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William and mommy

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Laying on mommy lifting his head!

William awake

Williams bed

William kanga care

Tommy playing with phone at nicu

Micah sleeping

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Occupational Therapist/Speech Therapist

Today (ok yesterday now) morning I met with the occupational therapist, and she showed me how to stretch areas that are tight on him, so they loosen up, and don't remain stiff, some of the same movements my chiro had suggested to encourage the brain pathways to fire on the different sides of the body.  He was a lot better than the last time she saw him with his range of motion (she had stopped by about a week prior), so it's good to have someone on this week that has really seen him improve.  For the grandparents and those who can visit him, what we should be doing is moving the legs and arms at all joints, in all directions to encourage him to flex them, and move them.  Then also hold him in a sitting/upright position and encourage him to flex head forward and back (so he builds muscle tone in his neck).  His neck is one of the floppiest parts, but that's partly because he's so skinny.  She would tickle his tummy to get him to flex the head forward and then reverse and tickle the back.  (One of the great things about baby wearing when I get him home is that it "counts" as Tummy time, so it will also encourage the neck muscles too.)   The occupational therapist will be working with him Monday Wed and Friday usually, in addition to when we are up there we should work with him also.  

Ok as we were finishing up the Speech Therapist came by (she will be working with him 5 days a week Mon-Friday.)  Speech Therapist is responsible for helping with feeding issues and working with him to take a bottle or nurse.  She tried 3 times while I was there to get a gag and did get one really good gag that I saw, but you also have to think that gagging isn't very fun, and I know if someone were constantly cramming a finger down his throat it wouldn't be very enjoyable to have anything in his mouth.  (seems like they are doing this at least 3-4 times a day (nurse, doctor, and therapist)  So then she worked with him with both her finger and paci to get him to curl his tongue around the paci/finger, as he would need to do to take a bottle paci.  I held him after he was done and we didn't do any more with the paci as he was pooped out after all this stimulation and he was also cold.  

Nana came by to hold him while I took a break to pump/feed micah and grab a bite to eat.  

He wan't too receptive to the paci the rest of the afternoon, but I warned him I would be back later tonight and we would work on the paci again.  Which we did this evening, he did great this evening, he held it in his mouth (ok didn't push it out) and seemed to rather enjoy it as I just massaged his mouth with it while he had his feeding and rested on my chest.  Then we worked with all his stretches, he was very loose this evening, and moving even more.  Then I worked with him with a gloved hand so I could tell if he was sucking on the paci at all, and it definitely seemed like he had a week suck, or at a minimum was wrapping his tongue around the finger.  His tongue was still positioned back in the back of this mouth (behind the gums) so we've got a ways to go before he can nurse.  I know from experience with Tommy that the tongue behind the gums doesn't work for nursing and HURTS.  But it would be great if he can start sucking very quickly so he can do a swallow study and start taking a bottle. 

The same doctor today was still telling me that ng tube was dangerous for him, and that he would need a g-tube, and that the swallow study would be dangerous for him too.  And her main reasoning is because he doesn't gag every time they cram the finger down his throat.  I'm still really hoping as I'm seeing lots of progress this past 2 days.  So please keep praying the doctors who spend 5 min with him will see it also, and that William will perform to their requests.

Feeling a little better visiting tonight

At my night time visit william couched, sneezed (things the dr said he wasn't doing and because he wasn't doing a NG tube wouldn't be safe to go home with) and kept the paci in his mouth most of the time. (Ok he didn't really suck it. But keeping it in is a good thing) Also with the paci in his mouth his o2 stats were up closer to 100% ranging from 97 to 100 for the first time. Usually they've been 92-96. Also he's been maintaining his temp for close to 24 hours now. Last night when I left I asked them to try him in a crib again. They did and he's been doing well. Just wish the drs would see progress mom sees.

Not sure how to put this...

Today seemed to be nothing but bad news.  And I'm really not sure if it was just different doctors, or if it was bad news.  

