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BROOKLYN MY LIL FIGHTER

mommytothree

September 2010

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WILL IT EVER GET BETTER?

Mar 10, 2010 11:07pm (EST)

I don't even know where to start. I know it's been about a week since I blogged, I just havn't been in the mood I guess.

Last week I had to take Brooklyn back to the dr because she was fussing again and they said that she had another double ear infection. This is the 2nd one in 3 weeks, they said that if she gets another one this season then they are sending her to an ENT dr to see about tubes. UGH just one more appt that I need. My schedule is so full as it is.

Then last wednesdays she had her weekly OT appt and they told me that the Sensory Intergration that she has will never go away. I was in total shock. I thought that she would get through this and things would be fine. This just brought me down and I'm having a hard time getting back up.

This week she has a cold and so does my other daughter and today I started feeling like I'm getting one. GRRR I sure don't have time for this and I worry so much about Brooklyn when she gets sick too. She had her 9 month check up yesterday and she is 26.5 in and 15lbs 8 oz. She is finally on the charts. YAY!!! She had OT today and they think that she is making improvements. I'm not quite sure. She still seems to really struggle some days just to get through the day. Today was one of those days. She has just worn me out. She screams and cries all day and I can't figure out what is wrong. She goes back to the GI dr on Friday but there is nothing I guess they want to do right now they want to give the Previcid time to work. It's just frustrating we go in circles it seems.

I'm just exhausted and overwhelemed. It's so much at times. Having 4 kids under the age of 5 is exhausting. The other kids get neglected at times just because Brooklyn requires so much of my time. My husband works all the time so I'm mostly home alone too. I know some of this may not sound that bad to many of you that have experienced more but to me after having 3 healthy children and a high needs baby I'm just overloaded. I have delt with this crying now for 8 months. I'm just.....

Thanks for reading this, just having a really down moment I guess.......

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Mar 01, 2010 11:33am (EST)

I had posted pictures, but now I don't see them. What did I do wrong. HELP?

Posted by mommytothree | Comments: (1) | Permalink

OH NO!

Mar 01, 2010 11:31am (EST)

Woke up this morning to a congested and very fussy baby. UGH We've already had one scare with RSV even though she recieves Syngais (sp) injections. Her Dr isn't in til tomorrow. So I'm just trying to keep her comfortable for today.

I had my suspicions on Saturday that she wasn't feeling well, because she took a 3 hr morning nap which she never does. Then yesterday she didn't want to eat much.

I just hope this passes soon.

I finally got around to getting some pictures posted.

#1 Brooklyn when she was born.
#2 Daddy's hand showing how small she is.
#3 The Day I was discharged from the hospital. One of the hardest days of my life leaving my baby girl.

Posted by mommytothree | Comments: (2) | Permalink

MORE ON BROOKLYN

Feb 27, 2010 12:00am (EST)

Brooklyn has had alot of struggle since being discharged from the NICU. They labeled her "Failure to Thrive" as she has struggled constantly with her weight and growth. She just had a weight check this last week and she's way down on her weight gain again. I just don't know what else we can do. It's just heartbreaking. She's currently on breastmilk fortified to 27 cal. They don't really want to increase it to 30 cal because they worry it'll be too thick for her. We have started her on some solids but the only thing that she'll take is Sweet Potatoes but not after fighting the first few bites.

She has alot of sensory problems and there seems to be more and more coming up lately. Today she had a hard time with me dressing her. She doesn't like her head or her arms touched so anything that has to go over her head or anything where you have to mess with her arms she has a fit. I know her therapist said she'll get through it, but there's just times I wonder.

She also struggles with reflux so she screams all the time. She had an upper GI study but they didn't see anything. First she was on Zantac twice a day but it only worked like 3 hrs after taking it. The Dr suggested maybe a PH study, but when we went back to the GI dr she said that she wanted to try another medicine first before they did anything extensive. So now she is on previcid. She seems to be doing much better on it and she doesn't scream as much as she once did.

