Well, we just got home from the neuro appt and they didn't do anything but glance at Ethans back and measure his head. They said he is still to small and his breathing is too labored for them to sedate him to do the mri so we are going back for the mri in 5 weeks (the week after Christmas :( ) and then the week after that we will go back again to hear the results and schedule the surgery. They said we will probably do surgery in a few months and when we do do the surgery he will have to be in the nicu again for 3-5days for recovery. I was fine the whole time till they said he would be there 3-5. I was told at first it would be out-patient, it breaks my heart to know my precious baby is going to have to go back in the hospital to stay without me. I asked if there was a way he could be in a room where I could stay with him and apparently that is not a option..but I am not going to think about it anymore till closer to time. No need in me getting all torn apart now over something that isnt going to happen for a few months.
When we first got there the PA asked if we wanted to do the surgery next week or the week after that and I almost lost it. No one mentioned doing it that soon before. But when I asked if his breathing was a problem she went and got the surgeon and thats when they decided the plan we now have in place.
Thank you all for the support and prayers! Looks like Im going to be a nervous wreck once again in a few weeks...Ill try to be strong though and just give it all to God! I know he wont steer us wrong!
Tuesday, November 24, 2009
Friday, November 20, 2009
Long day! Lots of updates!
So to start the morning off Ethan and I got ready and went to pay a bill. While at the bill place a lady looks at us and says "Oh whats wrong with him?" Well...normally I would say it's just a monitor to make sure he's ok. But I don't know what it was that pissed me off about her, I think it was just the way she asked but my response was "nothings wrong with him.whats wrong with you?" She looked at me funny then walked away.
We then went to the ped appt and Ethan was everything but thrilled about it. He is now 9lbs 3oz and 23in long! They said he is growing excellent! He now has trush so he is on meds for it and it will take a few weeks to clear up. I cant believe this poor baby is sick with yet again something else. It seems like everytime I turn around the poor kid has something going on. According to my dad thats just how it is when you have a baby (that doesnt make me feel any better though.) Otherwise they said what they thought was a viral infection in his eye from the cold..isnt a viral infection at all. It is a clogged tear duct. They showed me how to massage it and they said if its still a problem at 9 months he'll be sent to a eye dr. Then if it's a prob at 12months he will have surgery to unclog it, though the dr said she is certain it will clear itself up soon. The dr also looked at Ethan's legs and said she isn't sure why the nicu said he has low tone in them, she said he is excellent. I asked about the monitor and the dr told me that we will take him off of it at his next appt which is dec 21st. She said she wanted him to be on it for the full 2 months just to be sure that everything was perfect then we are done WHOOO HOOO!!!! I HATE that monitor. I love the purpose it serves and I am sure that once it's gone I'll worry to death, but as of right now I hate it :) Im pretty sure that is everything at the peds office. If I think of something else Ill add it later.
Now onto walmart.....AAARRRRGGGHHH!!!!! I went to walmart to fill the prescription. I dropped it off and explained that I dont have Ethans ins card yet but I gave them my husbands. They said " Oh thats no problem at all, itll be ready in 30min" I walk off and start to wonder through the store with Ethan in the stroller. Well lady #1 walks up to me and says "oh he's so little, I cant believe your taking him out already" I responded "he had a dr appt and a prescription to be filled thats why were out" she said "oh" and walked off. At this point I was already a little aggravated but brushed it off.On we went to the christmas stuff and Ethan decides hes gonna have a melt down. He began screaming so I was trying to get him out to hold him but I couldnt get him out quick enough so he got super mad and loud and his alarm went off. At this point everyone in this area was staring at me giving me dirty looks but I STILL brushed it of and just calmed him down.Once he was calm I walked over to the pharmacy to see if the meds were ready ( i gave it 45min) and they said to give them 10 more min. So I walked to the books and then walked back. At this point a hr has passed since I dropped off the script and they told me it would only be 30 min. I asked the lady at the counter if it was ready and she said "oh theres a problem with the insurance go to the drop off window and theyll help you" UGH!!! Ok so I go to drop off and they ask me for Ethans card, I explain again that I dont have Ethans card yet that i told them that earlier and they said it would be no problem. So I had to show them Greg's card again and they called the ins company...Ins said Ethan isnt on the policy!!!!! I have had him added 4x's now..youve got to be kidding me. So the lady at the counter was trying to talk to me and the ins company was on the phone and Ethan decides he wants to scream again...setting off the monitor yet again..and the lady in line behind me says "My God, whats wrong with him" I had had enough! I turned around (baby still screaming monitor still alarming" And responded "Theres not a damn thing wrong with him what the hell is wrong with you..I suggest you mind your own damn business and get the hell out of my way" apparently I embarrassed her bc she walked away quickly.I then calmed Ethan and resumed trying to figure out the ins thing. It ended up that I had to just pay for the meds out of pocket and if I can prove he is added to ins I can get a refund. I have called ins who told me gregs hr dept has to call them so I called her and she got mad ans said she has but she will call again and then call me back. I still haven't herd anything..so once I finish this post I am going to call them back again and see whats going on..Ops gregs hr just called!! She said he is added and everything is taken care of, that if I go back to the pharmacy they said they will refund me.So I guess Ill be doing that here soon.
