We finally made it into our own room on Thursday night and it has helped us relax dramatically.
It takes 5 days for virus cultures to come back. So this morning we found out that Caleigh has the Rhino virus, aka the common cold. Which explains why she still needs oxygen and has a super snotty nose.Caleigh's oxygen is at an 8th liter, which is like a whiff of air, but she just won't let us take it off.So a cold.... No telling where she picked it up at with the mounds of doctors appointments and people coming to the house for various reasons.Just another reason a sick, premature baby shouldn't be out socializing.
No one has said for sure why Caleigh stopped breathing but I think we are leaning towards the cold. Seizures shouldn't affect breathing. So we definitely caught a cold so that we could find out about the seizures.
Overall, Caleigh seems to be doing really well. Of course there's the oxygen thing,and her belly looks good.We actually went up on her feeds to 6ml an hour.GI had stopped the MUD antibiotic mixture on Wed and then started a probiotic. We plan to take a week off the MUD and then start it up again.Blood pressure is now stable and her seizure med is slowly getting to where we want it.
We anticipate staying in the hospital until Tuesday or Wed. Hopefully this post turns out ok. It was typed with love from my Blackberry, otherwise known as my Crackberry.
3.30.2008
3.28.2008
Rambles from the PICU
Didn't Eric do a good job? I might have to hire him from time to time to Blog while I'm sleeping.
Let me explain how incredibly scary the whole ordeal was........ I was blocking the sun from Caleigh eyes while she slept, I peeked a look from under my hand and Caleigh's tongue was hanging out of her mouth. I pulled my hand away and started rubbing her chest and head and got no response. She was BLUE. I yelled at Eric and pulled her out of her car seat as fast as I could. By then I had laid her on the seat of the car and Eric was there to do CPR. We didn't really panic, shock I guess, I called 911. And then, I was one of 'those' parents...........you know the ones.....the "why aren't they here yet?", " I can't hear the sirens", "Why aren't they hurrying?" Poor 911 operator........ It didn't take them long to get there, but the more Eric did CPR and the longer she wasn't responding made it feel like an eternity. Slow motion. We were in shock, how could this be happening, Caleigh has never 'not' breathed before. You know the rest of the story by Eric's post, but I can't stress enough how scary it is to have to do CPR on your own child, to watch her lifeless body laying there why you try everything in God's will to save her. I can still see her face every time I close my eyes, it was terrible.....
And, now for my public service announcement: LEARN the AMERICAN RED CROSS CPR procedures. It could save someones life and that someone might just be a loved one. Especially if you have a child. Without it, Caleigh wouldn't be here.
Ok on to little miss worry her parents to death, Caleigh. She is doing really well. Now that we have discovered her seizure problem, the medicine seems to be helping her tremendously. Caleigh slept through the night in her own crib. I changed her diaper once around 2am and then back to sleep she went. Right now the dose of the med is strong, making her sleepy, so that we can get it in her system quickly. So while she slept, we got some much needed shut eye. When we get home, I will explain the types of seizures that she is having, but in a nut shell she was showing subtle signs that we were chalking up her irritability, PVL and tummy issues. We think the reason she wouldn't sleep more than 10-15 min. in her own bed was that the seizures were disturbing her sleep patterns. She would cough, gag and wake up and she hasn't done that since we started the meds. I think we will slowly see more improvement in her irritability and sleep deprivation. I'm even praying for some sort of routine.
When we were at the GI docs office, we were telling him about her hyperventilating spells and our doc was very close to admitting her to the hospital. He went back and forth about it and we finally decided that since it only happened while we restrained Caleigh in some way, that he wouldn't admit her. I called him on the way to the ER, only being gone from his office for about 45 min, and he said that he should have went with his gut feeling. Yesterday, we told him that if he had admitted Caleigh, then she wouldn't have fallen asleep in her car seat and stopped breathing. We wouldn't have found out about the seizures and we would still have an irritable baby that no one can figure out. Everything happens for a reason and God was watching over us with his plan.
Caleigh's blood pressure has also been very high since she was admitted. We now have a kidney doctor and we did a renal (kidney) ultrasound yesterday and they found 2 gallstones. I'm sure we will start meds to help dissolve them today. Her kidneys looked great. Caleigh is on two different blood pressure meds and she seems to be stable on those. It seems like the list of Caleigh's doctors is growing by the day, but if we can figure something out, I'm all for more docs. We are also weaning Caleigh's oxygen down, right now she is at a quarter liter through a nasal cannula. Her Pulmonologist (lung doc) has been coming by to see her everyday as well.
Equipment.... as if Caleigh wasn't easily mobile as it is we will be adding to our hospital at home. An apnea monitor to make sure she is breathing, blood pressure machine and a possible set up for 'backup' oxygen just in case. At least we will be at home.
