Today is my due date. Pretty crazy huh? I can't imagine what life would have been like if Eli hadn't been born early. And to think if he was born now, we would just be starting the process we just went thorough, instead of being through it already!
One thing that makes me laugh is people's reactions to Eli. We went to Fred Meyer yesterday and everyone who saw him (excluding the people that actually know me, which were a lot yesterday!) would look at him and say "oh a new little baby" or "you are brave to bring such a young baby to the store". Then they would all ask me how old he was. Of course I would respond that he's 6 weeks old. And they would all do shocked double takes at him and I am sure they were wondering if I ever feed my child! Then I would say, but his due date is tomorrow and they would all be like "ooooohhhhhh!!!". It was pretty funny.
Wednesday, March 23, 2011
Monday, March 21, 2011
6 weeks old
Eli is 6 weeks old today. Crazy! And my due date would be this Wednesday the 23rd.
We had a pediatrician appointment on Friday to see his regular pediatrician. That went well, and he had gained some more weight. Weighing in at 5 lbs 13 oz. I would bet that today he is over the 6 lb mark! His doctor thought he looked good, and checked out everything, once again. He even gave me some tips for helping his scar heal better. I also noticed a suture that was still in his chest and Dr. Thakkar said at his 2 month appointment he could take it out. Which is way better because I had noticed the other disolvable sutures awhile back and everyone told me that I would have to talk to the surgeons about it. Which annoyed me because that would have meant another appointment. But Dr. Thakkar said that those would just disolve on their own, and the blue one that I saw could be taken care of there! It made me really glad with my choice of pediatricians!
As for little Eli, he fun during the day and is started being more awake during the day and is alert and looks around and rolls back and forth on his back. He is a little mover. He is very opinionated however. As soon as he is done with something, he is really done! And that kid can scream! Very unlike Caleb that's for sure. And he has trouble sleeping during the night and we have had quiet a few LONG nights, like last night where apparently 6:00 AM was his bed time. Hopefully he will take a long nap today so I can take one too! And I am hoping he starts figuring out that his long naps should occur at night! I think part of his problem is gas issues and he seems like he's in a lot of pain and is always "working on something". I am going to invest in some gas drops and lets hope they help!!! I need sleep.
We had a pediatrician appointment on Friday to see his regular pediatrician. That went well, and he had gained some more weight. Weighing in at 5 lbs 13 oz. I would bet that today he is over the 6 lb mark! His doctor thought he looked good, and checked out everything, once again. He even gave me some tips for helping his scar heal better. I also noticed a suture that was still in his chest and Dr. Thakkar said at his 2 month appointment he could take it out. Which is way better because I had noticed the other disolvable sutures awhile back and everyone told me that I would have to talk to the surgeons about it. Which annoyed me because that would have meant another appointment. But Dr. Thakkar said that those would just disolve on their own, and the blue one that I saw could be taken care of there! It made me really glad with my choice of pediatricians!
As for little Eli, he fun during the day and is started being more awake during the day and is alert and looks around and rolls back and forth on his back. He is a little mover. He is very opinionated however. As soon as he is done with something, he is really done! And that kid can scream! Very unlike Caleb that's for sure. And he has trouble sleeping during the night and we have had quiet a few LONG nights, like last night where apparently 6:00 AM was his bed time. Hopefully he will take a long nap today so I can take one too! And I am hoping he starts figuring out that his long naps should occur at night! I think part of his problem is gas issues and he seems like he's in a lot of pain and is always "working on something". I am going to invest in some gas drops and lets hope they help!!! I need sleep.
Tuesday, March 15, 2011
Wow!
Well we had our anticoagulation appointment today. It went well. They weighed Eli again, and he was 5 lbs 8 oz, so he has gained a half a pound in less than a week! Way to go chunky man.
We also discussed his clot and the Lovenox medication. The doctor wants to see him again on April 5th which will be about 6 weeks from the diagnosis of the clot and from when he got on the Lovenox. That is usually the minimum amount of time for someone to be on Lovenox. At this appointment she will also do another ultrasound of the clot and see what it's doing. She also wants to run some tests to make sure he doesn't have a disorder that will make him either clot too much or not enough. I wasn't exactly sure what all she was talking about, but I don't think it's a huge deal, except that it might affect how long they want to keep him on the Lovenox.
We also had another blood draw with Hector today and his Heprin levels were still within normal range, so we will keep with the same dose of Lovenox for another 3 weeks.
