I wanted to share with everyone this blog. It's the mom of a preemie who happens to be an OB/GYN. Her son, Victor, was disgnosed with CP. You will be amazed at this boy's strength. :)
The Preemie Primer
Again, today, Seanie is practicing his standing. He needs a little help getting up, but he does it. And, once he's up, he just gets SO excited. He is also kneeling a lot while playing. The developmental specialist said it's almost like he grew up overnight. YAY!! I love this! :)
Wednesday, February 9, 2011
Friday, February 4, 2011
2 Months!! Who let me go two Months?!?!?
I can't believe it's been twon since I last posted. A lot has happened. A lot.
Let's start with Colton. He is now over 18 lb. He is cruising along the furniture like a champ. He is even getting comfortable enough to reach to other items to grab onto. He loves to grab into my pants when I am in the kitchen. It makes it nearly impossible to cook with him around. Tonight Bubba got out an old baby gate (we used with the dogs) to use to block off the kitchen. He will be devastated when he learns he can't get to his magical chilly box aka the fridge. He loves getting into the fridge. He comes as fast as he can when he hears you open it.
Colton has gotten two colds since I lasted posted. He came through them like nothing happened. Yeah, he was uncomfortable and a little whiny. But, he never even got sick enough that we had to take him to the pedi. His circumsicion was cancelled because of his cold and has been rescheduled for March. His MRI this month showed a beautifully functioning shunt. Whew! We had the MRI done because I was worried that he just wanted acting like himself. Maybe it was those colds he had.
We are working on teaching Colton some sign language. He likes to grunt, growl and hiss at us. When he wants more food, he grunts. When I sign "more" and say "more," he grunts louder. You can tell he is frustrated because he thinks I should know what his grunt means. It's funny. I can't help but laugh at him.
Seanie, on the other hand, is giving us some concern. First, the great news. He was discharged from pulmonolgy's service even when he was in the midst of a cold. The doc was very happy with his progress respiratory-wise. He did bring up the concern that Seanie isn't gaining weight as he should be. Doc said if Seanie didn't get back on the growth curve, a feeding tube wold be considered. I did try to convince the doc that Seanie comes from long, lean stock, but he wasn't buying it. Maybe I should have told him Bubba was 6' 3" and 140 lb at 16 years old!!! I would have, but Bubba didn't share that info until after Seanie and I got home from the appointment. But, who the hell is that tall and skinny???? Seriously, Bubba, you should have been eating cheeseburgers with extra cheese.
Seanie had been following his own growth curve until January. Then he fell off the curve. Since then, we have been adding malted milk to all of Seanie's bottles and giving him an extra bottle of Pediasure every day. But, Seanie was weighed for his Synagis shot today and he hasn't gained an ounce since we started his new diet plan! :( So, tonight, I went grocery shopping. I bought a lot of whole fat products. I made his pasta and chicken with a cream sauce, mashed potatoes, cheesy meatballs, and even some oatmeal for the morning. Don't we all wish we could have oatmeal made with heavy cream instead of milk, or even worse, water?!?!
Seanie also got a new specialist. Lose a specialist, gain a specialist. He now has a neurologist. His hip and thigh muscles are very tight. He was approved for weekly physical therapy back in November or December, but he had his first visit last week. These appointments are in addition to the monthly Kaiser PT visits he gets. After the neurologist examined him, he says Seanie has the markers for CP. He thinks that the weekly PT will help him a great deal and wants to see him again in a year.
Seanie had his monthly PT visit today. The therapist and I talked about trying water therapy this summer. She said she has seen it work wonders with these little guys. I think the closest place that does it is in Berkeley. That might be too much of a trip. But, she said even getting him into a pool for swim lessons will help. So, finding either a closer therapy place or swim lessons for Seanie is a priority. And, then Seanie surprised us! The therpaist had been showing him how to go from a sit to a kneel to a stand. And the he did it on his own!! Yes, Seanie stood up all on his own! Of course, he looked like he had just ran two miles - he had to lean over on the table he was standing at. But, he did it!! On. His. Own!! WOOOOOOHOOOOOO!!!
And, now, off to bed for Momma . . .
Let's start with Colton. He is now over 18 lb. He is cruising along the furniture like a champ. He is even getting comfortable enough to reach to other items to grab onto. He loves to grab into my pants when I am in the kitchen. It makes it nearly impossible to cook with him around. Tonight Bubba got out an old baby gate (we used with the dogs) to use to block off the kitchen. He will be devastated when he learns he can't get to his magical chilly box aka the fridge. He loves getting into the fridge. He comes as fast as he can when he hears you open it.
Colton has gotten two colds since I lasted posted. He came through them like nothing happened. Yeah, he was uncomfortable and a little whiny. But, he never even got sick enough that we had to take him to the pedi. His circumsicion was cancelled because of his cold and has been rescheduled for March. His MRI this month showed a beautifully functioning shunt. Whew! We had the MRI done because I was worried that he just wanted acting like himself. Maybe it was those colds he had.
We are working on teaching Colton some sign language. He likes to grunt, growl and hiss at us. When he wants more food, he grunts. When I sign "more" and say "more," he grunts louder. You can tell he is frustrated because he thinks I should know what his grunt means. It's funny. I can't help but laugh at him.
Seanie, on the other hand, is giving us some concern. First, the great news. He was discharged from pulmonolgy's service even when he was in the midst of a cold. The doc was very happy with his progress respiratory-wise. He did bring up the concern that Seanie isn't gaining weight as he should be. Doc said if Seanie didn't get back on the growth curve, a feeding tube wold be considered. I did try to convince the doc that Seanie comes from long, lean stock, but he wasn't buying it. Maybe I should have told him Bubba was 6' 3" and 140 lb at 16 years old!!! I would have, but Bubba didn't share that info until after Seanie and I got home from the appointment. But, who the hell is that tall and skinny???? Seriously, Bubba, you should have been eating cheeseburgers with extra cheese.