Caleigh is still in the Peds ICU, we've had orders to go on a regular floor for two days but Cooks is so full right now that we haven't been able to get a room. We are hoping for a room this afternoon, but well see. The ICU here is really rough. Very sad and not as private as it should be. It's been very emotional because of our situation, but I feel like we are living out the other families situations at the same time. I'm hoping my prayers for the other families will help but overall it is Exhausting.
That's all for now, thank you for all your kind words, thoughts and prayers. They help keep us strong as a family.
3.27.2008
Just can't seem to stay away
Hello all,
Well as some of you already know Caleigh scared the crap out of us on tuesday evening on the way home from her GI Dr.'s appointment and bought herself an admission to the Pedi ICU at Cook's Childrens. I hope Holly approves of this message, because this is Eric telling the stories tonight. We were about one half mile or less from being home when Holly yelled at me to pull the car over because Caleigh was not breathing. So we turned off of the large road on to a side street and I ran around and took Caleigh while Holly called 911. Caleigh was blue, limp, unresponsive and not breathing. I did some CPR and rescue breathing and stimulating and after about 1 or 2 minutes she began to occasionally take some shallow slow breathes, and after helping her breathe and stimulating her she began to breathe more and more on her own and the i could her the fire truck coming, what a relief. When they got there we gave her some oxygen and waited on an ambulance. finally after about 5 minutes in she finally began to cry some and that was some more relief, but it was not the vigorous cry that you would expect from Caleigh. I road with Caleigh in my lap in the ambulance and Holly drove home to get some supplies that Caleigh needed and met us at the hospital. After a short time in the ER Caleigh was admitted to the pediatric ICU. So then all the Dr's are trying to figure out the cause of the apnea episode. They ran all kinds of blood work and her WBC count was elevated pointing toward a possible bacterial infection some were. The Neurologist ordered an EEG that monitors brain activity and they have determined that Caleigh is having seizures, she had 3 during the 30 minute study. She does not have the seizures that most people think of witch are called grand mal seizures when someone has rhythmic tonic clonic movements(shaking). Her's have no noticeable physical signs it is just disturbances with the electrical activity in her brain. This can be easily controlled with medications witch they have started her on. I just came home to shower and get some clothes and things. Holly is up and the hospital (holding Caleigh of course) so i just wanted to let everyone know what is going on. I sure Holly will have much to add to these late breaking developments because i just hit the highlights and am about to head back to go take care of my beautiful girl's. Caleigh is probably going to be moved to a regular room tomorrow and we don't yet know how long they will keep her around but hopefully the will get her fixed up and back home very soon. I hope all of this made sense because after all it is 2 am and Holly and I snuk in about 2hrs of sleep each on Tuesday night.
Thanks for everyone's prayers, Eric
Well as some of you already know Caleigh scared the crap out of us on tuesday evening on the way home from her GI Dr.'s appointment and bought herself an admission to the Pedi ICU at Cook's Childrens. I hope Holly approves of this message, because this is Eric telling the stories tonight. We were about one half mile or less from being home when Holly yelled at me to pull the car over because Caleigh was not breathing. So we turned off of the large road on to a side street and I ran around and took Caleigh while Holly called 911. Caleigh was blue, limp, unresponsive and not breathing. I did some CPR and rescue breathing and stimulating and after about 1 or 2 minutes she began to occasionally take some shallow slow breathes, and after helping her breathe and stimulating her she began to breathe more and more on her own and the i could her the fire truck coming, what a relief. When they got there we gave her some oxygen and waited on an ambulance. finally after about 5 minutes in she finally began to cry some and that was some more relief, but it was not the vigorous cry that you would expect from Caleigh. I road with Caleigh in my lap in the ambulance and Holly drove home to get some supplies that Caleigh needed and met us at the hospital. After a short time in the ER Caleigh was admitted to the pediatric ICU. So then all the Dr's are trying to figure out the cause of the apnea episode. They ran all kinds of blood work and her WBC count was elevated pointing toward a possible bacterial infection some were. The Neurologist ordered an EEG that monitors brain activity and they have determined that Caleigh is having seizures, she had 3 during the 30 minute study. She does not have the seizures that most people think of witch are called grand mal seizures when someone has rhythmic tonic clonic movements(shaking). Her's have no noticeable physical signs it is just disturbances with the electrical activity in her brain. This can be easily controlled with medications witch they have started her on. I just came home to shower and get some clothes and things. Holly is up and the hospital (holding Caleigh of course) so i just wanted to let everyone know what is going on. I sure Holly will have much to add to these late breaking developments because i just hit the highlights and am about to head back to go take care of my beautiful girl's. Caleigh is probably going to be moved to a regular room tomorrow and we don't yet know how long they will keep her around but hopefully the will get her fixed up and back home very soon. I hope all of this made sense because after all it is 2 am and Holly and I snuk in about 2hrs of sleep each on Tuesday night.
Thanks for everyone's prayers, Eric
3.24.2008
Caleigh's First Easter
and first holiday home.......
