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.   

New digs (big crib) now

Our favorite paci

Yanked out our ng tube

Baby micah first mavs game

Tommy's new hair cut

Paci Experiment

Tonight (Monday Night) I brought in paci's of all shapes and sizes.  (Ok just 2-3 different kinds)  I did this so I could try to find a paci that William preferred more than the soothie type that the hospital has, as he doesn't like even letting that paci in his mouth.  While I don't know if he sucked on it as it's hard to tell unless it's your finger and you can specifically feel him sucking, but he did let and allow the Ortho Style paci in his mouth.  He even held it in for a while, and possibly took a few sucks of it.  he also did some routing for the paci when I rubbed it on his lips this evening.  The night nurse said that he sucked on the day nurse's finger today.  Yeh! He's letting someone other than mom see him in action!  

We still need continued improvement and a stronger gag, also we need coordinated movement of the food to the back of the mouth to swallow.  And if we want to be ambitious and avoid the g-tube surgery then we also need to quickly start nippling all of our feedings.

The Speech therapist postponed Monday's 2pm appt to Tuesday, so I'll be meeting with her at 2pm Tuesday. Some topics for discussion are smaller feedings before oral stimulation to encourage him to be hungry and try, as Saturday's sucking for 10 minutes was on a feeding that was an hour late.  Maybe give him the same quantity of food at 6 feedings instead of 8.  Maybe do a smaller feeding 40cc before working with him to take a bottle.  Another topic is letting him nipple, or attempt to nipple his feeding, also possibly after a smaller feeding prior.   

Also, I do read the comments religiously, so if you have questions you want answered feel free to post a question in the comments, or feel free to email me directly too.  

Medication Levels

The doctor did check the medication levels on William and they are within range, and at the low end.  I told the doctor what I had seen, and he told me how to tell if it's a seizure, so next time I'll be looking for that.

Oh and today we are 5# 13 oz.

William Progress 2 Steps Forward 1 Step Back

Saturday when I was visiting for the 2pm feeding (ok I was late and so was the feeding), it really happened at 3pm, but William sucked on my finger for a good 10 minutes.  The best length of sucking he'd done so far.  Usually all I get is one or two sucks here and there.   

Also I got the chance to speak with the surgeon that's on-call this week.  He was younger and had much better bed-side manner than the previous surgeon.  He explained to me why he likes to wait (if they can, and in Williams case they can) till babies are 3000 grams (6 lbs 9 oz).  He's seen babies have much better outcomes, and less likely for the nissen part of the procedure to come un-done if we wait till 3000 grams.  Also he even said with the progress that William is making we will need to re-evaluate him when he gets to that weight because he may not need the procedure any longer.  His gag is becoming more and more regular, and the doctor even told me Sunday when I was visiting that he saw a gag every time he tried, that it was a medium gag, but that there was a gag.  So for now the surgeon said he was going to put down the scalpel and back away from the baby.  

In other news I noticed some jitteriness on Saturday while visiting that I hadn't seen previously, in various parts of his body, especially the eyes, and it's unclear to me if this was normal newborn immature nervous system, or if it was seizure activity, so since I was told he's on the lowest dose of the phenobarbital for his weight and he's grown, it's possible his levels are too low, so I asked the doctors to check this, and they plan to check the levels Monday am. I didn't see any of the same jitteriness on Sunday though, so that's good, but I'm still glad they are checking the levels.  

Keep praying for William to make improvement!

Lydia, Tommy and Micah and Rob in the background

William's first outfit

It fits in the length but i'm so skinny

William Gagged tonight by accident

Today(yesterday) I went and met with the occupational therapist (OT) at 11am again and the Speech therapist (ST) at 2pm.  The OT showed me the exercises she does to help William's range of motion.  She showed me some of the same things as last time, and also noticed he was getting a flat spot on one side of his head, so she re-arranged his bed and moved him around so he would work on strengthening the muscles on the other side too.  Also the OT said she was seeing more of his startle reflexes and a few others too (but I don't remember the exact ones.)

The ST sat behind me and told me how to play with his mouth and work on getting him to curl his tongue around  the finger.  She also brought a nuk thingy with bumps on it almost like a baby tooth brush, or dog chew toy.  She also said I could use drops of breast milk on my finger or object I was putting in his mouth to encourage him to suck, and for him to allow the object in his mouth.  He didn't like the nuk much, but gave several sucks to my finger, some week and others pretty strong.  

