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December 2008 (old ‘posts’)….

Posted Aug 27 2009 5:02pm

These are emails I sent out during Joey Cooper’s first couple weeks of life!  I am just getting them together for us and for Joey Coop so he can have all the documentation of exactly how he was treated/timeline of events!\

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12/5/2008

B   O    Y!!!!!!!!!!!!!!!!!!!!!!!!!!

Joseph Cooper Weiss
12/5/08
2:23pm
8 lbs. 8 oz (B I G    B O Y !!!!!)
21”

Little Joe was born via C-section after a few days of on again/off again labor.  His head was transverse so there was no way he was coming out vaginally.

He is having some trouble eating- he does not want to latch nor does he want to suck and his temps have been a little low.  So we are facing some challenges right now.  Please send prayers and healthy vibes our way.  We should be home Monday or Tuesday…not sure yet.  I am feeling fine and glad the surgery is OVER!

Thanks for all the labor vibes and thoughts.  Hope to see you when we are home and feeling better!

LOVE,
Brenda  Joe   Ella and Joseph Cooper

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12/6/2008

Hi All,

Baby Joe had to go to the NICU yesterday.  He still has not had his first poop and was throwing up green stuff (bile, I Think?).  He has been down in te NICU since yesterday afternoon and they are doing all sorts of tests to try and figure out what is going on.  Seems he may have some sort of blockage in his intestines, may be a meconium ‘plug’ they are not sure.  He had a xray yesterday and again this morning and the blockage is still there but it has not gotten any worse so that is good.  He is still not eating so I am pumping to try and get my milk in.  He is on IV for fluids and nourishment and is very TIRED…he loves to cuddle w/ me and holds my finger so tightly :)
So I am asking for all the prayers and positive thoughts you have, please please send them our way.  I hope we get some answers today and hope Baby Joe has a nice BIG poop!

Love,
B J E and Cooper ( Ithink this is what I am going to call him ;)

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12/9/2208

Hi All,
Update for Joey Cooper:
We have a diagnosis…
Joey Cooper has Hirschsprungs Syndrome which is a disorder of the colon.  He is missing some ganglion cells and therefore the colon stops working at a certain point.  We are not sure of the severity yet, tomorrow when they go in they will take lots of biopsies and see how much of the colon is affected.  The surgery could be very short or very long depending upon what they find.  He goes into surgery tomorrow- probably in the morning.  He wil have to have a ostomy bag for a while and then go in for abother surgery when he is 3-4 months old and around 15 lbs.  So this is step one.  We are hopeful that once he has all his surgeries he will lead a normal life and have lots of poopy diapers for me to change…..I cannot wait for the day to come when I get to change a nice big Joey Poopy diaper!!!!!!!!!!!!!!!!!!!

Please send as many prayers and positive thoughts as you can.  Keep him in your thoughts tomorrow (Wed. 12/10).

I am being discharged today, but we wil stay at the hospital until later tonight so we can be w/ him as much as possible.

Thanks for all your positive emails and of fers of help.  We really appreciate it.

Love,
Brenda

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12/10/2009

Hi All,
Well, surgery went well.  It took a longer than expected.  he went in around 12pm and was back to NICU around 4pm.  Most of that time is spent w/ him on operating table and surgeon waiting for reports from patholigists.  There was a team of three pathologists looking at every sample so that took some time.  About 30% of his colon has no ganglion cells- meaning, that part basically does not do its job.  The surgeon thought it was a little more than he expected and went a little higher than he would have liked but all and all it is correctible.  We were pretty happy to hear 30%…better than 50 or 100% which it easily could have been.  He has an ostomy that we will be dealing w/ for a few months and he will go in for a second surgery around 3-4 months from now…when he reaches 15-20 lbs or so (come on breast milk do your job!!).

Joey Coop is still incubated and probably will be throughout the night.  They give him some pretty heavy pain killers tonight and want to make sure they don’t interfere w/ his breathing.  He has a central line put in through his scalp so he had his first hair cut :(    {did I mention he has alot of hair!}.  There are an awful lot of tubes, wires, and other stuff connected to him but all and all he looks really good considering the day he had.  he is so strong and such a little fighter.

We are home trying to get in a little time w/ Ella….boy do we miss her and boy has she changed in the 4 days since we have seen her.  Tomorrow we all ‘move’ to M to be close to the hospital…we will be there till Monday and HOPE HOPE HOPE that he can come home w/ us before than….we will know more at end of the week.