So for now things are going great, and it's wonderful to see that Eli is gaining so much weight. He does like his meal times!!! But we would love prayer for that clot! Please pray that it will be completely gone by April 5th and we can stop the injections. This is a prayer request mostly for me because I HATE giving him shots twice a day and I hate to have to be home at 8:00 (morning and night) in order to do it because it is a very timed ordeal. I would love to only have to continue for a few more weeks as opposed to a few more months as originally thought.
Thanks everyone for still checking the blog!
We also discussed his clot and the Lovenox medication. The doctor wants to see him again on April 5th which will be about 6 weeks from the diagnosis of the clot and from when he got on the Lovenox. That is usually the minimum amount of time for someone to be on Lovenox. At this appointment she will also do another ultrasound of the clot and see what it's doing. She also wants to run some tests to make sure he doesn't have a disorder that will make him either clot too much or not enough. I wasn't exactly sure what all she was talking about, but I don't think it's a huge deal, except that it might affect how long they want to keep him on the Lovenox.
We also had another blood draw with Hector today and his Heprin levels were still within normal range, so we will keep with the same dose of Lovenox for another 3 weeks.
So for now things are going great, and it's wonderful to see that Eli is gaining so much weight. He does like his meal times!!! But we would love prayer for that clot! Please pray that it will be completely gone by April 5th and we can stop the injections. This is a prayer request mostly for me because I HATE giving him shots twice a day and I hate to have to be home at 8:00 (morning and night) in order to do it because it is a very timed ordeal. I would love to only have to continue for a few more weeks as opposed to a few more months as originally thought.
Thanks everyone for still checking the blog!
Eli Pics: Unplugged and Homeward Bound
Sorry it's taken so long to get more pics up, I know it's everyone's favorite part. Enjoy!
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| Super Daddy & Son (this is what you get when you leave me at home alone with a child) |
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| First all-family picture. Everyone's smiling...well everyone who can smile. |
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| Eli's look: "You're sending me home with this guy?" |
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| Moving Out...Caleb is ready to go. |
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| I'd say he has a little room to grow into his car seat. |
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| Sleeping at home |
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| Under loving, yet constant supervision |
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| Caleb is "sharing" his Doc car with Eli |
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| Mom & Caleb enjoying the new view |
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| Just a few short years ago those big hands were the small hands. |
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| Caleb LOVES his little brother |
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| Monkey butt |
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| First bath at home |
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| Eli is a mover and a shaker for sure |
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| Sofia the Giraffe gets some snuggle time |
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| "ROXANNE!" |
Monday, March 14, 2011
First day alone!
Well I survived my first day at home with both of the boys! Ryan went back to work today, and I am sure he was so excited. It went well for me and the little boys. Granted we had nothing going on and didn't leave the house (we couldn't actually leave the house as my car died this morning and it was raining all morning so we were stuck inside). But it was a pretty good day.
Last night was not a good night and Eli didn't want to go to sleep EVER, so I was tired. I was nervous as to how this day was going to go. But it went great, Eli slept today so I did some laundry and played with Caleb. Then we all took LONG naps this afternoon. Well, I took a long nap, the boys took normal naps. But essentially that means we all woke up at the same time and I didn't get much else done today which I am fine with.
Tomorrow will be a different day. We have an Anticoagulation appointment at Seattle Children's at 9:15. I have no idea why we have to go to it as he got a blood draw last week and his Heprin levels are fine. But oh well. So we will be up and at um bright and early tomorrow morning. But I figure it will be a good practice run for us trying to get out of the house. The other thing that annoys me about this Anticoagulation apointment is that I didn't even know it was scheduled until last Wednesday when I was at my Cardiologist appointment and it printed out with that next appontment on it. And why does it have to be so early in the morning? I obviously didn't make that appointment. Then when I talked to the guy today about Eli's last blood draw and levels he said I will need to go back to the lab sometime this week and have another one done. No one told me that! Apparently I will have to do that every week for awhile, also no one told me that! So I either have to go to Bellevue Children's or Seattle Children's to have that done and I have to do it at noon every time. How annoying. That is lunch/nap time for all three of us! But that is just my rant for that day. Really everything else is going great!
Another fun thing, we were also able to go to church for the first time in 5 weeks yesterday. That was great feeling like we were getting back into a bit of our normal routine. We made sure only healthy people got close to us and people seemed to respect that! But it was really great to get out of the house as a family that wasn't just to a hospital. Caleb was really excited to go to Sunday school and didn't even want to finish singing with us, which is usually his favorite part of church. I guess he was really excited to show off his brother because apparently he kept telling everyone that "Eli is here"! So cute!