Seanie had been following his own growth curve until January. Then he fell off the curve. Since then, we have been adding malted milk to all of Seanie's bottles and giving him an extra bottle of Pediasure every day. But, Seanie was weighed for his Synagis shot today and he hasn't gained an ounce since we started his new diet plan! :( So, tonight, I went grocery shopping. I bought a lot of whole fat products. I made his pasta and chicken with a cream sauce, mashed potatoes, cheesy meatballs, and even some oatmeal for the morning. Don't we all wish we could have oatmeal made with heavy cream instead of milk, or even worse, water?!?!
Seanie also got a new specialist. Lose a specialist, gain a specialist. He now has a neurologist. His hip and thigh muscles are very tight. He was approved for weekly physical therapy back in November or December, but he had his first visit last week. These appointments are in addition to the monthly Kaiser PT visits he gets. After the neurologist examined him, he says Seanie has the markers for CP. He thinks that the weekly PT will help him a great deal and wants to see him again in a year.
Seanie had his monthly PT visit today. The therapist and I talked about trying water therapy this summer. She said she has seen it work wonders with these little guys. I think the closest place that does it is in Berkeley. That might be too much of a trip. But, she said even getting him into a pool for swim lessons will help. So, finding either a closer therapy place or swim lessons for Seanie is a priority. And, then Seanie surprised us! The therpaist had been showing him how to go from a sit to a kneel to a stand. And the he did it on his own!! Yes, Seanie stood up all on his own! Of course, he looked like he had just ran two miles - he had to lean over on the table he was standing at. But, he did it!! On. His. Own!! WOOOOOOHOOOOOO!!!
And, now, off to bed for Momma . . .
Saturday, December 4, 2010
December 4, 2009
So, around 2am on Decemeber 4th, I got up to use the restroom. I had been in the hospital since the first and hadn't had a bowel movement - a common problem with patients on bedrest. I was trying to go, but everything in my abdomen hurt. I gave up my efforts and went back to bed, but as I went to get back in bed, I was in excruciating pain. One of the Jen's had stayed the night with me. I think she went to get the nurse or the nurse just happened to come in the room. (I guess I should mention here that my memory may not be 100% accurate, but it's how I remember it and based on what people have told me.)
Bacause the pain was so intense, I couldn't hold still. I was on and off the bed, sitting, standing, squating. I was desperately trying to get into a comfortable position, but I couldn't. I pulled the monitor belts off of me - it felt like they were a vice on my abdomen. At one point Jen yelled at me to save my IV because if I pulled it out, the nurses wouldn't be able to get another one it. So, during all my writhing around, I had my arm in the arm trying to protect my IV. I remember thinking that I was totally out of control and that if I couldn't control myself, the nurses and doctors wouldn't be able to control me. I was telling myself to hold it together - I could have been saying it outloud, I don't know.
(Later when my Reproductive Endocrinologist - an OB/GYN who specializes in fertility - reviewed my file and I told him my experience, he said what probably happened was as I was getting in bed, it increased the pressure in my abdomen. That pressure was too much for my already inflammed liver and it caused my liver to rupture. I was bleeding from my liver, which filters all your blood. A large liver rupture can cause you to bleed to death.)
The OB resident came in my room. Before I could yell at her to GET OUT, she was gone again. (I had fired her the first night I got to Roseville.) And, then the doctor came into my room. He asked the nurse if my midnight labs were back. They were and they weren't very good - my platelets (helps your blood clot) had dropped again. I remember telling the doctor that the babies were killing me. He said it was time to do the c-section. I asked if we could wait until Bubba arrived from home. He said no. I also remember asking for a priest. I really thought that the three of us were going into the OR and that only two of us would make it out alive. They gave me something. It was either pain medicine or a sedative. It helped.
So, then the rush was on. Anesthesia came by to talk to me about the surgery. I told them to please make sure they gave me everything in their bag of tricks to keep me from barfing my guys out. I normally have nausea and vomiting for up to three days after I have general anesthesia and I didn't want to do that after a c-section. The decision had been made for general anesthesia because my platelets were dropping and giving me a spinal was way too risky.
If I close my eyes I can see every ceiling tile and light from my room to the operating room. I know exactly what their ceiling looks like. I remember going into the OR and hearing everyone working to set up the room for a twin delivery. I could feel the energy as well. I know very well what it's like to be in their position and now I was the one on the table waiting. And, waiting. I started to panic a little and then I heard Mary Jo's voice. I had worked with Mary Jo and she has this calming presence about her. She was helping set up the room and I thought if she was there, I would be okay. (Funny thing, I don't even know if Mary Jo knew it was me.) But, then they called her out of the OR and I started to panic again. I grabbed the anesthesiologists hand and told him I was starting to panic because it was taking too long. He reassured me that it was okay and reminded me that they weren't going to knock me out until everyone was in place. (This is done so that the babies don't get much of the general anesthesia.) And, the anesthesiologist said to me that he was going to give me the propofol. I saw his start to push the mikly white drug into my IV. I remember thinking, "I'm not Michael Jackson," and wanting to make the joke, but I was out.
Colton Duayne was born at 3:27 am. He weighed 900 gms (1lb, 15.8oz) and was 14 inches long.
Sean Patrick was born at 3:28 am. He weight 540 gms (1lb, 3oz) and was 12.5 inches long.