Then I got home at 145 and i had a at home appt with the early intervention nurse at 2. The appt went very well!! Ethan was very upset (I think he had just had enough for the day too) but Kathy (our nurse) said Ethan has empressed her very much.She said he is scoring between 1-3months on all of his evaluations (hes 1 month old today!) and she said his weight baring and legs movement is amazing.She is concerned a little with the way his left foot is still turned in and that he doesnt seem to have as much strength in his ankles as he does in the rest of his legs so we are going to have physical therapy come out sometime before christmas (i thought they were coming today but she said that the lady that is assigned to us went on vacation and wont be back till the 2nd week in dec) anyways we set 6 goals for Ethan to achieve in the next 5 months and Im sure my big boy will meet them all!!
Well I think thats about it..Im going to eat something real quick then go get my refund!
We then went to the ped appt and Ethan was everything but thrilled about it. He is now 9lbs 3oz and 23in long! They said he is growing excellent! He now has trush so he is on meds for it and it will take a few weeks to clear up. I cant believe this poor baby is sick with yet again something else. It seems like everytime I turn around the poor kid has something going on. According to my dad thats just how it is when you have a baby (that doesnt make me feel any better though.) Otherwise they said what they thought was a viral infection in his eye from the cold..isnt a viral infection at all. It is a clogged tear duct. They showed me how to massage it and they said if its still a problem at 9 months he'll be sent to a eye dr. Then if it's a prob at 12months he will have surgery to unclog it, though the dr said she is certain it will clear itself up soon. The dr also looked at Ethan's legs and said she isn't sure why the nicu said he has low tone in them, she said he is excellent. I asked about the monitor and the dr told me that we will take him off of it at his next appt which is dec 21st. She said she wanted him to be on it for the full 2 months just to be sure that everything was perfect then we are done WHOOO HOOO!!!! I HATE that monitor. I love the purpose it serves and I am sure that once it's gone I'll worry to death, but as of right now I hate it :) Im pretty sure that is everything at the peds office. If I think of something else Ill add it later.
