Always hold your plans loosely!

Like much in life, planning ahead is often a waste of time.  Today did not go as planned, well at least we aren't going home today anyway.  She just wasn't doing better this morning.  She had put on 4 oz in just over 24 hours and she was listless, breathing hard, coughing, and her exrays showed that her lungs were wet.  So plan B was started.

I got some great photos of her playing with her toys today, so I'll sprinkle them through this blog:



She got a new IV (the original one was put in when she arrived here and actually lasted 4 days, that's a record for her, but it came out this morning, bummter), but it went really well as far as IVs go - only took one try.  She then got a dose of Lasix via the IV and she went from listless struggling sick-looking baby to wide awake, cooing, smiling baby in less than an hour - it was a remarkable transformation!  Then she had her blood transfusion started and it has gone wonderfully.  She has had no reactions, the IV is stable, and she's almost done (just 30 minutes to go).  She stayed awake for over an hour, trying to hit her toys, talking to them, moving all the arms and legs, looking all around the room - so unlike what she's been since she's been here.



Both Dr Kemna and I felt she wasn't ready to go home - I really didn't like that weight gain, and the cough really was bothering me.  I just knew if she went home as is, she'd be back here in no time.  So Esther's getting another dose of IV Lasix after the transfusion, and then back to oral Lasix.  The transfusion should really help her to not overcirculate her blood and that will reduce her body's tendency to retain fluids.  So by giving her these two doses of IV lasix, that will remove most, if not all, excess fluids, and the new blood will reduce the stress on her heart and lungs, and she should be able to maintian her fluid levels with the oral doses.



But this does show that Esther's heart is needing repair.  They are going to schedule her for open heart surgery in early January.  If, for some reason, she show great progress when she comes back for her appointments, then they can cancel the surgery, but from here it looks like it is necessary to do it sooner so it can be done while her health is good - she could decline further if the surgery is delayed and then the surgery would be harder on her.



I'm bummed about delaying going home, but I really feel that it was the right decision for Esther, especially after seeing her turn-around after the IV Lasix, which they wouldn't have given her if she was going home.



In this photo you can see her new IV - and the lines are dark as they are delivering her new blood!

One other reason to keep her until tomorrow, is to see if her cough is just from fluid retention or if she is headed for bronchitis/pneumonia - both are possibilities if the cough is from the virus she's still fighting, but if it's just from the fluid retention, then it should go away quickly.

So far she has no fever, so that is a good sign - both for cough prognosis and for her taking the blood transfusion well.  I'm so pleased with how well the transfusion is going and it's such a relief to see that we made the right decision!  Thanks so much for all your prayers!

Plans for going home for Thursday

Esther is going to get a blood transfusion tomorrow morning.  Her blood tests showed last week that she had become anemic.  Dr Kemna said this is typical of babies with a VSD, that they start to become anemic at around 2 - 3 months of age.  By giving her some extra blood, this will boost her red blood cell count, and that increases her oxygen level.  This should lessen the strain on her heart, make her breath easier, and give her more energy.  She's been looking pale, as well as sleeping more, and breathing hard. So I'm really hoping that this will give her the boost she needs to feel better quickly.

There are some risks with a blood transfusion, but the probability of it doing her great good outweighs the very small chance of problems associated with the transfusion.  They are checking her blood count one more time before just to make sure she needs it, though.  I spent most of the afternoon researching this as it was not an easy decision for Daryl and I to make, but we feel this is the way to go.

So right now they are poking her heal to get blood to check her blood count and to check what type of blood she has.  Then in the morning, if the blood test indicates that she is not improving from the new iron supplement yet, then they will start the transfusion around 10 am - it takes 4 - 6 hours to be completed and they watch very closely for any reactions.  Since she has an IV in place already, they are able to do the transfusion through that, so no more pokes, yeah!

So she should be ready to go home in the afternoon, and Daryl is driving down after work to pick me up.  We should get home late in the evening.  I'm so looking forward to sleeping in my own bed again!

Esther has an appointment with her pediatrician on Friday (the hospital set this up for me), and she also has to go in again in 2 weeks for a blood test to see how the thyroid medication is working.  Then she'll be back her at Children's on Jan 5 for all her check ups.

Thanks for your prayers, and please continue to pray for Esther that she will get stronger and that the transfusion will go smoothly and really pay off for her.

Plantar Fasciitis - ouch!

