Saturday, October 31, 2009

Oh so busy!

We have had so much going on the past few days! Lets start with wed night (I cant remember when I last posted and honestly Im too lazy to go back and look right now!) Greg and I met with Stacy from Early Intervention (EI) basically she just explained the program and told us Ethan automatically qualifies and that he will have his own nurse who will come to the house once a week to check on him and work with him,her name is Kathy.(Im pretty sure I did post info on this last time so Im going to stop here...but if I didnt Ill come back and do it later!)

Thur...I got up super early and went to the social security office to apply for SSI for Ethan, what a quest that was! I was told to do it asap then I get there and had to wait forever (even though I had a appt) and might I add, I was VERY uncomfortable there. I hate to be ugly but people were coughing and wheezing and not covering their mouths, and then to top it off the lady beside me (who couldnt grasp the concept that I was leaning away from her bc I didnt want her touching me) decideds to tell me and another lady she has hiv and hepatitis c and thats why she is there applying. Now I know that I cant catch anything just sitting beside her, but I caught myself trying to look at her arms and anything else that may touch me for lesions, and I kept thinking, "oh no, what if I get something, Ethan will get it" crazy I know, but Im being honest here! Anywho, I finally got called to the little window only to be told I cant apply just yet bc they still havent assigned him a ss#. They said they rush ordered it and that they will call me on tue to allow me to do the interview over the phone.They also had me go ahead and sign a lot of papers so I didnt have to come back (very happy about that!) So I leave and go on my mariily way only to get a phone call with them telling me they had me sign all the wrong papers (grrr) but they said they would just mail me what I needed to sign and I can mail it back (yay!) The rest of thur wasn't as eventful, basically i went and got new tires on the car (it was a big must!) and went and sat with Ethan a few hours.

Fri....WOW FRI! Greg and I got to the hospital between 830-9a sometime..First we met with physical therapist (PT) who showed us how to exercise Ethans ankles knees and hips to help him gain even more strength then she told us that she was pretty sure after discharge we will be coming up to the hospital for therapy once a month..I asked her if we needed to come up there or if we were going to be doing it through EI and she said she would have to get back to me. Then we met with the occupational therapist (OT) basically she just talked to us and told us about her evaluations of him.She said she is very pleased with his movement and control and that she thinks he will be right on time with crawling and walking. She said her only concern is that his muscle tone is a little low.But she said if we do the exercises with him that PT showed us it will help build that up! Next, we met with some other lady who showed us how to properly put this belt they made on Ethan for when he is in his carseat or a swing or bouncy (basically anything/where that will put pressure on the sac on his back) The belt is just foam with a hole cut out to fit the sac and velcroe to hold it together.It's not hard to do at all when Ethan wants to cooperate! Then...we meet with a specialist who taught Greg and I how to operate and trouble shoot the apnea machine. They have decided that Ethan is going to be on this machine 24/7 only with the exception of his baths. Once again this isnt really hard as long as he cooperates..we have to choices on the way this is on him, one is a belt that gos all the way around his chest and fits right under his pits, the other is leads just like you see with a ekg. He seems to like the belt better, which is fine bc we dont have to worry about them falling off or getting moved like we would with the leads. I do have some leads so that i can put them on him in certain situations (like getting pictures done) that way you wont see the big bulge under his shirt! After this meeting we meet with EI again and met nurse Kathy! She was very nice and seemed VERY knowledgable. We filled out paperwork and talked about our concerns for him as of now and disucssed a little of a plan (basically we have no plan right now except for getting him "transitioned from the nicu to home") After that meeting it was FINALLY 130p and we took a break! We went and got lunch and came home to pack our overnight bag then headed right back to the hospital! We got back to the hospital (this is probably a good time to mention we got to room in with Ethan last night, the nicu requires this at least 2nights before discharge to see how you "handle" being the caregiver.) anyways we got back to the hospital and did the infant cpr training...we watched the video 3x's before they remembered they had us in the back doing it lol so we are no pros at it! Then we demonstrated! Then we did the purple crying class. Then finally they put us in our room and brought us our son!! All the stuff of the day was finally over! We sat there and cuddled with Ethan and played with him and stared at him lol (im sure he thoguht we were crazy, espically me! I couldnt stop holding him and staring at him) The first few feedings and changes I did, and I feld him as he slept..then finally I decided I should share and I let Greg hold him and feed and change him! Then Greg held him as he slept, when we finally put him in his crib (around 4am) he was not a happy boy! He wanted to be held (ught oh!! What have we done!) So what did we do? We held him! At 10a the nurse came back to the room and rot him and his stuff and took him back to the nicu :( and Greg and I were to head home (they require you to go home and "sleep" its another part of their who discharge plan thing) so we snuck back into the nicu to say bye to him again..I think today was the hardest goodbye thus far, mainly bc I got to be with him for so long and I finally felt so connected. Ive felt connected since day one and I have loved him with all of me since I found out I was pregnant, but there was something about last night...I felt this joy and overwhelming love that I have never felt..I mean I dont know how to describe it, I love Greg with all my heart and I could have never imagined loving anyone more than that..but love for him is SO DEEP! Something I have truly never felt before!