Now onto walmart.....AAARRRRGGGHHH!!!!! I went to walmart to fill the prescription. I dropped it off and explained that I dont have Ethans ins card yet but I gave them my husbands. They said " Oh thats no problem at all, itll be ready in 30min" I walk off and start to wonder through the store with Ethan in the stroller. Well lady #1 walks up to me and says "oh he's so little, I cant believe your taking him out already" I responded "he had a dr appt and a prescription to be filled thats why were out" she said "oh" and walked off. At this point I was already a little aggravated but brushed it off.On we went to the christmas stuff and Ethan decides hes gonna have a melt down. He began screaming so I was trying to get him out to hold him but I couldnt get him out quick enough so he got super mad and loud and his alarm went off. At this point everyone in this area was staring at me giving me dirty looks but I STILL brushed it of and just calmed him down.Once he was calm I walked over to the pharmacy to see if the meds were ready ( i gave it 45min) and they said to give them 10 more min. So I walked to the books and then walked back. At this point a hr has passed since I dropped off the script and they told me it would only be 30 min. I asked the lady at the counter if it was ready and she said "oh theres a problem with the insurance go to the drop off window and theyll help you" UGH!!! Ok so I go to drop off and they ask me for Ethans card, I explain again that I dont have Ethans card yet that i told them that earlier and they said it would be no problem. So I had to show them Greg's card again and they called the ins company...Ins said Ethan isnt on the policy!!!!! I have had him added 4x's now..youve got to be kidding me. So the lady at the counter was trying to talk to me and the ins company was on the phone and Ethan decides he wants to scream again...setting off the monitor yet again..and the lady in line behind me says "My God, whats wrong with him" I had had enough! I turned around (baby still screaming monitor still alarming" And responded "Theres not a damn thing wrong with him what the hell is wrong with you..I suggest you mind your own damn business and get the hell out of my way" apparently I embarrassed her bc she walked away quickly.I then calmed Ethan and resumed trying to figure out the ins thing. It ended up that I had to just pay for the meds out of pocket and if I can prove he is added to ins I can get a refund. I have called ins who told me gregs hr dept has to call them so I called her and she got mad ans said she has but she will call again and then call me back. I still haven't herd anything..so once I finish this post I am going to call them back again and see whats going on..Ops gregs hr just called!! She said he is added and everything is taken care of, that if I go back to the pharmacy they said they will refund me.So I guess Ill be doing that here soon.
Then I got home at 145 and i had a at home appt with the early intervention nurse at 2. The appt went very well!! Ethan was very upset (I think he had just had enough for the day too) but Kathy (our nurse) said Ethan has empressed her very much.She said he is scoring between 1-3months on all of his evaluations (hes 1 month old today!) and she said his weight baring and legs movement is amazing.She is concerned a little with the way his left foot is still turned in and that he doesnt seem to have as much strength in his ankles as he does in the rest of his legs so we are going to have physical therapy come out sometime before christmas (i thought they were coming today but she said that the lady that is assigned to us went on vacation and wont be back till the 2nd week in dec) anyways we set 6 goals for Ethan to achieve in the next 5 months and Im sure my big boy will meet them all!!
Well I think thats about it..Im going to eat something real quick then go get my refund!
Monday, November 16, 2009
Yay Formula!
I gave up on breast milk, I have been having trouble getting enough milk out when pumping and Ive been having to substitute with formula..but last night I was done with it completely! I've been debating on weather or not to go completely onto formula but Greg kept telling me to hang in there itll get better. Well it only got worse. I ended up getting mastisis (which HURTS) and it freaked me out bc I was getting blood with the milk when I pumped. As I said before Ethan has been sick and he has also been very gasy and fussy. After switching to the formula completely for only one day he is 100x's better! Greg and i both agreed it is for the best. Im a little disappointed bc I know how good breast milk is supposed to be for the baby and bc it is free...but if it's only gonna make him sick and I cant produce enough..its so not worth it.
So today me and Ethan were home alone and I had to go potty. I put Ethan in his swing and went to the bathroom. When I came back he had bent himself over and put his head on the tray to go to sleep! Thats my baby lol! I took a pic that Ill attach! Greg said it makes me look like a horrible parent like its hurting him or something..but I sat him up and he went back in the same position and laughed then went to sleep again! Apparently he liked it that way!
Well Im not gonna say too much tonight. Ethan is starting to get fussy so I think hes ready to eat..and Im very tired so I will feed him then go to bed!! Ill be back fri with a update from the ped!
So today me and Ethan were home alone and I had to go potty. I put Ethan in his swing and went to the bathroom. When I came back he had bent himself over and put his head on the tray to go to sleep! Thats my baby lol! I took a pic that Ill attach! Greg said it makes me look like a horrible parent like its hurting him or something..but I sat him up and he went back in the same position and laughed then went to sleep again! Apparently he liked it that way!
Well Im not gonna say too much tonight. Ethan is starting to get fussy so I think hes ready to eat..and Im very tired so I will feed him then go to bed!! Ill be back fri with a update from the ped!
Thursday, November 12, 2009
Wanted to share!
