Tommy

IMG_6537.JPG, originally uploaded by conradzone.

My 3 Boys

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Brothers!

What cuties!

IMG_6545.JPG, originally uploaded by conradzone.

A day in the Life of the Conrads

Today was a busy day, we started running out the door at 8:30am to Swim lessons (for Tommy), after swim lessons we went home dropped off William and Micah with daddy and Tommy and I went to the library to pick up some books, as we try to read some books at nap and bed time each day.  Rob fed William a bottle and got poop all over himself while I was gone.  I had nursed Micah before leaving for the library.  After the library we came home Rob left for work, we read all our books, and lay down for a nap.  After much fighting Tommy finally collapsed on the floor next to his bed for his nap.  

While he slept William and I met with ECI, I pumped, she showed me some neck exercises for him as he still has tendencies to the right side, and we also discussed other exercises I can do with him.  She fed him a bottle for me as Micah had just awoken to eat again, and I nursed him.  He ate 4 oz in about 15 minutes and quickly passed out again.  William slept through most of the visit, and Micah talked and cooed away begging for attention which he wasn't lacking in.  

After the ECI visit Micah nursed some more, and then Tommy awoke from his nap with a poopy diaper.  We cleaned up and ran out the door about 10 min late to our 3:30 chiro appointment.  After our appointment we ran home to get shoes and clothes for soccer practice and headed out the door for soccer practice, on the way we stopped at Chick-fil-a for some dinner, and a quick play on the play ground, then we headed in the direction of soccer practice, sense we were running a little early I called someone more familiar with Wylie to ask where a park would be located close to our practice location.  We played at the park for close to an hour, while Tommy played and ran all over the equipment I nursed one child, and then bottled the other.  After playing on the playground we headed over to the soccer fields.  I pumped in the parking lot on the way, and changed clothes.

I played a little soccer and the babies lay happily in the stroller, and carseat, while Tommy played next to the field with some of the other older kids.  At the first water break William was hungry and dirty again so I changed him several times and fed him a bottle, he then lay on a blanket while I was able to play some more.  Then tommy came over to me hugging my legs asking me to "pick you up"  ie pick me up.  So at this time everybody was about to pack up and go home so we did too.  At 8:30 we were headed home.  We arrived home cleaned out the car, took a bath, had a snack, and lay in bed about 9:40 for some stories.  Then I nursed Micah while Rob gave William a bottle, and both babies passed out on the couch with Rob and I.  I will then pick up the house, wash diapers, wash bottles and head to bed myself.

William

William, originally uploaded by conradzone.

The sweetest smile ever. He was laying in bed drifting off to sleep and smiling several times so I grabbed the camera and caught this just in time!

New Pictures:

Tommy Feeding Papa's Ducks!!

William and Micah in the shirt Nana and Papa picked up on their vacation.

Micah and William Sleeping

More Size difference Micah and William Sleeping

Two of the sweetest angels ever!

Tommy Pumping for the babies

William OT

We had OT today, and cried through most of the Cranial Treatment.  It was tough!  He seemed a lot more relaxed after it was over.  He always seems to sleep a lot after treatments.  We're seeing more reflexes than we saw in the beginning, and Susan was saying that we will be watching to see if he coordinates and combines the reflexes and makes them into brain functions instead of spinal cord reflexes.  He keeps improving, but the improvement is slow.  

In other news it appears that the yeast/thrush is back.  we finished our medicine on Friday ~9 days, and sunday the white patch on the tongue was back.  I'm still giving motrin every day, but today was only one dose instead of 2.  I'm also giving pro-biotics in his milk, and still taking anti-yeast supplements myself.  

Nana's

Saturday Rob was working so we headed to Nana's house, after two accidents and 3 fits in trying to pack up and head out the door.  Finally we were in the car and on the way.  We stopped on the way and picked up chick-fil-a, and then continued on the hour drive to nana and papa's house.  at nana and papas Tommy played in the pool, feed the ducks, slid on the slide, and took a nap with papa.  Then we played in the pool again (this time with Daddy as he drove out after work).  It was a fun day.  I took some pictures I'll try to upload soon. 

Train Ride

Wed or Tuesday last week Tommy asked me to ride the train.  I told him Friday we would ride the train as we had plans for every day that week but friday.  So friday after nap time we headed to the train.  I had Maddie helping me out all day, and so she helped with the train ride too.  She carried William and held Tommy's hand while I carried the stuff (diapers, and stroller) and Micah.  We got on the DART rail at 15th street station and rode to city place, then we got off, rode up the escalators to the top, and then went down and re-boarded the train, and rode back to the 15th street station.  About a stop before our stop tommy was telling me all done train, but then when we got off he was crying more more train.  We played in the park close to the stop, and then headed home.  

LC Visit

Well Sharon Assessed him and he chomped on her finger quite hard several times, and she quickly declared that he's not ready, and I agree, he is better with the sucking sometimes, but not this time, and not consistently enough.  She encouraged me to keep trying, but did say that she wouldn't put a nipple within ten feet of his mouth with how he chomped on her finger.  So we'll continue our therapy and try again later, keep doing the skin to skin and maybe at 5-6 months he will be ready.  The important thing in the mean time is he's getting breast milk and I'm pumping to keep the milk supply availiable to him....

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LC Appointment

I'm taking William to see a LC tomorrow to see if we can work a plan to get him to the breast.  We've been treating a thrush infection and it seems much better now, and also with doing that his suck has been much more consistent (though still not always) at a bottle, so I feel it's time now to try to see a Lactation Consultant, so we have an appointment tomorrow.  I really don't know what to expect, but I would love to get him to the breast eventually.  He's 3 months old now, but didn't start feeding on his own (without NG tube) till close to 7 weeks.  Benefits for getting him to the breast include improving the muscles of the face and throat, more relaxing hormones to help him relax and lessen the muscle tone.  

Neurologist

Well I screwed up today, I asked for Rob to be off on the 12th, I totally thought our appointment was on the 12th of June, and on Thursday.  So I show up promptly at 7:50 as I'm suppose to be for a first time appointment at 8:20.  Only to find out that our appointment was suppose to be yesterday.  So they do some checking and they can fit me in first thing today, but the doctor doesn't get their today till 9am.  So we wait and have William's appointment at 9 am.  

So we see the doctor, they weigh and measure him he's 22.5 inches and 9# 6.5 oz.  Yeah, more weight gain! ;)  The doctor asks me questions about his development and what he's been doing.  And what my concerns are.  He says he's about a month behind, he should be smiling and cooing more, and he just gave his first intentional smile to me this morning when I was changing his diaper.  We discussed his Hyper muscle tone (too much muscle tone/holding his limbs all stiff)  he said we can do two things for the hyper tone, we can do therapy (which we are doing) or we can give medication that will relax his muscles, and the medication they would give would be valium.  After examining him he suggested we continue with the therapy, and to call if his tone got worse, but that he didn't need medication at this time.  He did say instead of giving Tylenol to give motrin for pain, to help with the inflammation.  Also, that if we find that we are giving Motrin or Tylenol everyday that we may need to switch to the valium as valium is easier on the liver and kidneys. 