Both boys required a lot of help at birth. They both required chest compressions and breathing tubes. While the boys were in the NICU, a form was accidently given to me that said when Sean was born, he had absolutely no heart beat. None. Now, the labor and delivery nurse in me knows that it would be expected that the boys would need breathing tubes and possibly chest compressions, but to see it in black and white that your baby was born without a heartbeat is completely earth shattering.
As the boys were taken out of the OR, they were taken through the recovery room on their way to the NICU. Bubba had just arrived and met up with the boys in the recovery room. He followed them down to the NICU. He stayed only a few minutes. He said it was too much to watch and didn't want to be in anyone's way.
My poor nurse, Cindy, really earned her wages that night. I am probably the patient she still talks about when she wants to share a nursing horror story. She was actually the one who "called" my c-section that night. When the other nurses questioned her since the OB hadn't seen me to call it, she told them, "Oh no! She's done! I'm calling it!" She had to draw blood out of the boys' umbilical cords (the part still attached to placentas). She said there was no room in the OR, so she had to do it on the floor. She also later told me that she swore she saw the doctors praying over my uterus. I was bleeding. I was bleeding very badly. She said the doctors considered doing a hysterectomy. They gave me misoprostil and two doses of hemabate to stop the bleeding. (The main side effect of hemabate is diarrhea - horribly smelly, profuse diarrhea.)
I had actually predicted how my delivery would happen. When I was being transfered to Roseville, I had text a friend, Liberty, who was a L&D nurse there. I was telling her I was being transfered and why. Because we know how things go in L&D, she asked me, "So, when is your crash?" (meaning my emergency c-setion). I had text her back, "at 2:40 in the morning on a busy night." When I had arrived in Roseville, there were only a few patients, but the evening of the 3rd, every labor room was full and the doctors were doing back to back to back c-sections. It was the DEFINITION of a busy night! My c-section was called around 2:40.
It's normal to spend a few hours in the recovery room before being sent to your postpartum room. I was there from about 4 am to somewhere between noon and 2:30 pm. I don't remember the first few hours in the recovery room. I have been told I was "fiesty, yet directable," and kept negotiating everything that was happening and kept dropping F-Bombs. Apparently, me thinking I felt like I had been hit by a truck translated into me yelling, "I feel like I've been hit by a fucking truck!" Oh, my poor nurses. I wouldn't want to put up with me in the recovery room!
At one point, I kind of woke up in the recovery room and I looked for my bands. I knew the nurses would have given me bands that matched the babies. I looked to make sure I had two bands. If I only had one, then it meant Sean didn't make it. Oh God! How many bands?? TWO!! WOOHOO!! I also remember the doctor coming by to check on me. I asked him if he had to do a classical incision (up and down on the uterus which requires c-section deliveries for all future pregnancies). He said yes. I asked him if he used sutures or staples (to close my skin). He said sutures as if he would never have considered staples. I gave him a thumbs up and dozed off.
In the recovery room, my blood pressure was 170/110 to 175/115. At least I was consistant! I was given a PCA - patient controlled analgesia. Oh God! I loved my PCA. It was the BEST. THING. EVER. If my pain got to be too much, I would just hit my lovely little button and everything would be alright.
I was finally moved to postpartum. The nurse was a little concerned to find so many absorbant pads underneath me. I said told her I had two doses of hemabate. She got this horrified look on her face. I reassured her that I wasn't suffering the dreaded hemabate diarrhea. She was so relieved. Nobody wants to clean up a hemabate mess. NOBODY.
In my postpartum room. I slept and slept. It felt good after only sleeping about three hours a night. I had some visitors - my mom and Ralph and my cousin. I don't remember much more than that. The social worker did come by and give me some information and pictures of the boys. Bubba had also taken pictures of the boys using my phone. I looked at those as I began using the breastpump. Bubba had finally gone home to get some sleep.
When Liberty got off work that evening, she came to see me. I hadn't eaten or gotten to see the boys yet. She found me some food and a wheelchair. Even though she had an hour drive home and was getting up early in the morning, she spent about an hour with me in the NICU. The boys were about 21 hours old when I finally got to see my sweet tiny baby boys.
That night, as I drifted off to sleep, it began to snow. It hadn't snowed in Roseville in 20 years.
Bacause the pain was so intense, I couldn't hold still. I was on and off the bed, sitting, standing, squating. I was desperately trying to get into a comfortable position, but I couldn't. I pulled the monitor belts off of me - it felt like they were a vice on my abdomen. At one point Jen yelled at me to save my IV because if I pulled it out, the nurses wouldn't be able to get another one it. So, during all my writhing around, I had my arm in the arm trying to protect my IV. I remember thinking that I was totally out of control and that if I couldn't control myself, the nurses and doctors wouldn't be able to control me. I was telling myself to hold it together - I could have been saying it outloud, I don't know.
(Later when my Reproductive Endocrinologist - an OB/GYN who specializes in fertility - reviewed my file and I told him my experience, he said what probably happened was as I was getting in bed, it increased the pressure in my abdomen. That pressure was too much for my already inflammed liver and it caused my liver to rupture. I was bleeding from my liver, which filters all your blood. A large liver rupture can cause you to bleed to death.)
The OB resident came in my room. Before I could yell at her to GET OUT, she was gone again. (I had fired her the first night I got to Roseville.) And, then the doctor came into my room. He asked the nurse if my midnight labs were back. They were and they weren't very good - my platelets (helps your blood clot) had dropped again. I remember telling the doctor that the babies were killing me. He said it was time to do the c-section. I asked if we could wait until Bubba arrived from home. He said no. I also remember asking for a priest. I really thought that the three of us were going into the OR and that only two of us would make it out alive. They gave me something. It was either pain medicine or a sedative. It helped.