I've shared a few songs with my friends and family on facebook and a few others..but for some reason it keeps running through my mind that I haven't shared them enough yet? Can't really explain the feeling, but it's there so i will share some more! And this way I will have them saved here so one day Ethan can look back and hear them! I hope i do this right..Im kinda new at the whole embedding video thing!
The first song is He's my son by Mark Shultz. This song is so perfect and amazing. It brings me tears everytime I hear it sometimes happy tears and sometimes sad. Either way this song touches my really deeply.
The next song is one that I heard the day i found out about Ethan's diagnosis of Spina Bifida. Since hearing this song that day I have sang this song to him daily and he seems to really like it! I think this song also fits so perfectly! Apparently I can only give the link on this one b/c the embedding was disabled but it's You're Gonna Be by Reba
http://www.youtube.com/watch?v=_JwVf0AV8sg
This song isn't so much a song to Ethan but more so a song that really describes how I felt while going through pregnancy with Ethan and his stay in the NICU. It is also a song of encouragment and a reminder that God is always with me. A dear friend of mine Monica told me of this song when I was struggling with having Ethan in the NICU! This song is If You Want Me To by Ginny Owens
This blog is a place for us to share about our family...in our family is a angel baby named Alex, we have a song for Alex and I feel strongly that I need to place it here as well.The song is Who You'd Be Today by Kenny Chesney
The first song is He's my son by Mark Shultz. This song is so perfect and amazing. It brings me tears everytime I hear it sometimes happy tears and sometimes sad. Either way this song touches my really deeply.
The next song is one that I heard the day i found out about Ethan's diagnosis of Spina Bifida. Since hearing this song that day I have sang this song to him daily and he seems to really like it! I think this song also fits so perfectly! Apparently I can only give the link on this one b/c the embedding was disabled but it's You're Gonna Be by Reba
http://www.youtube.com/watch?v=_JwVf0AV8sg
This song isn't so much a song to Ethan but more so a song that really describes how I felt while going through pregnancy with Ethan and his stay in the NICU. It is also a song of encouragment and a reminder that God is always with me. A dear friend of mine Monica told me of this song when I was struggling with having Ethan in the NICU! This song is If You Want Me To by Ginny Owens
This blog is a place for us to share about our family...in our family is a angel baby named Alex, we have a song for Alex and I feel strongly that I need to place it here as well.The song is Who You'd Be Today by Kenny Chesney
Monday, November 9, 2009
The pictures I promised!!!
In his bassinet
In his swing
Holding his own bottle when Aunt Lee was feeding him.
Aunt Lee and Ethan taking a nap together!
On the way to his first Ped appt
In his bouncy seat.
Bouncy seat again.
Aunt Lee's first time holding him..He was telling her a BIG story according to Mimi Lisa lol
His very last time in the nicu crib!
Sick baby :(
Things have been going pretty well, exhausting but well! Ethan has been doing a little better each night we are now able to sleep 2-3hours at a time until he wakes up hungry. My sister stayed with us last night to watch him for us so we could get a little rest. I got to sleep from 11p-4a! Then she couldnt stay awake anymore lol. No she sees why Im staying so tired, I cant just say "ok I cant stay awake anymore" and go to sleep! But anyways, she is amazing with Ethan! Im not going to lie I was a little worried at first bc I know she doesnt have a lot of patience for children but it is completely different with him and her! She adores him, and he LOVES his Aunt Lee Lee!
I had to take him to the ped again today..he is a sick baby :( he started yesterday with the crusty stuff all over his right eye then I noticed a greenish yellow gewy discharge. Then he had a high temp and he has been sneezing. He also was VERY inconsolable. We literally could not put him down at all without him screaming like we were killing him. The dr said that he has a cold with a viral infection in his eye. They said most babies his age and size would have to be re-admitted to the hospital but he is tolerating it very well! They gave me a prescription for eye drops but told me not to bother to fill it unless his eye gets puffy and very red. Otherwise I am to just keep cleaning it with warm water like Ive been doing. He seems to be much better. He has slept a good bit today (which means Im in for a longggg night!) but at least he seems more comfortable! Thats what really matters!