Skills of a Two Year old

Don't forget to take your keys with you into the garage, especially when babies are in the house and especially with a two year old.  No nothing happened to the babies, and everybody was fine, but it could have been a whole lot worse.  Some times you just don't know what a two year old can do till you go out to grab something from the car really quick and come back to find the door locked.  Yes LOCKED!  Did I mention it's raining outside too.  I knocked on the door and could hear tommy on the other side, so I immediately knew what happened.  I try to tell him to unlock the door, and could quickly tell he couldn't figure out how to do that, but I quickly remember that I just got the mail in the front and left the front door unlocked then, so I dash around the house,in the rain barefoot through the wet grass, and I was correct, and am now back in the house.  A sigh of relief, and a hilarious laugh for Rob when I call him to tell him the story while he's at work.    

Treatment for Yeast

What we are doing to treat the yeast:

1.  Nystatin 4 x a day for 7-10 days

2.  Avoiding extra sugars (or trying to) (this also means we aren't fortifying the milk anymore because the 2nd ingredient on the formula is corn syrup solids, yeast food basically) 

3.  Gentian Violet 1-2 x a day

4.  Sterilizing bottles

5.  I'm taking Garlic, Echinacea, Grapefruit Seed Extract (all anti yeast supplements)

6.  Using Burt's Beas Baby oil, and Grapefruit Seed Extract Mixture on Diaper area, and powder (per pediatrician instructions)  

Also:

1.  Tylenol 2 x a day for pain (has helped stiffness with arms and legs, and less arching, and a few more smiles).  

Also if the Nystatin doesn't clear it up, I will push for systemic medication like diflucan. 

Root of the Problem

We may have found the root of the problem with William's weight gain/feeding issues.  YEAST!! We had our appointment with Speech (ST) and OT Tuesday.  William showed all his usual problems iwth the feeding we did with her.  Lots of arching, spitting, milk running out the side of his mouth.  She said what I've felt all along, that he looks like he's in a lot of pain, and she wanted to wait for most things til the yeast cleared up.  She said she felt like the yeast was causing the pain, and it was right on the portion of his tongue responsible for swallowing.  She really felt like his problems eating would be much better after the yeast was gone.  

OT appt

William had OT on Tuesday, and we started in the water, it brought out a lot of stuff that needed to be worked on around his rib change and shoulders. 

Friday at our weight check he gained 1.5 oz and is now 8#15.5oz.  We need to be doing a little better than 1.5 for 3 days

Stellar Weight Gain

Williams been eating way better over the weekend.  I was sure he would gain weight when he was weighed today, but I wasn't sure how much.  He gained 7 oz!!!!! YEH!!! That's 4 days, almost 2 oz a day, that's more the type of gain we want to see so he can catch up with his brother.  He's been eating 4-5 oz every 3-4 hour which is GREAT!!!  If fact he's been eating closer to 5 oz when he eats.  We've got OT therapy so I better grab lunch before we have to run out the door.

Pictures from Tommy's 2nd Birthday!

IMG_5900.JPG, originally uploaded by conradzone.

Can be found here:

http://www.flickr.com/photos/conradzone/sets/72157605223625587

I'm such a bad Mommy, I never posted the pictures from Tommy's 2nd birthday party on March 8th, but with everything that's happened since the 11th I hope you'll forgive me!

ECI

We had our ECI evaluation today, and of course William qualifies.  William ranks at a newborn level, and for as bad as his tests were, he is doing amazing is what they keep telling me.  Someone that already has CP sometimes their head or arms or legs etc cannot be moved, and when he is asleep he is very loose compared to other babies that are worse.  

Currently they don't duplicate services he's receiving else where, and he's getting OT, and ST else where right now, so they are going to do monthly service coordination, which means they will come out monthly and give suggestions for ways we can work with him in addition to the OT and ST and also check on him monthly to make sure he doesn't need more therapy.  Also, once the home nurse visits are done they can have a nutritionist come out and check his weight and make recommendations for him.  

Currently I'm suppose to go back to work around June 4th, but my husband and I have decided that I will stay home longer for William and pay for insurance with COBRA, as FMLA runs out after June 4th and at that point Raytheon will cease to pay for my insurance benefits while I'm on leave.  I would give anything for William to not have these struggles, but as there's nothing at this point we can do to change that we as a family are going to do what's necessary to insure his health.  At this point we feel it's best if I stay home longer to ensure he's eating and doesn't have to go back to the hospital for more NG feedings if he were to not eat well for a care provider.  

HANDSOME BOYS

HANDSOME_BOYS.JPG, originally uploaded by conradzone.

Figured we better wear these shirts before we out grow them. Micah is in 0-3 months and William is in Newborn, but both are about to move up to the next size (William up to 0-3 months and Micah up to 3-6 months.)

Tommy the Big Helper!

HOLD THE BABY.JPG, originally uploaded by conradzone.

Tommy was a big helper today at the Nature Preserve. He held Micah for about a 1/4 of a mile on his lap.

KISSES

KISSES.JPG, originally uploaded by conradzone.

Hold the Baby

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And Hold the other baby.

Micah and William

SMILES.JPG, originally uploaded by conradzone.

Tommy Time

The other night Tommy and I spent some time having just Tommy and Mommy time.  We painted.  It was so much fun.  Tommy painted naked because it was just easier to clean up that way. And when he was done he had painted "EVERYTHING" including you know what.  

Here's what we did:

Here's some cleanup pictures.  When we were done we threw everything in the tub, paint containers, brushes (ok the only brushes were the fingers).....etc.

      

Update on William

Wed to Friday last week William didn't gain any weight at all.  He was steady at 8# 0.5oz, then on Monday he had gained 4 oz.  8# 4.5oz.  We're watching his weight close, and will hopefully see gain again today.  

Tuesday he had OT and ST, and did great.  It wore him out, and he slept most of the evening, and night too.  He didn't do so well eating, but did eat enough we think.  

Today William and Micah helped me take Tommy to Arbor Hills Nature preserve.  We had a good time, but were worn out at the end.  I think I need a spare set of hands if we go back again.  

Missing Clyde

Friday we walked to a park near our house, One boy on my back, one in the stroller, and one walking with us holding Clyde our special teddy bear.  (I'll give you one guess who was walking holding Clyde, and it wasn't William or Micah).  At the park we played with another 2 year old boy that was there.  Tommy and Cameron (I think) had a blast chasing each other down the slide, and walking around the park balancing on the blocks. Then he had to leave, so we left too, it was nap time anyway.  We arrived home, dressed for nap time, and lay down in bed for some snuggle time, and then I went to tuck him in with all 3 teddy bear Clyde's (yes every teddy bear is Clyde), but these are the special ones we sleep with, but only 2 Clyde's were present, and I said to Tommy "We left little Clyde at the park!"  He gave me a wide eyed look, but was still ready for nap time, so he lay down for his nap and I went to feed the boys, and call Grandma.  I called Grandma, and informed her of the amber alert for the Teddy bear, and she rushed right over so Mommy could hunt down the missing Clyde.  I walked to the park and look all over, he was no where to be found.  Then walking home I remembered that he had gone up to one house, and then down their walk way, and I looked an on the front stoop there was Clyde!!!  HE WAS FOUND!!! I was so exicted!  Nothing make a mom's heart sink more that a missing special bear, and celebrate when it's found!  

