the lady the night before. 'Miah's doctor had positive things to say, he was going to try 'miah on a nasal canula and see what happens. The respiratory specialist came in and took off the cpap machine about twenty minutes later. The man who did it, let me see 'Miahs face while he worked. It was great. That bad morning turned out so nice.
Saturday was my last day in the hospital, and during the night I had been thinking about something. When I was a baby I had to be on oxygen for a few days and the doctors couldn't figure out why. At my first year check up my pediatrician figured out that I had a heart murmur. It turned out that I had an atrial septal defect, which was repaired via open heart surgery when I was three. My husband's little sister was born with her heart valves reversed. I was certain 'Miah had a heart defect. I told 'Miah's doctor about that. He agreed that we should do an echocardiogram of Miah's heart. That happended that night, after 'Miah was moved into a private room with a bed so we could stay the night with him. I sat and watched. When I was a kid, the echocardiogram machine took up the entire room at Children's hospital. This guys fit in a back pack. 'Miah's lungs were definitely the problem. He had pulmonary hypertension. They looked infected according to the doctors. He scored himself a minimum 10 day stay in the NICU, depending on how he responded to antibiotics and when he didn't need the support of oxygen.
To be continued...My hands are tired and 'Miah is getting fussy.

Posted by M.L.D. | Comments: (2) | Permalink

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