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   Wednesday, December 28, 2005  

Still around

I'm here, the lowercase is here, the Mister is here. We're taking some time at home trying to get to know each other and how we will live as a family.

And I am battling to make the lowercase an exclusively breastfed baby. Obviously, this is something that is not coming easily for us. I pump but get less than an ounce of milk from both breasts COMBINED. When the lowercase is nursing, there appears to be more milk than this as it runs down his face. He won't latch on. At all. I have to use a nipple shield to "trick" him into thinking it's a bottle. Occasionally after nursing, his diaper appears to be dry. It's possible that there is some slight amount of urine in the diaper, but it isn't always obvious. (This generally happens only once in a day and not every day) The NICU lactation consultants assure me that this is not necessarily a problem.

The lowercase weighed in at 4 lb 9 oz at his doctor appointment on Monday. His next appointment (his 2 month visit) is the 6th. Not looking forward to that as he has to have shots. On the 4th he has to go in to the Synagis clinic to get that shot (to lessen the severity of RSV should he contract it). Today he had a follow up with the opthamologist to test for retinopaty of prematurity. So far, it looks good. The blood vessels in his eyes are still a bit immature, so he has to be retested in a month.

And now, sleep calls.

   [ posted  @ 9:48 PM ] [ Post a Comment ] [ View Comments (7) ]
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  Comments about my post, "Still around":
first. keep in mind that I am in no way a medical doctor so ignore anything I say that contradicts your doctors. But my little guy was never exclusively breastfed, he weighed in at nine pounds at birth and twelve pounds at his one week apt and by week four was drinking 8 ounce bottles. I could not keep upwith his feeding. I think breastfeeding is important, but sometimes I think it is more important to us as moms than we realize ...so don't feel bad if you are giving your guy formula (again my baby was not a preemie so if any of this contradicts anything your NICU guys are telling your ignore ignore ignore me!) I know that I felt bad about not producing milk.....and other people made me feel bad.

Congrats on getting that guy home and Happy New year!!
Congratulatons on having him home and doing so well! You will get there with the breat feeding. Just keep doing what you're doing. It's very common for pumping not to work well even when the baby is getting plenty fron nursing. Here in the US you can rent a baby scale to weigh the baby before and after eating so you know how much he's getting. Insurance often covers it for premature babies. Maybe something like that would help you feel better about it and let you start reducing the supplementation.

I know immunizations are a hot topic so feel free to ignore me, and I really am not trying to be preachy, just posing a question. I wonder if you would consider delaying some for your son. Especially as a premie, his immune system is so delicate and they really don't know how well babies little systems handle all thoses shots at once. Some of them that they get early are for things that he has no chance of being exposed to (Hep B, Polio, etc.) so there would be no danger in waiting a little while to get those.
He just seems so little to have to go through that.

Just so you know, my own son has had all his vaccines (except varicella) but we did delay some. I did not want him to have 4 at a time.
A longtime lurker who is very excited that lowercase is still home. As far as breastfeeding, what you can pump is never a good indicator of how much lowercase is getting. And you can call your doc anytime and have him brought in for a weight check, the nurse will do it for you. Just make sure it is the same scale EVERY time, sometimes those scales can differ as much as half a pound.

Also, if the lactation consultant thinks you are doing OK, you probably are! Keep in touch with her, mine was always the best at giving me pep talks when I was feeling like things were not working. A LC can be a great support!
So glad to hear that Lowercase is still home and doing well. You sound tired though. I sure hope you are getting plenty of rest and taking care of yourself too. What you have been/are going through is very stressful and exhausting. So, be good to yourself.
Remember what I said to you a couple of weeks ago. You know your baby better than anyone. So trust yourself with the day to day issues.
I'm glad he's being folowed by a Retinologist for retinopathy. My own Retinalogist treats babies all the time.
Rest well.
Still thinking about you and wishing you greater success with your breastfeeding.

May you all have a good time getting to know each other. So glad he is home.

Happy New Year!
Keep up the good work with the breastfeeding. I am also one that found it very, very hard. I still have issues and it's been 6 months! I called the LC often... I also had to use the nipple shield - and wean to all breastfeeding... then wean off the nipple shield. It took patience and trial and error, but eventually we got there. It has never been very smooth for us - and people chastize me for worrying - but then again, they did not have to go through the preemie experience either! As another poster said, trust your gut, use the LC as a great resource, and keep up doing such a tremendous job with lowercase!
Just wanted to say hi and that I feel your pain on all of this stuff with your baby. I had twin boys on 11/8 at 34 weeks, and they had to be in the NICU for 3 and 4 weeks. The 4 weeker had to go BACK to the hospital 3 days after we got him home. He got released again after a week, but then we were told that he might have to have a transfusion on Christmas day. Fortunately he did not have to, but we have been through/are still going through the trauma of it all. Feel free to vent over at my blog any time!!! My babies are due for their shots next week, and like you I'm not looking forward to it. I'm glad your baby is getting Synergis. We are currently having problems with our insurance covering it. They gave them the first shot in the NICU, and now that they're out the insurance won't permit continuing it. I'm a wreck over it- the last thing they need is RSV on top of everything else! Well, good luck and I'll check back in soon.