THANKS for all your prayers , we felt them all.  Thank goodness for my strong husband who has kept me from completly falling apart.

love and hugs,
Brenda Joe Ella and little Joey Coop
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12/11/2008

Hi,

Joey Coop is doing well.  He is still on morphine but down to every 6 hrs and probably off it by tonight/tom morn.  His breathing tube is out….YAH…YAH!!!!!  He was asleep for most of the day and we had some great cuddle time, so did Joey Coop and Daddy.  He woke up around 5pm and was waving his arms around and staring at us.  Ella got to finally meet him today and by her third trip in she was more interested and gave him her ELMO to ‘hold’!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HOPEFULLY tomorrow we introduce a tiny bit of breastmilk ( I am pumping every three hours) and see if it goes ‘down’ as opposed to coming back up.  This is the big test….if it goes down and he starts to stool then I can start to feed him from the breast; but right o=now everything has to be carefully measured. I just hope we get to try tomorrow..the quicker we try the sooner we can come home if things go well.  So AGAIN more prayers for digested food tomorrow!!!!!!!!!!!

QUESTIONS ANSWERED:
So I have gotten a ton of questions but no time to email everyone individually.  We are at M Memorial Hospital essentially because that is where I delivered.  I went w/ a midwife practice out of West C and this is the hospital they deliver with.  We have been in touch w/ my pediatrician almost daily and he said we were in a GREAT hospital w/ a highly skilled group of specialty docs..that is why we decided to stay here and have the operation done here.  I cannot rave enough about the NICU and am so happy we were in this hopsital.  I cannot imagine ever giving birth again at a hospital w/ a ‘less than’ NICU…this was so unexpected and you just never know.

There was no way to spot this on ultrasound.  His intestines look completely normal…nothing goes wrong until the baby tries to eat.  Joey Coop had one great breast feed right after he delivered….once that was in that is when the problem occurred and he basically could not fully digest the food + the meconium poop that was trying to make its way down also got stuck.  Once all that happens then you can see the problem on Xray…but nothing ahead of time.  It is funny how we get all these tests (nuchal, 20 week u/s, AFP, etc.) but yet there are probably thousands of these ‘diseases/symdromes/disorders’ that cannot be picked up ahead of time.  UGH!

We are staying at an apartment across the street from hospital.  The hospital has two apartments availble to all patients and luckily one was free for the weekend and we were able to get it.  It is a treck to get down here during rush hour and w/ this yucky weather we are having we are lucky to be down here for the next few days.

If anyone feels like visiting tomorrow ( Friday) PLEASE call me in morning.  Because we have Ella w/ us only one of us can go in at a time (she is allowed to visit but obviously she cannot sit still so she can only stay for 5 min or so).  Today I was just sitting by myself for lots of hours so a visitor or two would be nice.  Remember we are in the NICU and it is a bit overwhelming (lots of beeping, TINY babies, nurses, drs, tubes, wires, etc) so it may not be for everyone.  Obvioulsy we can only have one person in at a time and NO children.  CAll me or probably better to call Joe’s cell as if I am in w/ Joey Coop I cannot use cell.   Also this will depend on how is night is and how we are doing in the am.

Joe is on his way back to NICU to have some night night cuddle time w/ JC and Ella is asleep in the bathroom (Merrill you can appreciate that)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  We are in a TINY studio apartment and the bathroom is pretty big so we stuck her in there so we can watch TV for a little while!!!!!!!!!!!!!!!!!!!!!!!!!!  Is that bad???????????????????

As for me I am recovering…but not feeling well at all…..it is hard to ‘rest’ from the C/S when going through all this.  BUT as soon as we are home Joey Coop and I will take at least one or two days and spend them cuddled and breastfeeding in bed…so my ‘rest’ time will come!!!!

Love and Hugs to all,
Brenda   Joe   Ella
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12/12/2008

Had a bit of a set back today.  Joey Coop has been throwing up on and off since last night.  Accding to surgeon his bowels are still ’shut down’ due to length of surgery and it may take another day or two or three for them to ‘wake up’ so we could not feed him today.  He had ANOTHER xray and everything looks good, but still shut down.

Looks like we will be here longer than I had hoped and I am starting to lose it.  All my reserves are gone and I cannot keep it together anymore so this will be the last update for a little while…..I need to find more strength and right now I am having a hard time finding any.