Tomm I have a appt with a lactation consultant. I have been having some issues with getting enough milk since fri and though it has gotten better I think it is a good idea to bight the bullet and go ahead and see a consultant before I run into a bigger problem and have to give him formula (which I REALLY dont want to do) I have to be honest I dont really wanna go to this appt but I know i should so I will.
And now for pics!! We have been trying new things at home..he really likes the swing Mr.and Mrs. Trinidad gave him! And he LOVES the bouncy seat Paw Paw Mike and Mimi Lisa got him!! He is also doing a lot better with sleeping in his bassinet. Oh and he likes to try and hold his own bottle lol I think I have a pic of that I can put in here too!! OK for some reason the site is being silly right now and wont let me upload pics..so I will have to try again :( sorry
I had to take him to the ped again today..he is a sick baby :( he started yesterday with the crusty stuff all over his right eye then I noticed a greenish yellow gewy discharge. Then he had a high temp and he has been sneezing. He also was VERY inconsolable. We literally could not put him down at all without him screaming like we were killing him. The dr said that he has a cold with a viral infection in his eye. They said most babies his age and size would have to be re-admitted to the hospital but he is tolerating it very well! They gave me a prescription for eye drops but told me not to bother to fill it unless his eye gets puffy and very red. Otherwise I am to just keep cleaning it with warm water like Ive been doing. He seems to be much better. He has slept a good bit today (which means Im in for a longggg night!) but at least he seems more comfortable! Thats what really matters!
Tomm I have a appt with a lactation consultant. I have been having some issues with getting enough milk since fri and though it has gotten better I think it is a good idea to bight the bullet and go ahead and see a consultant before I run into a bigger problem and have to give him formula (which I REALLY dont want to do) I have to be honest I dont really wanna go to this appt but I know i should so I will.
And now for pics!! We have been trying new things at home..he really likes the swing Mr.and Mrs. Trinidad gave him! And he LOVES the bouncy seat Paw Paw Mike and Mimi Lisa got him!! He is also doing a lot better with sleeping in his bassinet. Oh and he likes to try and hold his own bottle lol I think I have a pic of that I can put in here too!! OK for some reason the site is being silly right now and wont let me upload pics..so I will have to try again :( sorry
Thursday, November 5, 2009
Ethan's home!
My baby boy is home! He came home tue 11/03 and it has been wonderful! My hands have been full but it is well worth it! The first night was VERY hard..Ethan did sleep hardly at all so neither did I, last night was a little better. My sister came over today to watch him for me so I could get a little rest (ended up with 1 1/2hrs) he got pretty fussy with her yet when I came in the room he was silent lol I guess he knows his momma hunh!
Greg and I gave Ethan his first bath at home last night and it went well. At first he was a little upset but soon he got over it! He was a very happy baby after it was all done! And best of all he went right to sleep!
He had his first pediatrician appt yesterday as well. Things went well. At first the Dr and I were on 2 diff pgs with the whole vaccine plan but we soon got on the same one (mine that it!) Otherwise we didnt really learn much of anything, he's 7lbs 8oz and eyes,ears,nose,and throat looked good.I dont think my Dr knows ANYTHING about SB but honestly I dont think thats really a bad thing. I havent decided fully yet if it is or not but time will tell. The only thing that bothered me was the Dr and asst were surprised that he is on latex precautions. I told them that it was common with SB and they just said oh.
Otherwise things are going well. Just hanging around the house with the baby!
Greg and I gave Ethan his first bath at home last night and it went well. At first he was a little upset but soon he got over it! He was a very happy baby after it was all done! And best of all he went right to sleep!
He had his first pediatrician appt yesterday as well. Things went well. At first the Dr and I were on 2 diff pgs with the whole vaccine plan but we soon got on the same one (mine that it!) Otherwise we didnt really learn much of anything, he's 7lbs 8oz and eyes,ears,nose,and throat looked good.I dont think my Dr knows ANYTHING about SB but honestly I dont think thats really a bad thing. I havent decided fully yet if it is or not but time will tell. The only thing that bothered me was the Dr and asst were surprised that he is on latex precautions. I told them that it was common with SB and they just said oh.
Otherwise things are going well. Just hanging around the house with the baby!
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