What an exciting day it was! As I sit here at the computer, Caleigh attached to my favorite new baby item, bouncing on our exercise ball, trying to keep the good'ole paci in........ I think to myself 'wow this is a lot of work!' & 'wow we are so very blessed to have Caleigh home for her first holiday. It was a bit cool outside, sunny but cool. We didn't take Caleigh out except for a stroller ride around the block and a few pictures on the back porch. We had a wonderful lunch/supper of turkey, dressing, and all the goodies. Caleigh was in a wonderful mood all day and that was a gift in itself.
That's a big bunny!
A lot has been going on since I last wrote, of course, because it was forever ago! Lets see, ok, Caleigh is sleeping ok but with mommy or daddy at all times. She still won't let us put her down for any reason. I'm learning how to make her as mobile as possible, but sometimes you just need two hands. Her feeds seem to be going about the same and her belly looks good. Her stools have been liquid the past two days and we are watching this closely. Stable is a good word for little miss right now.
Caleigh has had a few more of her hyperventilating spells lately and we have been in touch with our Neurologist. Tomorrow morning he wants us to take Caleigh to have a CT scan of her little noggin just to see if anything has changed to cause her irritably. He also prescribed her a mild sedative for those instances, but it doesn't seem to be working very well. Eric and I did a 'test' run with the medicine on Sat afternoon and then drove Caleigh to the park. She did the same thing with the hyperventilating so the med didn't really help the situation. She seems to be having a panic attack when we put her in the car seat, and just about anything that we have to hold her down to do. Lets just pray that Caleigh cooperates for the scan and we don't have any spells during the test. We have a neuro appointment on Thursday where we will find out the CT results. Along with the CT scan tomorrow, we also have an GI appointment in the afternoon. I'm sure we will have news from that visit as well.
Developmentally, Caleigh is still struggling. She is still non verbal, no smiles and we work daily on the simple tasks of holding her paci, grabbing toys, etc. Still no luck, but these things take time. I have been reading a lot about developmental delays and of course researching as always. I guess in the back of my mind these things were secondary to the main goal of getting Caleigh home from the hospital. Everything would fall into place and she would start developing normally when we got her home, I thought. I know, I know, we've only been home 3 weeks. I need to remember all that patience I learned while in the hospital and start using it. Our therapy will began soon and things will start rolling, Caleigh's issues, or needs, won't be a one stop shop and I still have to remember this from time to time.
On to the bands, yep our NICU ID bands..... Eric and I wore our ID bands forever! Eric's fell off, during a fire, two weeks before Caleigh got to come home. Mine stayed on until Easter night. I don't know why really....it was very nasty, 7 mths old and then some and for some weird reason I was proud, attached and really resistant to taking it off. It was the only piece of property linking us to Caleigh in the hospital. She has a matching band that stayed on her bed at all times. The number M6145, very important, when we would call to check on Caleigh that is the number we gave the nurse to identify us as her parents. I could tell you this number in my sleep. I will be forever attached to our bands and ID number for the mere fact that it was our connection to our baby when we couldn't be by her side.
Blessed & Happy Easter Everyone!
What an exciting day it was! As I sit here at the computer, Caleigh attached to my favorite new baby item, bouncing on our exercise ball, trying to keep the good'ole paci in........ I think to myself 'wow this is a lot of work!' & 'wow we are so very blessed to have Caleigh home for her first holiday. It was a bit cool outside, sunny but cool. We didn't take Caleigh out except for a stroller ride around the block and a few pictures on the back porch. We had a wonderful lunch/supper of turkey, dressing, and all the goodies. Caleigh was in a wonderful mood all day and that was a gift in itself.
That's a big bunny!A lot has been going on since I last wrote, of course, because it was forever ago! Lets see, ok, Caleigh is sleeping ok but with mommy or daddy at all times. She still won't let us put her down for any reason. I'm learning how to make her as mobile as possible, but sometimes you just need two hands. Her feeds seem to be going about the same and her belly looks good. Her stools have been liquid the past two days and we are watching this closely. Stable is a good word for little miss right now.
Caleigh has had a few more of her hyperventilating spells lately and we have been in touch with our Neurologist. Tomorrow morning he wants us to take Caleigh to have a CT scan of her little noggin just to see if anything has changed to cause her irritably. He also prescribed her a mild sedative for those instances, but it doesn't seem to be working very well. Eric and I did a 'test' run with the medicine on Sat afternoon and then drove Caleigh to the park. She did the same thing with the hyperventilating so the med didn't really help the situation. She seems to be having a panic attack when we put her in the car seat, and just about anything that we have to hold her down to do. Lets just pray that Caleigh cooperates for the scan and we don't have any spells during the test. We have a neuro appointment on Thursday where we will find out the CT results. Along with the CT scan tomorrow, we also have an GI appointment in the afternoon. I'm sure we will have news from that visit as well.
