Snap-EZ Blog

I really debated about posting that last blog entry – both before posting and since.  I’ve decided to leave it here – it’s honestly exactly how I felt and it really helped to write it out.

I tend to hold things in and put on a good front – not let anyone know I’m hurting – it’s just to painful to face up to your pain sometimes.  It reminds me of the song Twila Paris from a long time ago:

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

(http://www.youtube.com/watch?v=6Pzu-jWpcdw)

This song has been going through my head all evening – this is so where/who I am.

It also was so helpful to get in touch with my dear husband as I would have had trouble putting my thoughts and emotions into words coherently.  I’ve been crying out to God most of the evening, and He has orchestrated some really special things tonight to help settle my soul.

I was able to have a good talk with some of the nurses tonight, and that was really good for me – we didn’t really talk about Esther’s care much, just it was good to talk with them about anything at all – you know, human contact!

One things that made my day was the surprising help from the receptionist at my chiropractor, Geri – yesterday she brought me some travel neck pillows because I mentioned that when I am pumping, I get a sore neck as I can’t rest my head – she said she lived near the hospital and to call me if I wasn’t able to get mine from home – I didn’t call her (I didn’t get mine either) but she showed up with two pillows for me!  And today when I was at the chiropractors, she said that if I ever needed anything, to just give her a call – so when I wasn’t able to get the herbs I needed, and it looked like I’d not be able to get them until tomorrow, I called her and she was more than willing to go and get them for me and bring them to me!  What a blessing!

Also, I had an unexpected visit from one of my newest seamstresses – and she spoiled me with a wonderful salad (my favorite kind – chef salad), some delicious looking soup and other treats for me – it was so thoughtful!  I’m looking forward to some middle of the night good eating thanks to Kaisha!

I also had a bunch of voice mail (I left my phone where I couldn’t answer it for a while), and knew that my friends and family are concerned about me and praying for me.  I also checked for comments here and was so encouraged by the kind and caring people who posted tonight.

I feel like I’ve gotten a group hug – a great way to end a difficult and trying day.

Good night!

OK, I’m officially having a very rough day and I’m not handling this very well.  If you don’t like attending pity parties, then you might want to skip this post!

It’s day 11, and I never thought we’d still be here, let alone seemingly so far from going home!  Esther has made little to no progress today, and the pediatrician on duty is about as sensitive as a rock.

She’s doing about the same at every feed – bottle for around 20 – 25 cc’s (sometimes less), then tube feeding for the rest.  I’ve been running behind on milk  production now that’s she’s taking in 65 cc’s per feeding, so we’ve had to add anywhere from 40 – 10 cc’s of formula to each feeding – while this isn’t the end of the world, I do feel like I’m under pressure to get enough milk for her and I think this is taking it’s toll on me.

The pediatrician seems to delight in finding things wrong with Esther that would prevent her from going home – it seems to actually make him happy!  The nurse and I were talking with him about how sensitive she is to position – if she’s held correctly or positioned correctly in bed, her oxygen levels are wonderful, but if placed on her tummy or her back isn’t straight, she can’t breath well and her oxygen level goes down – sometimes really fast.  He turned to me with a big smile (like I knew there was something I could find to rule out her going home anytime soon) and says to me “she’ll never go home with a pulse-ox” (a pulse-ox is a light that shines through the foot or hand and registers her pulse and her oxygen level) and then something about how difficult they are to use/read/manage.  He even patted me on the back like he was congratulating me!  I was speachless – I’m thinking “what do you mean ’she’ll never go home’ – that is the most insensitive words a doctor could ever say to a mom – even if he did qualify it.  He didn’t even follow up with any reasurrance of any kind – just waltzed out of our little cubicle and started his report on Esther, while I sit here trying to feed her and keep my sanity.

You know, I have eyes in my head, I’ve mothered 10 children and none of them have died on my watch – I have some idea of when my baby is in distress!  You know, technology is only so good – so many times that readout has said she’s in serious stress, while she is laying in my arms, perfectly pink, breathing regularly, and is in no way in any stress – nothing replaces human observation or mother’s intuition!

I just feel so down right now – I have only had one visit today from our pastor, and that was wonderful – but I feel so alone!  It’s been days since I’ve had any friends come to visit and I’m just feeling so out of touch with reality.

I haven’t spent more than a few minutes  per day with my husband in over a week, haven’t darkened the door of my home in 8 days, haven’t slept more than 4 hours at any given day in about 7 months, and I’m not supposed to use the phone in the nursery.