So we are on the road to normal life, and I am pretty excited!
Last night was not a good night and Eli didn't want to go to sleep EVER, so I was tired. I was nervous as to how this day was going to go. But it went great, Eli slept today so I did some laundry and played with Caleb. Then we all took LONG naps this afternoon. Well, I took a long nap, the boys took normal naps. But essentially that means we all woke up at the same time and I didn't get much else done today which I am fine with.
Tomorrow will be a different day. We have an Anticoagulation appointment at Seattle Children's at 9:15. I have no idea why we have to go to it as he got a blood draw last week and his Heprin levels are fine. But oh well. So we will be up and at um bright and early tomorrow morning. But I figure it will be a good practice run for us trying to get out of the house. The other thing that annoys me about this Anticoagulation apointment is that I didn't even know it was scheduled until last Wednesday when I was at my Cardiologist appointment and it printed out with that next appontment on it. And why does it have to be so early in the morning? I obviously didn't make that appointment. Then when I talked to the guy today about Eli's last blood draw and levels he said I will need to go back to the lab sometime this week and have another one done. No one told me that! Apparently I will have to do that every week for awhile, also no one told me that! So I either have to go to Bellevue Children's or Seattle Children's to have that done and I have to do it at noon every time. How annoying. That is lunch/nap time for all three of us! But that is just my rant for that day. Really everything else is going great!
Another fun thing, we were also able to go to church for the first time in 5 weeks yesterday. That was great feeling like we were getting back into a bit of our normal routine. We made sure only healthy people got close to us and people seemed to respect that! But it was really great to get out of the house as a family that wasn't just to a hospital. Caleb was really excited to go to Sunday school and didn't even want to finish singing with us, which is usually his favorite part of church. I guess he was really excited to show off his brother because apparently he kept telling everyone that "Eli is here"! So cute!
So we are on the road to normal life, and I am pretty excited!
Thursday, March 10, 2011
Settling Down
Well, things are settling down a bit. Eli had his first of many cardiology appointments at Children's Wednesday. Dr. Vernon thought everything looked great and didn't think she needed to see him again for 2 months! So that's great! They did an Echo and then she reviewed it and took a look/listen to Eli. She thought his repair looked awesome. And his incision looks great too. We still have to follow the same precautions with him as far as handling him, but really it isn't much different from any newborn baby! Also, he weighed 5 lbs at that appointment! So had gained 1.5 oz since Monday. Crazy boy, he's growing like a weed.
We finally finished our "remodel" job. We got the rooms painted and everything moved around. Now the fun of organizing can begin. Well, I guess it's already begun, we just need to finish up. At least we can walk through our house again! Everyone we have told we were doing this thought we were crazy, but at least we are mostly done and it's all behind us now.
We finally finished our "remodel" job. We got the rooms painted and everything moved around. Now the fun of organizing can begin. Well, I guess it's already begun, we just need to finish up. At least we can walk through our house again! Everyone we have told we were doing this thought we were crazy, but at least we are mostly done and it's all behind us now.
Tuesday, March 8, 2011
1 month old
So yesterday Eli turned 1 month old (and was 4 weeks old too). I am a terrible mom for not posting yesterday, but I didn't even look at my computer yesterday!
He had his first pediatrician appointment yesterday morning. It was a lot of "review of information" where we went over everything that has happened so far. He has a thick chart for someone so young! He got weighed at the appointment and weighed 4 lbs 14.5 oz, which is up about 4 oz from Friday! What a big dude! Other than that he's doing well. He's not a huge fan of sleeping at night, so that's been hard. Especially with all we have had going on with rearranging our house during the day. But hopefully we are on the last day of that today (at least for painting and moving all of the big stuff). And then I will be able to spend the next few days organizing and putting the small stuff back. But I am hoping that Eli will get the whole sleeping at night thing down quickly! It's taking it's toll on me and Ryan will be going back to work soon, so he won't be excited about getting up and helping out.
We are just excited to finish everything and start having a normal routine again. And to not be quarantined with him in our house. But we don't want him exposed to lots of germs quiet yet so we will keep him here for a little longer.