Developmentally, Caleigh is still struggling. She is still non verbal, no smiles and we work daily on the simple tasks of holding her paci, grabbing toys, etc. Still no luck, but these things take time. I have been reading a lot about developmental delays and of course researching as always. I guess in the back of my mind these things were secondary to the main goal of getting Caleigh home from the hospital. Everything would fall into place and she would start developing normally when we got her home, I thought. I know, I know, we've only been home 3 weeks. I need to remember all that patience I learned while in the hospital and start using it. Our therapy will began soon and things will start rolling, Caleigh's issues, or needs, won't be a one stop shop and I still have to remember this from time to time.
On to the bands, yep our NICU ID bands..... Eric and I wore our ID bands forever! Eric's fell off, during a fire, two weeks before Caleigh got to come home. Mine stayed on until Easter night. I don't know why really....it was very nasty, 7 mths old and then some and for some weird reason I was proud, attached and really resistant to taking it off. It was the only piece of property linking us to Caleigh in the hospital. She has a matching band that stayed on her bed at all times. The number M6145, very important, when we would call to check on Caleigh that is the number we gave the nurse to identify us as her parents. I could tell you this number in my sleep. I will be forever attached to our bands and ID number for the mere fact that it was our connection to our baby when we couldn't be by her side.
Blessed & Happy Easter Everyone!3.19.2008
Running Behind
We are running behind on sleep, blogging, returning calls, emails, appointments, paperwork, etc. etc. etc., blah blah blah.....
Who knew that getting into the next room to get on the computer for 10 min. would be so hard! You know that timeless saying "a baby changes your life"? Well, they weren't even joking around! We love it though!
Caleigh is doing very well. Eating is going ok. She had a few days where she wasn't stooling enough and we were giving her glycerin suppositories to help the cause. Last night she got it all out and seems to be feeling better today. The MUD mixture seems to be doing its job. Caleigh's sleeping is still on the fritz, but overall she is getting enough sleep throughout a 24 hr period. Unfortunately, for us, it isn't all at the same time or all at night. She has developed a large anxiety about us putting her down for any reason. Therefore, we sleep sitting up holding her most of the time. We can't put her down.....she screams every time and all she wants is to be held. Eric and I take turns and there pretty much needs to be 2 people taking care of her at all times. I think we created this little monster in the NICU when we would hold her day after day. Thank God for the Baby Bjorn! She has also had a few more of her hyperventilating episodes since we have brought her home. It's the same thing she did during the car seat test, but now she does it during dressing changes, diaper changes and car rides. We plan on discussing her new found anxiety (which isn't really that new) with the neurologist at our next appointment. We have also applied for a developmental pediatrician and behavior analyst to start seeing her.
Is it bright out here? Or is it just me?
We have been trying to work things out with our home health care agency and it looks as though we have straightened them out for the time being. We will be the only ones doing her dressing changes and any sterile procedure needed. Eric has insisted on some supplies, that we were told, they didn't have and couldn't order. So miraculously, we have received the forbidden supplies. For the time being we plan on staying put with the current agency since they seem to be on the same page as we are.
We had a meeting with ECI (Early Childhood Intervention) which is the new therapy program that Caleigh qualifies for. It's for Occupational Therapy, Physical Therapy and Speech Therapy. It's a government program that all children with developmental delays and certain diagnosis qualify for until they are 3 yrs of age. They usually come out to your home 1-2 times a week. So we are looking forward to getting things started with them.
Caleigh has gained a whole pound since we brought her home. Yay! Packing on the pounds! She has really started drooling a lot this week and we are kinda thinking that she might start teething here soon. She is almost 5 mths old adjusted. So it's about time to start the teething train. I don't know how we will react to all the 'normal' baby stuff! Eric & I try to go for walks ,with Caleigh, when the weather is nice and she really seems to like the change of scenery. Hopefully, the weather will cooperate for lots of walks to come.
Who knew that getting into the next room to get on the computer for 10 min. would be so hard! You know that timeless saying "a baby changes your life"? Well, they weren't even joking around! We love it though!
Caleigh is doing very well. Eating is going ok. She had a few days where she wasn't stooling enough and we were giving her glycerin suppositories to help the cause. Last night she got it all out and seems to be feeling better today. The MUD mixture seems to be doing its job. Caleigh's sleeping is still on the fritz, but overall she is getting enough sleep throughout a 24 hr period. Unfortunately, for us, it isn't all at the same time or all at night. She has developed a large anxiety about us putting her down for any reason. Therefore, we sleep sitting up holding her most of the time. We can't put her down.....she screams every time and all she wants is to be held. Eric and I take turns and there pretty much needs to be 2 people taking care of her at all times. I think we created this little monster in the NICU when we would hold her day after day. Thank God for the Baby Bjorn! She has also had a few more of her hyperventilating episodes since we have brought her home. It's the same thing she did during the car seat test, but now she does it during dressing changes, diaper changes and car rides. We plan on discussing her new found anxiety (which isn't really that new) with the neurologist at our next appointment. We have also applied for a developmental pediatrician and behavior analyst to start seeing her.