We got home and I got a phone call! Ethan is being released on Tue at 10am! I cannot wait! The only sad thing is that Greg has to work. He is going to try to get off, but were pretty sure his boss isnt going to let him :( If he doesnt I think Im going to have my sister go with me. That way she can drive and I can sit with Ethan. I dont want to be ugly and I dont want to hurt peoples feelings, but I dont really want anyone else going to bring him home. I feel like this is such a special time, I dont want to share it with anyone else (except Greg of course) I know my sister will stand back and just let me have my time and i know that isnt how it will be if I allow others there. So my decision is made! No one is allowed to go!

Now, Greg has gone off for a little while and I am sitting at home.I have cleaned up in the house a little (theres alot Im leaving Greg to do, I got worried on fri bc my incision began to bleed,and my dr told me Im over doing it so I think I may actually slow down a little) But Im waiting on the mail to run! (yes Im still waiting on the blessed mail at 422pm on a sat! crazy isnt it!) But Im still waiting on my short term disability check. I pray it gets here today or mon at latest...I am broke!! I have enough for gas and a few groceries, but I really want to go ahead and stock up on groceries so I dont have to go back for awhile once I get Ethan home. And I also have some bills to pay and other such things. Well, I think I have said it all! Ill be back to update after Ethan comes home!!! I cant wait to share pictures! And tell how it goes!

Oh before I go a few last things..Ethan will be circumsized between tomm and tue :( poor baby I feel bad but it is something Greg and I both feel is in his best interest. And I took pics of Ethan today for his first halloween!!! He wasnt as happy about it as I had hoped but they are picutres none the less!!

Tuesday, October 27, 2009

Were getting closer!

Let's start with this morning! I woke up and called to check on Ethan! I was told that Ethan was taking complete bottles at every feeding all night, and that his oxygen was taken down from 1.25 to .125! They told me they were going to try to take him off his oxygen completely and see how that works. And that they were going to talk to the drs and see if Ethan can eat ad litem (which apparently means he can eat as much as he wants whenever he wants)

When I called back late on I was told the Drs approved Ethan on the feedings and that they had tried him off the oxygen but he had to go back on it. Apparently he was fine off of it on his tummy but when he was on his back or sides he was having a little trouble. I was also told Ethan weighed in at 6lbs 11oz which is 1 oz less than yesterday but i was told that was fine.