He had his first pediatrician appointment yesterday morning. It was a lot of "review of information" where we went over everything that has happened so far. He has a thick chart for someone so young! He got weighed at the appointment and weighed 4 lbs 14.5 oz, which is up about 4 oz from Friday! What a big dude! Other than that he's doing well. He's not a huge fan of sleeping at night, so that's been hard. Especially with all we have had going on with rearranging our house during the day. But hopefully we are on the last day of that today (at least for painting and moving all of the big stuff). And then I will be able to spend the next few days organizing and putting the small stuff back. But I am hoping that Eli will get the whole sleeping at night thing down quickly! It's taking it's toll on me and Ryan will be going back to work soon, so he won't be excited about getting up and helping out.
We are just excited to finish everything and start having a normal routine again. And to not be quarantined with him in our house. But we don't want him exposed to lots of germs quiet yet so we will keep him here for a little longer.
Sunday, March 6, 2011
Home
So we are into our second day home. But the craziness/fun doesn't stop for us. Some of you knew that with the addition of Eli to our family, it put us in a dilemma as to where to house all of us, as we have 2 bedrooms upstairs and 2 bedrooms downstairs. So after much thought and debate. We decided to swap our house around and move the bedrooms down stairs and the boys would share one room (it's the largest of our bedrooms and can fit a bed and a crib) and we would sleep in the other room downstairs. Then our office and guest room will get moved upstairs. We felt we needed to paint those rooms as well since we have never been fans of the colors they were. So Ryan spent the last few weeks clearing one room (the boys new room) and yesterday my parents came up and Ryan and my dad painted that room. Today they will clear and paint the other room. And then hopefully tomorrow we will be able to put our house back together. So we have had some pretty hectic days.
As for the adjustment to Eli it's been interesting. Since our house is not put together we have no real routine or place to put him yet. But hopefully soon. This next week will also be interesting as he will have some sort of doctors appointment every day. I figure it's my weening off of hospitals for me. I still have to go to the hospital, but at least I don't have to spend the whole day there. Then his appointments will taper off from there.
Eli seems to be doing well at home though. He eats, sleeps and poops like all other tiny babies! And boy can that little one poop! Way more than we ever had to deal with Caleb (but those of you who know Caleb, know he's not normal in that area!). We busted out our baby bathtub this morning and gave him a real bath. We have to be careful of his incision. But it's also important to keep that area clean. But he looks so much better now that he had a bath (he hadn't had a real one yet, so he was a bit crusty, and had tape residue all over him).
Caleb has been an AWESOME big brother! He loves Eli so much. Yesterday he got up and came out to the living room he looked at me with a blank stare, looked at Ryan with a blank stare, then looked at Eli and a HUGE smile came over his face. He went over to him and patted his head with his big "baby sigh" he does. He has also started calling him E and sweetie like I do. He's so funny. Every time Eli makes a noise Caleb rushes to him and exclaims "Eli's talking to me!!!" Then he just sits there next to him and holds his hand. It's so cute. We have some awesome pictures and I will try to have Ryan post them tonight when he's done painting.
Also, I know a lot of you have wanted to know what you could do to help us out. Bringing us meals would be a great thing, especially while we get adjusted to a regular schedule (and finish re-doing our house). We have a meal schedule through our church, but if anyone else would like to bring us food at all, we wouldn't object!!! So if you are interested e-mail either me or Ryan and we can schedule something, or give you the address to the website for you to sign up on.
Well, I am off to take a shower since it appears Eli is going to sleep a little longer, and Caleb is playing basketball! So I am free for a few minutes!
As for the adjustment to Eli it's been interesting. Since our house is not put together we have no real routine or place to put him yet. But hopefully soon. This next week will also be interesting as he will have some sort of doctors appointment every day. I figure it's my weening off of hospitals for me. I still have to go to the hospital, but at least I don't have to spend the whole day there. Then his appointments will taper off from there.
Eli seems to be doing well at home though. He eats, sleeps and poops like all other tiny babies! And boy can that little one poop! Way more than we ever had to deal with Caleb (but those of you who know Caleb, know he's not normal in that area!). We busted out our baby bathtub this morning and gave him a real bath. We have to be careful of his incision. But it's also important to keep that area clean. But he looks so much better now that he had a bath (he hadn't had a real one yet, so he was a bit crusty, and had tape residue all over him).
