I think last time I was on this thing Brooklynn was to have heart surgery...so they attempted to do a cath (thru her groin) surgery which she would of been out the next day, but not much to our surprise we fell in the 2% of kids that are not able to have it done...the shape of her PDA was rare, so when they went to put in the coil it was slipping into her lungs. We were scheduled a week later for another surgery that went thru her back. She did awesome, we were in the hospital for 3 days (just as a precaution). She now has a 2" scar on her back and on on her chest from the tube they had to put in. After she was healed we saw a huge change in her...she ate more, her breathing was not rapid and her urine output was normal. We thought we were on the road to great weight gain!!!! No so much, we have come to realize with Brooklynn there is 3 steps forward 2 steps back.
Bring on the flu....Brooklynn ended up with the stomach flu 2x and a cold. In which caused her not to eat and she lost 6oz. It won her a trip to the ER for being dehydrated. As of now (a month later) she has a stuffy nose that is lingering but she has gained all her weight back that she lost plus some.
I am going to try to keep this thing updated as much as I can (remember). This is the only real big new from my last post.
Friday, June 25, 2010
Monday, April 26, 2010
Over the past 5 months....
She has had appt after appt...The 1st month she was home we were in the ER twice due to her retaining water which we were told might be from her lung disease. She had a follow up on
- Eyes: which are well they will follow her for a couple years to make sure they don't end up crossed!!
- Heart: she still has a PDA that now at 7 months (corrected) 4 months (adjusted) she will have fixed (May 4th) because it is causing her issues (breathing, feeding, sleeping, circulation in her hands and feet)
- NICU development: she is weak on her left side due to her grade 4 IVH on her right side of the brain, they will not diagnose her with CP yet but he said that once she turns a year her most likely will. He told me that he does not see her being wheel chair bound but there is a high chance she will have some sort of limp or need assistance. He also said that with her left hand she might over / under reach due to her Cerebellum bleed.
- PT/OT: they will be with her until she is at least 3 years old, they are here to help with her weak side and her tight muscles (due to her IVH). Some things that are noticeable now: she tuns her left hand in and bows out her arm and leaves her thumb in the middle of her hand, she leans her head to the right since her left is weak which will cause her right muscles to be tight, she does not move her left leg as much as she moves her right and she turns in her left ankle, she has rapid movement on her left leg at times. (most of these sound minor to some but they are not to her)
- Feeding Clinic: it has been an ongoing fight with them and us. They want to switch so much stuff with her feeding it was crazy. So in Jan I pulled her NG tube and made her feeding schedule on the times that she was awake. For about a month she was eating every 2hrs but she would sleep from 10pm to 530am, which was awesome we didn't have to wake her up. She recently had another follow up to do a swallowing test which she past for the most part they just want us to thicken her food a little since like every 3 swallows she took a drop went into her lungs. Other then that she was and is doing awesome. They will redo the test after her recovery from surgery
This is what I remember and what is the most important challenges she faces. This is also just a summary of the main things that is going on.
Thursday, March 4, 2010
Our NICU roller coaster...
Brooklynn weighed 2lbs 3.75oz and was 13.75in long, she was FULL of hair!!!! I will try to keep this one short and list what went wrong. We were in the NICU for 75 days and she was intubated for 45 days. Everyday we went up for the 1st month there was always something new. She ened up getting late onset of group B strep, so one again they stopped feedings and started meds. Everything they said could happen with her did. The only thing that she did not get out of the stuff they told us was ROP (Retinopathy of Prematuriy). During her fight in the NICU she was on and off the the C-Pap and Ventilator. Here are some things that she has or had against her:
- Anemia
- Apnea
- RDS (Respiratory Distress Syndrome)
- Grade 4 IVH right side(Intraventriclur Hemorrhage)
- PVL (Periventricular Leucomalacia)
- Grade 2 IVH left side
- PDA (Patent Ductus Arteriosus) still open
- CLD (Chronic Lung Disease)
- Cerebellum Bleed
The things in red are the things that we are still dealing with and will be for a while. There was so much more while we were in the NICU, but I said I would keep it short...lol...She came home Nov 23rd weighing 5lbs 13oz. She came home with a feeding tube thru her nose and we were left to change it every 7days and put it back in when she decided to pull it out, but we are in for the long haul regardless what was thrown at us.......
This is the picture the night Brooklynn came home and the 1st time the sisters got to meet!!!! It was so exciting!!