Is it bright out here? Or is it just me?
We have been trying to work things out with our home health care agency and it looks as though we have straightened them out for the time being. We will be the only ones doing her dressing changes and any sterile procedure needed. Eric has insisted on some supplies, that we were told, they didn't have and couldn't order. So miraculously, we have received the forbidden supplies. For the time being we plan on staying put with the current agency since they seem to be on the same page as we are.
We had a meeting with ECI (Early Childhood Intervention) which is the new therapy program that Caleigh qualifies for. It's for Occupational Therapy, Physical Therapy and Speech Therapy. It's a government program that all children with developmental delays and certain diagnosis qualify for until they are 3 yrs of age. They usually come out to your home 1-2 times a week. So we are looking forward to getting things started with them.
Caleigh has gained a whole pound since we brought her home. Yay! Packing on the pounds! She has really started drooling a lot this week and we are kinda thinking that she might start teething here soon. She is almost 5 mths old adjusted. So it's about time to start the teething train. I don't know how we will react to all the 'normal' baby stuff! Eric & I try to go for walks ,with Caleigh, when the weather is nice and she really seems to like the change of scenery. Hopefully, the weather will cooperate for lots of walks to come.
3.15.2008
7 mths old
Caleigh is seven months old!
We've been settling in the last few days trying to relax after all the doctors appointments last week. We went for what we thought was an x-ray of Caleigh's hip on Friday but it turned out that they needed to do another ultrasound because the first one was hard to read. The radiologist actually came into the sono room with us and watched it happen in real time. We have had him as our radiologist before so he was really open about what he saw which wasn't much. The area looked good and it isn't popping out of place. We talked him into doing an x-ray anyways so that we wouldn't need to come back at a later time in case someone thought it would be necessary. So we did that and we haven't heard back from anyone, but pretty much the diagnosis is mineralization of the bones due to nutritional malabsorption. TPN is great and it's a life saver, but it just doesn't absorb like regular nutrition does. So basically Caleigh has 'soft' bones and we just need to be careful with her.
Caleigh's sleeping routine is going better. After all, she has known nothing but the NICU all her life and it was her home up until now. So she just needs to get adjusted and we can't expect that to happen over night. She seems to be feeling a little bit better which helps her sleep too. Not to mention her Mimi holding her all night long while mom gets some rest. Were working on getting a bedtime routine down and sticking with it. 'Working' is the key word!
We've been having trouble with our home health company so we have started working on getting a new one on board. Things aren't being done right and we don't have the time to complain and argue about how they should be operating. We may be over protective, but this is our baby and we want nothing less than perfect for her all the time.
I've been going through a ton of paperwork. Caleigh has received more mail in the last week than Eric and I both get in a month! What a popular baby :-) Got to move on to more paperwork........
We've been settling in the last few days trying to relax after all the doctors appointments last week. We went for what we thought was an x-ray of Caleigh's hip on Friday but it turned out that they needed to do another ultrasound because the first one was hard to read. The radiologist actually came into the sono room with us and watched it happen in real time. We have had him as our radiologist before so he was really open about what he saw which wasn't much. The area looked good and it isn't popping out of place. We talked him into doing an x-ray anyways so that we wouldn't need to come back at a later time in case someone thought it would be necessary. So we did that and we haven't heard back from anyone, but pretty much the diagnosis is mineralization of the bones due to nutritional malabsorption. TPN is great and it's a life saver, but it just doesn't absorb like regular nutrition does. So basically Caleigh has 'soft' bones and we just need to be careful with her.
Caleigh's sleeping routine is going better. After all, she has known nothing but the NICU all her life and it was her home up until now. So she just needs to get adjusted and we can't expect that to happen over night. She seems to be feeling a little bit better which helps her sleep too. Not to mention her Mimi holding her all night long while mom gets some rest. Were working on getting a bedtime routine down and sticking with it. 'Working' is the key word!
We've been having trouble with our home health company so we have started working on getting a new one on board. Things aren't being done right and we don't have the time to complain and argue about how they should be operating. We may be over protective, but this is our baby and we want nothing less than perfect for her all the time.
I've been going through a ton of paperwork. Caleigh has received more mail in the last week than Eric and I both get in a month! What a popular baby :-) Got to move on to more paperwork........