Caleb has been an AWESOME big brother! He loves Eli so much. Yesterday he got up and came out to the living room he looked at me with a blank stare, looked at Ryan with a blank stare, then looked at Eli and a HUGE smile came over his face. He went over to him and patted his head with his big "baby sigh" he does. He has also started calling him E and sweetie like I do. He's so funny. Every time Eli makes a noise Caleb rushes to him and exclaims "Eli's talking to me!!!" Then he just sits there next to him and holds his hand. It's so cute. We have some awesome pictures and I will try to have Ryan post them tonight when he's done painting.
Also, I know a lot of you have wanted to know what you could do to help us out. Bringing us meals would be a great thing, especially while we get adjusted to a regular schedule (and finish re-doing our house). We have a meal schedule through our church, but if anyone else would like to bring us food at all, we wouldn't object!!! So if you are interested e-mail either me or Ryan and we can schedule something, or give you the address to the website for you to sign up on.
Well, I am off to take a shower since it appears Eli is going to sleep a little longer, and Caleb is playing basketball! So I am free for a few minutes!
Friday, March 4, 2011
TODAY'S THE DAY!!!!!!!!!!!!!
I told you all that it would happen quickly. Yesterday at rounds all of the doctors felt that he was ready to come home. So they said make sure he has a car seat and be prepared to bring him home! The day yesterday was spent getting prepared to go home. He got half of his sutures out, and a hearing test. Plus the pharmacist instructed me on all of the medications he needs. And I have been practicing giving his Lovenox injection. I didn't want to say anything yesterday so as not to jinx it. Plus it's never a sure thing when they tell you something one day in a hospital, then the next day they could be thinking something totally different (Just look at how many days the told us we were going to the floor and it didn't happen for awhile).
Today, the only thing really holding him back was the car seat issue. We didn't have a car seat for under 5 lbs, and he's only 4.5 lbs. So they signed us up for the car seat program here at Children's which will be nice because it will probably be cheaper than going out and buying one from Target or Babies R us. So the OT got us a new car seat and he is now currently doing his Car seat Challange. He needs to sit in the car seat without de-stating or alarming for 90 minutes. He is at 60 minutes right now. So as long as something crazy doesn't happen in the next 30 minutes, he will be OK-ed to go home. When this is over the nurse practitioner will be in to remove the rest of his sutures and then we will need to walk down stairs to the pharmacy to pick up all of his meds. Then we will be FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We are really excited. But it's also so weird and crazy that he will be home in just a few hours. The other funny things is he will have so many different doctors appointments next week it will pretty much be like we are still in the hospital! But at least for the majority of the day we will just be able to be home! All of us!!!
Today, the only thing really holding him back was the car seat issue. We didn't have a car seat for under 5 lbs, and he's only 4.5 lbs. So they signed us up for the car seat program here at Children's which will be nice because it will probably be cheaper than going out and buying one from Target or Babies R us. So the OT got us a new car seat and he is now currently doing his Car seat Challange. He needs to sit in the car seat without de-stating or alarming for 90 minutes. He is at 60 minutes right now. So as long as something crazy doesn't happen in the next 30 minutes, he will be OK-ed to go home. When this is over the nurse practitioner will be in to remove the rest of his sutures and then we will need to walk down stairs to the pharmacy to pick up all of his meds. Then we will be FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We are really excited. But it's also so weird and crazy that he will be home in just a few hours. The other funny things is he will have so many different doctors appointments next week it will pretty much be like we are still in the hospital! But at least for the majority of the day we will just be able to be home! All of us!!!
Wednesday, March 2, 2011
Don't worry, not another emotional spewage!
Today has been a better day. My dear friend Michelle who works here stopped by last night and I vented to her about my nurse/doctor frustrations. And being the dear friend and nurse that she is she gave me some good advice! (I also feel bad telling her I wasn't a fan of nurses right then, sorry Michelle!!!) I think also, I went home last night and was back to my regular schedule of going to bed at 8:30 and only having to wake up 3 times in the night helped me feel better today, even though I still feel like I need a nap.
So Michelle gave me the good advice of writing a note and taping it to Eli's bed explaining how I would like his cares clustered. She also said to make it clear during rounds what I wanted. She told me to ask what they are looking for for him to go home. So I made sure to be here before rounds today and did all of that.