First the NICU doctor questioned my hepatitis B status, which I though had already been confirmed during my hospital stay immediately following the birth.  I have already signed a release for the doctor to send the information to the hospital, but apparently making it in my chart doesn't automatically make it in my babies chart.  So I've been given instructions to contact my doctor again and have him fax the information to the hospital.  

2nd the NICU doctor said there was no gag/ or not enough to proceed with a swallow test as had been planned for Friday and that we need to consider G-Tube insertion.  And that she wasn't seeing any of the progress the other doctors had seen the previous week.  She's a different doctor than we had been seeing the previous weeks.  Also Tuesday is when the hospital has discharge planning (for all patients).  She was also not willing to consider training for NG tube placement for us so we could place the NG tube, and go home with NG tube to see if we could recover better at home first with the NG tube.  (G-Tube placement would require another 3-4 weeks stay for placement healing and training to take place.)  She did mention that we would have to have a joint meeting to discuss the options.   This is very discouraging to me, and will continue to discuss it further with her and the other doctors in the practice, as well as the GI doctor, and other therapists we will be seeing.  She did mention that we would be seeing an occupational therapist that will give us range of motion exercises to do with him when we visit and at home.  Also, we will be meeting with a speech and language therapist (as they are the ones that deal with feeding issues).  

3rd I met with the neurologist about the EEG.  I'm not sure I remember everything, but I'll give it my best shot.  I didn't as many questions as I was feeling a little overwhelmed with everything already.  The EEG showed little communication between the right and left sides of the brain, and no seizure activity, but lots of "angry" activity.  He doesn't recommend another EEG at least for a few months, and he recommends continuing the medicine for a few months.  He mentioned we may have cerebral palsy, but to what degree we won't know for a while.  Again this was a different neurologist and I couldn't think of any questions to ask at the time.

EEG/MRI Monday

Yesterday we had another EEG and a MRI.  We have the results from the MRI, but not the EEG the results from the EEG aren't expected till Tuesday evening at the latest.  The MRI was more of a baseline and really gives us no new information.   They said it showed a clot (not sure where or what exactly that means) but the clot wasn't causing problems is what I was told, and it also showed some areas that were affected as we are seeing in the clinical picture, and the good news is there was nothing more that it showed, no swelling, nothing we didn't expect to see.   

Micah is doing great at home, he's being loved on by his big brother a lot!  Tommy is wanting to hold Micah a lot, so daddy helps him hold him.  I hope to be uploading new pictures soon.  

William Cried

Sad but positive news.  Rob went up to the hospital earlier today and the nurse told him while he was there that for the first time William cried during a diaper change.  This is good because he hasn't done that before.  I was up there this evening, and Doctor West stopped by and mentioned him crying also.  Also while I was holding him his fists weren't clenched for one of the first times, the doctor mentioned in passing the other day that him holding his fists clenched all the time can be a sign of neurological trauma.  Please keep praying for him. We want to continue to see these baby steps forward.  Also the tests that are planned for the coming week include another EEG (probably on Monday) with an MRI, and a swallow study.  We would like to see no seizure activity on the EEG so we can come off of the medicine he is on (Lord willing).  

As you can see from the pictures below, we're trying to also stimulate his brain by bringing my IPod up to the hospital and having him listen to classical music while we hold him.  You can tell he can hear it because when the fast parts of the music come on his heart rate increases.  What can I say we're trying everything.

I also wanted to say thanks to everyone that's praying.  Please continue to pray.  We've been/feel so blessed by your prayers and concerns for our family.  Also, please feel free to comment on this blog and let us know you are praying for us.  I can see there are those of you watching as my hit count has increased from two weeks ago 6 a day to about 125 a day this past week.  We are so blessed that you are concerned for our family!

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Music Therapy

Update on William and Micah

Sorry it's been a while since an update.

Micah Joe was able to come home Tuesday Afternoon, and we've hardly set him down since having him home.

Wednesday - We had an appt with the neurologist that evening at Williams bed side, and the neurologist didn't tell us much that we didn't already know. He's doing as well as can be expected for the assault he took with not breathing. Basically we don't know when or if and that William is the boss, and we're all along for the ride.