3.13.2008
One day early
Yesterday, I called the GI doc to see if we could bring Caleigh in a day early for her appointment. She had been off the 'MUD' antibiotics since Monday and she was already showing signs that the bacterial overgrowth was coming back. She was very fussy (even for her) and she was having a lot of yellow drainage from her button site. Plus she was breathing about a 100 times a minute which told us she was doing her same'ole routine. So they got us in the last appointment and we changed up a few things. First we are starting the 'MUD' mixture again and we will keep Caleigh on it for 2 wks and then see how things go again. Our GI doc also added Bethanechol to the array of meds already on Caleigh's plate. This med helps the muscle system related to the gastrointestinal tract. Since Caleigh's intestinal muscles aren't working we hope this med will stimulate them to do the right thing. Our doc also ordered us melatonin to give to Caleigh at bed time. Melatonin is a natural hormone in everyones body that is triggered by daylight and nighttime. It basically helps you relax and is considered very helpful in children with neurological disorders. Plus it is a natural route to try since so many sleep aides are very habit forming in children. Eric and I are going to start tracking Caleigh's sleep in a log so that when we go to the neurologist appointment we can have an example of her sleep patterns. Also our GI doc made me promise to take some time away really soon......apparently I looked really tired? Go figure :-) Caleigh's labs this week looked great. Her direct bilirubin is .9 which keeps getting better and better.
So on Tuesday we went to do a hip ultrasound and then took Caleigh to the surgeons office. She had a really great day. Loved her car ride, semi-loved the ultrasound and really loved the surgeons office. I'm pretty sure she missed all of her NICU aunts & all of the doctors. It's a definite fact that she misses the florescent lights! Caleigh was in awe of them everywhere we went.
The radiology department called yesterday morning and wants us to come and get hip/leg x-rays on Friday to backup 'whatever' they think they see on the ultrasound. It kinda stinks not being in the NICU for these kind of things. We were always told what they see when they are doing it and we usually didn't have to wait for the radiologist to read the films and write the report. So anyways, I'm sure there is something there or they wouldn't be having us come in for x-rays. Hopefully, we can talk it out of the radiologist on Friday. Wish us luck!
So on to today.... last night Caleigh didn't sleep hardly a wink and she has been asleep pretty much all day long. So at least she is getting the sleep somewhere to catch up. Her button is draining a lot more and her belly is a bit more distended than yesterday. Good thing we started the antibiotics back up this morning. Hopefully, we caught it in time. Other than the normal routine, things are moving along well.
So on Tuesday we went to do a hip ultrasound and then took Caleigh to the surgeons office. She had a really great day. Loved her car ride, semi-loved the ultrasound and really loved the surgeons office. I'm pretty sure she missed all of her NICU aunts & all of the doctors. It's a definite fact that she misses the florescent lights! Caleigh was in awe of them everywhere we went.
The radiology department called yesterday morning and wants us to come and get hip/leg x-rays on Friday to backup 'whatever' they think they see on the ultrasound. It kinda stinks not being in the NICU for these kind of things. We were always told what they see when they are doing it and we usually didn't have to wait for the radiologist to read the films and write the report. So anyways, I'm sure there is something there or they wouldn't be having us come in for x-rays. Hopefully, we can talk it out of the radiologist on Friday. Wish us luck!
So on to today.... last night Caleigh didn't sleep hardly a wink and she has been asleep pretty much all day long. So at least she is getting the sleep somewhere to catch up. Her button is draining a lot more and her belly is a bit more distended than yesterday. Good thing we started the antibiotics back up this morning. Hopefully, we caught it in time. Other than the normal routine, things are moving along well.
3.10.2008
Pedi + Photos
Caleigh's first Christmas!For those that didn't know, Eric & I left the Christmas tree up for Caleigh. We didn't expect it to stay up until March, but what tha heck! We put her in her 'baby's 1st christmas' outfit and opened up the gifts that Santa had put under the tree. Her face pretty much says it all......
We played by the tree the next morning too!
Not to worry, the Christmas season is now over and won't be showing back up until December, where it belongs.
So today was Caleigh's first Pediatrician appointment. We spent all morning packing bags and equipment and then loading the car for our 1:45 appointment. We got to the appointment and the first thing we requested was to be taken to a room immediately. We don't need Caleigh picking up any bugs at the doctors office. One thing is for sure....when you come in flashing tubes and wires hanging from your baby, things get done really fast! We were taken to a room where we filled out paperwork and waited for the doctor. Caleigh weighed 10lbs 1.5 oz and is 22 inches long. It's funny cause when we first showed up they said 'oh a newborn appointment'?...... I forget that Caleigh is sooo small for her age and she does look like a 10 lb newborn. Caleigh got her 6 mth shots and we don't have to go back until she is 9 mths old. We ended up really liking our choice and hopefully she is one doc that we won't have to see soon.
Caleigh has been doing really well. Her tummy looks great and we have an appointment with our GI doc on Thursday so I expect us to raise her feeds up. Our last dose of the 'MUD' antibiotics was given this evening. We are going to try to make the 10 days off so that we can cycle it on & off. We don't want her to become resistant. She isn't sleeping very well by herself and we usually have to hold her the whole time. As soon as we get her laid down she has retching spells and then she is wide awake again. Tomorrow we have an appointment with Caleigh's surgeon but before that we are taking her to get an ultrasound on her left hip over at Cooks. During Caleigh's discharge evaluation our Neo noticed some clicking in her left hip area and wanted us to get it checked out. As with the previous 'healed' fractures that were noticed, this is all a result of her prolonged TPN usage. Hopefully it is nothing and that is what we are praying for.