Grandma stuck around and watched Micah and William so I could take Tommy to the store and get some much needed Grocery shopping done!  Yeh! I didn't have to do it at night after Rob returned home from work so I could use my night time for getting some much needed sleep!  

OT and ST appt Tuesday

We are finding lots of things/aversions in his therapy related to the hospital stay, like the bottoms of his feet are sensitive because of all the heal sticks he had, and he has a strong oral aversion to gloves on hands.  We are using other tools to work with him during the speech portions, and when it comes to using hand in the mouth for some of the treatment they've said if it's ok with me they can use a well scrubbed bare hand.  I'm find with that, I just want him to get better and what ever it takes.  I'm suppose to use the nuk brush at home on his lips and gums before feedings and then also massage his feet with lotion to put good feelings with touching the feet.  

LLL Disaster

We attempted to go to a LLL Mtg today (tuesday) and it was a total disaster.

Tommy started crying for ba-ba as soon as we walked in the door....(nurse) I try to avoid that, but he gave me no choice, so then I was nursing Tommy and Micah, but what better place to do it....sigh...

then after I told Tommy he was done he got down and started clubbing kids over the head with toys.  Then he had an accident and all I had to put over his bottom was a diaper cover, so I did that and he had another accident and stripped naked in front of everyone (about 15 moms).  All I then had for him to wear was some underwear I had found at the bottom of my bag.  

Oh and then he proceeds to scratch another mothers new baby on the face.  She was very understanding as her son was going through some of the same things.  

I just wanted to cry!!

Thank you Everyone

I went to the local ICAN meeting Monday night, and ran into several people that I didn't even know that were praying for my family, my marriage, and William of course.  It's so wonderful to meet strangers and hear that they've been touched by Williams story and following it every day and praying for him, and wishing they could do more.  We are so thankful for all the prayers, it is just amazing to sit her watching God perform Miracles through him.  Even if all you can do is pray it just means so much to us.  Please keep praying!

Explaining some things & 2 month checkup

I've been asked several of the abbreviations I've used and what those mean:

CP = Cerebral Palsy

OT = Occupational Therapist

ST = Speech Therapist (feeding issues)

ECI = Early Childhood Intervention provides therapy through school districts free birth through age 3.  

How is William and what's the prognosis:  He still resists eating and has trouble enjoying it.  It's lots of work for him still.  He eats the minimum, and is gaining the minimum needed (1/2 lb a week), but we would like to see him do better here.  He also had trouble eating for different people at times.  His official diagnosis for all the therapy and to qualify him for various support programs is CP.  His muscle tone is Hyper-tonic (over tone) (too much tone in his muscles).  He holds his arms stiff and his neck stiff at times, and twists it to the right.  We've now had 3 chiro adjustments and it's helped his neck, but I do see we still have a ways to go.  He will have chiro care 3 times a week for 4 weeks then we will re-scan him and access where his is.  This is also highly recommended by his pediatrician.  She recommends that all babies get chiropractic care.  He is expected to be "all there" intellectually, but the physically is a question at this point.  We won't know the extent of his injury for possibly several years.  The best thing we can do is get him all the therapy we can.  

William and Micah 2 Month Checkup

2 Month checkup for the babies was Monday.  William was 7# 14 oz and Micah was 12# 7 oz.  Micah was 75% height and weight, and William was closer to 10th.  I'm sorry I forget all the height information from the appt, I'll have to call and update this post tomorrow.   The main topic for the appointment was William, and what we are doing for him.  She wanted me to take cards and pass them on to the chiropractor, and other therapists and have them all report to her how he's doing with each different treatment, so she can coordinate it all, and be the "ring leader".  She was excited we were getting chiropractic care for William and even said that that's the best thing we can do for him at this point, and to keep up the good work.  

Pictures of the Boys!

BTW: I don't recommend pictures being taken at 8pm at night when the toddler's bed time is usually 7:30, it took tears and bribes and distractions to get these pictures, and my husband said don't take me with you next time.  

Tommy

William

Micah

Micah, Tommy, William

William, Micah

William, Tommy, Micah

If you can't see them in this email check out my blog.

-- 

Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
http://conradzone.blogspot.com

William myriad of doctors appts.

William's myriad of doctor's appointments:

Monday afternoon we had the followup discharge visit with the Pediatrician, she weighed him, and checked his refluxes and range of motion, and briefly discussed how CP is a matter of therapy, and that's what we need to do is get all the therapy we can.  He weighted 7#8oz (up from 7#5oz on Friday)  And 7#1oz on discharge from the NICU.  She looked at him said he looks pretty good considering, and said we would check weight again at the 2 month appt in a week. She also said to feed him as often as he's hungry.  Try for every 3 hours, and watch his signals.  Also, she said to make follow up appointments with the neurologist for when then need to follow up on him, so I will call them tomorrow. 

Tuesday afternoon we had an appointment with the OT (again the OT and ST people we are seeing are those that worked with the conjoined egyptian twins IPT), who took a history of the birth, and events related, and also a history of his NICU stay, and then worked with him using cranio-sacral therapy.  After the appointment his head (the frontal bone of his skull looked much better.  It had a bad overlap before, and she said that a lot of his brain looked compressed, and that the therapy would allow it to expand on it's own.  Also she mentioned that the frontal bones are right over the motor cortex of the brain and that helping those expand would allow the motor skills to improve.  Also she mentioned that she does no manipulation of the bones, and that the pressure/touch they use is lighter than that of a nickel.  He squirmed a little for the appointment, but fell asleep by the end.  She said she would suggest 6-8 weeks of treatment at this time, and then re-evaluate at that time.  Also, she said he's some of the youngest patients she's treated, usually she get kids when they are 4-5 months old or older because then they are showing some obvious delays, so it's good we are treating him even younger.  

Wednesday morning we went to the new chiropractor that we'll be seeing.  He did a scan of Williams spine and it showed Red/severe disturbances at the very top of his spine and also at the bottom of his spine near his sacrum.  He then adjusted him, a lot of the bones in his skull were out (almost all of them), and then adjusted his neck, and then is lower spine and sacrum. Previous to the chiro visit and part of the reason for the visit William had been holding his head to the right side all the time and when he was in pain or discomfort, and had been doing so for weeks.  I knew he needed chiro care much before he was discharged due to this.  After he adjusted the neck William immediately turned his head to the left and fell asleep.  We will go back on Saturday for another adjustment, but now I'd say his neck is 80% better, and he's eating better after his adjustment. Several of his reflexes after the OT and Chiro treatments are looking much more normal. 