Thanks for thoughts and prayers.
B

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12/15/2008

For those of you who have breastfed you know there is NOTHING better……….and Little Joey Coop is starting to feed  from the boob………………….:)  :)   

He finally started pooping…I think it was fri. night into Saturday.  We had three poops overnight- all meconium- very small; then a few more Saturday.  We got to give him some breastmilk……2cc’s of breastmilk which is the equivalent of 1/2 teaspoon….yup tiny tiny tiny amount.   By Sunday he was up to maybe 5cc’s and he got to have some QUICK (20 seconds) sucking sessions on the boob…then by Sunday night up to 10 cc’s and then this morning I got the OK from surgeon to ‘go ahead and let him go’ BUT I had to wait for the neonatologists to OK ‘on demand feed’.  They Ok’ed about 20-25 cc’s or ten minutes on one boob, so we had a GREAT 20 minute feed tonight- which was some eating and some sleeping and a couple of smaller feeds this afternoon.  WOW what a treat.  He also started having breast milk poops this morning (those mustard/seedy looking poops).  Apologizing to those who don’t have kids….all this poop and boob talk must be interesting to read!!!!!

They are saying we MIGHT be discharged by Thursday/Friday or the weekend….we have to see how he tolerates all this breastmilk he is getting.  We have been moved to the ‘less intensive’ part of the NICU and that is a gift- a little quieter and a little less crowded.

Tomorrow we meet w/ ostomy nurse to learn how to care for his ostomy and we meet w/ care manager to go over supplies/insurance/etc.  Luckily my sisiter in law (thanks Jenny)is coming to hang w/ Ella so Joe and I can both be focused…right now only one of us is in w/ Joey Coop at a time and the other one is doing something w/ Ella.
GINA: I will call you in am to plan playdate for Wednesday morning…that will be so helpful and we can meet w/ ostomy nurse again- they want us to be 100% comfortable w/ changing him before we can be discharged.

We have our apartment till Wednesday so Joe is trying  to find a hotel/motel w/ apt type room as we must have a good fridge/freezer for my milk.  I bring most of it to hospital BUT need the freezer to store stuff overnight.

I am sorry I have not returned any phone calls.  I know I asked for visitors and then never called anyone back.  I am sorry.  I will eventually talk to you all…miss you all.

Thanks for all the offers for help, food, babysitting.  I would LOVE healthy yummy dinner type foods when we get home so anything anyone wants to bring over would be appreciated.
Shannon/Sharon: I will definately take you up on food shopping- whoever is feeling up to it/has time….but again I don;t know when because I don’t know when we are gettin gout of here!
Merrill: you know I was gonna ask for some XMas cookies….looks like I won’t be able to do as much baking as I usually do :(    IF we are still here into the weekend I may take you up on some babysitting Thursday/Friday IF you have time…thanks.
Jen W: your email put everything into perspective for me…thanks for taking the time to write those words…they meant so so so so so so much  :)

Debra/Meredith/Merrill-  can you research lactation consultants for me?    Right now Joey Coop seems to have a great latch and we are doing good BUT IF I encounter any problems I will need help ASAP so any names/numbers I can have on hand-just in case-   Are there any lact. cons. who have experience w/ kids who have been ‘off the boob’ for a week or so/been in NICu/etc??????  I don’t need to talk to anyone but I want to have info in case we encounter any problems.
Crystal/W’s-  been eating your YUMMY food all weekend….THANKS!!!!!!!!!!!!!
Crys- Ella loves loves loves those parmesan crisps- are they Trader Joes????????

Ella is doing good.  She loves the waiting room at NICU so that is good.  Joe and Ella have been doing little things each day…park/library/Starbucks.  She does REALLY miss home. Everyday she asks to go home and today she just says out of the blue “I miss my home”….that is making me sad.  We are trying to swing this thing as a vacation but she is not buying it.  As long as we are home in time to get her a Xmas tree and let her have a Xmas at home with ALL of us…that is my ‘long term’ goal right now.

I think I covered it all.  I am taking it one hour at a time.  Things change so quickly and I was really getting overwhelmed by stuff on internet that I was reading.  I was starting to get ahead of myself and I was loosing it.  Just trying to concentrate on little goals hour by hour.  Even trying to do one day at a time is too much right now.

THANKS again for all your thoughts, prayers and help.

Love,
Joey Coop’s parents

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12/17/2008

HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

~~~~all~~~~~~ of us!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

love,
b


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