So all of the doctors (which I must add is very disconcerting since they are ALL women who are like my age or a little older, and in the ICU they were mostly men with just a few women) listened with empathetic ears (literally) and agreed that we needed to be good about clustering his cares, and they realized that he needed to be treated like a premie and not a toddler, some times they forget that when they don't work with tiny babies very often, which they don't on this floor. They also were very encouraging about our discharge date, and they actually had some discharge and going home ready paper work for me today. But essentially they want to keep watching him a few more days to make sure he is gaining weight consistently. They also need to remove his sutures either tomorrow or Friday. They are also fortifying the breast milk with extra calories and they want to get up to 30 Kcal before he goes home (he's at 28 today and has been tolerating it well). So tomorrow he will be to 30 and then they will want to watch him 24-48 hours to see if he tolerates that OK. Then they will send him home on that. I haven't decided yet if I will stick with their regiment when I go home, but we will see. I do realize he needs to gain weight because he's so tiny and adding volume to his feeds at this point isn't a great idea (that can increase the risk for NEC), so we will see how I feel in the next few days. I also need to learn how to give him his lovenox injections in the next few days so I can do that 2 times a day when we get home.
So essentially all of this will occur in the next few days. They say the earliest we will get to go home will be Friday, but that's highly unlikely, and I don't know how readily they send people home over the weekend so I am anticipating Monday or Tuesday of next week, seems most realistic. It still seems like a long way off, but at least I have an end in site (hopefully nothing else sets us back).
I was also able to meet one of the cardiologists who works at the Bellevue Children's and she was awesome, so I will probably be making Eli's appointments on Wednesdays with her! I was glad to meet her and get to chat with her for awhile.
The other positive thing today is Hector came and did Eli's blood draw/labs today. I guess he is a miracle worker when it comes to blood draws and it is actually in Eli's chart that he's a "Hector Only" kid meaning Hector is the only one who can get his labs from now on! And today he started right away with a scalp draw, which is the only place on Eli's tiny body that he has veins that haven't be poked already. Which I tried to tell them yesterday but they didn't listen to me. It only took him 2 times (which is nothing compared to the last few days) and he was able to get an entire syringe! I am hoping it was enough for all of the labs he needed to have done (we kind of had a backlog of labs to do) so we won't have to do that again. And he was in and out of there in 10 minutes, and Eli was able to eat and have a good long rest! Plus I really liked him because he listened to me, where the other lab people looked at me like they were so much smarter than me, and he had me help, which maybe some moms (or most moms) would be freaked out by that. But I liked feeling like I was useful and he didn't look down on me for being there or wanting to be right in the thick of it (which I always do).
So we are onto the big push of going home! It's funny because I am sure it will sneak up on us. That is how it always works. You think you have a few days and then one day you walk in and they say make sure you have your car seat tomorrow because your getting discharged!!! At least that's what they did for Caleb. So today has been a better day and Eli has been getting some much needed rest, and hopefully the scales will reflect that in his weigh in today (He's on the Biggest Gainer!!) and he'll have been able to gain crazy amounts of weight today and didn't just burn all of his calories crying!
So keep the prayers coming that we will get through this big push and will be able to get home soon!!!!! We really really really appreciate all of you who have been reading our blog. We love to read your comments and see who has been following. We can see where in the world people have been viewing the blog and it's crazy all of the places that have been represented. And Ryan's favorite thing to tell me is whenever we hit a land mark number of views of the blog and we are overwhelmed by how many views it has gotten. We also love all of the prayers that have been coming our way. We could have never done this without those prayers and support!! Thank you so much to all of you.
So Michelle gave me the good advice of writing a note and taping it to Eli's bed explaining how I would like his cares clustered. She also said to make it clear during rounds what I wanted. She told me to ask what they are looking for for him to go home. So I made sure to be here before rounds today and did all of that.
So all of the doctors (which I must add is very disconcerting since they are ALL women who are like my age or a little older, and in the ICU they were mostly men with just a few women) listened with empathetic ears (literally) and agreed that we needed to be good about clustering his cares, and they realized that he needed to be treated like a premie and not a toddler, some times they forget that when they don't work with tiny babies very often, which they don't on this floor. They also were very encouraging about our discharge date, and they actually had some discharge and going home ready paper work for me today. But essentially they want to keep watching him a few more days to make sure he is gaining weight consistently. They also need to remove his sutures either tomorrow or Friday. They are also fortifying the breast milk with extra calories and they want to get up to 30 Kcal before he goes home (he's at 28 today and has been tolerating it well). So tomorrow he will be to 30 and then they will want to watch him 24-48 hours to see if he tolerates that OK. Then they will send him home on that. I haven't decided yet if I will stick with their regiment when I go home, but we will see. I do realize he needs to gain weight because he's so tiny and adding volume to his feeds at this point isn't a great idea (that can increase the risk for NEC), so we will see how I feel in the next few days. I also need to learn how to give him his lovenox injections in the next few days so I can do that 2 times a day when we get home.