So, then the rush was on. Anesthesia came by to talk to me about the surgery. I told them to please make sure they gave me everything in their bag of tricks to keep me from barfing my guys out. I normally have nausea and vomiting for up to three days after I have general anesthesia and I didn't want to do that after a c-section. The decision had been made for general anesthesia because my platelets were dropping and giving me a spinal was way too risky.
If I close my eyes I can see every ceiling tile and light from my room to the operating room. I know exactly what their ceiling looks like. I remember going into the OR and hearing everyone working to set up the room for a twin delivery. I could feel the energy as well. I know very well what it's like to be in their position and now I was the one on the table waiting. And, waiting. I started to panic a little and then I heard Mary Jo's voice. I had worked with Mary Jo and she has this calming presence about her. She was helping set up the room and I thought if she was there, I would be okay. (Funny thing, I don't even know if Mary Jo knew it was me.) But, then they called her out of the OR and I started to panic again. I grabbed the anesthesiologists hand and told him I was starting to panic because it was taking too long. He reassured me that it was okay and reminded me that they weren't going to knock me out until everyone was in place. (This is done so that the babies don't get much of the general anesthesia.) And, the anesthesiologist said to me that he was going to give me the propofol. I saw his start to push the mikly white drug into my IV. I remember thinking, "I'm not Michael Jackson," and wanting to make the joke, but I was out.
Colton Duayne was born at 3:27 am. He weighed 900 gms (1lb, 15.8oz) and was 14 inches long.
Sean Patrick was born at 3:28 am. He weight 540 gms (1lb, 3oz) and was 12.5 inches long.
Both boys required a lot of help at birth. They both required chest compressions and breathing tubes. While the boys were in the NICU, a form was accidently given to me that said when Sean was born, he had absolutely no heart beat. None. Now, the labor and delivery nurse in me knows that it would be expected that the boys would need breathing tubes and possibly chest compressions, but to see it in black and white that your baby was born without a heartbeat is completely earth shattering.
As the boys were taken out of the OR, they were taken through the recovery room on their way to the NICU. Bubba had just arrived and met up with the boys in the recovery room. He followed them down to the NICU. He stayed only a few minutes. He said it was too much to watch and didn't want to be in anyone's way.
My poor nurse, Cindy, really earned her wages that night. I am probably the patient she still talks about when she wants to share a nursing horror story. She was actually the one who "called" my c-section that night. When the other nurses questioned her since the OB hadn't seen me to call it, she told them, "Oh no! She's done! I'm calling it!" She had to draw blood out of the boys' umbilical cords (the part still attached to placentas). She said there was no room in the OR, so she had to do it on the floor. She also later told me that she swore she saw the doctors praying over my uterus. I was bleeding. I was bleeding very badly. She said the doctors considered doing a hysterectomy. They gave me misoprostil and two doses of hemabate to stop the bleeding. (The main side effect of hemabate is diarrhea - horribly smelly, profuse diarrhea.)
I had actually predicted how my delivery would happen. When I was being transfered to Roseville, I had text a friend, Liberty, who was a L&D nurse there. I was telling her I was being transfered and why. Because we know how things go in L&D, she asked me, "So, when is your crash?" (meaning my emergency c-setion). I had text her back, "at 2:40 in the morning on a busy night." When I had arrived in Roseville, there were only a few patients, but the evening of the 3rd, every labor room was full and the doctors were doing back to back to back c-sections. It was the DEFINITION of a busy night! My c-section was called around 2:40.
It's normal to spend a few hours in the recovery room before being sent to your postpartum room. I was there from about 4 am to somewhere between noon and 2:30 pm. I don't remember the first few hours in the recovery room. I have been told I was "fiesty, yet directable," and kept negotiating everything that was happening and kept dropping F-Bombs. Apparently, me thinking I felt like I had been hit by a truck translated into me yelling, "I feel like I've been hit by a fucking truck!" Oh, my poor nurses. I wouldn't want to put up with me in the recovery room!
At one point, I kind of woke up in the recovery room and I looked for my bands. I knew the nurses would have given me bands that matched the babies. I looked to make sure I had two bands. If I only had one, then it meant Sean didn't make it. Oh God! How many bands?? TWO!! WOOHOO!! I also remember the doctor coming by to check on me. I asked him if he had to do a classical incision (up and down on the uterus which requires c-section deliveries for all future pregnancies). He said yes. I asked him if he used sutures or staples (to close my skin). He said sutures as if he would never have considered staples. I gave him a thumbs up and dozed off.
In the recovery room, my blood pressure was 170/110 to 175/115. At least I was consistant! I was given a PCA - patient controlled analgesia. Oh God! I loved my PCA. It was the BEST. THING. EVER. If my pain got to be too much, I would just hit my lovely little button and everything would be alright.
I was finally moved to postpartum. The nurse was a little concerned to find so many absorbant pads underneath me. I said told her I had two doses of hemabate. She got this horrified look on her face. I reassured her that I wasn't suffering the dreaded hemabate diarrhea. She was so relieved. Nobody wants to clean up a hemabate mess. NOBODY.
In my postpartum room. I slept and slept. It felt good after only sleeping about three hours a night. I had some visitors - my mom and Ralph and my cousin. I don't remember much more than that. The social worker did come by and give me some information and pictures of the boys. Bubba had also taken pictures of the boys using my phone. I looked at those as I began using the breastpump. Bubba had finally gone home to get some sleep.
When Liberty got off work that evening, she came to see me. I hadn't eaten or gotten to see the boys yet. She found me some food and a wheelchair. Even though she had an hour drive home and was getting up early in the morning, she spent about an hour with me in the NICU. The boys were about 21 hours old when I finally got to see my sweet tiny baby boys.