This last week was a rough week and I'm so glad that I found this place long ago. It makes you not feel so alone. People just don't understand what it's like to have a preemie and all the struggles that come with it.

Posted by mommytothree | Comments: (3) | Permalink

BROOKLYNS STORY

Feb 25, 2010 09:34pm (EST)

I'm going to warn you now that this is very long and I'm sorry for the length of it. I tried to shorten it as much as possible.

When we found out that we were pregnant there was alot of mixed emotions. I had just had my IUD removed and bam I was pregnant. It looks like I might of gotten pregnant just right before the removal. After such a rough prior pregnancy I was little nervous. I got in to the Dr right away. They did an ultrasound and there we saw a little heart beating. That just about melted me. They sent out a referral to a high risk dr for me to see due to my extensive history I have had with all my pregnancies. I was seen right away and we went over the plan. They aren't sure too much on how this protein c antibody worked so they said we'd play it by ear. I was going to the MFM every 2 weeks and my regular OB every other week so I was being monitored weekly. I finally had an amniocentesis and it showed that the baby had inherited the c protein. So they would monitor the middle cerebral artery in the center of the babies brain to measure the blood flow. If the numbers increased then it meant that she could be anemic and then they said if that happened they would consider doing an in utro blood transfusion. We soon found out we were having a girl. We were excited but scared at the same time, after all we had been through with Natallie. My cervix thinned a little and I had been having some cramping so they started the Progesterone shots weekly. I had bi-weekly ultrasounds to monitor the growth of the baby and the MCA. Everything was looking good till I had one night something woke me up and I wasn't feeling the baby move. I called the Dr and they told me to come in. So we headed out for our 1hr drive to the hospital. Once I got there they hooked me up and the dr came in and did an ultrasound. They could see the baby moving a little on the ultrasound but nothing alarmed them at that moment. They sent me home and from there I was so worried as I hardly ever felt her move. I went in to MFM for my 29 week visit and they did the ultrasound and she wasn't moving much then either and the MCA numbers were on the rise. They took me into the room and hooked me up to the monitor and they came back in with worried looks on their face. Then the nurse came in with what she called the baby alarm clock. It made this vibrating noise. They put in on my stomach to see how her reaction was. She got excited for a moment but then settled right back down. The Dr came in and explained that she wasn't having enough variability in her heart rate and that her MCA numbers were high. They said that they wouldn't be able to give her an in utro transfusion because of the position of my placenta. The risk that my utrus could rupture was high. So they said let's just keep an eye on it for the time being. They wanted me admitted to the hospital. I received my first steroid shot then and was devastated that I couldn't go home to see my babies. When I got over to my room and all settled in they brought me dinner and said Welcome to Motel Salmon Creek. I laughed I said I'm not staying here. I think I'm just staying here overnight for monitoring. They monitored her through the night and there wasn't any change. The next morning I talked the Dr in to letting me go home to see my babies. He said ok but you have to come back tomorrow. The next day I also had an appt with my regular OB then was going to head to Vancouver for that appt. When I got to the OB they hooked me up and wouldn't let me leave. The Dr wanted me transported by Ambulance down to Salmon Creek. They were really worried about the baby. My Dr called the high risk dr and he said that I could just drive down as they couldn't monitor me in the ambulance. But I had strict orders to get down there asap. I ran home to grab my bags and the sitter came over for the kids and my husband and I headed down to the hospital. I checked back in and there I stayed till I delivered. They monitored her several times a day and I had daily ultrasounds. She was stable, but she wasn't growing she was about 4 weeks behind on growth. My BP was on the rise too. I had started to develop the beginning stages of PIH again. I was scared too I didn't want that again. I remembered the last time.
I missed my kids so much. I got to talk on the phone to them several times a day but I just missed seeing them. I had been there 13 days and my husband had brought the kids down to see me. I was having a great time seeing the kids. As the day went on I began to not feel well. The nurse had me lay down and they started monitoring the baby. My BP was up so the nurse suggested that my Husband take the kids home. As he left the 1st scare took place. Her heart rate dropped to 60 and wasn't recovering. There was half a dozen nurses in the room trying to get me into a position to get her heart rate back up. It came back up. Then the Dr came in with all the paper work for me to sign just in case they had to whisk me into surgery right away. I called my husband to let him know what was going on and told him that I'd let him know if there was any changes. Then it wasn't 10min later her heart rate dropped again. The nurses were already in the room so they were trying everything they could to get her heart rate back up. Then it'd come back up. We battled this off and on all night. It was such a long night. My husband finally came down because they said that if something major happened they wouldn't wait for him. We had a sleepless night. The Dr came in 1st thing and said well we're delivering this baby today. She's in distress and is not liking it in there, we need to get her out. Brooklyn Grace-Marie was born at 31 weeks gestation. 1350g (2lbs 15oz) and 15in long. She had IUGR and was the size of a 28 weeker. They had told me that if she cries they would show her to me if not they were whisking her away to the R room. She did cry so I got to see her. I had never seen someone so small. She was just precious. The Dr said that my placenta was very small. They think that it had quit growing and feeding the baby that she just became weak. If I had been at home I would have lost my precious baby girl. Even though I hated being in the hospital away from my babies I was thankful that is where I was. Brooklyn is a miracle. She had some oxygen to open up her lungs but then never needed anymore.