Some interesting Caleigh info:
-Caleigh loves to watch the ceiling fan go round and round.
-She has started to 'bat' at us & toys with her left (her weaker) hand (but only when she wants too)
-She seems to love her car rides, but only when the car is actually moving and the faster the better!
-Hoosier & KoKo love Caleigh! Hoosier cries when Caleigh cries......it's too cute
Obviously, things have been nuts in the Gray household! Eric and I read every comment that you write and we really do appreciate all the thoughts and prayers for our family. I know everyone has been calling and I am trying to get back to everybody asap....but Caleigh has NO schedule and we sleep when she sleeps, which hasn't been much lately. We are usually holding her 24/7 and I have nicknamed her the Velcro Baby! At least we are now able to hold her 24/7 in our home........
Not to worry, the Christmas season is now over and won't be showing back up until December, where it belongs.
So today was Caleigh's first Pediatrician appointment. We spent all morning packing bags and equipment and then loading the car for our 1:45 appointment. We got to the appointment and the first thing we requested was to be taken to a room immediately. We don't need Caleigh picking up any bugs at the doctors office. One thing is for sure....when you come in flashing tubes and wires hanging from your baby, things get done really fast! We were taken to a room where we filled out paperwork and waited for the doctor. Caleigh weighed 10lbs 1.5 oz and is 22 inches long. It's funny cause when we first showed up they said 'oh a newborn appointment'?...... I forget that Caleigh is sooo small for her age and she does look like a 10 lb newborn. Caleigh got her 6 mth shots and we don't have to go back until she is 9 mths old. We ended up really liking our choice and hopefully she is one doc that we won't have to see soon.
Caleigh has been doing really well. Her tummy looks great and we have an appointment with our GI doc on Thursday so I expect us to raise her feeds up. Our last dose of the 'MUD' antibiotics was given this evening. We are going to try to make the 10 days off so that we can cycle it on & off. We don't want her to become resistant. She isn't sleeping very well by herself and we usually have to hold her the whole time. As soon as we get her laid down she has retching spells and then she is wide awake again. Tomorrow we have an appointment with Caleigh's surgeon but before that we are taking her to get an ultrasound on her left hip over at Cooks. During Caleigh's discharge evaluation our Neo noticed some clicking in her left hip area and wanted us to get it checked out. As with the previous 'healed' fractures that were noticed, this is all a result of her prolonged TPN usage. Hopefully it is nothing and that is what we are praying for.
Some interesting Caleigh info:-Caleigh loves to watch the ceiling fan go round and round.
-She has started to 'bat' at us & toys with her left (her weaker) hand (but only when she wants too)
-She seems to love her car rides, but only when the car is actually moving and the faster the better!
-Hoosier & KoKo love Caleigh! Hoosier cries when Caleigh cries......it's too cute
Obviously, things have been nuts in the Gray household! Eric and I read every comment that you write and we really do appreciate all the thoughts and prayers for our family. I know everyone has been calling and I am trying to get back to everybody asap....but Caleigh has NO schedule and we sleep when she sleeps, which hasn't been much lately. We are usually holding her 24/7 and I have nicknamed her the Velcro Baby! At least we are now able to hold her 24/7 in our home........3.08.2008
The New Normal
Normal? This is the new normal we have been craving for months. Caleigh is home!
Our last family photo in the NICU
Load'er up!Here's how our last day in the NICU started......On Wed. we got to the hospital around 9am and Eric and I preceded to pack all of Caleigh's many...many things. When your baby is in the hospital for 6 1/2 months things seem to accumulate quickly! We waited on doctors, waited on our home health nurse to bring Caleigh's IV pump, talked to our case manager many times, looked at schedules, waited on home health some more, and then started saying our goodbyes. When home health showed up it was 4 o'clock. We spent the next hour going over Caleigh's IV pump, hanging her new TPN and packing up some more of her stuff. We said some more goodbyes, cried a lot, smiled a lot and then made our way to the car. When we were finally pulling out of the hospital it was 5:50. Whew! We were already tired and then........
Caleigh's very first car ride!
She didn't know what to think.....so she went to sleepWe pulled into the garage, got Caleigh out of the car, had to hook up her feeding bags asap, she had meds that were due as well. After Eric unloaded everything we had to set up the pumps on the IV poles, we ordered pizza, home health made a huge delivery at 8:30pm, we gave Caleigh her first bath at home around 10pm and then we preceded to play the up an down of trying to get Caleigh to sleep. 1 hour here, 2 hours there; needless to say we are officially broken in as new parents. On top of her crazy NICU schedule Caleigh has to get meds around the clock. Babies without short gut tend to eat every three hours and sleep between feeds, but Caleigh's belly is always full and she has never had a normal schedule so our goal is to work towards one.