When I got up there to see Ethan tonight, no one told me they moved Ethan so I got VERY upset when I went to his bedside ans he wasnt there, I thought something was seriously wrong.Greg asked another nurse and we found out that they had actually moved Ethan! He was moved from the critical care unit over to the special care wing. The special care wing is where they send babies right before they are sent home! When I walked over there i saw Ethan right away! A nurse was sitting there holding him! And she handed him right over and I started to feed him (he took a whole 2oz bottle in less than 10 min!) The nurse practioner came down to talk to Greg and I about his echocardiagram and told us that Ethan does NOT have a heart murmur or arrythmia! He does have another conition (i cannt think of the name right now) but it is where a valve outside the heart didnt close the way it should have. She said that it should heal on its own within a month but they are going to get a pediatric cardiologist to come check it out just to be safe. She said the cardiologist will check him either tomm on wed. I wasnt able to stay but about 1 1/2hrs but at least Ethan was awake almost the whole time, I rocked him to sleep about 10min before time for me to leave and then I put him in his bed.

I am going back to see him tomm evening and I already cant wait! I am so glad that he is rocoverning and moving along so well. God is carrying him and Greg and I in his arms right now, protecting us. I am continueing to pray that God will see us through this and give Ethan tons of strength,good health, and happiness! I know that God will take good care of us!

Sunday, October 25, 2009

If it's not this, it's that!

I went and saw Ethan today! I got to hold him for almost 4 1/2 hrs and I got to feed him 2x and change him a few times! It was so nice just to sit there and hold my baby! He is doing pretty well, he is done with jaundice so no more lights! I cant remember if I told everyone in my last post or not but he also doesn't have a iv anymore. He was taken off of the high flow canula and put on a regular one as a "trial" to see if he could handle it, and he has! Very well! They started him on 100% oxygen and he has already been reduced 2x and before I left they were talking about reducing it again! He is also getting better and better at taking a bottle, it is still a work in progress but at least he is progressing. He is now weighing 6lb 12oz which his drs seem to be happy with, he is averaging 2oz of gain a day. Now to the bad news...he is having a echocaridagram in the morning because they think he has a heart murmur. They are telling me that it is not a big deal that most children out grow them but I can't help but be worried. They also told me that they are going to look at the heart really well and try to figure out why his pulse drops every once in awhile. They think he might have arrhythmia. As I said iun my title, if it's not this, it's that. That is exactly how I feel right now. I would have never imagined there would be so many problems. I thought all we had to worry about was the SB stuff, the sac, hydro,voiding,movement...yet all those things are just fine and he has so many other problems. I also feel like as soon as he has 1 or 2 very good improvments, he hsa something else happen. I just continue to pray that things will balance out and he will be able to come home the end of the week still.

I have been having a hard time with all the things going on. I try to be strong and not say too much about it, but it is really starting to get to me.I just want my baby boy healthy and at home with me. The nicu doesnt bother me much at all while I am there, but after I leave I am constantly hearing the alarms and buzzers going of and I catch myself looking up to my right (where Ethan's monitor screens are) to see whats going on. Greg told me that I am absoutly crazy..and Im starting to agree with him :)

Greg seems to be handling things well. He doesnt like going to the nicu at all, he loves seeing his son but he hates to hear the alarms and all the crying. He is convenced that the babies are crying in pain and that they are all many times as i ave told him they are just crying bc thats what babies do and they are not dieing, they are there getting better, he still feels the same. I know he will be much more at ease as well once Ethan is at home with us!

Friday, October 23, 2009

News and improvements!

The neuro finally came wed night! He told me that Ethan was ok to go home (as far as the SB goes) ans that we should treat him like a noraml baby (meaning we dont have to be super cautious about his sac he can lay on it and have clothes on forth) He said as of now they are still going to say that it is myelomengecele but it might actually only be meningecele! They will let us know when we go to our follow up in 4 weeks! At the follow up we will do ultrasound,ct scan, and mri that way they can get a better idea of whats going on and when they should do surgery (we were told it will now be 1-2 months before they do it bc he is not at risk of furthur damage or of infection! That way he can get bigger and grow more strength)

Ethan's breathing has been slowly progressing. We have gone from a vent,to a cpap, and now just the nose canula! He was able to have the oxygen intake reduced a few times now but this morning had to go back up a notch :( I was told that last night they had to move his IV and he got VERY upset and began to have more trouble breathing. As of now i am being told they think he will be able to go home next weekend (probably) he has to be breathing on his own completely for 3days before he can be released.