It's nice to have sisters who know a lot!  Lisa, my closest sister in age, is a licensed massage therapist and after reading my blog, she commented that she thought I had Plantar Fasciitis - and gave me this link -

http://orthoinfo.aaos.org/topic.cfm?topic=A00149#Treatments

Well, that hit the nail on the head - the described symptoms are axactly what I have been dealing with this last month.  Thanks Lisa!  So now I have done one of the recommended stretches, then iced it for 20 minutes or so (probably longer as I lost track of time) and now have my  foot up while I do some catch-up on computer stuff while pumping (Esther's taking a nice little nap).

The doctors just came by for rounds, and it is looking likely that she will get to go home tomorrow.  She's doing well over-all - just still battling sinus congestion, but I've got a home suction device that works just like what we are using here in the hospital.

So here's an update on what's happened since yesterday morning - they wanted to go on her normal at-home routine with me controlling her feeds and medications (they bring the meds to me).  She did have some problems with throwing up yesterday, but that was due to some overly aggressive suctioning with a catheter that triggered her gaggin reflex.  And then with her next feeding, I tried putting her on her left side as she's been on her right side almost 24/7 since last week as her IV was on the left side when she was in St Joe's, and she desatted (her O2 levels kept dropping into the 70% range) on her left side the first night here due to her right side being so stuffed up (the stuffiness would start to move into her left side and block both sides).  Well, on her left side, she threw up and I come to find out that babies with reflux problems tend to throw up if they are on there left side during or after feeding!  Good thing to know!

We not only got a cell phone charger yesterday, but we also got visitors!  The Donnel's came to see Esther (they also visited when she was here in October), and my brother Mark came back bringing his daughter, Vanessa, with him:


Esther even smiled at Vanessa!


She slept well most of the night - she had some trouble with stuffiness and gas at 4 am and was awake for about an hour, but then slept again until 7 am, so I had a decent night's sleep - not good, but I did feel rested this morning.

Her 9 am feed she took her bottle really well, but I think she had some air in her tummy from the all night feeds (I tried to get her to burp and also tried to brind any air out through her tube, but I just couldn't get anything out), so after taking in about 20 ccs, she gagged, burped, and then threw up most of what she had taken in.  After that she calmed down and took another 25 ccs.  She then burped nicely and fell asleep.  She just finished the rest of her 99ccs now while napping.  It's running late as I was having "issues" with the pump they use here for her - it had air in the line and just  was not co-operative - then I noticed that the bag should have been tossed and a new one used as of last night, so I had the nurse bring in a new bag and we got it going just fine then.

Please pray that she will do better at keeping her food down, and that her nasal congestion will go away soon - I just hate having to suction her out every couple of hours as she really hates it.
Oh - and I found a new use for Snap-EZ wetbags - infant visual stimulation:



And if you haven't please sign the petition that I posted about earlier today - this will affect you as it will be a huge hit to our economy in general if all small manufacturers of children's toys and clothing end up going out of business!

For more information, check out the following links:

http://mothering.com/sections/action_alerts/toy-safety-law.html

http://www.mothering.com/sections/action_alerts/toy-safety-legislation.html

Thanks!

Ruth

Please sign this petition!

http://www.ipetitions.com/petition/economicimpactsofCPSIA/index.html

In order to protect our children from the posibility of lead poisoning, they have enacted a law that will basically shut down all small home businesses that produce anything for children.  While precautions are great, this law does not take into account for products that use materials that rarely, if ever, contain lead!

There's lots of info on that page, so please take a moment and read it and sign this petition as if this law is not ammended it could really effect our already precarious economy!

Thanks!

Ruth

Things are looking good right now

Esther's breathing is back to normal most of the time and she slept through the night, minus when they weighed her at 4 am and did a heal poke at 6 am - I'm going to have to request they wait until morning to do those things.  I'm just happy she didn't stay awake (I wasn't even woke up for either of those things and she went right back to sleep, thankfully!).

Here's a great look at her new "Cindy Lou Whoo Doo!"



I'm thankful also that we got to come down here as they set up an endocrine consult - the endocrin system is things like the thyroid and pituitary gland - and they decided after looking at her thyroid test from birth to now show that she should be on thyroid medications (this is really typical of Down Syndrome), not that she's low right now, but her Thyroid Stimulation Hormone is high while her actual Thyroid output is normal. This means that her thyroid is probably compromised in some way requiring higher levels of the stimulating hormones.  While she can make things work right now, if this continues over time, this is taxing of her endocrine system and will lead to low thyroid function eventually.  By adding a thyroxine now, this will alleviate the stress her system is under now.