So essentially all of this will occur in the next few days. They say the earliest we will get to go home will be Friday, but that's highly unlikely, and I don't know how readily they send people home over the weekend so I am anticipating Monday or Tuesday of next week, seems most realistic. It still seems like a long way off, but at least I have an end in site (hopefully nothing else sets us back).
I was also able to meet one of the cardiologists who works at the Bellevue Children's and she was awesome, so I will probably be making Eli's appointments on Wednesdays with her! I was glad to meet her and get to chat with her for awhile.
The other positive thing today is Hector came and did Eli's blood draw/labs today. I guess he is a miracle worker when it comes to blood draws and it is actually in Eli's chart that he's a "Hector Only" kid meaning Hector is the only one who can get his labs from now on! And today he started right away with a scalp draw, which is the only place on Eli's tiny body that he has veins that haven't be poked already. Which I tried to tell them yesterday but they didn't listen to me. It only took him 2 times (which is nothing compared to the last few days) and he was able to get an entire syringe! I am hoping it was enough for all of the labs he needed to have done (we kind of had a backlog of labs to do) so we won't have to do that again. And he was in and out of there in 10 minutes, and Eli was able to eat and have a good long rest! Plus I really liked him because he listened to me, where the other lab people looked at me like they were so much smarter than me, and he had me help, which maybe some moms (or most moms) would be freaked out by that. But I liked feeling like I was useful and he didn't look down on me for being there or wanting to be right in the thick of it (which I always do).
So we are onto the big push of going home! It's funny because I am sure it will sneak up on us. That is how it always works. You think you have a few days and then one day you walk in and they say make sure you have your car seat tomorrow because your getting discharged!!! At least that's what they did for Caleb. So today has been a better day and Eli has been getting some much needed rest, and hopefully the scales will reflect that in his weigh in today (He's on the Biggest Gainer!!) and he'll have been able to gain crazy amounts of weight today and didn't just burn all of his calories crying!
So keep the prayers coming that we will get through this big push and will be able to get home soon!!!!! We really really really appreciate all of you who have been reading our blog. We love to read your comments and see who has been following. We can see where in the world people have been viewing the blog and it's crazy all of the places that have been represented. And Ryan's favorite thing to tell me is whenever we hit a land mark number of views of the blog and we are overwhelmed by how many views it has gotten. We also love all of the prayers that have been coming our way. We could have never done this without those prayers and support!! Thank you so much to all of you.
Tuesday, March 1, 2011
FRUSTRATED!!!!!
Sorry I have not been able to update the blog the past few days. Life has been busy with us! Yesterday when I got here Eli was back on the list to move to the floor. Unfortunately, there wasn't a room/nurse available all day until shift change at 7:00 PM. So we were just waiting around all day. Well not really we had to do labs and a bunch of other stuff before he could go. So at 7:00 we loaded him all up and wheeled his little bed over to the floor. I decided, since it was so late by the time we got moved, unpacked and reoriented to just spend the night.
It was a pretty rough night for me. Eli was on a completely different schedule than my pump schedule and was also on a completely different schedule hour to hour. I totally miss the rigidity of Evergreen and their care system. They did all cares, feedings included, every three hours and it never took longer than an hour. I truly feel that some of these nurses have no idea what to do for a premie! (Sorry to my nurse friends and family, I am just so frustrated right now). One person is really strict with his cares and do them every 3 hours like clock work, or get upset if he is not ready to eat after 3 hours and the next is really lax and will go 4-5 hours without doing a care. Plus here they are on all sorts of different schedules for things so he is essentially getting woken up hourly. Or they will do something on him (like a blood draw) that keeps him awake for almost an hour and then they expect him to eat again 20 minutes later. It is really annoying the heck out of me. Do they really think that a premie baby is going to be able to be awake for an hour and half getting poked and prodded and then be able to drink his weight in milk??? I don't think so. AHHHH I am so frustrated.
As you can probably tell, my nerves are SHOT! I am at my wits end right now and I have no idea when we will be able to come home. They keep talking about him needing to up his calories so they keep fortifying the milk with extra calories, but then he pukes it all up. I have mentioned it to his nurses and doctors that I feel that it's the fortifier that is making him throw up because it only happens when he drinks that, not when he nurses or drinks plain breast milk, and they just keep upping the amount so he gets more calories!! And he keeps throwing up! Aren't they supposed to listen to the moms????