He was put under lights this morning because of jaundice. They mentioned the jaundice to me before but said it wasn't that bad. Last night he began to turn more yellowish/orange so they did blood work and sure enough he has it. They are saying the lights will last 2-3 days and then it should be all better.

He had a little trouble with his heartbeat yesterday 2x both times while he was sleeping his hb dropped then came back up (on its own) the first time it happened I was told not to worry about it that it happenes sometimes with no reason to little newborns. The 2nd time it happened I was told they aren't sure why a 2day old is all of a sudden doing this and they are watching it VERY cloesly, thankfully it hasn't happened again!

Feeding!!! My strong little man, is finally getting milk! We are working our way up every other feeding by 2 cc's and each time we go up 2 we get to take away .7 from his IV! As long as he keeps tolerating it well he should be off the IV by sun/mon (I was told this may be sooner depending on how he does) They finally got Ethan to take a entire bottle (16cc's) this morning at 5am!! They said they switched from a normal nipple to a premie one and he did WAY better! Hopefully that will be the trick and we can get that tube taken out of his throat!

And I have to brag for just a moment here!! I am SO EXCITED to tell you all that I got to hold Ethan 2x's yesterday, the first time on a pillow on my lap and the second time on my chest! He loved laying on me, the second time I cried a little! He just looked up at me and cooed! (He hasn't really been opeing his eyes, in fact I am the only person in the family to see his eyes open yet!) I gave him some of a bottle both times and he did ok! The second time I rocked my baby boy to sleep!! The nurse had to wake me up too lol I was so tired but I refused to put him down until they forced me so I rocked him and myslef to sleep! I also got to give him a sponge bath yesterday (which he despises) and I helped him get weighed (he dropped from 6lb 14oz to 6lb 8oz they said this was noraml though) and finally I got to change his diaper 2x's as well! I never thought I would be so excited nd proud over the little things..but the littlest things with Ethan mean the absolute world to me! I honestly never knoew I could love anyone as much as I love my son! I have always heard people say they love their children more than life itself, and now I understand! I would give anything to make my baby boy all better!

Im hoping that today Greg will get to hold him (it'll be his first time!) and hopefully they will let him feed him as well, I asked a little bit ago and they said we can have him out and hold him for 20-30 min at a time around feeding time! Im so glad Greg will be back up here with me in a litte while! I've missed him so much, I didn't realize how muc he was holding me up until he had to go home for work. I love my husband!

Tuesday, October 20, 2009

Baby Ethan!

My precious son Ethan was born today at 7:48am weighing 6lbs 14oz! He is just adorable and truly a blessing! Here is run down on how things have gone so far today!