Also, Wednesday the home health nurse came by and checked on William.  Did his vitals and weighted him.  He was 7# 10oz up from 7#8oz on Monday.  She will check on him again on Friday.

PS the underlined words at the top are links to more information.

Our look ahead (PS any help with tommy for appointments would be appreciated.):

Saturday: 9am Chiro appoinment for William (Rob is home to watch Tommy)

Monday: 8am Pediatrician again for twins 2 month checkup 

Tuesday: 1pm William OT and ST appointment (Rob is home to watch Tommy)

Will have a standing appointment on Tuesdays for OT and ST probably around 2 or 3pm.  

Chiro scan

Story on the Picture below.

Tommy really needed to go down for his nap early today as he needed to go to a friends house at about 2 so I could go to Williams doctor's appointment today without him as I didn't want to play chase the toddler around the office again, or stop him from turning off and on the light 50 million times.  So I tried to get him to nap early.  (Oh and while trying to get him to nap early the attic people were adding insulation and radient barrier to our attic and making lots of noise in the attic and with a "big truck" out back. He had to get up twice to use the bathroom, one of those times the diaper didn't get put back on.  He tried to escape outside while I was dealing with the twins twice (BTW he can now open doors including the door to the garage, and the insulation people chased him back inside at least twice).  Then I think he got locked in his room in timeout with no pants on while I did one more thing and he finally was quite and passed out.  This is where I found him when I was packing his bag to leave.   

The toddler that didn't want to nap

I love this photo

IMG_6352.JPG, originally uploaded by conradzone.

Despite it not being in focus....

You can find more photos here: http://www.flickr.com/photos/conradzone/

Boys in the Bassinet together!

IMG_6350.JPG, originally uploaded by conradzone.

It's so good to have all my boys!

IMG_6355.JPG, originally uploaded by conradzone.

Me at the top,William, Tommy and Micah.

Our first full day was wonderful, and just a taste of what it's like to have 3 boys. We spent most of the day at home, and I finally got a shower around 3pm when my mom stopped by.

William and Micah were both up to feed at 5am. I fed them and just as I was about to drift off to sleep again, Tommy wakes up at 7am. So he gets up and we lay on the couch together snuggling and he watches tv from my arms so I can catch a few more z's, but with the assurance he won't "hold the baby" while I sleep. Then it was 9am and Tommy had some chicken while I fed the boys again. The boys slept in the bassinet together while I tried to get tommy in for a shower, when I realized the Home heath nurse had just pulled up out front to check on William. (We have a home health nurse checking on him 3 times a week for 6 weeks or what of that insurance will give us.) So much for our shower, Tommy starts crying while she's here and gets sent to his room for the 5th time out (at least), and passes out on the floor infront of the door before I have a chance to get him again. I meet with the nurse, and she checks out William, he's great, and 7# 5oz in a diaper, (she also weighs Micah and he's 11# 12oz also in a diaper). We fill out paperwork and after she leaves I eat lunch and attempt to take a nap after feeding the boys at 1pm, and just as I'm about to drift off my phone rings, my mom wants to see the boys, so she stops by and visits and takes a few pictures for us, Tommy wakes up from his nap (dry I might add). Good boy Tommy, I shower, and we head out the door to the park. (about 3 hours after I wanted to leave.) Oh and as I'm putting the boys in a wrap to carry them out to the car One of them poops so I have to stop and check diapers again and change the 30th diaper of the day. Finally we can go, my mom helps me load everyone up, and we go to the park. At the park I realize I've got cold milk, and no way to warm it. We end up using body heat to warm the milk. (DID I MENTION I HATE BOTTLES) At the park Tommy runs around everywhere and has a GREAT time! As were getting ready to leave both boys want to eat, so I feed William the bottle that was warmed with body heat, and then after he's mostly done I feed Micah, then we pack up to go, after 3 more diaper changes at the park.

We get home from the park, and all 3 babies decide they are starving (again for the little boys), and for the first time for the 2 year old, the neighbor lady comes by to see William, and cuts up Tommy's chicken (From the wonderful meal brought to us by a friend from MOMS Club) for him while she's there, and while I'm giving William a bottle and nursing Micah. Then Rob gets home and we play swap the baby while he holds one I try to get the other one happy that's not happy at the time, because you know it's evening grumpy time for them. Then Rob heads to bed I finish comforting the boys and put them in bed, straighten the house, post to my blog and head to bed right about time for another bottle.

So GOOD to be together again!

IMG_6325.JPG, originally uploaded by conradzone.

Two At a Time!

Two At a Time!, originally uploaded by conradzone.

So happy to be with my brother again!

IMG_6334.JPG, originally uploaded by conradzone.

Guess Who's Smiling!

Guess Who's Smiling!, originally uploaded by conradzone.

Micah

William is HOME!!!!

William is home from the hospital, we walked in the door a little after 3pm today.  You can find pictures on my blog: http://conradzone.blogspot.com

Thanks so much for the prayers, and please continue to pray for William's recovery, he has a long road ahead, with lots of therapy.  He's got some shaking in his eyes still and is super sensitive to motion.  We're still bottle feeding him fortified breastmilk, and hope to try breastfeeding soon.

--
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.com

William is Home!

William is Home!, originally uploaded by conradzone.

Feedings are going GREAT!! Everything points to HOME!

William gained 3 ounces tonight from 6# 12.8 oz to 7# 0.2 oz!!!   William has been eating close to 100 or over 100 cc every 4 hours. He's been eating 113, 150, 120, 150, 90, 90, 60, 50, 120, 130, 145!!!  150 is 5 oz btw.  120 is 4 oz.  The doctor agreed after seeing how much oz he was eating Monday, that he could go home Thursday instead of Friday.  There's a point at which you gain weigh with the amount one is eating and he is well exceeding that quantity, so he will gain weight if he keeps eating that amount is what the doctor was telling me despite his 5 gram gain the night before, and he was right because tonight he gained 3 oz.  

We will be following up with a nurse at our house for 6 weeks following discharge, she will come to the house to check on how he is doing, and weigh him to make sure he is still gaining appropriately.  

I made appointments with our occupational therapist and speech therapist for after discharge  1pm on Tuesday the 6th and 1pm on Tuesday the 13th.   We have the 2 month apt for Micah and William on the 12th at 8am.

We've been given a DATE!!!

FRIDAY!!! Make that THURSDAY!!!!! After 7 weeks and 3 days, or 52 days...Make that 7 weeks 2 days or 51 days, William will be coming home!!!

Praise the LORD!!! Jumping Up and Down!!

Please pray that this doesn't change to a later date, I would just have to cry!!!  Earlier would be even better!

4/28 Babysitting for Lydia Schedule/More Help needed!