That night, as I drifted off to sleep, it began to snow. It hadn't snowed in Roseville in 20 years.
Wednesday, December 1, 2010
One Year Ago Today . . .
I woke up feeling like something REALLY bad was going to happen. I tried to shake the feeling. I cleaned house, I baked, but the feeling was still there. In the late afternoon I took a nap. When I woke up, I made dinner. Within about 90 minutes of eating dinner, I became sick. I thought it was my gallbaldder. By three am on Dec. 1st, I was in Triage 4 at Antioch Kaiser. I was crying in pain. I mean crying. By about noon the decision to admit me, start me on magnesium (to prevent seizures) and give me betamethasone (to help mature the boys' lungs) was made. The call was made to Walnut Creek Kaiser. They couldn't take me. The doctor was saying he was going to call Oakland; I offered to go to Roseville. Traffic and parking in Oakland is horrible. Oakland was actually called, but couldn't take me either. Roseville had room for me and the boys. At about 2 pm on Dec. 1st, I in the back of an ambulance on my way to Roseville Kaiser.
Let me tell you, I have never been so scared in all of my life. I was terrified!! I knew what was happening and how bad this could/would end up. My nurse who admitted me was so super nice. She actually sat with me a prayed for the mine and the boys' safety. She was a sweatheart. Really. And, then, on came the night shift nurse. Oh Lord!! She scared me. I never thought I would be afraid to fire a nurse, but this woman scared me. I mean, really scared me. And, lucky me, I ws stuck with her for 12 hours. Whoever thought of 12 hour shifts was INSANE!! When she left, I knew I would never have to have her take care of me again. WHEW!
(I should interject that the rest of my nurses were awesome! Tish, Lib, Stephanie T, Cindy: you ladies all ROCKED! Cindy - sorry for trying to die on you. I really didn't mean to. I swear.)
I spent the 2nd of December feeling pretty good until midafternoon when I was sent to ultrasound. I was trying to get transferred to Walnut Creek (they now had room for us). The perinatologist wanted a growth ultrasound on the boys before allowing me to be transferred. Well, the ultrasound showed that Sean was severely intrauterine growth restricted (IUGR) - he was in the 3%tile of growth - and his umbilical artery had almost no blood flow. So, that meant no transfer and the intermittent baby monitoring I had just been granted was switched back to continuous monitoring of the babies. It also meant that Sean wouldn't survive inside me for very long. But, the ultrasound showed that his estimated weight was 450 grams (454 gms = 1 lb). Anything under 500 gms is considered too small to survive (yes, babies smalled than that have survived, but it is very rare). Colton was doing a little better - his weight was estimated to be in the high 800 gm range (nope, I can't even remember what the estimate was).
On the morning of Decmeber 3rd, the perinatologist came to see me. He had a plan. We would check Sean by ultrasound every other day to see how he was doing. When he had no umbilical artery blood flow, we would deliver the boys. Or, if I was "ICU sick" we would deliver the boys. The perinate told me that I was the sickest patient that had, I was the patient they were talking about at the nurses' station, and I was the patient they doctors in house would be calling him about.
A few hours after speaking to the perinate, I had a little mental breakdown. I was trying to get some sleep and I realized that the boys would be born before Christmas and I wasn't ready for their first Christmas. Yes, totally rational. I know. But, it was how I was dealing with things on 3 hours of sleep a night. So, my friend Jen went to get my nurse to ask for an Ambien for me. Tish comes in, practically climbs in bed with me, holds me and strokes my hair and tells me it's going to be okay. And, then she hands me a that little sleeping pill.
BIG MISTAKE!!!
I talked non-stop for three hours.
Yes. Non-stop. Three hours.
It was described as me being a drunk Vegas party girl by someone who has seen me in drunk in Vegas partying! The nurses admonished Jen and Jen for keeping me awake. They assured her that they were not engaging in conversation with me. I say they were, but whatever! And, then I finally passed out and slept for 90 minutes!! Yes, the Ambien gave me 90 minutes of sleep after a three hour talking fit. I woke up and declared:
I FEEL GREAT!
Later, one of the Jen's confessed that I might have felt great, but I looked like HELL. Um, thanks. But, that's Jen, she's honest.
At the time, we didn't know it, but I was getting sick again . . .
Let me tell you, I have never been so scared in all of my life. I was terrified!! I knew what was happening and how bad this could/would end up. My nurse who admitted me was so super nice. She actually sat with me a prayed for the mine and the boys' safety. She was a sweatheart. Really. And, then, on came the night shift nurse. Oh Lord!! She scared me. I never thought I would be afraid to fire a nurse, but this woman scared me. I mean, really scared me. And, lucky me, I ws stuck with her for 12 hours. Whoever thought of 12 hour shifts was INSANE!! When she left, I knew I would never have to have her take care of me again. WHEW!
(I should interject that the rest of my nurses were awesome! Tish, Lib, Stephanie T, Cindy: you ladies all ROCKED! Cindy - sorry for trying to die on you. I really didn't mean to. I swear.)
I spent the 2nd of December feeling pretty good until midafternoon when I was sent to ultrasound. I was trying to get transferred to Walnut Creek (they now had room for us). The perinatologist wanted a growth ultrasound on the boys before allowing me to be transferred. Well, the ultrasound showed that Sean was severely intrauterine growth restricted (IUGR) - he was in the 3%tile of growth - and his umbilical artery had almost no blood flow. So, that meant no transfer and the intermittent baby monitoring I had just been granted was switched back to continuous monitoring of the babies. It also meant that Sean wouldn't survive inside me for very long. But, the ultrasound showed that his estimated weight was 450 grams (454 gms = 1 lb). Anything under 500 gms is considered too small to survive (yes, babies smalled than that have survived, but it is very rare). Colton was doing a little better - his weight was estimated to be in the high 800 gm range (nope, I can't even remember what the estimate was).