Also, the Dr said that DS kids who have their thyroid function managed properly have better performance mentally, and we really want her to get the be that best she can be, that's for sure!  So they started her yesterday and I have to take her in for a blood test in two weeks to make sure the dose is right (too much can make her irritable, have trouble sleeping and can tax her heart, so we need to get the right dose for her).

Here's a pic of her room - we have a great view here and we are just above the giraffes that overlook the giraffe entrance (I put up photos of these giraffes back in October).



This is really an unusual hospital stay for us.  We have a room to ourselves,which means good sleep and less in and out by the staff, but also means there's no one in here to listen to Esther (she has reflux that can really compromise her breathing and it takes a while for it to show up on the monitor, and the nurses are sometimes busy with other patients and can't come in right away - that means she could be choking and not get help for several minutes).  Also in packing to come I was unable to find my cellphone charger, so as of yesterday morning, I have no cell phone.  For me that means I have only two contacts I can reach as I can only call to the local area code.  I tried to reach my brother and was able to leave a message, but he may be out of town or working a 24 hours shift (he's a Bellevue firefighter/paramedic).  I was able to reach some old family friends, the Donnels, who were very helpful and came visiting last time Esther was here in Childrens, and they were able to reach Daryl's brother for us.  I can also sometimes get Daryl on Chat, but only on breaks at work.  Oh yeah!  My brother just got off his shift and is going to try to get ahold of a wall charger for my phone!  Aren't brother's awesome!

So this has been a lonely stay.  No visitors or phone calls, and after 3 yesterday I wasn't able to get anyone on chat either! And I've only gotten one comment on the blog (thanks Heidi! (Heidi and I were classmates from K through 12th grade - that's a lot of time in the same classroom, eh?)  I'm so glad you posted!) - quite different from when we were her in Children's before, but then again, I'm thinking most people have no idea we are back here and it is the busy Christmas Season afterall.) In some ways it's been nice an quiet and I was able to sleep whenever the opportunity presented itself, but also tough as it makes it really difficult to get my meals, take a shower or whatever - once I had just stepped into the bathroom and she totally freaked out - bells chiming, low sats, crying - not sure what happened, but I had to beat a hasty retreat from the bathroom to see what all the fuss was and calm her down before I could "take care of business".  Also, I'm suffering from severe heal pain.  I've had this going on for weeks, but was trying to "fix" it with stretches as I thought it was a short achilies tendon (I had this after Elizabeth was born too), but I just can't get this to go away.  Last night the nurse gave me an icepack for my foot and after wearing that for a few hours (it wasn't really, really cold) I took it off and I couldn't put weight on that foot at all without extreme pain!  Weird!  So then I tried a hot pack - that helped, but it was really sore the rest of the evening - and all that after taking 3 ibuprophen (recommended dose for that is 1 - 2 but it just wasn't cutting the pain).  So I requested a breakfast tray to come here as I just couldn't face the long walk to the cafeteria - so I now have my breakfast here.  My foot is doing better this morning - but upon rising anytime it takes a couple of steps before I'm can put weight on it.  At best, it feels bruised, when it's at it's worst, I start to wonder if I broke a bone in there!  I was going to go see my Dr about it this week, but for some reason, I've not been able to do that! ;)  It will be first on my agenda when we get home, that's for sure!

So put that all together, and it was a very quiet and long day yesterday!

So - update on Esther (finally) - She's back to her old self this morning, albeit stinky (I'm going to give her a bath as soon as she wakes up again).  They are going to have her go back to her normal feeding routine today to see if she tolerates it well (she's been on a constant tube feed since she got to her room).  We should find out at rounds how she's tolerating things without the sodium (they are trying to get her off of this so her dieretic, Lasix, can work better).  She looks good enough to go home, but they want to make sure she's tolerating her normal feeds and gaining good weight.  It really looks like she'll get to go home tomorrow, but I won't know for sure for a while.

Here's Esther trying to get her hand in her mouth - she's doing this a lot now - she even grabbed a cloth that was on her bed and pulled it over her face this morning! This is great hand/mouth coordination for her!