** We could of not been more thankful for the people that helped us out in the 75days. Getting Baylee to school picking her up and taking care of her on the weekends for a couple hours...I don't know what was more heart breaking having you 27 week baby fighting for her life or having your 6 year old being upset because she cant meet her sister**
Wednesday, March 3, 2010
09-10-09 We welcomed Brooklynn Paige
As they wheel me up to my room all I can think about is "why". I did everything I was suppose to. Of course that thought soon passed when I passed out from the meds. I found out from the doctor who delivered me that my placenta had torn 50%, which was a huge change from earlier that day. It wasn't till the next morning that my husband took me down there before he went to work to see her. of course I called down there a couple times. When I saw my daughter in the incubator fighting for her life but looking so peaceful it was the scariest thing. I didn't stay long, I think I blamed it on the pain but in all reality it was the hardest thing that I have had to deal with. I to this day can not really describe the feelings that I had.
The next 3days were filled with people coming to see us, doctors coming in and out. My last day there I finally asked who was the actual doctor because they would come in 5-6 at a time, I thought I was on a House episode. Even though the whole thing is bitter sweet for me I understood that it was the best for our daughter, and she is now in the best hands.
For the rest of my hospital stay I sat and pondered everything. All the information that the doctors had given us on what could go wrong (IVH, PDA, ROP...ect). I did what I would not suggest any parent doing, I researched online for days. There was alot of bad and some good. I think at one point I was told by all the NICU doctors don't look online, there were just to many sad stories on there. For me it was preparing myself for what was or could come in her future.
On 09-13-10 I was released from the hospital to go home, it was hard I was leaving empty handed, I was leaving our daughter to fight for her life on her own. Before we left the hospital we went to talk to the doctors, they pretty much went thru what they were looking at over the next couple day (head U/S, ECO, eye exam...ect). And off we were to go home....
The next 3days were filled with people coming to see us, doctors coming in and out. My last day there I finally asked who was the actual doctor because they would come in 5-6 at a time, I thought I was on a House episode. Even though the whole thing is bitter sweet for me I understood that it was the best for our daughter, and she is now in the best hands.
For the rest of my hospital stay I sat and pondered everything. All the information that the doctors had given us on what could go wrong (IVH, PDA, ROP...ect). I did what I would not suggest any parent doing, I researched online for days. There was alot of bad and some good. I think at one point I was told by all the NICU doctors don't look online, there were just to many sad stories on there. For me it was preparing myself for what was or could come in her future.
On 09-13-10 I was released from the hospital to go home, it was hard I was leaving empty handed, I was leaving our daughter to fight for her life on her own. Before we left the hospital we went to talk to the doctors, they pretty much went thru what they were looking at over the next couple day (head U/S, ECO, eye exam...ect). And off we were to go home....
Tuesday, March 2, 2010
Our Miracles journey....
My husband and I tried to get pregnant for 8months, we found out in April 09' we were pregnant and due December 10th 2009. We did not tell anyone due to a miscarriage a couple years ago. Just a couple weeks into the pregnancy I started bleeding heavy, I for sure thought I was miscarrying. I went into the doc they checked me could not find the heart beat but also told me I was still early, they sent me to get a blood test on my levels and talked to me about giving me a pill to end the pregnancy my doctor for sure thought I was losing the baby, she called me that afternoon and said that my levels looked great and I was to go back if I started bleeding again. Not even a week later I was at work and started bleeding went back in and they were preparing me for the worst. the doctor went out I got undressed and in came the U/S machine. I could see the screen and sure as s*** I saw a lil flicker, the doctor was in shock after that she scheduled me a U/S with a tech and wanted to see the blood flow. I was diagnosed with a large SCH (Subchronic hemorrhage). So I was to take it easy, no lifting, no sex...nothing. At the beginning of my 2nd trimester they did another U/S and saw that the SCH had resolved itself, at this point I was in the clear. So we scheduled my 20wk to find out what we were having....ITS A GIRL, but I have a bicornuate uterus (which I knew with my 1st daughter) so not only is it more heart shaped with this pregnancy my placenta has attached in a horn on the point so now the concern is when my uterus grows I risk my placenta tearing. We went on as normal with frequent trips to the doctor (I think I have frequent flier miles to cash in there).