Sorry for the huge rant today! Hopefully tomorrow I won't be so tired and will be in a better mood. Please just pray for our family to keep our tempers in check, we have been getting pretty snappy at each other and this life is really wearing on both of us! (Expedia people, I am sure Ryan is counting down the days he can come back to work!) Ryan's tired of being the stay at home dad, and I am tired of NOT being the stay at home mom and getting everything done at my house how I like it done! I feel like all of my time home with both of my kids has been spent in a hospital and not at home enjoying my children. Please also just pray that Eli miraculously starts eating what they want him to eat, which I have no idea what that is, so he can go home soon. I feel strongly that feeding wise, if he went home tomorrow he would do great. He had two successful nursing times today and he really seemed to click on that. Plus he has been taking a bottle like a champ. I just really feel he needs to be left alone! And he just needs time with his momma to hang out and be free to do what he wants to do.
Also please pray that they can get the dose of his blood thinner figured out. When they did the lab yesterday the amount seemed high, so they wanted to test it again today to make sure it was still the right amount. Unfortunately, he has really small veins and has been poked a ton so they haven't been very successful with this draw. Please pray that tomorrow we can get it quickly and easily without too much stress to him and that the levels come back within a theraputic range.
Again sorry for the huge emotional spewage! But I guess I am always good for that. I know that we are making baby steps each day, I am just so ready to be home. I have now been in the hospital 22 days!
It was a pretty rough night for me. Eli was on a completely different schedule than my pump schedule and was also on a completely different schedule hour to hour. I totally miss the rigidity of Evergreen and their care system. They did all cares, feedings included, every three hours and it never took longer than an hour. I truly feel that some of these nurses have no idea what to do for a premie! (Sorry to my nurse friends and family, I am just so frustrated right now). One person is really strict with his cares and do them every 3 hours like clock work, or get upset if he is not ready to eat after 3 hours and the next is really lax and will go 4-5 hours without doing a care. Plus here they are on all sorts of different schedules for things so he is essentially getting woken up hourly. Or they will do something on him (like a blood draw) that keeps him awake for almost an hour and then they expect him to eat again 20 minutes later. It is really annoying the heck out of me. Do they really think that a premie baby is going to be able to be awake for an hour and half getting poked and prodded and then be able to drink his weight in milk??? I don't think so. AHHHH I am so frustrated.
As you can probably tell, my nerves are SHOT! I am at my wits end right now and I have no idea when we will be able to come home. They keep talking about him needing to up his calories so they keep fortifying the milk with extra calories, but then he pukes it all up. I have mentioned it to his nurses and doctors that I feel that it's the fortifier that is making him throw up because it only happens when he drinks that, not when he nurses or drinks plain breast milk, and they just keep upping the amount so he gets more calories!! And he keeps throwing up! Aren't they supposed to listen to the moms????
Sorry for the huge rant today! Hopefully tomorrow I won't be so tired and will be in a better mood. Please just pray for our family to keep our tempers in check, we have been getting pretty snappy at each other and this life is really wearing on both of us! (Expedia people, I am sure Ryan is counting down the days he can come back to work!) Ryan's tired of being the stay at home dad, and I am tired of NOT being the stay at home mom and getting everything done at my house how I like it done! I feel like all of my time home with both of my kids has been spent in a hospital and not at home enjoying my children. Please also just pray that Eli miraculously starts eating what they want him to eat, which I have no idea what that is, so he can go home soon. I feel strongly that feeding wise, if he went home tomorrow he would do great. He had two successful nursing times today and he really seemed to click on that. Plus he has been taking a bottle like a champ. I just really feel he needs to be left alone! And he just needs time with his momma to hang out and be free to do what he wants to do.
Also please pray that they can get the dose of his blood thinner figured out. When they did the lab yesterday the amount seemed high, so they wanted to test it again today to make sure it was still the right amount. Unfortunately, he has really small veins and has been poked a ton so they haven't been very successful with this draw. Please pray that tomorrow we can get it quickly and easily without too much stress to him and that the levels come back within a theraputic range.
Again sorry for the huge emotional spewage! But I guess I am always good for that. I know that we are making baby steps each day, I am just so ready to be home. I have now been in the hospital 22 days!
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