William is now on full feeds and being fed now every 4 hours.  This means my times I need help have changes slightly this week.  I've listed this weeks schedule below with where holes are.  We've been given a target of next Monday (5/5) for discharge provided his is showing good weight gain.  If he shows great weight gain then it may be a little sooner (Thurs or Friday).  I have several holes this week, and because of the change in times I wasn't sure I could fill them with people that previously said they were free to help.  So please let me know again if you can cover one of the holes, or a time when Rob is home so he can see William too.    

Mon 

12:30-2:30 Miranda (her house? will call to confirm may be too short of notice)

4:30-6:30 **someone could fill this slot Tommy and Micah**

8:30pm-11:30pm  Rob or **someone could fill this slot too Micah Only**

Tue

Rob Off  ** any help these days Tommy and Micah will allow Rob to see William too  feeding times are 9am, 1pm and 5pm and 9pm**  

8:30pm-11:30pm Kara (her house? let me know if the change in time is ok if not that's fine too)

Wed

Rob Off  ** any help these days Tommy and Micah will allow Rob to see William too  feeding times are 9am, 1pm and 5pm and 9pm**

8:30pm-11:30pm Rob or **somone could fill this slot too Micah Only**

Thurs

8:30-10:30am Rob
12:30-2:30           **Slot could be filled  Tommy and Micah**

4:30-6:30             **Slot could be filled Tommy and Micah**

8:30pm-11:30pm  **Slot needed filled  Micah Only**

Friday

8:30am-10:30am

12:30-2:30pm        Lori Shoe (Lori can you do either of these slots or both?)

4:30-6:30    ** Slot could be filled Tommy and Micah**

8:30pm-11:30pm  **Slot needing filled  Micah Only**

Saturday

8:30-10:30am

or                        **need one or more of these filled Both Tommy and Micah**

12:30-2:30pm

or

4:30-6:30pm

Any other times people could take Tommy to the park so I could nap would be much appreciated too!

Thanks so much to everyone who's helped or said they could so far.  I've had ALL needed times previously covered and it's been so helpful.
--
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.comlo

Prayers needed for weight gain

We're now on full feeds max every 4 hours, but we need to be gaining weight.  Our weight was flat tonight 3030 grams or 6#10.8 oz.  He's been taking 75, 70, 90, 130, 70, 70, 80 for he last several feedings.   To go home and to stay off of the feeding tube we need to be gaining weight.  

NO FEEDING TUBE!!!!

NO FEEDING TUBE!!!!, originally uploaded by conradzone.

If I can just keep gaining weight then I can go home too!!!

I weighed 6# 10.8oz tonight. Up 5 grams from the previous night.

The doctors also discontinued the Phenobarbital he was on.

Today

Today I'm meeting with the Lactation consultant at the hospital to try William at the Breast for the first time.  I don't have high hopes for it, but at least I'll learn how to do it in the future with him.  And also learn how to use a nipple shield.  And I'm also planning on having her check how the pump is fitting.  

Still not at full feeds :(

The day nurse said we gavaged 4 times yesterday.  (I'm not sure it that was 4 times above the 2 we're suppose to gavage, or if it was 4 total.) I think the doc was about to move him to full feeds until the day nurse recommended against it.  And today he didn't like the day nurse, every time she fed him he didn't finish his bottle, but finished it just fine for mom.  She fed him at 8am 50cc and gavaged 10cc, I fed him at 11 and he took all 60, She again fed him at 2 and he took 40cc gavaged 20cc. So also that he took 145, gavaged 60, took 80, took 80, then gavaged 60, then only took 50, 60 and 40 the total doesn't count.  Basically it comes down to that he needs to have the same person feeding him all the time, and needs to follow their schedule and eat 60 each time.  

Look ma...no tubes

IMG_6244.JPG, originally uploaded by conradzone.

Ok so I yanked them out...Hopefully we'll have them out tomorrow.

Wednesday he took 145 cc (almost 5 oz) at the 5pm feeding and they gavaged the 8pm feeding, then at 11pm he took 80cc. The night doctor said we'd be going to full feeds tomorrow (according to the report from Dr Jan).

I asked if there were any special needs for finding a sitter for William, and he said the only thing was someone who's persistent with the feeds and won't just let him go after 30cc if he pretends to be content. Other than that no real special needs.

Our corner in the NICU

IMG_6262.JPG, originally uploaded by conradzone.

We've moved to a new area that they just finished re-doing in the NICU. It's beautiful, or as beautiful as it can be for being the hospital.

William's Bed/Mobile

IMG_6264.JPG, originally uploaded by conradzone.

William Photos by Request

IMG_6260.JPG, originally uploaded by conradzone.

105cc A new Record

Yes that's right William took 105 cc then we cut him off.  That's 15 cc short of 2 feedings at once, or close to 4 ounces.  Then at the next feeding he was comatose, wouldn't wake up, wouldn't suck, slept right through his diaper change.  So he was gavaged and then at the 5am feeding he only took half.  Took 65 at the 8am feeding, but then only took 43 at the next feeding.  Minimum he needs to take 50, and max is his limit.  

The doctor said he may move to full feedings on Thursday or Friday.  He's getting 6 a day now, and not doing so well on 1-3 of them a day, but doing great on others.  He needs more stamina, and needs to follow their schedule.  So please pray he'll cooperate so he can come home.  Also we still need to be gaining weight good.  He gained 5 grams the day before yesterday and yesterday only gained 20 grams.  He's up to 6#7.9oz, but needs to gain a little more than that each day.  

I'm beginning to check into childcare for all 3 kiddos for when I go back to work, so if you know of anyone send them my way.  I posted to the lists where I found the first two, and have a potential that doesn't live in the right direction, but it may end up working anyway because we only have one car that will fit all the children.  I'm also looking into sitting services that can come to the house and watch the kiddos.  Also it depends on what will work for William too.  And I'm not sure what we're looking for exactly because I don't have William home yet.  

Some of you have asked how Tommy's doing

IMG_6246.JPG, originally uploaded by conradzone.

Other than having a hard time that Mommy has to leave so much he's been doing well. Here's what he want's to do most of the time with the baby. "Hold the Baby". This is Baby Micah. I really wonder how it's going to be when William is home.

Re: Babysitting Help needed.

Thank you so much to everyone who was able to help out this past week.  I was able to fill the schedule for every slot I needed.  Unfortunately He's not coming home this week, maybe next, so I need to fill the schedule for next week Mon-Fri twice a day (1 day time and 1 evening again).  So if you can help out for next week please email me.  (I will email you back if I can use you, and be as specific as possible).