The next morning we went down to the NICU to be there in time to see the Dr and they said not even 24 hrs after birth that her bili was already over 11. So they were going to go ahead and get her under the lights and give her, her first dose of the IVIG to help slow down the breakdown of the red blood cells. They said that if the IVIG didn't work then they would look at doing an exchange transfusion. I was just sickened. My baby so small and helpless. I wanted to take everything from her. After the IVIG they checked her bili and it hadn't gone up any so we were out of the woods at the moment and she was stable. She did really well was just so small for so long. She had lost down to 2lbs 12oz, but nothing huge. She struggled with apnea episodes and Brady's all the time. She also struggled with her feedings but they said that could of been because she was anemic. She spent 3 weeks under the lights till her bili was down enough and didn't rebound too much. When she was finally starting to eat, she did so well through the feeding tube. She was able to digest it well. They had to push the feeding on her because her veins were so small and fragile. She had 2 iv's that she got roping in then in another she got a calcium burn. They put in a PIC line and she also got roping from that. It was just sad. I was so glad when she was able to take in enough to keep herself hydrated and they were able to remove all the IV's. She then just became a feed and grow baby. She spent 5 long weeks in the NICU and we made sure that we were down there every day to be with her. The day that we brought her home she was 4lbs 4oz. She had continued blood work done to watch her numbers to see if she was going to need to have a blood transfusion. We did have to go back to the NICU 3 weeks after she was discharged to have a blood transfusion and they thought that she might need to come back for a 2nd one, but her body slowly started producing and maturing its own red blood cells.

She is now 8mo old and is 14lbs 14oz and 25 inches. She is behind in her development, has reflux, feeding and weight issues and has Sensory Integration problems. I will blog more later about her growth and development.

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MY 4 BEAUTIFUL CHILDREN

Feb 25, 2010 12:27pm (EST)