I arrived at the hospital at 5am and they began prepping me for the c section. I arrived in the OR at 6:50 and they began to do my spinal block, things didn't go so well with the spinal. I have a mild case of scoliosis and I did make sure the anesthesiologist was well aware of this. He began to look for the right place to put in the spinal and he began "fishing" around in my back. After 25min it was finally over with and he finally got it in (after sticking me repeatedly up and down my spine) But the pain was all gone so it was ok! They made the first incision and brought in my hubby to sit beside my head..honestly I didnt feel a thing until they pressed really hard on my tummy to help Ethan come out! Once Ethan was out I didn't hear a cry..I began to worry and asked whats going on and the nurse by my head said he was fine, they are just taking him in the other room to clean him up. A few mins later a nurse came over and asked Greg if he would like to go and meet out son while they finished stitching me, so Greg went. When he came back he had snuck and took 2 pictures so I could see him! (We werent allowed to take pics in the OR) Greg then informed me the reason Ethan didn't cry when he came out was because he had swollowed fluid. He told me that he was ok now though and they said it wasn't a big deal. After they finished doing my sutures they took me to recovery where I stayed until 11a. They then wheeled me in my bed to the NICU to meet my son! When I got there I was completely startled, Ethan is on a ventilator and is 100% dependant on it. They told me that they didnt expect him to be on it but 2-3 days but that if he was on it a week there was a procedure they woould do to make him better. My precious son was sound asleep as I layed there staring at him..he cooed and cooed which I find so darling! It brought me to tears! They then took me back to recovery where I remained again until 1p when they finally brought me to my own room. I haven't been able to go and see Ethan again bc of the pain I am in and the IV and catheter. I was told once those are removed I will be able to go see him. They said that they will probably remove them around 10p tonight but they aren't making in promises. Greg has been going to check on Ethan very regularly! At the last visit Greg was told they have done a ultrasound on his brain but the results were still not back, they also said they had done a x-ray of his chest and his lungs are immature (now mind you that I had a amino yesterday and was told his lungs were very mature) but they said that he is no longer turning blue while he is awake and fussy. They have had to sedate him a few times because he gets so upset while awake that he has severe trouble breathing, they also said they have to hold him in place until he falls asleep because he refuses to stay in the position they need him in. (That's my little fighter!!!) As of right now we have not heard much about his spina bifida...we do know the sac is low on his back and it is covered with skin! We believe it is measuring at 2 1/2in like predicted yesterday. The neurosurgeon has yet to arrive to the hospital to evaluate him or talk to us, but we are being told they will more than likely not do his surgery until tomm or thur. They said this will not make anything worse than it is or put him at a risk for infection since the sac is closed by skin.

I want to thank everyone for the love and support and prayers that have been given to us! I ask that you all continue to pray for my son as the next week is going to be a struggle for him as well as Greg and I. I know God is in control as I have said many times before, and I am letting go of my worries and giving them all to the Lord!

Monday, October 19, 2009

Having Ethan tomm!

I went in and had my amino done this morning.Can you say painful? The needle wasn't actually that bad until my darling son decided to kick it and they had to keep wiggleing it around to be able to get the fluid and to avoid him hitting it anymore. I had lots of cramping and a stabbing pain in the area that they drew the fluid but they said it was normal. We finally got the results back and they said his lungs are very mature so we will definatly have him tomm morning!!!! I can't wait to meet my son, but I am absolutly terrified of the spinal and the c section itself.

While at the Dr they did another ultrasound! Ethan was measuring in at 6lb 9oz! I knew my baby would grow!! I am 37 weeks as of today and they said his head measured at 38 weeks 5days, belly was 39 weeks 1 day, and his legs were 38 weeks 6 days! At our last appt the sac on Ethan's back was measuring 1/2 a in. today they said it measured 2 1/2 inches. I don't like the fact that the sac grew so much in such a short time,BUT we knew that there was a risk of it growing b/c of Ethan growing (they told us as the baby grows larger the sac can grow with the baby.) But Ethan will be born in the morning and then will have his surgery either tomm or wed so the sac wont be able to grow any further!

Please keep Greg, Ethan, and myself in your prayers...Greg and I are both very scared,nervous, and anxious yet excited..and we have full trust in God that we will make it through this as a family! Thank you all! And I can't wait to update with the story of tomm and pictures of our son!

Wednesday, October 14, 2009

Spina Bifida Awareness Month

October is national SB awareness month. I have been wanting to post something about this for my family and friends, but in all honestly I was not sure what to say. A wonderful woman named Colleen that I met on the babycenter website (the Spina Bifida Kids group) recently made a post on facebook that I love! I asked if I could steal it (as well did others :) and she gave the go ahead) So I am just going to copy over most of what she put for you all to see! I hope each and every one of you will take a min to read it all! And I want to thank you in advance for doing so! The following is what Colleen referred to as:

"The run-down of Spina Bifida"
1. It's a birth defect in which the neural tube doesn't completely close, so basically, the spinal cord is exposed to amniotic fluid and all the bumping around that a baby does in utero. This causes damage to the spinal cord, which can result in paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other problems.