On the morning of Decmeber 3rd, the perinatologist came to see me. He had a plan. We would check Sean by ultrasound every other day to see how he was doing. When he had no umbilical artery blood flow, we would deliver the boys. Or, if I was "ICU sick" we would deliver the boys. The perinate told me that I was the sickest patient that had, I was the patient they were talking about at the nurses' station, and I was the patient they doctors in house would be calling him about.
A few hours after speaking to the perinate, I had a little mental breakdown. I was trying to get some sleep and I realized that the boys would be born before Christmas and I wasn't ready for their first Christmas. Yes, totally rational. I know. But, it was how I was dealing with things on 3 hours of sleep a night. So, my friend Jen went to get my nurse to ask for an Ambien for me. Tish comes in, practically climbs in bed with me, holds me and strokes my hair and tells me it's going to be okay. And, then she hands me a that little sleeping pill.
BIG MISTAKE!!!
I talked non-stop for three hours.
Yes. Non-stop. Three hours.
It was described as me being a drunk Vegas party girl by someone who has seen me in drunk in Vegas partying! The nurses admonished Jen and Jen for keeping me awake. They assured her that they were not engaging in conversation with me. I say they were, but whatever! And, then I finally passed out and slept for 90 minutes!! Yes, the Ambien gave me 90 minutes of sleep after a three hour talking fit. I woke up and declared:
I FEEL GREAT!
Later, one of the Jen's confessed that I might have felt great, but I looked like HELL. Um, thanks. But, that's Jen, she's honest.
At the time, we didn't know it, but I was getting sick again . . .
Thursday, November 18, 2010
Can you say OVERWHELMED???
I am really super excited that the boys are getting ready to turn one and that Christmas is right around the corner. But, at the same time I am feeling completely overwhelmed with what we have going on the rest of the year. Let's count how many appointments we have:
4 with PT
5 with Easter Seals
1 MRI scan
1 post MRI follow up
2 Synagis shots
2 one year check ups
2 pre-op physicals
2 surgeries
2 post-op follow ups
and a partridge in a pear tree . . .
Not to mention, I have one appointment, Bubba has one, and my neice has two and will be starting weekly appointments. So, that only adds on 10!!! Has anyone done the math?? I have!! That is 31 appointments in 43 days. Thankfully, the Easter Seals appointments are at the house and all the boys appointments are paired up. This also doesn't include that fact that I am so stressed out I can barely move my neck. I need to see a chiropractor. Seriously. Like, I need to have seen him yesterday. Motrin and tylenol aren't helping one bit. I am also working three days a week (but taking two off for their surgeries).
Go ahead, start the betting pool. How long will it take for me to have a meltdown?
And then we have the boys' birthday and the holidays. We will be doing Thanksgiving at my mom's along with a family Christmas party the week before Christmas. Christmas will be at my house since the boys' will be recovering from their surgery (I want to keep them close to their own beds). I also have to plan and host their 1st birthday party. But, since we are on serious RSV/cold/flu season lockdown, the party is being restricted to Bubba and my immediate families. But, the party has to be planned (mostly done) and the house needs to be cleaned.
Anyone want to reconsider their guess of when I will have my meltdown? Anyone?
And, to add to the craziness, we are redoing our floors. Since Colton is now a master army crawler (he is even starting to use his little legs to get him going), we have to pull up our carpet. It's not safe - tack strips are exposed in the hallway. So what are we doing?? We are pulling up the carpet and laying laminant flooring; yes, we are doing it ourselves. Someone, please just shot me and put me out of my misery!! The good news of this is that by the time the carpet is ripped up and the new floor is down, the house will be clean and ready for company! :/
Maybe, I should look forward to the new year . . . uh oh! Just checked the calender!
2 with PT
5 with Easter Seals
2 with audiology
2 with opthamology
2 Synagis shots
And, they are trying to get Seanie into weekly PT. That would add on 4 more PT appointments. They are working one getting him in home PT, but if he can't get it, he needs to go to Fairfield for weekly PT. The neice will have her weekly appointments too.
Maybe I should take up drinking . . .
4 with PT
5 with Easter Seals
1 MRI scan
1 post MRI follow up
2 Synagis shots
2 one year check ups
2 pre-op physicals
2 surgeries
2 post-op follow ups
and a partridge in a pear tree . . .
Not to mention, I have one appointment, Bubba has one, and my neice has two and will be starting weekly appointments. So, that only adds on 10!!! Has anyone done the math?? I have!! That is 31 appointments in 43 days. Thankfully, the Easter Seals appointments are at the house and all the boys appointments are paired up. This also doesn't include that fact that I am so stressed out I can barely move my neck. I need to see a chiropractor. Seriously. Like, I need to have seen him yesterday. Motrin and tylenol aren't helping one bit. I am also working three days a week (but taking two off for their surgeries).
Go ahead, start the betting pool. How long will it take for me to have a meltdown?
And then we have the boys' birthday and the holidays. We will be doing Thanksgiving at my mom's along with a family Christmas party the week before Christmas. Christmas will be at my house since the boys' will be recovering from their surgery (I want to keep them close to their own beds). I also have to plan and host their 1st birthday party. But, since we are on serious RSV/cold/flu season lockdown, the party is being restricted to Bubba and my immediate families. But, the party has to be planned (mostly done) and the house needs to be cleaned.
Anyone want to reconsider their guess of when I will have my meltdown? Anyone?