Thursday - I had a Psyc Evaluation in the AM that was 5 min with a counselor who asked a little of the details, and then 4+ hours of paperwork. In the paperwork was about 1000 questions asking in a variety of ways do I abuse alcohol, drugs, beat my children, or am I suicidal. Also several phycological profile quizes including myer's brigs personality questionaire.

Friday - Early am (12am) after we went home thursday night I headed up to the hospital by myself so I could see William. He was wide awake the whole time I only intended to stay about an hour, but I just couldn't leave him so wide awake. He was looking at me, the lights behind me, my cel phone light as I took several pictures (below) with my cel phone. He even had the cutest squeeky hiccups. I didn't leave till close to 2:30am. Micah stayed with daddy, and then Daddy had to call because the Mommy's gone radar went off and daddy had to fix Micah a bottle. I also had the chance to chat with my chiropractor on the phone about Williams condition, and we evaluated a weekness on the Right side of his body, so she had me exercise things on that side of the body (move his toes, ancle, knee, hip, fingers, wrist, elbow, shoulder) to encourage the nerves on that side to fire. (What can I say, we're trying everything.) It seemed to help with his routing reflex slightly.

Friday afternoon I had a friend from church bring us a wonderful dinner and take me up to the NICU so I could see William again, and she held Micah so he would have access to Mommy if he needed to eat. While I was up there I had a chance to speak to the doctor and see if there was anything new. The doctor said he was defiantly more movement and activity. And that he also thought he felt a gag this morning when he checked him. YEH!!! PRAISE BE TO GOD!!! We are jumping for joy at this news. So this means that they will need to do a swallow study (x-ray with radioactive stuff to make sure if he swallows stuff it goes into his tummy and not his lungs). Also the plans for this coming week include doing another EEG test, and also an MRI. We've requested that the MRI be done by strapping him down and not with sedation as we would like to avoid anesthesia/sedation drugs if at all possible. The DR said he would check with the radiologist to see if this is at all possible. Also as I was leaving I tried the paci with William and he gave it a slight suck, which is huge progress as before he wouldn't even close his mouth around it. Please continue to pray that he will continue to make progress to sucking and swallowing.

Micah Nursing Kisses for Daddy's Nose

Kissing Daddy's Nose

William Pictures

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William so Wide awake in his incubator

Summary of the birth of my Twins

I had them at home and we transported because the first twin did not start breathing immediately.

The first twin (William Josiah 4 lbs 10oz 18.5 inches long) was born not breathing, so we called 911.  While giving William CPR I got the urge to push again.  All I could think was please God don't let this be the placenta because he still needs to be attached.  I pushed and the 2nd twin (MIcah Joe 7lbs 1oz 19 inches long) was born crying.  The paramedics arrived shortly and cut the cord and began working on William.  He was transported in the first ambulance, and Micah was transported on my chest in a second ambulance because he was grunting (but still a bright pink). 

William was on a respirator over night the first night, graduated to a nasal candulum, and is now breathing on his own.  He's had a few episodes of apnea.  He is now gaining weight and holding his own heat.  He is in a crib in the NICU still, and is getting tube feedings of only mommys milk because he has no gag reflux.  But the good news is he's swallowing his spit, so there's hope.  He had and EEG today (Monday), and a CT Scan.  The CT scan was normal except for a small Subdural Hemorrhage, we don't have the results of the EEG yet (takes about 24 hrs.)  The subdural hemorrhage is outside the brain, and not causing any trouble. If there is no seizure activity on the EEG then we can remove him from the Phenobarbital that he is on to prevent seizures and rest the brain.  They really expect for him to be more active and make progress towards the sucking/gag reflux or they will be talking about G-Tube insertion.  So please be praying that coming off the Phenobarbital will allow him to make the progress they are looking for and that we don't have to consider a G-Tube.  

Micah was on a CPAP overnight, and has been breathing room air on his own since that morning. He was treated for a collapse lung.  Micah is nursing well.  He was treated for Jaundice and could possibly go home in the morning. 