Oh - and I was able to talk with her cardiologist, Dr Kemna, yesterday, and get some more answers about the possibility of open heart surgery, and she did say that there was some indication that her hole was closing, so there is hope.  It's just a balance of how quickly and would it be soon enough as well as balancing the surgery and it's risks with the risk associated with the hole remaining open.  We also talked about switching to a stomach feeding tube - this would go right through to her stomach through her tummy - there's good and bad with this, but mostly good.  This is used for those who need the feeding tube for months as it is easier on the esophogus/vocal chords and such, and also eliminates tape on the face (which over a long time can lead to sensitivities to adhesives (like bandaids)).  It's a pretty simple surgical procedure, but surgical none-the-less.  It's easy to remove when you don't need it anymore though, so that's good.  I should hear from her about this today.  I'm hoping they'll do it since she's already been on the feeding tube for nearly 3 months already and it doesn't look like she'll be able to get rid of it anytime soon.

That's all for now - I'll try to update after rounds, and I've got a couple of posts for my "thoughts on family" column rambling around in my brain today!

Back at Children's Hospital Again...

But first a message from our sponsor - here's a photo of Esther I took the Sunday before Thanksgiving - she's all dolled up in her Christmas Dress and sporting the silk rose that the ICU nurse put in her hair long ago:



We've had a wild ride since our last update!  Wednesday she had a difficult day as far as feeding goes, not taking her bottle well and such.  By evening she was breathing faster than I liked, but not really fast.  By Thursday morning she was breathing at over 100 breaths per minute (most babies are around 45 bpm, but Esther's usually around 70 and anything over 85 is concerning for Esther).  So after talking with a cardiologist from Children's, I tried to get her into her Dr or any Dr who has seen her recently, but that wasn't possible.  I did find out that one Dr that had seen her twice since she came home was on call at the hospital so I decided to take her to ER.

We got first class ervice in ER - especially once I said that Esther was showing signs of possible heart failure and that she had a history of heart failuer - we were immediately  shown into a trauma room and people came out everwhere.  She was quickly evaulated and an IV was placed in her head (ouch!) as they couldn't find a decent vein anywhere else.  Then Dr Rosequist came in and spent some time with us and she really felt that she needed to be watched for the next 24 hours.  So she was admitted.  I was still doubting my decision to take her to ER, but not for long...we soon discovered that she had gained over 7 ounces in just 36 hours - that was definitely not a good sign) and she definitely was having problems by the next morning and they ended up changing all her meds, adding anew one and moving the lasix to IV - she really perked up after that!  Things went very smoothly after that, and by Saturday afternoon Dr Rosequist felt she was ready to go home.  So home we went (I almost got to blog that afternoon, but decided that digging through my 250+ emails was more important).  I did get caught up just before we officially got word that she was discharged and then I was packing in earnest.  Then it was rush/rush as we tried to get her new meds from the pharmacy before they closed.  We got them just minutes before they closed for the weekend!

She did fine all evening and through most of the night, but at 6 am she was breathing really fast again and really struggling with congestion and just plain working really hard.  We called the pediatric floor and Dr Rosequist was there and after discussing things with her, we all felt it was time to take her to Childrens.  So while I packed, Daryl brough the two little boys (at the last minute I asked Daryl to stay home and that meant two kids had to stay home due to how many kids fit in the stationwagon) to Sally's house.  Then we were on our way to Seattle.  We decided to drive her because she wasn't critical enough to require an ambulance transport, and we'd get her there faster (we'd have to take her to ER and then wait for a Children's ambulance to get up here).

We got there in good time (entire trip was just over 2 hours) and she did really well.  Once here she was doing better (empty stomach made breathing easier).  They tried putting an IV in each hand but were unable so they called in a nurse that's good with IVs and she got one in Esther's hand.  She got a dose of IV lasix and was breathing easy and resting soundly asleep in my arms in less than a half an hour!  They decided that she should be admited and are thinking she's fighting some virus and drew blood from the IV to see if it's one of the 5 dangerous visues or just a normal cold.  Daryl had to leave around 5 pm (he has to work tomorrow and gets up at 5 am and didn't want to drive house really sleepy - he'd woken up at 5 am this morning for no reason).  Just after he left, Esther woke up and in her moving she knocked the sturofoam "cast" ascrew on her arm and messed up the IV.  They had to remove it.  They decided to not mess with it until she was in her new room.  Finally at 7 pm we got to go to her room.

They are going to stop giving her one of her meds - the sodium - hopeing that she'll do well without it and that the lasix will work better if she's not getting it - but they want to wathc her closely for 48 hours so we'll be here at least until Tuesday.

Because she's suspected to have a virus she has a room to herself and we are in "isolation" until her tests come back.  This means the nurses have to be in full garb whenever they are in the room - masks and gowns.  I don't have to do this, so that's good as I have a reaction whenever I try to wear a mask!