Every year on labor day weekend we go camping, after some good doc visits I was given the OK to go camping but take it easy and if anything happen to come right in (well I failed to tell my doc that it was 6 hrs away). Off we were left Thur night. All was well Thur night, Fri night & Sat during the day...I had what I thought might have been contractions but nothing that hurt. Come Sat night I was getting ready to go to bed, I felt like I was bleeding walked around the trailer to check, and sure enough I was...it was so bad that I was covered from hip to feet within minutes of me noticing it. So my husband and I were off the the nearest hospital. I do not think I have ever seen my husband so emotional. Now just before all the bleeding commotion my husband thought he would have a couple drinks (which we don't drink but maybe once a year, if that) so since he drank our friend drove us to the hospital. Thank god for the people we were camping with they actually kept our other daughter (6yrs old) with them. So we get to the hospital and no joke it looked like a mental home I was sooo scared and when the doc came in I was more worried about his teeth falling on me then anything. He did his check and I was not dilating but I was softening, They gave me drugs to stop contractions and for he pain I was starting to have. When the nurse came back in she said that they were flying my out to a hospital that has a good NICU because they did not have what they needed to deliver a 26wkr, they wanted to get me close to home also since I was 6hrs away. After 2hrs of waiting they came back and said that they were flying me to a hospital that does have a great NICU but I was still going to be 5hrs from home...UGH!! Once they told us that my husband left to drop off the friend that brought us, he did have the option to fly with me but since we were going to be not close to home he needed to have a truck just in case I was sent home. He just drove straight to the hospital after the camp site since it was a 3hr drive for him and a 45min flight for me...of course I was still waiting for life flight to come. Once they got me in the air craft we were off...that was the scariest experience, it truly sent me into labor. Not only was the puddle jumper all over the place it just happen to be a rainy day I mean down pour. I get to the hospital, the nurses get me all wired up and check me and I was dilated to 1.5cm...I know it was the plane ride. Not even 30min of be being there my husband shows up. We then get ourselves ready for a long road. Our days there we have doctors come and talk to us everyday about what would happen if we delivered our daughter, what to expect, complications..ect. On our 4th day we had a doc come int and give an U/S after about an hour he said that he wanted to get me home close to family & friends because he didn't have much hope I would make it to Thur of that week, the plus side is my stay there there was not a whole lot of change but they also had me on meds to stop my contractions...so after multi calls to our ins company we again ended up flying out...and once again I was by myself because my husband had to drive the truck...we tried so hard to let them discharge me and let me drive with him but they would not...and again I was loaded on a plane and off I went. An hour later I was in yet another hospital. Thank god my Tammy was there waiting for me since my husband had a couple hour drive and he was actually going to go home 1st to start laundry and shower, since he was going to work the next day. When I got there I was dilated to about a small 2cm, they did and U/S and found a mass (of blood) that they did not know if it was apart of me or the placenta. We were told that if it was part of me I would have to have a transfusion if I delivered. Oh if I went into labor I would not have a vaginal one it was automatic C-section. Now once again we have doctors, neo-doctors..ect talk to us, and we yet get ready for another long road...after being monitored for a couple days I was transferred to the upper floor where I did not have to wear the baby monitor and I was able to take a shower (thank god!!), plus the beds are way better and if I showed no more progression I would go home...we were there a day or two and they wanted to send me for a non-stress test and if all was good I was released. Well while being hooked up to the monitor I was contracting every 2-3min some I felt really bad some I didn't. They had a doctor come check me I was then dilated to 4cm...she told me that she was going to come and check me in an hour, after the hour she came back and I was a lose 4cm w/my water bag coming out. So once again I was sent to the 12th floor as the nurse was getting me all settled in I starting having alot of pain, she gave me something but it worked for 10min and my pain was back. While the nurse went to get different ones, I called my husband and told him what was going on, by this time he was off work and on his way up to the hospital, and it so happen to be the only day that he has been stuck in traffic. Now I have not mentioned thru this whole process the baby is doing great, awesome heart beat, great movement. When on the phone with my husband I got really hot, faint and weak to where I could barley hold the phone. Out of the blue I have like 6 doctors and nurses rush into the room and the one doctor that has been there with me came to my side and said "We have to take her now". The only thing I remember was trying to tell my husband but I ended up handing the doctor the phone and I rolled over.
The nurses laid me down, and got me ready as they were wheeling me out I happen to look up and all I saw was white coats, there had to be like 50 of them. I later learned that it was all the doctors, including the NICU crew. When I got into the room I switched beds but was so weak that I could barley get on the other bed, they made me drink this nasty crap, and the last thing I heard was when you start to wake up you will feel pressure in your throat. They had to put a breathing tube in because they had to knock me out. When coming to I remember the pressure in my throat and them wheeling me out telling me my husband was here. When I got into the room I saw him standing by the window looking scared. Whatever I felt soon passed because I was in so much pain. I was told my IV went bad, they pump you full of pain meds before they wake you so when you do wake up you are not hurting so bad. So they had to get a new IV and put me on a pain pump, which the nurse pushed every 6min to get my pain controlled. While they were doing that the doctor came got my husband and he went up to the NICU with them to see our daughter.....