   Thursday, December 22, 2005  

Home again!

The lowercase has been released (again). We have been home for ten minutes. Thus far all is well.

I am a bit on edge and trying really hard to not become a crying emotional basketcase. It is just so scary.

We have no indication of what caused the temperature drop other than the fact that he is little. Everything else checks out alright.

Will try to post more soon. Now? I'm going to try to get some rest.

   [ posted  @ 4:46 PM ] [ Post a Comment ] [ View Comments (8) ]
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  Comments about my post, "Home again!":
Ten minutes is an awfully long time when you a new mom! Congrats and festive holiday hugs to the lowercase
Right on!!!
Wonderful news! Give lowercase a hug and kiss from his "Auntie DackelPrincess!"
Congratulations!!!!

It is hard and it is scary... but that's what makes you mom!
Welcome Home...Again! He really is a fighter and you know what to do to help him if he is in trouble so no worries. I hope you get that rest and you can all settle in for the holidays as a family in your home.
I know it's stressful for you but I am so happy! Stay warm, little buddy - you have so much love wrapped around you.
Sorry I've been MIA. Catching up with you and saying Congrats on little W coming home. May this be for good.
Yay for being home! Big hugs and kisses and warm and toasty thoughts.



   Sunday, December 18, 2005  

Update on the lowercase

As of this morning he continues to eat well. He responded well to his blood transfusion. He is keeping his temperature up, though he is wearing a onesie beneath an outfit, a knit hat (thanks Jen!) and one of those fleece sleepsack things while swaddled in a recieving blanket and covered with another blanket (Thanks Julie!).

As of rounds yesterday, there was nothing growing in the blood culture, the spinal fluid culture or the urine culture. His bloodwork continues to be normal. He is showing no signs of any infection.

Which leaves us to wonder why his temp dropped so significantly. Our neonatologist posits that this is his one issue of prematurity. He never really had any of the problems associated with being born so early and has been a textbook best-case scenario. Even with this, she swears it is nothing wrong and that he is still doing far better than most. It's just going to take getting some fat on him to help keep his temp stable. The added stress of a new location with no sights, sounds and smells may have been part of what triggered the drop and once cold, he was too tired to move around much which would have generated heat so he got colder and was less able to move -- you see the major downward spiral there.

I don't know when he's coming home again. To be honest, I'm very afraid to bring him home now. Very. I just don't know how I'll get through that fear, but I don't think I have to worry about that just yet.

I spend my entire days in the NICU but will try to post again tonight or tomorrow.

   [ posted  @ 9:15 AM ] [ Post a Comment ] [ View Comments (8) ]
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  Comments about my post, "Update on the lowercase":
Fear is good because it keeps us on our toes. I hope you get to try again soon.
Poor little lowercase. I hope he gets to make it home in time for Christmas, that would be the best gift of all.
Hang in there, and keep yourself healthy.
Hopefully it was just adjusting to a new place and he can be home for Christmas...Prayers for your whole family. Take care of yourselves too, you'll need it.
Have faith. This is just a temporary setback. The big picture says you will have years and years and years with Lowercase at home!! :~)
Damn. I'm so sorry you had such a scare and that the lowercase is now back in the hospital. But it's also reassuring to know that he's doing better. His coming home again would make one mighty fine present.

Thinking of the 3 of you....
My thoughts are with you sweetheart. Poor little guy.
I hope he's home again soon... hang in there!



   Saturday, December 17, 2005  

The lowercase's return to NICU

I am drained. I don't even think I got a chance to post yet that he had come home. My son was discharged on Thursday around noon -- by the time we completed all the paperwork and had packed and loaded all of his things, we got home at 4:00.

Thursday night he didn't sleep. He was afraid of everything, including lying in his bed. Every time I would lay him down he cried. He wasn't sick, he wasn't hungry and his diaper was clean. He just wanted to be held. So, I held him all night long. And it was glorious. I wish I could do it right now.

Friday morning he was great, but at his noon feeding he just didn't seem to be sucking as vigorously or for as long as usual. And most of the milk was flowing out of his mouth and down my stomach -- essentially I was being used as his pacifier. We changed his diaper and it was clean and dry except for a little bit of yellow from his circumcision. That scared me because I feared it was infected. I took his temperature and kept getting readings in the 96-97 degree Farenheit range. I called his pediatrician. They wanted him to come in.

He cried and cried at the ped's office because he was hungry. Finally after he'd been examined and determined to be fine if a bit cool, I nursed him there (3 pm). The ped. called the NICU to discuss his low temp and did a quick white cell count -- completely normal. The NICU and the ped decided he just probably has a lower internal thermostat.