I'm a mommy to 4. I have 2 boys and 2 girls. My 1st son was born at 32 weeks. I hadn't been feeling well for 4 days and just thought that I had the flu. But I was getting worse every day, finally my husband talked me into going to the hospital to get checked out. When I got there they got me all settled in and checked my BP and the nurse said WOW her BP is really high. The Dr said "she's just nervous". They started a 24 urine collection and said that I should be able to go home by the next afternoon. The next morning they sent it to the lab. We waited around all day never being informed of anything. The Dr finally came in at about 6:25 and said that I was going to be sent to Portland. That it looked like I had developed PIH my BP was extremely high and I had so much protein in my urine. He had talked with the specialist at Emanuel and they thought it would be best if I was down there. I was in the ambulance and on my way by 7pm. In the ambulance on the way down my BP was 175/115 and they were surprised that I wasn't having seizures. When I got there I was greeted by a couple Drs. They told me that I had PIH and that I'd be delivering by the end of the week. It was about midnight and we decided that we were going to get some sleep. I awoke at about 4am in SO MUCH pain. I was trying to wake my husband up and I hurt so bad that I could hardly talk. Finally he woke up in a panic and went and got the nurse. My room was soon flooded by Drs, nurses and the ultrasound tech. They said that my liver was swelling and that my kidney's were starting to shut down and that they needed to deliver asap. I had already received my steroid shots at 28 wks due to preterm labor. But that was kept under control by meds. I delivered Austin Joseph by emergency c-section at 10:25am he weighed 4lbs 1oz and was 17in long. He never needed any assistance to breathe. They labeled him a "feed and grow" baby and after 2 weeks in the NICU and driving an hour each day to see him, we were finally able to bring our baby boy home. Today he is a Healthy and active 5 year old.

When Austin was about 3 mo old we found out that we were pregnant again. The pregnancy was a GREAT one never any trouble. I delivered Lander by c-section at 37 weeks after 17hrs of labor. He was 5lbs 15oz and 19in long. Today is also an healthy and active 4 year old.

We again found out we were pregnant again when Lander was 10mo old. This time we found out we were having a girl. We were so excited. At 13 weeks pregnant I started bleeding. I called the Drs and they told me that I might be having an miscarriage and that there was nothing they could do. That they didn't consider it a baby till 20 weeks. I was so angry with the dr. The bleeding finally stopped and so that Monday I went in to see if there was still a heartbeat and there was. I was so relieved. They never did know why I had the bleeding but the Dr wanted me to lay low (bed rest) the rest of the pregnancy. This was so hard to do with 2 little ones already at home. I made it to 37 weeks before I went into labor. It was the hottest day of 2007 here in Longview, WA. I was sent over to the hospital to get prepped for a repeat c-section. I delivered Natallie Ann Lenore at 8:46pm she weighed 7lbs 4oz and was 21 inches long. She was such a beautiful baby with a head full of hair. A few days later our worlds were turned upside down. They checked her bili numbers and they were at 23.4 they took her from me while I was nursing her and said she has to get under the lights now. They started drawing blood to see why her bili was so high and they couldn't find anything. Then the next day they checked it again and it had gone up to over 24 so the dr thought it would be best if she was transferred to another hospital just in case she needed a blood transfusion as that hospital didn't have the means to do it on a newborn. The transport team came up from Portland and transported her to Legacy Salmon Creek where she was admitted to the NICU there. They put her in a bili bed and she had 5 lights on her. We weren't allowed to take her out from under the lights to hold her. We fed her from a bottle under the lights. After several days of blood work and trying to figure out what in the world happened, one of the Neonatologist suggested that they check mom's blood again. I went and they took tons of my blood. That afternoon the results came back and found out that I have rare protein c antibody that had attacked Natallie's system. (none of this ever came up in any of my prenatal blood work.) They gave her 2 rounds of IVIG to try to slow down the breakdown of the red blood cells. After 9 days under 5 lights they took her out and she only rebounded to 11.5. They let us go home but said that we'd be coming back for a blood transfusion at some point. We had to have continuous blood work done at the hospital lab. Her crit numbers kept going down and her body was not producing its own red blood cells. We went in on a Wednesday and her blood work was down enough to be sent in for a blood transfusion the next morning. We headed down to Vancouver bright and early. Her blood was a water consistency and she looked so sick. We had to wait around all day for the blood from the blood bank because they had to do extra screening on it due to the antibody. Finally that evening it came and she received a total of 4 oz of blood over a 24 hr period. She did great after the transfusion. She never had any more problems. Today she is a healthy and active 2 1/2 year old.

More to come on #4 our little Fighter and I'll also get some pictures posted too.

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