Every year on labor day weekend we go camping, after some good doc visits I was given the OK to go camping but take it easy and if anything happen to come right in (well I failed to tell my doc that it was 6 hrs away). Off we were left Thur night. All was well Thur night, Fri night & Sat during the day...I had what I thought might have been contractions but nothing that hurt. Come Sat night I was getting ready to go to bed, I felt like I was bleeding walked around the trailer to check, and sure enough I was...it was so bad that I was covered from hip to feet within minutes of me noticing it. So my husband and I were off the the nearest hospital. I do not think I have ever seen my husband so emotional. Now just before all the bleeding commotion my husband thought he would have a couple drinks (which we don't drink but maybe once a year, if that) so since he drank our friend drove us to the hospital. Thank god for the people we were camping with they actually kept our other daughter (6yrs old) with them. So we get to the hospital and no joke it looked like a mental home I was sooo scared and when the doc came in I was more worried about his teeth falling on me then anything. He did his check and I was not dilating but I was softening, They gave me drugs to stop contractions and for he pain I was starting to have. When the nurse came back in she said that they were flying my out to a hospital that has a good NICU because they did not have what they needed to deliver a 26wkr, they wanted to get me close to home also since I was 6hrs away. After 2hrs of waiting they came back and said that they were flying me to a hospital that does have a great NICU but I was still going to be 5hrs from home...UGH!! Once they told us that my husband left to drop off the friend that brought us, he did have the option to fly with me but since we were going to be not close to home he needed to have a truck just in case I was sent home. He just drove straight to the hospital after the camp site since it was a 3hr drive for him and a 45min flight for me...of course I was still waiting for life flight to come. Once they got me in the air craft we were off...that was the scariest experience, it truly sent me into labor. Not only was the puddle jumper all over the place it just happen to be a rainy day I mean down pour. I get to the hospital, the nurses get me all wired up and check me and I was dilated to 1.5cm...I know it was the plane ride. Not even 30min of be being there my husband shows up. We then get ourselves ready for a long road. Our days there we have doctors come and talk to us everyday about what would happen if we delivered our daughter, what to expect, complications..ect. On our 4th day we had a doc come int and give an U/S after about an hour he said that he wanted to get me home close to family & friends because he didn't have much hope I would make it to Thur of that week, the plus side is my stay there there was not a whole lot of change but they also had me on meds to stop my contractions...so after multi calls to our ins company we again ended up flying out...and once again I was by myself because my husband had to drive the truck...we tried so hard to let them discharge me and let me drive with him but they would not...and again I was loaded on a plane and off I went. An hour later I was in yet another hospital. Thank god my Tammy was there waiting for me since my husband had a couple hour drive and he was actually going to go home 1st to start laundry and shower, since he was going to work the next day. When I got there I was dilated to about a small 2cm, they did and U/S and found a mass (of blood) that they did not know if it was apart of me or the placenta. We were told that if it was part of me I would have to have a transfusion if I delivered. Oh if I went into labor I would not have a vaginal one it was automatic C-section. Now once again we have doctors, neo-doctors..ect talk to us, and we yet get ready for another long road...after being monitored for a couple days I was transferred to the upper floor where I did not have to wear the baby monitor and I was able to take a shower (thank god!!), plus the beds are way better and if I showed no more progression I would go home...we were there a day or two and they wanted to send me for a non-stress test and if all was good I was released. Well while being hooked up to the monitor I was contracting every 2-3min some I felt really bad some I didn't. They had a doctor come check me I was then dilated to 4cm...she told me that she was going to come and check me in an hour, after the hour she came back and I was a lose 4cm w/my water bag coming out. So once again I was sent to the 12th floor as the nurse was getting me all settled in I starting having alot of pain, she gave me something but it worked for 10min and my pain was back. While the nurse went to get different ones, I called my husband and told him what was going on, by this time he was off work and on his way up to the hospital, and it so happen to be the only day that he has been stuck in traffic. Now I have not mentioned thru this whole process the baby is doing great, awesome heart beat, great movement. When on the phone with my husband I got really hot, faint and weak to where I could barley hold the phone. Out of the blue I have like 6 doctors and nurses rush into the room and the one doctor that has been there with me came to my side and said "We have to take her now". The only thing I remember was trying to tell my husband but I ended up handing the doctor the phone and I rolled over.
The nurses laid me down, and got me ready as they were wheeling me out I happen to look up and all I saw was white coats, there had to be like 50 of them. I later learned that it was all the doctors, including the NICU crew. When I got into the room I switched beds but was so weak that I could barley get on the other bed, they made me drink this nasty crap, and the last thing I heard was when you start to wake up you will feel pressure in your throat. They had to put a breathing tube in because they had to knock me out. When coming to I remember the pressure in my throat and them wheeling me out telling me my husband was here. When I got into the room I saw him standing by the window looking scared. Whatever I felt soon passed because I was in so much pain. I was told my IV went bad, they pump you full of pain meds before they wake you so when you do wake up you are not hurting so bad. So they had to get a new IV and put me on a pain pump, which the nurse pushed every 6min to get my pain controlled. While they were doing that the doctor came got my husband and he went up to the NICU with them to see our daughter.....
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