Thanks,

Lydia (And the Conrad Family)

On Thu, Apr 17, 2008 at 4:13 PM, Lydia Conrad <doula@conradzone.com> wrote:

My MOMs Club has been so helpful the past two weeks.  THANKS AGAIN! But now it's time for me to ask others to help too.  I'm trying to set up another week of babysitting for myself so I can spend time with William at NICU and work with his therapists. He is doing well and has started taking some milk from a bottle so surgery may not be necessary.  I like to make it up to the NICU for two of Williams bottles or feedings a day.  He gets bottles at 11am, 5pm and 11pm.  So here's when I need help:

Day Time:

3 possible shifts during the day:  (If you can help longer times that is welcome too.) This is Tommy and Micah and either your house or mine, and you are welcome to bring your kids too.  I live in Plano at Spring Creek and Custer.

7:30-9:30a

10:30-12:30 ** Most Needed

    4:30-6:30 

 

Evenings:

This would be babysitting Micah at your house or the hospital. I can drop Micah off at your house if you live near her or the hospital (I'm at Custer and Spring Creek, hospital is 15th and Coit).

Start time: between 9 and 10 pm
End time: about 12:15 am

Let me know when you're available next week and I'll put together a schedule. Please be as specific as possible about your availability/best times. Just one shift is enormously helpful. Also, it doesn't matter if you don't know me - I'm very is appreciative of the help. Also include your contact information so I can confirm with you the day before/day of.

--
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.com ** More details of Williams progress can be found on my blog.

--
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.com

Rob Feeding William

Saturday and Sunday

Saturday's Plan was to nipple 6 feedings in a row.  On feeding 4 we only took 30cc and then gavaged the rest.  5pm we took 32 fortified and was fighting it so we finished 30cc in 10 min of unfortified milk.  Sunday the goal is to nipple 3 break and then nipple 3 again.  Williams weight on Saturday was 6#3oz.

Sunday we gavaged the 5am and nippled everything except only 30cc of 24 cal fortified milk at 11am, and gavaged the rest of that, then we nippled everything else for the day (but after the 11am feeding we changed to 22 cal fortified milk. (Breast milk is 20 cal and adding one packet per 50 oz is 22 cal and 2 packets is 24 cal.) So he tolerates the 22 cal much better than the 24 cal.  He gained over two ounces on Sunday and William now weighs 6# 6oz.  Also, he nippled 70cc at the 8pm feeding (because he seemed hungry after the 60 at the 5pm feeding so we offered him some more at this feeding.  Also at the 11pm feeding he was mostly asleep, where as before if he wasn't wide awake then he wouldn't do a good job taking his bottles.  He also again too 68cc at the 11pm feeding. (50cc-60cc is the minimum for him to take, and otherwise he can take as much as he is willing to take in the 30 min.)

Saturday's Plan

Saturday's Plan was to nipple 6 feedings in a row. On feeding 4 we only took 30cc and then gavaged the rest. 5 we took 32 (fortified) and was fighting it again so we finished 30 in 10 min of unfortified milk. Sunday the goal is to nipple 3 break, and then nipple 3 again.

Changes in Plans Friday

I'm just along for the ride, apparently the doctors and William are picking where we go each day, so now it's a day by day event.  

Friday, we changed the plan to try for stamina of doing 3 back to back feedings.  So it was decided that instead of doing an 11am feeding we would do 5pm, 8pm, and 11pm.  So at 5pm Speech (Jennifer) did the the feeding, she called to report to me that he did 60 cc in 20 min.  YEH!! It's wasn't just a freek thing for Mommy.  Then I was there for the 8pm and 11pm feeding and he did 60cc in 17 min for the 8pm feeding another YEH!!!!! And at 11pm he was a little disorganized and worn out, and he still did 60cc but in 30 min still YEH!!!  They will gavage the reset of the feedings tonight and we'll see to morrow what the plan now will be.  

Also, Williams weight tonight was 6# 3.8oz (+1.2oz from last night).   

Keep praying.  The doctor Friday mentioned that he no longer needs the Fonduplication surgery, but she still suggests (depending on the weekend) the we do the G-Tube surgery so he can come home quicker.  So please keep praying he knocks everyones socks off this weekend and makes great strides forward.  We meet with Dr Lucena tomorrow to discuss the plans for moving forward and getting him discharged.  She even mentioned that he may possibly be able to discharge next week.  

Also concerns: 

a.  he's not taking the fortification by mouth (so he needs to be able to tell us how much he needs to eat, or gain weight on only breast milk feedings.)

b.  he's on medication that's given via ng-tube, he will probably need to take this medication orally, and he's hypersensitive to change in taste, the only thing he really likes in his mouth is breast milk, he doesn't even like the sugar water they have to dip his paci in.

c.  More stamina to finish more feeds so we don't need a g-tube.

In other news I met today with the occupational therapist and speech therapist that we will be working with upon discharge.  They are thrilled with the progress he is making so far, and can't wait to begin working with him upon discharge.  They saw very positive things with him today, and are confident that he will be greatly helped by their therapy, and they believe that he will be able to nurse (they will help me get him to the breast), and also help his hypersensitivity.  They worked with the conjoined twins who at two were not eating anything, and they were eating lots of stuff after working with them, and now eat almost anything.

ATTENTION ALL I HAVE AN ANNOUNCEMENT!!!!!

WILLIAM FINISHED HIS FIRST BOTTLE!!!! 60 cc in 22 min!!!! 

We are just extatic that he's made so much progress so quickly.  He just needs to finish all 3 bottles in the time allowed and they will then go to 4 bottles, then 5, then 6 and then 8.  After 8 he can come home!!!

Of course this is right after he did 15cc at his 5pm feeding (not sure what was up, they said he was tired and just didn't suck).  And Thursday morning he did 43cc.  

Also yesterday William weighted 6# 0.5 oz (+.7oz) and Thursday evening he was 6# 2.8oz (+ 2.3oz). Keep up the weight gain William!

Also, tonight I heard william let out a cry that could be heard across the room.  This was very loud for him, as he's the baby that never cries.

Babysitting Help needed.

My MOMs Club has been so helpful the past two weeks.  THANKS AGAIN! But now it's time for me to ask others to help too.  I'm trying to set up another week of babysitting for myself so I can spend time with William at NICU and work with his therapists. He is doing well and has started taking some milk from a bottle so surgery may not be necessary.  I like to make it up to the NICU for two of Williams bottles or feedings a day.  He gets bottles at 11am, 5pm and 11pm.  So here's when I need help:

Day Time:

3 possible shifts during the day:  (If you can help longer times that is welcome too.) This is Tommy and Micah and either your house or mine, and you are welcome to bring your kids too.  I live in Plano at Spring Creek and Custer.

7:30-9:30a

10:30-12:30 ** Most Needed

4:30-6:30 (Another feeding here so this is 2nd in importance)

Evenings:

This would be babysitting Micah at your house or the hospital. I can drop Micah off at your house if you live near her or the hospital (I'm at Custer and Spring Creek, hospital is 15th and Coit).

Start time: between 9 and 10 pm
End time: about 12:15 am

Let me know when you're available next week and I'll put together a schedule. Please be as specific as possible about your availability/best times. Just one shift is enormously helpful. Also, it doesn't matter if you don't know me - I'm very is appreciative of the help. Also include your contact information so I can confirm with you the day before/day of.