2. All women of childbearing age--let me say that again: ALL WOMEN OF CHILDBEARING AGE--should be taking at least 400 mcg of folic acid, which is usually present in any multivitamin or prenatal vitamin. This has been shown to reduce the risk of having a child with SB by 70%. Because the neural tube closes in the first 28 days of pregnancy, the birth defect can occur before a woman even knows she is pregnant. And we all know that pregnancy is not always planned. (Folic acid has all kinds of other benefits too, like preventing several types of cancer and dementia.)

3. Spina Bifida is not a death sentence. If you or someone you know finds out their baby has spina bifida, there is no reason to terminate the pregnancy, despite what many obstetricians might tell you. Much like the autism spectrum, the range of outcomes with SB is widely varied. Some are barely affected at all, some are severely disabled, and most fall somewhere in between. The birth defect usually does not affect cognition--most people with SB have average to above average intelligence. These children have far more in common with their typical peers than they have differences. Spina bifida is only one part of them and does not define them. They can and do become teachers, doctors, musicians, atheletes ... anything they want to be.

4. As a parent, when you find out your child has SB, it's shocking and scary and sad, and you have to grieve. Then when your baby is born, you are shocked at how "normal" your child is, and you're over the moon and shocked that you are happy again. In my three year journey with a child with SB, I've become a better version of myself. I'm more patient, more compassionate, have a purpose to my life that I didn't have before, and I appreciate the "little" things. Example: My son standing still by himself at PT today? A miracle. What at one time seemed like the worst thing that had ever happened to me turned out to be the biggest blessing God could have bestowed on me.

I want to give a special thank you to Colleen again for letting me use this! You did a wonderful job Colleen!!

Monday, October 12, 2009

Only a week!!!

I can't believe there is only 7 days until Ethan will be born! It seems as though I have been pregnant all year long and the end is finally here! I am over filled with joy, yet still filled with fear. I am ready to find out the actuality of everything. I am tired of playing the guessing games and listen to one Dr after another when each one of them have a different opinion. But we will know soon enough!
We found out today that Greg is going to be able to have off Mon-Wed which we are both extremely happy about! That means that Mon he will be there with me to hold my hand as we get the amino (for the lung development check) and Tue for the c-section and then also be there for Ethan's surgery either on Tue or Wed. We wont know for sure when his surgery is going to be until after he is born and evaluated.We also found out today that Greg may be able to take a few days off after Ethan is released from the hospital so he can be at home with us! It will have to be without pay..but honestly I am not that concerned with it. I feel that it is much more important to be able to have a few days at home with my hubby and our son so we can all adjust together!
I go back to the Dr tomm for some routine blood work and the usual measure the belly, take my weight, and listen to Ethan's heartbeat. I will then not have another appt until Mon when I go in for the amino. I think they are going to go ahead and take measurments of Ethan while I am there doing the amino but I am not sure, I will have to check in with Dr. Bland tomm and find out exactly what the plan is.

Saturday, October 3, 2009

The Coutdown is on!

As of today we have 16 days to go!! I have been counting down for awhile,but last night while talking to Greg,we both we're like "holy crap,were having a baby in 2 weeks." Dumb I know! We both know were having a baby,everything is ready for just seems like it finally hit that we are haveing this baby SOON! The wait is almost over!

We went to the mfm Dr yesterday! Ethan is weighing in at 4lbs 10oz which is honestly a bit smaller than we really were expecting. This whole time we have been told he is measuring big and now all of a sudden he isnt? Who knows,maybe they are wrong! The guess from the dr is that Ethan will weigh between 5lb10oz and 6lb when hes born on the 20th. I was also told that there is a 50% chance that I will go into labor with Ethan before the c scetion. SCARY!!! I am just telling myself this dr cannot be positive of this, he never does my exams or anything, he just does my ultrasounds! Though it has scared me enough to make me keep my ass in bed! I have been supposed to, but it is so much harder than it sounds. I get so bored so easily!