Williams condition is likely due to IUGR because his portion of the placenta was very small.  The doctor thinks they are identical twins, but it will take genetic testing to confirm, which would require too much blood at this point.

William gets a CT Scan

Setting up for CT Scan

William getting setup for the EEG

Setting up for the EEG

Update for Boys Today

Micah may be cleared medically to come home on Monday or Tuesday.  His remaining issues: Jaundice and, still slightly loosing weight, other wise he's good.  Also today he was moved to the newborn nursery and out of NICU, called the Baby Steps Nursery, still manned by NICU staff, but a lot quieter, and only 2 babies and a window where siblings can see.  

William, he's still getting tube feeds, the full feeding of 37 cc's, he's now off of IV nutrition and fluids, he's still on fenababarall (anti seizure) via IV, to rest the brain, pending no-seizure activity on the EEG tomorrow.  They will also do an MRI, CT Scan or Sonogram again tomorrow.  He's gained 3 oz, and seems to be doing better each day.  He had another apnea episode today :(.  So we're really hoping he'll have the EEG tomorrow and the Neurologist will read the EEG Right away.  

Hi Brother William!

IMG_5992.JPG, originally uploaded by conradzone.

I was worried about you, it's so good to see you! :)

(Micah looking at William)

Update on the Twins

3/14/08 1am

William is doing well. He's breathing room air, and he needs no breathing assistance (the nasal contraption he had). William also had an EEG and they found no seizure activity. He had been shaking and his eyes had been rolling. He'll have another EEG just make sure. They'll do a gag reflex test tomorrow, and if he passes, then he can start to breastfeed. Optimistically, they're hoping he'll be out in 7-10 days. 

Micah is continuing to learn to breastfeed and is in a regular bassinette. He may go home as early as Monday.

I almost forgot to give the official stats: 3/11/08 around 10 pm William  4 lbs. 10 oz.  18" Micah Joe 7lbs. 1 oz. 19 1/2"

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Today:

I'm on my way up to the hospital so this will be quick: New pictures on my blog: conradzone.blogspot.com and Flickr account: www.flickr.com/photos/conradzone Micah: New today: he is on Billi lights for the Jaundice it is double yesterdays value, but he is pooping more today the number is 13.6, but this isn't bad and he's only expected to be on these numbers for a day. New yesterday: He's off of all IVs and breastfeeding for all nutrition, my milk is in and he's eating well, and there is plenty for william too. William: New today: some apnea episodes, on Billi lights but values is down from 10 to 6. He's increasing feeds from 10 cc to 5+ every other feed. He's currently at 15 and quickly up to 20. He's also getting iv nutrition, and IV electrolights. Brain scan EEG set for monday, and CT scan too. He needs to be having more movement and a significant increase in brain activity in the EEG, and no sesiure activity so he can come off of the anti convlucant. Minimum 5 more days in the hospital.

Daddy and Micah

IMG_5953.JPG, originally uploaded by conradzone.

Baby William and Mommy and Daddy!

IMG_5964.JPG, originally uploaded by conradzone.

Tommy Meets Micah

IMG_5970.JPG, originally uploaded by conradzone.

The nurse brought Micah to the window so Tommy could meet him today!

Fw: Baby pics

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Happy 2nd Birthday Tommy!!

Voting

Yes Tommy helped Daddy Vote and got a sticker on the nose for doing so. 

Tommy with Snow Man (little blurry)

I just felt the coolest thing!

I put my hand on my belly just becasue it's so big that's the only place really to rest my hand, and I cold feel my belly going up and down like it was breathing.  In case you don't know what that feeling would be, I held my breath and it wasn't me.  My baby was practicing breathing!!  A healthy full term baby will practice breathing while still in the mother womb.  It's something they check for when they do a BPP (Bio Physical Profile) Sonogram late in pregnancy.  I never knew you could possibly feel that from the outside, but I'm positive that's what it was.  I remember them checking if Tommy was practicing breathing in the sono we had on him on his birthday.