--
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.com ** More details of Williams progress can be found on my blog.

5pm Feeding Wednesday

Today's 5pm feeding was the worst ever!  Both emotionally for me and because it was such a step back for William. The important thing for the feedings is that they be a positive experience for William, and this one was not.  As you may recall we began adding fortify (HMF) to the breastmilk because of his lack of weight gain.  The 5pm feeding was the first with this fortifier in the milk, and the stuff stinks and according to William doesn't taste good at all.  He would take 2 sucks and then push the bottle out of his mouth with his hand arch his back and make the worst face.  I'd get the bottle in his mouth again and he'd repeat it all over again.  After about 15-20 minutes of this and almost no progress made on the bottle I was in tears.  All I could think was we were going to need the G-tube surgery just because he won't take fortified milk and refused to make progress.  At the end of it I begged to speak to the doctor and asked him if there was any way we could do breastmilk at the 3 bottle feedings and only foritfy the gavage feedings.  He agreed we could do that, so that's what we are doing now.

In much better news at the 11pm feeding he went to town and sucked and swallowed the whole time and took 57cc of 60cc in 30 min!!!! Breatmilk is BEST! At least according to William.  

I can tell now he's a super sensitive kiddo.  He startles very easily at the slightest noise, and if he's moved to quickly it really starts to overwhelm him.   

More Feeding News

Tuesday for the 5pm feeding he nippled 30cc (half the feeding again) and then at the 11pm feeding he woke up right before the feeding and I changed his diaper and he was smacking his lips and routing and ready to go.  He started sucking and kept going through the whole feeding.  After about 10 min he had finished about 30cc, then in the next 20 min he did another 25 cc and finished the feeding taking about 55cc.  60cc is the whole 2 ounce feeding.  YEH! WILLIAM!!! Good JOB Buddy!  

Wednesday, Daddy got a chance to help with the bottle.  He started off with some really big sucks and swallows, but then petered out really quickly.  He only finished 30cc in the whole feeding.  We spoke to the doctor and his weight gain for the last week has been pretty flat.  He's using more calories than he's getting and gavage feeding him they won't give him any more quantity, so they will be adding fortifyer to the milk, hopefully this will give him the energy he needs to finish more feedings and get stronger quicker.  From what I've read this is commonly needed with premature babies that don't get everything they need from the placenta during their time in the womb.  William isn't premature, but it's like he is because of the IUGR and his Low birth weight.  Low birth weight is commonly under 5.5#, and William was 4#10oz, and an IUGR baby caused by his small placenta size, so he didn't get all the nutrition he needed.

Tuesday Feeding

This morning we did 30cc from the bottle for our 11am feeding.  We were alert the whole time, but as usual we got tired at the end.  William needs prayers for increased stamina with the bottle. If he were to suck and swallow through the whole feeding like he does at the beginning he could finish his bottle no problems.  Also in other good news if he gets some at the back of his mouth and down the wrong pipe he had a great cough and is guarding his air way now.

Monday Feedings

Today we did things a little different, William was able to try 3 times today for as much as he could take in 30 minutes.  The first two times he took 30 cc and 40 cc respectively, and then this eveing 11pm feeding he only took 20cc.  I think he was warn out for the day.  I hope he does as well tomorrow.  

Also, today the doctor suggested fortifying his milk again as his gain has been rather flat.  So I went home and skimmed all the fat off the breastmilk in my fridge and combined it to make super hind milk for him.  We'll see if this works, also I'm increasing my protein intake as the nutritionist I talked to Monday suggested that.  I'm going to be trying to eat close to 200 grams of protein a day.  More fish and eggs for me! 

Williams feedings and the Power of Prayer

I really feel so blessed to have everybody praying for my little man William, and for his recovery.  I've really seen God work in his life so much already.  He's a miracle boy who was ment to be here from the beginning, everything in his life says he was ment to be here, and wouldn't be here if God didn't want him here.  Here's a little re-cap of where we've been:

0. Contractions during pregnancy started at 27 weeks and didn't result in full labor till 37 weeks, and full term.

1.  Born Breech

2.  Not Breathing at birth

3.  Small Cord

4.  Small Placenta (1/4 of the normal size of a placenta) Likely IUGR baby. 4#10 oz at birth and other twin 7# 1 oz

5.  Blue Floppy baby given CPR at birth and transported to the hospital, and intebated over night

6.  Pink upon arrival to the hospital

7.  Breathing room air the next day

8.  Slight breathing support the afternoon after, but breathing room air on own within 48 hours of birth.  

9.  1st EEG Showed depressed activity, but no seizures

10.  2nd EEG Showed improvement, but still depressed and no seizures.  

11.  CT Scan showed subdural hematoma (slight bleed next to the brain, but no treatment required)

12.  3rd EEG showed angry activity and little activity between right and left halfs.  

13.  MRI showed clot and confirmed clinical picture, but no new news.  

14.  No Gag/Limited Gag, requires G-Tube and Fundoplication surgery

15.  2nd Surgeon recommends waiting till 3000 Grams/6# 9oz.

16.  So we wait for weight gain, and begin pumping and feeding hind milk.  Weight gain prior to this not as good as expected.  Feedings are increased volume of milk given

17.  I invested in paci stock and bought several different styles of pacis, and found one that William tolerated better.

18.  Speech tried a style bottle that mimics the paci that he likes

19.  Two oral feeds a day begun

20.  And today Oral feeds increased to 3 times a day.

21.  If feeding continues to improve it is possible surgery may be avoided completely.

So the new news for Sunday is William is now being fed orally at 11am, 5pm and 11pm. Sunday he took 20 cc at each feeding.  11am was 20-25 min, 5pm was 15 min and 11pm was 10 min.  This is great news.  When I left Sunday evening I did ask for the nurse to check with Dr Lucena to see if they could also do a feeding at 5am because it really seemed to help him remember how to do the suck swallow breath thing by doing it every 6 hours instead of just every 12 hours.  

Also when I spoke to Dr Lucena Sunday, I asked him what's going on now, are we still planning on doing the surgery at 3000 grams or does the bottle feeding change that, and if so what the plan.  Of course everything depends on William and the progress he's making and continues to make, but the 3000 grams isn't a hard and fast rule, as long as it appears feeding are going to take weeks and not months to progress to full feeds, he can continue to work on feedings and AVOID the surgery!!! He just needs to now increase his strength and stamina.  He's taking 60cc for each feeding and about 1/3 of that orally 3 times a day.  This needs to increase to taking 60cc 8 times a day

Micah

IMG_6183.JPG, originally uploaded by conradzone.

Tommy fit in this box when he was newborn, I waited a little long on the picture for Micah and he almost doesn't fit, but I had to get a picture of him fitting in the box. Happy 1 month boys! Also William is 5# 14 oz and Micah is 11# 9 oz right now.