And, to add to the craziness, we are redoing our floors. Since Colton is now a master army crawler (he is even starting to use his little legs to get him going), we have to pull up our carpet. It's not safe - tack strips are exposed in the hallway. So what are we doing?? We are pulling up the carpet and laying laminant flooring; yes, we are doing it ourselves. Someone, please just shot me and put me out of my misery!! The good news of this is that by the time the carpet is ripped up and the new floor is down, the house will be clean and ready for company! :/
Maybe, I should look forward to the new year . . . uh oh! Just checked the calender!
2 with PT
5 with Easter Seals
2 with audiology
2 with opthamology
2 Synagis shots
And, they are trying to get Seanie into weekly PT. That would add on 4 more PT appointments. They are working one getting him in home PT, but if he can't get it, he needs to go to Fairfield for weekly PT. The neice will have her weekly appointments too.
Maybe I should take up drinking . . .
Wednesday, November 3, 2010
A Special Kind of Hell
Last Wednesday, Colton had a routine follow up with his neurosurgeon. Well, it ended up being everything except routine! His head measurement was up significantly. He had jumped from the 10 %tile to the 50%tile, which was concerning. But, now, his head had grown even more! The new measurement put him in the 90%tile! Doc wanted an MRI immediately. Nope, no MRI - they were fully booked. He said ok, let's get him into a CT. CT could fit him in right away, so off we ran over to CT. When we got there, they took us right back. We left CT knowing nothing. We drove up the street to get some lunch (it was only 3pm already). While waiting in line at my most favorite place (Chipotle), the doc called my cell phone. He had spoken to the pediatrician on duty at the hospital and was having Colton admitted for a shunt revision the next day!
So, I called Bubba for him to pack a bag of everything Colton and I would need for the next few days. I get my lunch and head back to the hospital. By now, it's about 4pm and it's a hour wait until his room is ready. Once his room is ready, we are taken to his room and greeted by a nurse. She introduces herself and tells us that our nurse will be in soon. Um, to me, soon doesn't mean 30 - 45 minutes!!! That nurse introduces herself, tells me they don't have any of Colton's formula on the floor (and then stares at me like I sprouted a second head when I tell her the NICU has a huge stockpile of it!), tells me someone will come start an IV and draw some labs. And, then she's gone. Gone. Gone. Gone. She never showed me how to work anything (no, she didn't know I was a Kaiser RN), tell me any special peds floor rules, offer me water, a blanket or a pillow. N.O.T.H.I.N.G.
Bubba, Seanie and Amanda show up a few hours later. They have clothes, tolietries, blankets, pillows and water for me! YAY!!!!! I tell them how things are going - the good and the bad, mostly the bad. And, then Bubba asks, what would happen to Colton if you couldn't stay. Um, well, he would be in him room ALONE. If he cried, nobody would hear him. If he screamed, nobody would hear him. His room was actually across the hall from a nurses' station that was completely vacant - no lights on, no computers on, no supplies, nothing.
Then there is the IV fiasco. Multiple tries to get it in and then it blows within an hour. Okay, I get it. IVs don't alwys go right in and sometimes they blow. But . . . . then lab comes in to draw his labs. Thanks lab chickadee, YOU LEFT A FREAKING SHARP IN MY KID'S CRIB!! It wasn't even capped! Not to mention the rubberband you also left in there. Second IV goes in his head. This is a normal place to put an infant's IV. But, I ask, won't the neuro want it some where else since he's having brain surgery??? She tells me nope, it's okay because it's on the other side of the head. Next morning, doc comes in and wants to know why the IV is in his head. I tell him. He's mad. He tells me they will use it to knock him out and then replace it before they proceed with the shunt revision. I'm not shocked, but I am clearly annoyed with the nurse who put the IV in his head.
Surgery goes well. The catheter that goes from the shunt into the ventricle was clogged. The shunt and the tubing into his abdomen were both functioning properly. So, the doc just replaced the catheter. Colton was taken to the PICU after his surgery. As we were walking in the PICU someone asks if we are the Coats. We nod, he says, GOOD! We need you, he's awake and not happy! So, we rush to his room to find him screaming and crying and thrashing about. I look at Bubba and ask, "Is this how I am coming out of a general?" He nods; I say, "Well, then, I would like to take this moment to apologize to everyone." So, the nurses medicate him with about a half a dose of morphine. No help. Then, we try to give him some tylenol with codiene and juice. He spits it all up. Then some Zofran to help with any nausea. Then some Ativan because he is clearly trying to go to sleep, but just can't let himself. Nope, doesn't work. Then a full dose of morphine. Aaaaahhhhhh, good night, my sweet baby.
The night was really uneventful. At about 3pm the next day, a MRI showed the shunt was in the proper place and the ventricles were already shrinking. We got our discharge papers and home we went. But, once we got home, a long, long night began. Colton began throwing up. He wouldn't keep anything down. We went back to giving him juice to see if that would stay down. No such luck. So, at mightnight, I call the advice and tell her I want the neurosurgeon paged so that I could talk to him. No, she says, we need to bring Colton into the ED. UGH! Bubba and I rush around packing my bags to prepare for another few day stay in the hospital. And, then, I have an idea. I call my work and ask to speak to the pedi who is covering our nursery. We talked about what is going on. She told me that since Colton had never had straight juice, it might be too harsh on his system. So, we mixed his bottles half juice/half water until we could get to the store in the morning to get some Pedialyte. We also fed him a half an ounce every 15 - 30 minutes. Oh, it was a long night. Since I hadn't slept much in the hospital, Bubba stayed up most of the night feeding Colton. The next day was long and trying, but Colton was slowing keeping more of his bottles down. But, he would throw up his whole feeding if we gave him any formula. We were giving him Tylenol every 6 hours or so.