The lowercase fell asleep in his car seat on the way back home. We left him there so that we could eat something and then I left him in the care of his dad while I took a nap. When I woke up, he was still conked out in his car seat -- both of us were afraid to wake him since he was sleeping so peacefully. We had tucked an extra blanket around him and we felt that he would be fine there.

At 7:00, 4 hours after he'd last eaten, I decided it was time to wake him up to eat. Since he was so tired, I knew he would have to have a bottle as that's less work for him than breast feeding. His skin felt like ice and I was worried but decided to bundle him (swaddled in a recieving blanket and then wrapped in a very warm fleece blanket) to feed. I changed his diaper (wet!) and he didn't fuss. Now, my son has screamed from the beginning at diaper changes. He HATES it. I was (obviously) concerned. I could get only one ounce down him and he was asleep through all of it. And he didn't feel any warmer. If anything he felt colder.

I tried to take his temp with the pacifier thermometer, but it wouldn't read (I don't know if it doesn't go very low or if he has to suck it to make it work and he was just too tired acting to suck it). I took an axillary (under the arm) temp and got a very low reading -- 94.6 degrees F. I thought it must be wrong but knew it wasn't because he just felt so damn cold.

Before calling the ped's office, I decided to do a rectal temp since I knew they would ask me to anyway. It was 94.7. I called them and began prepping his car seat and diaper bag for him to go to the hospital. The doctor called me and said to leave immediately for the emergency room and said she would call ahead to let the NICU team know we were coming in.

So far, they have drawn blood for blood cultures and complete septic workup. They have taken urine. They have done a lumbar puncture to do a culture of the fluid surrounding the spinal cord and brain (looking for possible meningitis that could cause this). And he has had a blood transfusion -- his hematocrit was low (22 when it should be 30) so they needed to up his red cell count.

He's on all the monitors and in an isolation room (all infants who have been home have to be in isolation from the rest of the babies in case they carry something). He's doing great, eating like a champ, and just hanging out. I on the other hand am in hell.

I haven't slept much since he got discharged. I have eaten even less (first because I was so busy and excited and nervous; now because I am so worried that every time I even look at food I feel sick and if I eat it, I fear I will vomit and I know I will have diarrhea [too much information, I know, but I don't care]). Since Thursday I have eaten 1/2 of a sandwich, about 3/4 of a personal pan pizza and one bread stick, and one chicken nugget and a bite of a french fry. I haven't really slept -- maybe 5-7 hours in all that time.

Please...whatever you do when you're in need...do it. Pray for us, think good thoughts, do whatever it takes. I need my son to get through this and be healthy again.

   [ posted  @ 9:27 AM ] [ Post a Comment ] [ View Comments (10) ]
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  Comments about my post, "The lowercase's return to NICU":
Hi, I am a lurker here. I just wanted to send some positive thoughts and a prayer for your son. I can't imagine how scared you must be. If anything try to eat a little bit, your son needs you to be well.
I hope he gets better soon.
Ah but yet another lurker here letting you know that I'm sending up prayers for the little guy, you and your husband. I can't even imagine how you must feel right now on this roller coaster.
Okay, Sweetie. Here is a big Cyber-Hug for you! I know it's hard, but don't give up. Have faith. This is just a little setback. Keep telling yourself that. Soon Lowercase will be warmed up and back to 'normal'.
You know I am praying very hard. But remember too, that God loves the littlest of children, best of all. SO I know he is watching out for your boy!
Just wanted to say that I am thinking of and praying for all three of you. I'm sorry that he had to go back in, but I'm glad to hear he's eating OK. Hope it's a short stay and you're all able to be home together again soon.
Another lurker coming out to give you best wishes. I will be praying for you and your husband and the lowercase. He is in excellent hands in the NICU -- so please focus on taking care of yourself so that you are well for him when he returns home.
If I was one to send hugs and dust and all that shit, and if it meant that your little one would be fine and come home happy and healthy, you betcha I would.

Instead, I know that prayers perhaps might help, and I've gotcha covered in that department.
Mrs. W. Take care of yourself, try and rest. I can't imagine how hard this is for you....I wish I knew the right thing to say but I don't...I'm sure thinking of you though.
I am so sorry that you have to deal with all of this.
Have faith in your son. He's a fighter, he's already come home with you once, he'll come home again, for good this time.
I am sending as many positive thoughts and prayers your way.
Hang in there.
Oh and eat. You can't take care of him if you aren't taking care of yourself.
Long distance hugs...
We're keeping you in our thoughts. I hope you can get some rest and eat a bit.

Lots of love coming your way....
Big hugs and lots of prayers. I'm glad he's doing better.



   Monday, December 12, 2005  

In which I realize I don't have it so bad after all

Timmy is not home yet (obviously) and we don't know when he will be. He's fine -- was checked for infection (again) and there is no evidence to suggest he has one though all of the results of the blood work/urine analysis and cultures are not in. The part that is in is all normal, so yay for that! He's gained another 40 grams putting him at 17something...which equates to 3 lb 14 oz. Almost four pounds -- only 2 oz (60 grams) to go!