I went back this evening at 11 pm feeding to work with him some more.  He was wide awake, but didn't want to allow much in his mouth and was more easily over stimulated.  Over-stimulated for him is breathing a little funny, hiccups, looking away, a look of fright in his eyes.  When I work with him on his mouth stuff I usually try (hard) to avoid gagging him as I don't want him to associate unpleasant sensations in the mouth with eating as I usually try to do oral stimulation around a feeding.  Well this evening I was doing the normal things I do with a finger gently massaging the inside of his mouth and when I first inserted my finger in his mouth he gagged on my finger, and it wasn't that far, and as I said I try to avoid doing that.  I'm encouraged that he gagged for me even unintended.  Little baby steps of progress today were both the sucking on the finger more than I'd seen in the past and the gagging.  The speech therapist said she saw more of his stress signs today, so since she now knows his "pain" indicators she's going to try the unit on his neck that electronically stimulates the tongue on Monday.  So Monday I need to go up to the hospital around 2pm, and could really use someone that day to watch Tommy and Micah at that time (1:30PM -3:30PM)  Email/post a comment if you can help at that time (my house would be best as Tommy NEEDS his nap about that same time).  Thanks!

Cranial Sacral Therapist and surgery delayed.....

I spoke to the doctor at the hospital regarding the scheduling of the g-tube surgery.  He said that he wants William to be 3,000 grams or more before doing the surgery.  Babies who are above that weight have a lesser chance of complications. Basically, that means he needs to gain just over a pound.  He was born at 4 lbs, 10 ounces, is presently about 5 lbs, 8 ounces, and 3000 grams is approximately 6 lbs, 9 ounces.  In order to help him gain weight faster, the doctors have suggested boosting the calorie content of the breastmilk.  I'll be boasting the calorie content of the breast milk by pumping more hindmilk into the bottles that I'm giving the hospital.

Though this means that this could mean a delay in getting William home; I have consulted with a cranial sacral therapist--the one that worked with the conjoined Egyptian twins, and she seems to think from what I described, that he will be able to work with William and get enough improvement that they can avoid the fundo part of the surgery.  The only problem is that this therapist does not have privileges at this hospital, so he has agreed to go with Lydia as a "visitor" possibly next friday, they will let me know for sure on Tuesday to sort of evaluate him and show her some helpful exercises and therapies to do with him.  The therapist said he is also going to send William's doctors some research, and the doctors have said that they're willing to look at it.  While visiting me/william as a visitor of course they can't lay a hand on him because they don't have privileges, but hopefully they can show me somethings that will really help him.

As for feedings, he is presently getting 52 (or 55?) cc's through the NG tube every three hours, and in the next 12 hours, that will be increased to 60 cc's (this happened last night at 2am sorry I'm just now posting this), which is approximately 2 ounces.  

Not much news

Talked to the doctor today, they didn't touch base with the Surgeon today (ok yesterday), but plan to tomorrow (today) first thing. 

I called tonight to check on William as Rob was just to tired to watch Micah, so I couldn't go up there this evening.  The nurse said he was so awake and moving and looking around from about 8pm till about 11:30pm and then crashed hard.   

PS/Needs: 

If anyone can help watch Micah while I visit William in the evenings from about 9pm - Midnight it would be greatly appreciated (Robs back working and needs his sleep).  

Also, I need to start visiting during the day when they OT (occupational therapist) and ST (speech therapist) are working with him, so I can learn the exercises, and how I can help him.  This would involve watching both Micah and Tommy so I can go to the hospital, and needs to be between 8am and 4pm (usually only for ~2 hours with some flexibility when it's scheduled)  Would be good for it to be from 7:30-9:30 or 10:30-12:30 or 1:30-3:30 (not all of those), just one a day and would be good if it could be the same one each day.  Let me know if you can help with one of these on a regular basis (till William goes home in 1-3 weeks) or even a one time basis.

Also, things are still very stressful dealing with still having a baby in the NICU, and I'm so thankful for the meals that have been provided for our family already they have been such a blessing already.  If you feel called to provide a meal for us we certainly wouldn't turn it down.  The need will probably be greater when William comes home as we adjust to having him home, but it certainly wouldn't be unwelcome now with all the back and forth visiting we are doing.  

Meeting with Doctors & Swallow Study

The meeting with the doctors was pretty uneventful.  Most of the information discussed was not new to me as I've been meeting with the doctors daily and discussing Williams condition with them.  This was a chance for Rob and his mom and brother to hear what's going on so we can be sure we are all on the same page for the surgery.  Also, Rob hasn't been able to be at the hospital to see William so it was a chance for him to hear the update on what's going on with his care first hand as he's only been able to hear from me.   What I hadn't shared on the blog previously is the doctor really feels that cognitive/upper brain function is not affected long term, and that intellectually he feels very optimistic about William, that his movement and tone are much better.  What he said is affected is the basal ganglia function of the brain, or more specifically what's involved with sucking and swallowing.  This is the only location where the recovery is slower.  So for William to come home safely sooner he will have the G-Tube surgery with the Nissen.  They will schedule the surgery hopefully for Thursday or Friday this week, but it's dependent on the Surgeon, OR and Anesthesiologist.  William will then be able to go home approximately 2-3 weeks following the surgery (optimistically 1-2 weeks).   