On Halloween morning, Colton woke up feeling much better but it took until the evening for him to keep down about 3 ounces of formula. But Monday morning, he was eating full formula feeds. Poor baby. I think we jumped the gun bringing him homw Friday night. He probably needed more Zofran to keep the nausea under control. Both Bubba and I have a terrible time with post-operative nausea and vomiting. For me, it can last up to three days. For Bubba, he says it lasts 24 hours. Um, no, Bubba, you will randomly vomit up to a week later!!!
So, how about some pictures from the hospital visit . . .
So, I called Bubba for him to pack a bag of everything Colton and I would need for the next few days. I get my lunch and head back to the hospital. By now, it's about 4pm and it's a hour wait until his room is ready. Once his room is ready, we are taken to his room and greeted by a nurse. She introduces herself and tells us that our nurse will be in soon. Um, to me, soon doesn't mean 30 - 45 minutes!!! That nurse introduces herself, tells me they don't have any of Colton's formula on the floor (and then stares at me like I sprouted a second head when I tell her the NICU has a huge stockpile of it!), tells me someone will come start an IV and draw some labs. And, then she's gone. Gone. Gone. Gone. She never showed me how to work anything (no, she didn't know I was a Kaiser RN), tell me any special peds floor rules, offer me water, a blanket or a pillow. N.O.T.H.I.N.G.
Bubba, Seanie and Amanda show up a few hours later. They have clothes, tolietries, blankets, pillows and water for me! YAY!!!!!
Then there is the IV fiasco. Multiple tries to get it in and then it blows within an hour. Okay, I get it. IVs don't alwys go right in and sometimes they blow. But . . . . then lab comes in to draw his labs. Thanks lab chickadee, YOU LEFT A FREAKING SHARP IN MY KID'S CRIB!! It wasn't even capped! Not to mention the rubberband you also left in there. Second IV goes in his head. This is a normal place to put an infant's IV. But, I ask, won't the neuro want it some where else since he's having brain surgery??? She tells me nope, it's okay because it's on the other side of the head. Next morning, doc comes in and wants to know why the IV is in his head. I tell him. He's mad. He tells me they will use it to knock him out and then replace it before they proceed with the shunt revision. I'm not shocked, but I am clearly annoyed with the nurse who put the IV in his head.
Surgery goes well. The catheter that goes from the shunt into the ventricle was clogged. The shunt and the tubing into his abdomen were both functioning properly. So, the doc just replaced the catheter. Colton was taken to the PICU after his surgery. As we were walking in the PICU someone asks if we are the Coats. We nod, he says, GOOD! We need you, he's awake and not happy! So, we rush to his room to find him screaming and crying and thrashing about. I look at Bubba and ask, "Is this how I am coming out of a general?" He nods; I say, "Well, then, I would like to take this moment to apologize to everyone." So, the nurses medicate him with about a half a dose of morphine. No help. Then, we try to give him some tylenol with codiene and juice. He spits it all up. Then some Zofran to help with any nausea. Then some Ativan because he is clearly trying to go to sleep, but just can't let himself. Nope, doesn't work. Then a full dose of morphine. Aaaaahhhhhh, good night, my sweet baby.
The night was really uneventful. At about 3pm the next day, a MRI showed the shunt was in the proper place and the ventricles were already shrinking. We got our discharge papers and home we went. But, once we got home, a long, long night began. Colton began throwing up. He wouldn't keep anything down. We went back to giving him juice to see if that would stay down. No such luck. So, at mightnight, I call the advice and tell her I want the neurosurgeon paged so that I could talk to him. No, she says, we need to bring Colton into the ED. UGH! Bubba and I rush around packing my bags to prepare for another few day stay in the hospital. And, then, I have an idea. I call my work and ask to speak to the pedi who is covering our nursery. We talked about what is going on. She told me that since Colton had never had straight juice, it might be too harsh on his system. So, we mixed his bottles half juice/half water until we could get to the store in the morning to get some Pedialyte. We also fed him a half an ounce every 15 - 30 minutes. Oh, it was a long night. Since I hadn't slept much in the hospital, Bubba stayed up most of the night feeding Colton. The next day was long and trying, but Colton was slowing keeping more of his bottles down. But, he would throw up his whole feeding if we gave him any formula. We were giving him Tylenol every 6 hours or so.
On Halloween morning, Colton woke up feeling much better but it took until the evening for him to keep down about 3 ounces of formula. But Monday morning, he was eating full formula feeds. Poor baby. I think we jumped the gun bringing him homw Friday night. He probably needed more Zofran to keep the nausea under control. Both Bubba and I have a terrible time with post-operative nausea and vomiting. For me, it can last up to three days. For Bubba, he says it lasts 24 hours. Um, no, Bubba, you will randomly vomit up to a week later!!!
So, how about some pictures from the hospital visit . . .
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| I'm just gonna eat this, okay? |
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| Hit a button and milky bottles magically appear :) |
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Preemie Prison |
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In pre-op |
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| Lots of drugs on board . . . . |
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| Vending machine dinner |
Tuesday, November 2, 2010
Road Trip Photos :)
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| Amanda in Santa Nella - 1st stop - Starbucks! |
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| Hungry Sock Monkeys |
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| Buttonwillow Truck Stop |
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| Mmmmm . . . . fries . . . . |
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| I love me some fries! :) |
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| Why is there a Busch in front of my hotel?!?!?! NASCAR in Fontana |
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| Seanie and Nana |
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| Colton and Nana |
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| Sunset from the Anaheim Hilton Don't worry . . . more photos to come . . . |
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