Once in her room, the IV team came and I requested that they put the IV in her head - it's much easier and I didn't want to see her get poked unnecessarily again.  The IV nurse was great!  She got it in quickly and did a nice job of securing it - she had to give Esther a little trim of some under hair right in front s oit would be secure, but it will be hidden under her "mohawk" - it looked like a little pony tail and I said we should put a bow on it - so she grabbed the pink "stick to itself" tape, but it in half and tied half of it around her whalespout and the other half onto the IV!  It was so cute!  The nurse said she looked like Cindy Lou Who!  She really did!  See for yourself:

She's been having problem with low O2 levels since she fell asleep - they are trying to figure out what's going on, but I tried a new position and she's doing much better now.  If she stays good for a little longer I'll feel like I can go to bed.  I'm not tired at all now (almost fell asleep sitting up in the ER, but for some reason I'm wide awake and not even sleepy and it's almost midnight now!).

Here's a photo of her "new doo'


She's pink from head to toe!!  And she's waving "hi" to you!

She's been trying to put her hand in her mouth yesterday and today - this is a great thing for her to do!

And lastly, I want to leave you with the first photo of her smile - they are so quick they're hard to get on film!


Tomorrow I'll be talking with her cardiologist and hopefully we'l have a good idea of what Esther's got going and I want to ask her how this might effect plans for her. From my perspective this is definitely not going in the "improvement" direction.

Please pray that she'll do well overnight (she's still oxygenating well in her new positon) and that her Drs will make good decision in their care of Esther - and especially that she won't get any "bugs" while she's here. I think she may have gotten this "bug" while she was at Childrens this week - either that or this is something that goes farther back than that and it just took a while to really take hold.

Good night!

Finally...Updates and prayer needs

Thanksgiving week was very busy, so there wasn't anytime for blogging.  Then i€ wanted to have fun with the kids so I played several games of risk over the weekend while trying to catch up on laundry.  Once our kids reach the age of 9 they start training to do their own laundry, and once they turn 11 they are responsible for that completely...so I "only" had to do laundry for 6 kids, 2 adults, cloth diapers for 3, and towels/bedding!  Normally this is quite doable, but in this case it was probably around 15 loads as I was behind when I got home in October, and never got much done at all since!  I now have Daryl's, Esther's, the towels, diapers, and my laundry put away and the rest is folded and sorted - I'm so close!

Today was Esther's checkup at Children's- long day that started with insomnia at 2 am, followed by  leaving behind all Esther's feeding supplies (found a bottle in the car and had a little formula in diaper bag just for times like that) at home, then Esther pulled out her feeding tube halfway to Seattle, then enduring 5 1/2 hours in Children's (Echocardiogram, EKG, weight (11 lb 7 oz), height (22.6 in), blood pressure and O2 levels, exam/consult w/ Dr., and blood draw), a dead battery, peak Seattle rush hour,  nearly getting hit three times, and finally making it home with a very hungry baby at 8 pm (we left home at 9 am...and Esther did manage to drink 160 ccs by bottle while we were gone).

Daunting as all that, the doctor's evaluation made the trip home that much more difficult - Esther's heart has not improved and she says the hole is larger than originally thought (hasn't grown, just larger than they thought) and is freely allowing blood from one side to another.  Over time this will cause damage to the lungs, and Down Syndrome children have week lungs to begin with - bad combination.  So she scheduled Esther to come back on Jan 5 and if she improves measureably, we will continue as we are, but if she is the same, or worse, then Esther will need to undergo open heart surgery in March or April.  On the way home I realized that this timing would co-incide with Jeremy's deployment to Iraq - needless to say the prospect of having my firstborm in harm's way and my baby having open heart surgery at the same time is unfathomable.

"...for I know whom I have believed,
and am persuaded that He is able to keep that which I have committed
unto Him against that day"

2 Timothy 1:12b

...my children are all in His Hand and He does all things well.  I must choose to trust God and know that His Grace will be sufficient if that time comes, and not worry about this now (I can't change a thing by worrying and will only hurt myself and waste precious time that could be spent in prayer and/or with my precious children, as I am not given grace for the "what if's").

Please pray with us that Esther's heart will improve measurably, or be healed completely, but above all that He will be glorified through whatever He designs for Esther, and that God will prepare Jeremy for whatever is in store for him, and that I will find peace through trusting in God every moment.