Swallow Study - 

The swallow study was done, and showed several things we knew already.  He had a poor suck (we knew this).  He also had poor movement of the liquid to the back of his mouth.  He did get some up in his nose, and he also swallowed some, and didn't aspirate, but they only gave him 2 cc of fluid (60 cc in 2 oz), so he could have aspirated if they gave him larger quantities of fluid, there's no way to tell.  This gives us a base line for next time, and allows us to see he is swallowing saliva as we suspected.  

I'm encouraged to see him routing slightly more, and also trying to shift his head/body toward the breast.  He even opened his mouth this evening when I moved my finger closer, so hopefully Lord willing he will continue to improve in this directly.  

Thanks for your prayers!  It is really encouraging to me to see the comments on the blog and know you are reading, and praying.  

Here's a verse that a friend of mine shared with me at my shower that's been encouraging to me recently:

Psalms 71:6  For Thou are my mode; O Lord God, Thou art my confidence from my birth;  Thou art He who took me from my mother's womb;  My praise is continually of The.

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Tomorrow 9am = Today

BTW Tomorrow 9am in the previous post = today (I hadn't been to bed yet)..

Long overdue update.

Tommy is loving being a big brother.  He wants to "hold the baby" all the time, and he also gives tons of kisses.  Also Tommy is working on getting his room re-done to move the toys out of the room, and have the closet and dressers re-organized to accommodate the clothing of 3 boys.  Toys are moving to other rooms in the house as Tommy is moving to a big boy bed.  He had been in the play pen before now as it helped him remember that it was bed/nap time, but he has now started to climb in and out so he's now transitioned to a big boy bed.  

Micah has been home from the hospital for 2 weeks now and gained one pound in the first week. He's not due to return to the pediatrician till his 2 month checkup.  Scheduled for May 12th. Currently he's doing a lot of eating and sleeping and growing, all things a baby should be doing. Micah is nursing well, and sleeping through the night 4-5 hours at a time.

Lydia (me), I went to Lonestar baby today and bought 2 car-seats we will use these for Tommy and Micah, and they are smaller and will allow 3 car-seats across the back seat of the car.  Lydia is pumping milk for William and has a freezer full at home and the hospital has plenty too. Lydia called today and made appts for Tommy's 2 year checkup and also for William and Micah's 2 month checkups.  

Ok now for the update everyone's been looking for (William Josiah), and part of the reason we haven't had an update in a while.  It's hard to process the information when your told your child needs to have surgery.  Luckly nothing is urgently needed, so we've have had time to be angry and mad, and deal (you know all the stages of normal grief) with the fact that William will be home sooner rather than later by getting this surgery.  (Hopefully max 2 weeks, and he will be home.)  We were told last week that they wouldn't do the swallow study it's too dangerous, and that they recommended a G-Tube and Nissen Fundoplication.  The G-Tube is to feed him, and the Nissen, is to prevent him from refluxing his food, and then asperating on the reflux.  We realize the G-Tube is necessary, but are hoping to avoid the Nissen if possible, but probably not, but we've asked the doctors this week if they will do a swallow study just to verify that it is necessary, and they've agreed.  The swallow study will be tomorrow.  Based on the results from the swallow study they will proceed with the needed surgery(ies), and it will be scheduled depending on the availability of an OR/Anesthesiologist, and Surgeon.  We have a meeting with the doctors and others from the hospital to ask our questions tomorrow at 9am. I'm sure I've forgotten to explain things as I'm not posting this when the news was fresh for me, so if you feel I've left something off please feel free to ask questions and I'll answer with more details.

In other news on William:  He is doing well in his own crib and is maintaining his temperature great, and moving around more and more each day.  His muscle tone is now recovering to that of a newborn and we expect it to continue.  He is also coughing and gaging more frequently, along with sneezes too.  He's also having periods of being very wide awake and alert.  He makes good eye contact and also seems to track somethings.  His movements are looking closer and closer to those of his brother Micah, and he's improving daily.  Also today he's graduated to only having the chest probes to track breathing and heart rate, the foot probe for heart beat and O2 saturation has been removed!  Yeh! One less wire.  He's currently being fed 52 cc every 3 hours (a little less than 2 oz).    I think that's about it, I'll post more later as I need to get to bed for our meeting in the am.