Today we started trying to do some skin to skin with Esther to help my hormones, but she just doesn’t do well in any position the enables skin to skin – basically it’s nearly impossible for me to cuddle with her!

If you waded through my misery here, please pray the God will lift my spirits, give me the grace to continue on here.  I’ve been trying so hard to not look past today, to just concentrate on doing what I need to do for Esther, but right now I feel like there is no end in site and I’m no sure how much longer I can continue to spent 24/7 here with Esther, but leaving her for any length of time is like tearing my heart out.  I feel so divided between my husband, children, home and business and spending time here with Esther when she seemingly needs me so much. I just don’t know what to do anymore.

Ok, one minute at a time – feed Esther, cuddle as much as possible with Esther, pump for Esther, eat for Esther, sleep for Esther, and continue to be there for my family via phone calls.  May God give me the grace to continue this as long as necesary, yet I pray that God will miraculously renew Esther’s strength so she can breath deeply,  drink her whole feeds without the tube, and tolerate some real cuddling with her mommy!

Yo Yo diets, Yo Yo emotions, Yo Yo opinions!

New Pediatrician, new plan – maybe going home isn’t so soon after all.  The new pediatrician was not as friendly to the idea of Esther going home sooner and was not at all impressed with the idea of her going home with a feeding tube.  He did however make an exception that if my doctor was willing to do daily check ups it might be a possibility, so there is still a smidgen of hope.

Here’s that picture I promised!

Today things have gone well – she’s now had two feeds of the 65 cc’s that was her goal and they checked before the second feed and only 4 cc’s were left in her tummy from the last feeding – that is really encouraging!  She’s still only taking around 25 cc’s via bottle, but the new techniques I was taught are paying off already and she’s doing better at taking little breaks to breath between sucking!  Also she didn’t have to have increased oxygen at all during or after this last feeding session.

One other highlight for me today, was that at the last pumping session I got 77 cc’s!  That’s so much more than any other session!  Good thing too as we’ve burned through all the extra we had built up from when she was only taking 10 cc’s and I was producing more.  I really don’t want to introduce formula now as I really think it will rock and boat and won’t be as easy on her tummy, so I’m pumping longer to get what she needs, and taking more of the herbal tincture (blessed thistle, fenugreek, alfalfa, fennel and nettle – all grown locally and from Wildroot Botanicals!).

Another great development is that one of the other babies was discharged today, so it also freed up a camping room, so I now have a bed again to sleep on!  Sleeping on the recliner last night was just not all that wonderful – it worked, but I hope I never have to do that again!

I’d like to thank my Uncle Vern and Aunt Marylin  for so generously offering their home to me when I lost the use of the camping room – it was so helpful, restful, and I love sitting up and talking with Aunt Marylin – it helped me to calm down at the end of the day.

The timing of getting the camping room is so great as I really need to work with Esther at every feeding to strengthen her mouth and re-inforce what she’s learning as far as sucking rhythm, but sleep is so crucial to my milk production as well.

Off to go get her next dinner ready for her!

Things have been running smoothly over the weekend.  Some things are really going well, and there have been some changes that make going home seem very close!

She’s up to 59 cc’s per feeding and handling it really well.  She’ll take about 25 cc’s from the bottle, and then the rest she gets through the feeding tube.  Her stamina is improving with each feeding, and that’s very encouraging.  She needs to be able to handle only 65 cc’s before going home, so we are really close.  We are increasing her feeds by 3 cc’s per feeding, so with her 12:00 feeding today, she’ll acheive that.

She still needs some oxygen, but it’s the smallest setting they have.  As her stamina increases, her needs for the oxygen decreases – yesterday we had to increase her oxygen at the end of every and leave it elevated for a while, but today we didn’t have to increase her oxygen at all for her 6 am feeding.

Yesterday, our nurse, Stephany, suggested I read in the book I received on Down Syndrome to see if it talked about the type of struggles Esther has with feeding and oxygen needs.  I found in the book that these babies do much better with “on demand” feeding as they’ll suck better if they feel hungry and are fresh from waking up.

I had a consult with the pediatrician that was on duty yesterday, and discussed “on demand” feeding, as she was starting to wake up before the scheduled feeding time and was hungry.  I’d sooth her with the binky, but then by the time it was feeding time, she was worn out and would have a bad time with the feeding.  So he agreed that she should be fed when she woke up, or at least every 3 hours if she didn’t wake up on her own.  During the night if she is really sleep well, we decided it was best to just do her entire feed through the feeding tube so she could get the rest she needed – this is usually at one of the early morning feeds – midnight last night, 3 am Sunday.