Of course, we stopped to take the front door picture!Oh, and I failed to mention that I got horribly sick that night! Some kind of stomach virus! Eric was such a trooper and stayed up with Caleigh all night while I was up and down and back and forth to the bathroom. Did I say it was horrible yet?? Cause it was! The entire time Caleigh was in the NICU I was there every single day and I didn't get sick once, but the night that my NICU stress was relieved I guess my body decided to give in. I'm worried about Caleigh getting the bug but so far she seems to be doing well. My mom came over on Thursday and helped us out. Unfortunately the whole day is a blur. It could have been sleep deprivation or being sick, either way I don't recall much, but I'm happy to say that I feel all better now. Whew!
Caleigh is doing really well, Eric and I are so excited to have her home, but I can't stress enough that our home now looks like a hospital. Supplies everywhere, IV pumps, poles, bags and all her medicines........
Here is just a glimpse of Caleigh's med schedule.......
6am - Mylicon, Reglan, Ursodial, Zantac
8am - MUD (baterial overgrowth antibiotics, 3 meds)
9am - Prevacid
Noon - Mylicon, Reglan
2 pm - Ursodial, Zantac
6pm - Mylicon, Reglan
8pm - MUD
10pm - Ursodial, Zantac
That's 19 doses of medicine per 24 hr period.
During all of this we are turning Caleigh's feeds on for 4 hours and off for 1 hr. We are super busy trying to get used to the schedule.
But you know what? Despite all the 'hospital' that we had to bring home, we are extremely thrilled and still a little shocked that she is actually at home with us. This morning I sat in bed holding Caleigh until 10am, in my PJ's, drinking coffee and just soaking up the moments that I have dreamed of for so long.
PJ's, yep I'm not getting out of them until Monday when we have our first doctors appointment. I have been dressed and at the hospital for 6 1/2 months and for a few days, at least, I refuse to 'get dressed'......
I'm so excited that I get to hold Caleigh when I write on the blog dedicated her.
Of Course there is lots more to talk about.....until next time.....
3.05.2008
6mths2wks5days, 201 days in the NICU, 29 wks........
Today, Eric & I welcomed Caleigh home from the hospital!
As soon as things settle down a bit I will post all the details plus the photos. Thank you for all the continued prayers towards Caleigh's homecoming, they definitely worked. We still have a long, long road ahead...... but as of right now our little angel is sleeping in her own crib for the very first time and we have discovered that living in the moment is a precious gift.
XOXO, the gray's
As soon as things settle down a bit I will post all the details plus the photos. Thank you for all the continued prayers towards Caleigh's homecoming, they definitely worked. We still have a long, long road ahead...... but as of right now our little angel is sleeping in her own crib for the very first time and we have discovered that living in the moment is a precious gift.
XOXO, the gray's
3.01.2008
One Year Ago
Yes, two, ..... I took two pregnancy tests....you can't always believe the first one...
that's why they come in packs of 2 or more!
On February 22, 2007, I found out that we were pregnant. It was a Thursday night and Eric was at the firestation. I had to hold my exciting news for a whole day until the next night when we were both home from work. Thoughts raced through my head during the day. A baby! I had always wanted to be a mom...always. Eric and I had been talking about having a baby for a year. I had stopped taking birth control & started taking prenatal vitamins a year earlier. We had bought a house, I had finished my degree, Eric had the job of his dreams and we knew that we were ready after 6 years of marriage. We tried to get pregnant and it worked the very first month...oh my gosh....the very first month! There was a human, our child, growing inside of me. I was 4 wks and a few days along from my calculations......what a whirlwind. When Eric came home the next night I told him our news with a huge smile on my face, we hugged, kissed and talked about how excited we were to be having a baby.
Who would have thought that one year down the road we would be where we are as a couple, as parents. To have a beautiful baby girl, to have been through the struggles that we have already faced as parents. Looking back I can't even imagine our lives being this way. Eric and I will always have the 'what if's' in the back of our mind, but we LOVE Caleigh to pieces and we can't think of our lives without her. We have a miracle baby girl, we are the parents that I always imagined us being and we have a strengthened relationship through our strifes. The past year has been nothing short of a true blessing.
Who would have thought that one year down the road we would be where we are as a couple, as parents. To have a beautiful baby girl, to have been through the struggles that we have already faced as parents. Looking back I can't even imagine our lives being this way. Eric and I will always have the 'what if's' in the back of our mind, but we LOVE Caleigh to pieces and we can't think of our lives without her. We have a miracle baby girl, we are the parents that I always imagined us being and we have a strengthened relationship through our strifes. The past year has been nothing short of a true blessing.
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