The baby beside us was also supposed to go home today. A little girl. Her parents' first. She was also doing just great. And then they did a head ultrasound. She thought it was routine since Timmy was also having one. Timmy's was his 6 week ultrasound to check for neurological development and ensure there were no hemorrhages (a word I can't spell and am too lazy to spellcheck). His came back clear.

Hers was for another reason. Apparently a nurse felt her soft spot and thought it felt too "full." So...they checked it out. And she has hydrocephaly. They are doing an MRI and a CT scan tonight to determine if there is an obvious cause for the fluid buildup (a blood clot, etc.). She may have her head tapped (like a keg to release the fluid). She may have a shunt to release the fluid. Or she may have to have full out brain surgery to fix/remove whatever the cause of the pressure and fluid buildup turns out to be.

All in all, our room was a devastating place to be today. First I lost it because Timmy didn't want to eat, had dropped his temperature significantly at one point and then had to have an NG tube inserted because his food/calorie intake was not at the minimum level. Then the mom next to me found out about her little girl. And both of us felt like we had been hit by a truck by the end of the day -- so close to home, yet neither of us making it.

Granted, she was hit by a much larger, much more scary truck than I was. Timmy could still be home this week. And I know I still have much to be grateful for. Strangely, one of those things is an overly cautious attending neonatologist who will not let my son come home before he is absolutely ready.

(And in an odd bit of foreshadowing, the other mom and I were talking early in the day, long before she spoke with the doctor. And I said that I was feeling down and followed up with this gem: "Just imagine how you would feel if you were told that she wasn't coming home today after that was already a done deal." Seriously. I said that. Shoot me now. I know I didn't know and had no way of knowing and for that matter neither did the other mom, but dammit -- I wish I could go back and unsay that. I don't want that to be in her memory. I just don't.)

   [ posted  @ 10:09 PM ] [ Post a Comment ] [ View Comments (2) ]
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  Comments about my post, "In which I realize I don't have it so bad after all":
Don't be so hard on yourself. You couldn't have known.
You are both in a battle for your precious babies. And it is a battle. Prayers, good medical care and a lot of love will bring these babies home, when the time is right. Until then, battle on and don't lose your faith.
I'm praying very hard for you, Timmy and that other Mom and her baby. (the Dads too!)
Hugs!!!!
Big hugs to you and your family and to that other family too.

You are all in my thoughts.


 

Not home yet....

Quick update as Mr. W wants his computer back.

The lowercase's paperwork said he would be released Sunday. We were informed of that on Saturday morning and completely freaked out because seriously, are we really ready for that?

Then came rounds. We have a new attending for the next three weeks. She is a bit more cautious (for lack of a better word) than our previous attending. She wants to monitor his weight gain a bit longer after the change from 24 calorie formula (or calorie fortified breast milk) before sending him home.

She said Saturday the monitoring period would be "about a week." It may be less. Who the hell really knows.

He is not on any heart/lung monitors. We have begun referring to him as "Lowercase: Unplugged." So, basically he's just hanging out in an open crib, having his vitals checked at each feeding time, and being weighed once a day. He will be home sometime this week/weekend. We just don't know when. Basically whenever the new attending feels it's ok to send him home and let his pediatrician monitor his weight gain.

(Their concern with his weight gaining is due in part to his lack of body fat. Instead of gaining fat, the little guy just keeps growing longer. He is fatter than he was, but they would have liked for all of his weight gain to date to have gone to fat for insulation against the harsh winter.)

   [ posted  @ 7:51 AM ] [ Post a Comment ] [ View Comments (5) ]
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  Comments about my post, "Not home yet....":
Glad to hear that he's thriving wonderfully though, even if a bit stubborn about putting on fat. ;)

Thinking of you three, and hoping that you're able to bring him home soon.
I'm glad to hear that he's doing well and in an open crib now. Despite how frustrated you are about the delay, perhaps it's best that he sticks around for a few more days. One of the last things you want to do is end up in the NICU's "revolving door". That would be even more discouraging.
Sounds like he's doing great! I'm glad his doctor is being cautious. So much better than erring on the other side.
Wow! What do you need to do to get ready?
A few more days will give you time to get everything ready at home. Just a few more days and you'll be bringing him home for the holidays! What a miracle!



   Friday, December 09, 2005  

So little time

I don't have a lot of time anymore. There is so much going on!

We asked during rounds yesterday and it is most likely that the lowercase's homecoming day will be Tuesday. He has only two days left of his seven day countdown, however he is still in his isolette and has to be weaned down to room temperature (he currently lives in 27 degree [Celcius] and needs to get to 26/26.5 degrees). The nurses expect this to take about a day. Then he moves to the open crib. Once in the open crib they will alter the caloric content that he is taking in (from 24 cal/oz to 20 cal/oz). Again, that should take about a day. The extra two days are built in to ensure that he adjusts well to all of this and may not be necessary. The soonest he could come home would be Sunday evening, but since discharges are generally done in the mornings that leaves Monday as the earliest.