She’s doing much better with the on demand feeding so I’m really pleased that we were able to move in that direction.

I also talked with him about bringing Esther home with her feeding tube and possibly oxygen as I can easily work with those and being home will be so much better for both of us – the nursery now has 2 sets of preemie twins, plus 2 other preemies, and one more baby who’s on anti-biotics – it’s so busy in there and the quiet times are few and far between – this morning there were two babies who were basically screaming from 4 am until 6 am – not very conductive to good sleep, if you know what I mean.

We also had a session with a speech therapist.  I really like her, she was sweet and very informative.  She worked with me on how to hold Esther during feedings in order to maintain her posture, support her head, help her establish and good sucking rhythm, teach her to stop to breath, and later in the feeding to encourage her to continue when she’s getting tire to help build up her endurance.  I also learned how to work with her sucking on my finger to teach her to use her toungue properly to prepare for breast feeding when she’s stronger!

This morning’s 6 am feeding sent really well – she remained awake through the entire feeding, taking 32 cc’s by bottle and the rest with her feeding tube.  She was actually still awake when she was all done even!

My energy level is improving now that I’m taking prescription iron, and my blood pressure is beginning to respond to the meds as well.  I’m so sleepy from sleep deprivation (I have to pump every 3 hours all day, and 4 hours at night, plus last night I stayed here all night and slept in the recliner so I could work with her at every feed if she was awake).  I fall asleep whenever I slow down – like waiting for my laptop to start, during pumping, during feeding, burping – it’s like I’m narcoleptic! I think it will take me weeks to catch up on sleep once I get home!   My feed are still terribly swollen, so I’m going to see if there’s anything my doctor can do for that – if I don’t allow my feet to rest (ie bend them in any position for a few minutes), my toes go to sleep – one of my feet feels bruised from the swelling, but I’m not sure that it’s bruised, it just feels that way.

I left my camera in the room when we left (we have to leave the nursery during shift change), so I’ll add the latest photo of her a little later today.

Thanks for all your prayers – I really appreciate it so much!

And what a week we’ve had!  She’s come so far, but has so far to go yet.  Originally they said she’d be here for about a week, but here we are at one week, and we could very likely be here for another week at least.  This is discouraging, but I’m trying to concentrate on her progress.

I wasn’t able to post yesterday as I had a terrible migraine, so I spent all my free time napping and resting trying to get rid of the headache.

Esther had a good day – she’s still off biliruben lights, she is also out of the isolette and in a regular (huge) crib now.  She’s been holding her own heat pretty well, but we’ve figured out that like many of her siblings, she doesn’t tolerate synthetic fibers – we were given a really cute hate, but it’s acrylic and she starts to really heat up, sweat, and even breathe really fast.  So we are going to stick with cotton hats for her!

Now that she’s in a regular crib, she gets to wear cloths and we can hold her as much as we want!  Yeah!  She does so much better if she’s nearly verticle, so they’ve got a special thing attached to the crib that wraps around her and holds her in place against the inclined mattress.  She’s surrounded by her new stuffed animals and is loving it.

Her new IV ended up having to come out yesteday afternoon, but it was decided to concentrate on getting her feeding going and not use the IV anymore – so far she’s doing great!  She was at 35 ccs all day yesterday, and today, we are going to be upping her feeds by 3 ccs every other feed – if this goes well, she’ll be at the level she needs to be in order to go home in about 3 days.

She still is getting a tiny bit of Oxygen, but it’s really minimal.  We use the feeding tube if she tuckers out before getting her whole meal, or if she’s sound asleep at feeding time – this is working really well for her.

So today’s prayer needs -

Esther tolerates the increase in feeds, her biliruben continues to decline, and her need for Oxygen continues to decrease.

That my feet stop swelling so bad, my blood pressure responds to the meds, my iron level goes up quickly, that my millk supply increases to meet her needs, and that I can get the sleep and rest I need (I lost the camping room, so I don’t have a bed to nap in – I was booted out yesterday evening, so I ended up sleeping at my Aunt Marylin’s home – what a blessing to not have to drive all the way home when I’m so tired – 10 minutes instead of 30 is good!).

An hour of good sleep, a good feeding (she still needs some oxygen, but the feeding went smoothly), weight gain (she gained over 2 ounces in 1 day!), and a great pumping session can make things look so much better!

I slept very soundly after crying out to my Heavenly Father  and finding His tender mercies.  It must have been very good for me as I produced about 20%more milk in that last pumping session than any other – and it was about 1/2 hour less time between sessions!

Time for more good sleep! 3 am is just 1 1/2 hours away.