From my sister to all those helping us

You are lucky to have a wonderful family and support system around you to help you. I live in Fort Worth so its hard on a budget and with 2 small kids to get out there to be there for you. What I am really trying to say I guess is to thank all your friends for jumping up and helping were I your sister cannot. Thank you, ladies for helping her and my nephews in all this you are a blessing to her, and I appriecate all you are doing to help my sister. 

William

IMG_6175.JPG, originally uploaded by conradzone.

Tommy Story

Thursday this week Tommy was up late, and the cleaning lady was here (Yes, I couldn't live without her help during this time), so tommy went down for his nap late (or we tried) about 2pm we had our ba-ba (nursed), laid down, sang songs etc, then mommy got up to leave.  Then Tommy got up and got into everything in his room.  Finally about 3:30pm I gave up and took him to the living room and sat him in his chair, and he was asking for some chicken, so I cooked him some chicken nuggets and served him some of those, and then went to check email an update my blog, next thing I hear he's crying, so I go to check on him.  He's nodding off in his chair, his heads bobbing down and then jerking up because he's falling asleep sitting in his chair eating chicken nuggets.  So I pick him up and carry him to his room, and lay him down in the bed, and he's saying 'ba-ba', I stroke his head, and after about 3 repeats of 'ba-ba' he drifts complete off and is out cold from 4pm-6:30.  

Saturday Feedings

William is now 5#13.8 oz.  Today I went up to the hospital at about 10:30am and stayed till about 3pm.  I enjoyed an afternoon full of snuggling my little guy and giving him lots of loving.  He had his 11am feeding today and took about 15 cc.  Last night at his bottle he sucked lots and swallowed lots (~20 suck swallow combinations together)  he looked like he was doing so much better than the 15 cc volume he ended up taking in the end.  Then today he was hardly sucking and was drowning himself with every suck.  He coughed and sputtered 2 twice during the feeding once at the very beginning and then about half way through.  So his sucks were a lot stronger today during the day, but weren't very well coordinated with his swallows, or he was having such a strong suck he couldn't swallow all the liquid he was getting from the bottle.  After his bottle he slept on my chest in a wrap for a while and then woke up about an hour before his 2pm feeding.  I was planning on leaving, so about 1:30 I went to pump and leave, but when I came back from pumping it was 2pm and time for another feeding, so I couldn't pass up on holding him while he ate.  I held him and dipped his paci in milk while he sucked on it for a little bit while he ate.  (So he develops the relationship between having something in his mouth and a full belly.)  I did offer him some of the sucrose water, and he hated it, and much preferred what he was familiar with (breastmilk)  All in all it was a good day.  I stayed too long for Rob, but I really enjoyed my William time

This evening I went up for the feeding and he did great had a very coordinated suck and swallow and before we knew it in ~17 min his bottle was gone he'd taken the complete 20cc.  

Friday Feeding

Today he did 19cc (2/3 oz) at the 11am feeding and 15cc at the 11pm feeding.  

Happy 1 month birthday to my two little guys!  I'll post some pictures in the am.  

Quick update

15cc taken tonight by bottle and he sucked no the paci the whole gavague feeding. We are now 5#13o

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11am Bottle Thursday

We took 11cc Today!! It's great that this is an increase from yesterday!!!

Mavs Boys

IMG_6115.JPG, originally uploaded by conradzone.

As you can tell Tommy loves being a big brother, and Rob Loves being a dad!

Cousins

IMG_6103.JPG, originally uploaded by conradzone.

Easter Egg Hunting

IMG_6096.JPG, originally uploaded by conradzone.

Love having my baby on my back

IMG_6088.JPG, originally uploaded by conradzone.

2nd Bottle

IMG_6130.JPG, originally uploaded by conradzone.

11pm Bottle

Our 11pm bottle we took another 10cc from the bottle, and were definitely tired out by the end.  That is very encouraging as he didn't have a decreased feeding before his 11pm feeding.  

First Bottle

Today I went to the hospital to visit William in the AM as my MOMS Club group has been so wonderful to setup a schedule for me so I can go up to the hospital each day and evening.  William and I just snuggled in the chair in his little "room" with the curtain pulled around us and we napped together.  There is nothing this side of heaven quite like snuggling with your children.  After our nap OT came by and worked on our exercises, some Tummy time and neck control sitting up, and some standing.  

This afternoon I scrambled to find someone to watch Micah and Tommy (during Tommy's nap) so I could return to the hospital for when Speech was going to come by and give him his first bottle at 2pm.  She found a bottle at Target that is similar to the paci that he allows in his mouth, and this is the bottle we were going to try.  Thankfully the wonderful Mother of my Husband could leave work to come watch Micah and Tommy so I could head back to the hospital to see how the bottle went, and learn how to do it myself.  He did so wonderful with his first Bottle, he took 10cc (about 2 tsp) ALOT for a first bottle, on someone that's never had food by mouth before.  He would give little sucks, then swallows, then rest, and then repeat again.  After about 5-7 cc, speech let me try to give him some more.  He tried again for me and took 5-3 cc more.  His current feeding is 60 cc so that was 1/6th his feeding, and REALLY GOOD for a first try.  It was a lot of work for him and he just passed out after we were done.  The nurse finished the feeding gavaged (ng tube), and I rushed back home so my mother in law could return to work, and the stack of papers/people waiting for her.  

Also, while there the doctor also got to see him swallow some of his feeding, and cheer him on.  Also, because I was there I got a chance to ask speech and Dr Lucena if I could try to give him another feeding in the evening when I'm able to visit him (at the 11pm feeding).  They said that would be fine, and I'm going to offer him about 10cc in a bottle this evening.  Also, for consistency we are going to only have either me or the speech lady give him feedings for now, and after he's more comfortable, then we can have other people offer him feedings also (other people would first be the nurses, the other consistent family members that are able to visit too.)  Also the plan for now is to give him feedings at 11pm and 11am so he has consistent bottles offered at consistent times, at 12 hour intervals.  Speech will do 11am M-F and if I can do it on the weekend we'll do that, or possibly have the nurses try on the weekend if I'm not able to be there at 11am. 

More Progress

Today (Tuesday) speech met with us and we showed her the new paci and how well he did with it, and she's going to try to get a bottle nipple like the paci so he can try a bottle.  The big news for today is: she put 10 cc (one at a time) in his mouth and he swallowed every bit of it!!!  He was so alert and awake every time I visited him today, and Nana called to say the same thing about her visit with him too.  He was really moving around.  He also had 2 huge poops while I was there visiting this evening. Also tomorrow for his 11am feeding he will have much less about half a feeding, and then make it up later in the day, but this is so at the 2pm appt with speech he will be offered a bottle, and hopefully being hungry he will try to suck on it some.  Also when i went to see William today he had been moved to new digs instead of the plastic crib he is now in a big crib with rails, and a mobile.  he's also positioned where he can look out the window and see what's going on outside.   

In other news Tommy got a hair cut today (much needed, but we've been distracted with other things around here), and Micah went to his first Mavericks game.