Of course a lot depends on new arrivals to the NICU. NICU capacity is 52 babies. Two pods are being renovated so there are 12 fewer beds than normal. Due to several sets of multiples, they are over capacity. (The sets of multiples: Several sets of twins; a set of triplets; TWO sets of quintuplets -- one set born by emergency c-section Wednesday night)

As of yesterday, the NICU has 56 babies (and they did 6 or 7 discharges yesterday alone!). There are two annexes -- the one we are in (developmental, prep to go home) in the pediatric ICU and another in the newborn nursery.

If the lowercase is NOT out of his isolette or weaned down on caloric content by Sunday, he will be transferred out of the NICU and into the newborn nursery (under the care of those nurses and not the NICU annex there) for a day or two so that NICU space can be freed.

One thing that has me in fear...After the Reglan was reintroduced, they also added 5 ml of prune juice per day. He now poops CONSTANTLY. Since he is so regular, they took away the Reglan yesterday. We'll see how he does with just the prune juice helping his motility and if there are problems, he will immediately be put back on the meds. GAH!

   [ posted  @ 8:42 AM ] [ Post a Comment ] [ View Comments (5) ]
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  Comments about my post, "So little time":
Sounds like the little guy is doing well! Try not to focus too much on the Reglan issue. His Gi tract is more mature than it was even a week ago - and he has to get off it at some point. Probably best if he gets off it ASAP. It sounds like he's doing well though. Congratualtions on all the good news!
This is so exciting. He is so freakin adorable I can't stand it. He is coming home soon!!!
That is so exciting. Congratulations..
Sounds like things are coming togeher. I'm so glad. Give lowercase a kiss from all his blogging admirers!
I will keep my fingers and toes crossed for you.- how great it will be to have him home a little before the holidays!



   Wednesday, December 07, 2005  

The lowercase? Coming home? WHAT???

Ok...so...I might have ovarian cysts. I had some pain, some odd discharge, so I went to my peri's office to make sure there was no infection from the c-section. They found nothing except what, by pelvic exam and external pushing, appears to be a swollen right ovary. Which of course could mean cysts. Which could really suck ass.

I went for an ultrasound today to find out what the hell is going on down there. But for perhaps the first time in my life my bladder was 100% TOTALLY EMPTY! I proceeded to down a 20 oz bottle of water and multiple glasses of water from the water cooler (one of which I spilled all over my arm and leg, the icy water soaking into the velour [maternity] Juicy-knockoff tracksuit I was wearing and leaving me feeling cold and wet for HOURS). And yet still the bladder remained empty...and I almost vomited from the excessive amount of water in my stomach.

When I got to the hospital, my darling little boy was looking as cute as ever. No. Cuter. (Each day I think he couldn't possibly become any cuter, and yet he does!) He refused to latch at the first attempt at breastfeeding and was given a bottle by the nurse. While she did that I prepared to pump. Before I did, it was time for rounds.

Now, I don't want to jump to any conclusions here, but I think my son is coming home. SOON. My assumption is based on a single comment from the attending. He said, "We're looking at discharge early next week...or possibly the weekend."

Things that have to happen between now and then:
- The lowercase must begin to regulate his temperature in an open crib (expected placement in his open crib: Thursday or Friday)
- The lowercase must continue taking all feeds orally.
- The lowercase must have no heartrate/oxygen saturation events for a complete 7 days (it has now been more than 3 days since he has had one).
- The lowercase must have his food transitioned from the fortified breast milk or 24 cal/oz formula he currently takes to regular breastmilk or 20 cal/oz formula.

I must do much more than that. I have to wash sheets, blankets, and all manner of bedding. I have to buy a lot more things (like burp cloths of which I have NONE). The things I buy will have to be washed. I have to assemble and arrange things (changing table! cradle!). I have to get the cats' litter box out of my bedroom and into the laundry room and begin seriously preparing them for the new arrival in our home.

I am more anxious now than I have been in some time. So much to do. So much to do.

   [ posted  @ 8:50 PM ] [ Post a Comment ] [ View Comments (6) ]
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  Comments about my post, "The lowercase? Coming home? WHAT???":
This is wonderful! When I was reading the other day and looking at his pictures I was thinking how great he was looking. I'll be praying that everything goes well, and that your loercase will be home for Christmas!!!
You will be great, I know it. I'm so pleased to hear that the discharge is approaching! How nice to have a holiday at home.
The lowercase....COMING HOME....oh, that is the best Christmas/Hannukah/Kwannza/Festivus present EVAH!!!! I'll keep my fingers crossed for a "W" family holiday celebration. :)
I second Sherry's comment--yippee!the!lowercase!could!be!home!soon!!!