Today was not a good day for either of us.  Her oxygen levels kept dropping during and after feeding, so she’s had to have blow by oxygen off and on all day.

The pediatrician decided they should take a second look at her heart and lungs, so she got exrays and they did another live feed video/ultrasound to Children’s Hospital (in Seattle) after making sure I understood that this might mean that she’d have to be transported down to Children’s if they found anything they had missed the first time or if anything had developed since the first one.

She did great through both the exrays and the ultrasound and both didn’t show any problems (there was a hazy area on one of th exrays, but nothing conclusive so they’re going to do another set tomorrow just to be sure).  After all that they let me cuddle with her and all the stress was just too much for me – the tears came then.

My feet have been so swollen and starting early n the morning I began to have a really bad  headache, so I had Daryl bring down my blood pressure cuff – guess what??  My blood pressure is way too high – the first reading this afternoon was 157/97.  So we (the nurses and I) decided it was time to contact my doctor. By 5 pm I had blood pressure meds in hand and I’ve taken one dose so far.  My feet/ankles/lower calves are still really swollen – so bad my ankles barely flex and the skin on the top of my feet is stinging.

Everyday at 7 am and 7 pm there’s a shift change and us moms get kicked out of the nursery for about an hour.  I got talking to Daryl and stayed away for an hour.  I got there and Esther had had a crisis already!  I HATE shift changes!  They were all nurses who had never cared for Esther and right away one nurse noticed that Esther’s IV had blown and her hand was all swollen – so they had to remove it – she had been fussing and of course through all that she got stressed.  Once they had the IV removed, the nurse put her on her tummy!  Ack! Twice she’s really stressed by being on her tummy and all her nurses knew to not put her on her tummy!  She now has a sticky note on her isolette that says “No Tummy!”

So the nurse called the pediatrician and without looking at her charts, the pediatrician decided that Esther should discontinue feedings completely.  Needless to say, I was very disconcerted over this developement.

I stayed with Esther while they got another IV started (only took three times – man that was really bumming me out, but Esther did really well, hardly cried at all and her Oxygen levels stayed high even!).  Then I requested to talk with the pediatrician and after reviewing Esther’s day with the pediatrician, she decided to allow feeds to continue at the same volume, but really watching her Oxygen levels and then they’ll re-evaluate the situation in the morning.

She took her next bottle easily, but did need more blow by after the feeding (it’s still going right now) – but man I’m sure she’s more than a little stressed – I am I know that!

Also, the hand that had the IV in it is soooo swollen and red and she reacts when it’s touched -it must be very painful for her.  I’m so afraid the skin will spit of something – I rubbed breast milk on it after her feeding and asked the nurse for a cold, wet washcloth and held that on her hand for about a half an hour – I’ll do that again at her next feed.

So I’m really low tonight – soooo tired, my feet hurt, my milk supply isn’t increasing anymore,  I feel like I’ve been on full alert all day and I can’t take anymore at all tonight, and I feel so alone – it’s too late to call anyone to talk – I’ll be talking with God until I fall asleep, but now there’s only 1 hour until her next feed – I’m sooo tired!

If you are reading this tonight, please pray that she’ll have a very quiet, uneventful night, and that I’ll get some good sleep (well good 2 hours naps anyway) and that tomorrow will be so much better than today!

Esther is doing better in some areas, but having a few setbacks in others today.

I got a wonderful picture of her during her wide awake time early this morning – she only opens her eyes nice like this when the lights are low, so the picture is a little grainy, but I just love how she’s just locked  on to looking at me (I was holding the camera away from my face so she’s stay looking at me)

She’s been off the biliruben lights for nearly a day now, and her numbers this morning looked good still – so she doesn’t have to have them again yet.  So that’s good.

She’s also had her feeds increased from 10 cc, to 24 in 3 cc increments each feeding.  She’s doing well with the feeds – no gas, no spitting up, digesting it all between feedings.  She didn’t successfully breast feed last night, but she tried and we were able to easily get her full feeding finished with the bottle.

I stayed here overnight, so I could help her at her feedings, try to breast feed if possible, and I slept in the camping room and I actually slept quite well!

She also pooped in her diaper after taking 2 days off from that activity – they were just beginning to worry about that one, but she put their worries to rest.

Her set backs are that her oxygen levels go down during and after her feedings.  She starts breathing shallow and quick.  We gave her some blow by halfway through her 6 am feeding and that allowed her to finish her bottle.  But she was hovering around 90% (they want her above 96%)  nearly all morning with very rapid breathing at times (she’s usually around 50 – 60 breaths per minute, but she was hitting 90 – 100 at times.

She just had her 9 am feed via her feeding tube as she was sleeping soundly and still had low oxygen levels and they didn’t want to stress her. While she was getting her feeding, she dropped down into the 80s again, so she’s got blow by going in her isolette – it’s brought it up to 97, but her respiratory rate is high again, off and on.

We are thinking that with her tummy full, she’s having to work harder abdominally – hopefully.

I got my blood tests back and I’ll be going on prescription iron as my count is really low.  I’m feeling better for the most part, but my feet are really swollen and I’ve got a bad headache since early this morning – Daryl’s bringing down my blood pressure cuff so I can see if this is a blood pressure headache – feels like it to me.

So, here’s today’s prayer needs:

Esther – that she can maintain the higher feeding levels, and get back on track with her oxygen levels and not need the blow by.  That her biliruben levels will continue to drop to normal (any elevation causes babies to be tired and it might help everything).

Myself – that this headache will go away, the swelling in my feet will go down,  and that I can get more rest between feedings.

And I just want to say that I feel so surrounded by love and prayers – it really helps especially when I’m tired and feeling a little lonely.

Esther has made great improvements today!   She’s currently off the bili lights – they check her stats again tomorrow to make sure they don’t go back up again.

She’s also successfully done 2 feedings exclusively direct breast feeding with the aid of a shield – this worked so well.  Her last feed she was too sleepy – she suckled, but not enought to bring in my milk, so we finished with a bottle and she downed her 10 cc’s in less than a minute – still sucking when the bottle was empty!

Now I get to hold her for as long as I like during and after each feeding – usually I end up having to go to the bathroom and that ends our cuddle fest!

I got this beautiful picture just after her first successful full direct breast feeding session – I think it made her day too!

She slept so peacefully just like that, tummy to tummy with me, for nearly an hour – struggle free breathing and so relaxed – it even put me to sleep – at least I dozed off a little I think!

I’m hoping to talk with the pediatrician yet today (she hasn’t even check on Esther yet) to see why they aren’ increasing her feeds, as I’m sure she’s wanting more than the 10 ccs they are limiting her to.  She has to be at 75 ccs per feeding to get home and that’s a lot more the 10 ccs!  I actually got 40 ccs on my last pumping session, so that was really encouragin as well!  Yeah!

Hoping for a great evening and good night too!

Yesterday evening was such a great evening – Esther downed her entire feeding all by herself!

It all started with a bath – she wasn’t too sure about it, but some of the time she relaxed and enjoyed the warm water -

On the left is the worlds greatest baby nurse – Delores – she’s been an angel – I’ve known her since we first moved into the area as we went to the same church for a few years, plus she’s also related to Daryl’s sid of the family!  She’s been so good with Esther, and she mothers me constantly!

So after her bath we thought she’d be all worn out, but no….she was wide awake and it was feeding time!  She downed her 10 CCs in record time, burped nicely and was still wide awake!  So I was cuddling her, and then she started rooting!  So we thought,”why not see if she’ll latch?!” – so we gave it a try and she was so into it – sticking out her toungue, rooting around – better than some of my other newborns!  And after a couple of minutes, she actually latched and nursed for a few minutes!  Praise the Lord!  What a milestone for her and me!

After that she fell sound asleep.

I actually had enough milk from my pumping sessions yesterday that they didn’t have to suppliment her feedings at all last night!  Thanks so much for all  your prayers over my milk supply – it’s definitely working!

I found out last night that they’ll want her taking 2 ounces (about 60 CCs) per feeding before she can go home, so my goal is to be able to pump that much per session as soon as possible – the last few sessions products 25 CCs, so I’m almost halfway there.

I came down to the hospital earlier than usualy this morning as I couldn’t sleep after pumpin at 4:30, and was very uncomfortable due to engorgment, so I thought I’d come down and give her the 6 am feeding – she tried to latch, but I was so full it didn’t work – but she downed her 10 CCs without even stopping, and went sound asleep!

I did find out this morning that the preliminary blood tests confirmed the down syndrome diagnosis, and later this week we’ll know more about what type of trisomy 21 she has (I believe there’s 3 types).  She’s also doing really well on her weight – she’s weighing 7 lbs 10 oz – better than they expected since it took so long to get her on feedings!

Also her biliruben counts were down and she’s close to being able to be done with the lights – maybe by tomorrow!  yeah!

One more improvement – she’s holding her body temp better – they were able to reduce the heat level in the isolette last night – they said this will continue to improve as her biliruben counts go down!

So a good end of the day yesterday, and today promises to be even better!