I'm so excited for you and the Mr. and the lowercase too :-)
How exciting! Congratulations and good luck. I can't wait to hear that he's HOME!
Yeeeeeehaw!



   Sunday, December 04, 2005  

A few snapshots of the lowercase...



   [ posted  @ 8:51 AM ] [ Post a Comment ] [ View Comments (5) ]
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  Comments about my post, "A few snapshots of the lowercase...":
So cute and alert! He looks bigger, too. How is he doing with weight now?
What a gorgeous boy. And congrats on finally getting the medical professionals to listen to you. I'm sorry for the setbacks and glad to hear he's firmly back on the road to getting out.
Catching up with you. Sorry your week was so nuts but I'm so happy to hear he is ok and back on the meds that seem to be helping. He's such a cute little guy. I'm hoping now that things will progress and you can get him out of there very soon.
wow! Look at all that hair!. He is so adorable...and so tiny...wow look at those grown up hands!!
As someoen who's taken care of quite a few preemies... HE loovk *great*. Here's hoping that bringing him home will be your biggest christmas present!


 

Quick update on the drama

We have been saying to the nurses for several days that we think the Reglan should maybe come back. Saturday's nurse went on a thing about how the goal is not to medicate the kids, all medicines have side effects, he doesn't need it, blah blah blah.

I was upset and another NICU nurse in the hall asked what was wrong. I told her about the residuals and that they started about 3 days after the discontinuation of Reglan. She said, "Sounds to me like he needs to go back on it. Ride his team about it; if the residents aren't receptive to it, demand to talk to his attending. At least get them to consider it in case they haven't made that connection."

It is then time for rounds. I was holding the lowercase, so I couldn't go out into the hallway for them. I sent Mr. W out and am so glad that I did.

The attending was asking residents if there was anything that correlated with the onset of the residuals. All of them said no, that it was completely out of the blue.

Mr. W spoke up and said, "Can I say something?" Of course they allowed him to throw in his two cents. He said, "His Reglan was stopped on Sunday and his residuals started on Wednesday. Is the Reglan something we should consider reintroducing?"

Our nurse rolled her eyes at that point because didn't she just tell us he doesn't need medicine?

The attending then asked the residents what they thought a plan of action should be in terms of the residuals. They each had a different answer. He then said, "Ok, I've heard one correct answer. What do you all think that is?"

They all went through the thing of saying "me, me me!"

The attending said, "The parent has the correct answer."

Reglan was restarted yesterday. So far we have had six residual-free feedings!

I'm not willing to say yet that we're out of the woods, but it is starting to look like it. In addition, the temp on his bed has been dropped because he no longer has to send all the blood to his belly to get the digestion working causing him to be cold and then his body sends the blood to heart/brain at which point he begins to warm up a bit and then realizes he needs extra blood supply to his digestive tract....TEMP INSTABILITY! But, now? No need for that cycle and he's starting to move back to where he was before things got so fucked up. Maybe we will be in an open crib soon. And as the attending said yesterday, "It's not unrealistic to think you could still have him home in a couple of weeks."

Here's hoping he's right.

   [ posted  @ 8:12 AM ] [ Post a Comment ] [ View Comments (6) ]
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  Comments about my post, "Quick update on the drama":
Yay for nerve, backbone and advocating your own case!
Miss W, Your are really doing a great job managing your son's case. My daughter was in NICU for 10 days (peanuts right?); but I understand all too well, how it is to be the parent in this situation. Everyone around you has all of the technical information but you are the only one who is REALLY watching his every move and understanding his needs. Keep at it. Take a deep breath. He will be out and it will be soon and you will be able to exhale.
I am SO glad you did!! Great job parents!! We are proud of you!
That's one handsome boy y'all have there--and those eyes!!

Glad to hear that the attending saw the "light" courtesy of Mr. W. Hoping right along with you that the lowercase will be home in the coming weeks--that'd be one incredible Xm@s gift and one heck of a fine way to ring in the new year.
Score one more for the parents! When DD was in teh haspital I had to be there and yes parents just look harder at their kids. They are not cases. One Dr told me that Parents know their kids they love their kids and anyone that thinks a nurse can tell when something is a bit off like a parent can is nuts!

Go Mom and Dad!
Why oh why do some medical types NOT want to listen to the parents? Even though you are new parents, you are watching him and observing him more closely than ANYONE else. Bravo for standing up for your son!



   Saturday, December 03, 2005  

FUCKING HELL!

So I totally forgot I had this whole "computer" thing and it was actually attached to the "Internet" all the damn time....

We have had one hell of a week. We were doing so damn good. Breastfeeding was going better, he was finally starting to wake up and act hungry and yay for learning the things my son does when he wants food, right?

WRONG!

The lowercase gets fed every three hours, hungry or not. He has an NG tube (nose to stomach, but you're smart and know that) that he can be fed through. He also gets fed breastmilk from a bottle, generally when I'm not there. But he was NOT having that whole breastfeeding thing. He would get close to me and promptly fall asleep no matter how much he had been rooting (I think that's a myth. Seriously, the nurses will say he's rooting, but I see nothing) or how wide awake he had been.

So the NICU lactation consultant came up with a plan. Take a four hour time period. During that time, he can eat as much as he wants whenever he wants, but he can ONLY breastfeed -- NO supplementation with milk through the tube. This way he could learn that he's hungry and he has to do something about it. Makes perfect sense. At the end of the four hour period, that feed would be supplemented (or if he didn't wake up to feed at the end of it, we would assess how much he breastfed and supplement him through the tube an appropriate amount).

EXCEPT -- the damn nurse on DAY TWO of this arrangement didn't get it. AT ALL. She let my baby boy go just over NINE HOURS without any measurable amount of food. I kept saying to her "doesn't he get supplemented at the end of hour four?" and she said, "Yes." But she didn't do it. Three hours after hour four, I breast fed him again. He was starving. He fed for about 5-10 minutes, then fell asleep for a bit, but I didn't move him away because he actually NURSED IN HIS SLEEP. And then he woke up and did another 5 minutes or so of active sucking. This lasted from 4:30pm to 5:30 pm. Seriously. And then? At 6:30 pm she said that she didn't want to feed him during shift change at 7, so she'd just feed him early. She gave him 31 cc (31 ml, which is just over an ounce, but um...he doesn't even weigh 3 1/2 lbs yet, so that's a damn lot!) of milk an HOUR after the breastfeeding marathon! Which he did drink.

Do you know what happened next? My baby got BROKEN. Or at least his digestive system did. They check to see how he is digesting food by using a syringe to suck up the contents of his stomach through the NG before every feeding. He had a NINE CC residual at his next feeding. RED FLAG! They did an X-ray of his belly. The resident on duty in the NICU that night thought it looked like a strange gas pattern and worried he might be developing necrotizing enterocolitis (it's scary. I read about it in a preemie book that I have, but I'm sure googling it would be even more frightening and so I refuse to do it). So he wasn't allowed to eat and had to go on an IV and have blood cultures done to look for infection and get precautionary antibiotics. And did I mention that in all of this, the resident on call decided that it wasn't that serious and didn't bother to call and tell us this????

Seriously. DID NOT CALL US. I called at midnight just before I went to sleep like I always do because I will not sleep unless I hear that he is fine. And this is the conversation.

Nurse: Are you calling because we called you?
Me: Um....no....should you have called me?
Nurse: Um....I would have thought so...
Me (interrupting): How is my son???
Nurse: Well, we're not really sure of his status...
Me: Excuse me?
Nurse: Blah blah blah blood work, not acting like himself, lethargic, blah blah blah residual blah blah blah
Me: Um...ok.

I told Mr. W, he called back and asked questions while I threw clothes on. We then drove to the hospital. Where we looked at our boy who looked and acted COMPLETELY NORMAL for a very HUNGRY little boy who is now so damned hungry that he is too tired to be jumpin' around.

We were told that the bloodwork was normal, no signs of infections but they were doing 48 hour cultures anyway and he would be on the antibiotics until those came back clear and the IV would stay in for just a little while longer to make sure that he didn\'t dehydrate from the insane nine hours of not eating anything measurable (remember that he falls asleep breastfeeding, so he likely doesn\'t get much that way, which is what led to the initial decree of FOUR HOURS because four hours is NOT dangerous. Stupid fucking nurse!) Then we went and yelled at the resident for not calling us. She looked like she was going to cry. I did not feel sorry for her. She swears she didn't call because when she got there, she thought the nurse overreacted because his vitals were good, his belly was soft, he was very much a protesting baby when she examined him (he screams over diaper changes, stethoscopes and vitals checks where they prod his belly.) She said she only ordered the bloodwork to ease their tension, but she ordered it stat so she had to think something...

They fed him and before the second feeding? Another 9 cc residual. So that was when the X-ray came in and the unusual gas pattern and the order to not feed him. He did not get fed ALL DAY Thursday. I stayed there from 9 am until midnight. Around midnight was when they said he could begin being fed again. It made me feel better.

We also adjusted the breastfeeding plan because clearly the nurses were too stupid to handle the one we had. We'll eventually get back to it, but whatever.

Then? Another residual. This time 6 cc's. Also it had a chunk of something blue and fuzzy. It scared the shit out of me, but apparently in his rooting he managed to swallow a little piece of fuzz off the receiving blanket he was swaddled in. Still, it is not cool when you hear a resident say "What the hell is that?" I was the one who figured it out. How he did it exactly remains a mystery. But damn. He has been swaddled in that blanket while being bottle fed, so that's another possibility for how it got in his belly.

That residual led to another X-ray. The official diagnosis in all of the X-raying? He's full of shit. Not gas patterns blah blah...plain old the boy ain't poopin' enough. He used to have problems with reflux and was on medication for it. That medication increases intestinal motility so that the contents of the stomach can empty faster and be digested in a timely fashion leaving nothing in his stomach to then go up his esophagus which then caused his heart rate to drop from the pain. But he doesn't reflux anymore. The flap closing off the stomach from the esophogas developed further and doesn't let things back through like it did. So...no more Reglan. And once that was out of his system, the decreased gut motility caused him to not poop enough...

All in all, it was the whole combination of things. But he got taken off feeds yesterday at about 4 pm with the residual. The X-ray showed lots of poop. So, he got another suppository and according to his nurse, "He had a really massive voluminous stool." The X-ray following the pooping showed his system was cleaned out!

But we don't know if they will put him back on the Reglan to prevent this from happening again. I'm worried because every time they stop feeds, his breastfeeding is getting worse and I'll be damned if I have pumped every three hours for the last 4 weeks and 6 days to end up having to bottle feed him! A bottle here and there is fine, but I didn't get a "normal" "natural" pregnancy, labor, delivery, last two and a half fucking years of my life and I DESERVE to have this one thing happen the way God designed it to work! I'm a mammal -- if a fucking RODENT can do this, I damn sure can!

If they don't put him on the Reglan, then it could be quite a while of this feed, wait for the residual, get the residual, X-ray, full of shit, suppository, "massive stool", X-ray, all clear to re-introduce food and let the cycle begin again thing.

(Also, I forgot to mention that his temperature dropped to WAY low the first day of the problems because his body had to get the blood to his vital organs because it thought he was starving and now my son who was self-regulating his temp so well that he was almost to the point of being taken out of the isolette and put in an open crib now ISN"T. We have to watch his temperature extremely carefully right now and they had to turn t he heater back up on his bed and his body has to gradually re-learn the regulation of his temperature. I could cry. I have cried. I will again. And I will kill anyone who tells me that she's doing exactly what the orders say when I was there when they were written and was an active part of coming up with the plan and I KNOW that she is wrong. I seriously caved on that one because I thought maybe the doctors had altered the plan when they reviewed it before signing it into his chart.)

This completely has me thrown. Just last Saturday, one measly week ago, our doctor said he was doing so well and that it really looked like he would be coming home with us in 2-3 weeks max. Now, I just don't know. It won't be the 2 weeks...that would mean he would have to be doing perfectly well now so they could start a 7 day countdown (you have to go 7 days without a breathing/heart rate "event," be eating all feeds either from bottle or breast, and be in an open crib with a stable temp to be released fromt he NICU). Obviously, no countdown is being started today. I'd like to think by this time next week we will be in a countdown or ready to start one, but I'm not counting on it.

Another thing making me mad? A girl who was in our room (3 babies per room in an annex of the NICU...only stable babies who are nearing readiness to go home are allowed) got to go home. The mother was due only FIVE days before I was. Her baby was born at 33 weeks. They stayed in the NICU only 11 days. Here is why I am mad.

The mother smokes. She said she didn't quit because she was going to terminate this pregnancy, so why bother, right? Except that two days before her appointment for the abortion, her insurance got cancelled. Rather than go to Planned Parenthood, she decided it was "a sign" and didn't abort. I think she made the right choice but I think she should have quit smoking right then.

I also think she should have quit shooting up. Seriously. She actually talked about this openly. She didn't go into rehab until August. She now goes to the methadone clinic in the hospital every day. She can't breastfeed because of the methadone. She cried over this one day. I felt sorry for her...for you know, less than a fraction of a second. I quietly said I had to pee and would be right back. I went to the bathroom where I could stamp my feet and cry and get myself together. Because how fucking fair is that???

I did every damn thing right and I'm still in the NICU almost 5 weeks later. And she's home. With her drug addled husband and HEALTHY baby girl. She shoots up almost the entire pregnancy. I haven't even had caffeine in TWO YEARS. HOW IS THIS FAIR???????

So um...how the hell have you been?

   [ posted  @ 9:42 AM ] [ Post a Comment ] [ View Comments (5) ]
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  Comments about my post, "FUCKING HELL!":
Obviously, it isn't fair at all. So sorry you're having to go through this setback.
Glad you got all of that out of your system, reminds me of someone else who produces "voluminous"ly.
No more setbacks, I won't allow it!
Oh, wow, I am so sorry for all this crap. Pun intended, sort of. Does anything happen to the nurse who screwed up? Grr. I hope the coming week is MUCH better. Hugs to all.
I believe in God. That being said, I think the reason He lets things like this happen is because the mom is negligent in what she's done. So, he's giving this baby a fighting chance by being healthy because obviously the parents are of the negligent sort. You and Mr. W. aren't like that at all. He knows you will do everything in your power to take care of the lowercase and make sure his needs are met and he has the best you can possibly do. It doesn't help the anger and frustration, but it made me feel better to think along those lines when the same thing happened to me when my baby was in NICU.

Hang in there, Miss W. I'll say a prayer for all of you. You will be stronger than you ever imagined you could be by the time this passes.
it's just life..


 
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