At the ER

Reagan has been coughing since Thursday morning.  She had an appointment this morning with her pediatrician.  He was worried enough about her wheezing lungs and retracting rapid breathing that he sent us to Loma Linda ER  to see if she needs to be admitted.  We arrived here just before 3:00 and so far we have made it through Triage and are now waiting for a doctor.  It will hopefully not be too much longer.  Reagan hasn't been very interested in eating today so with my increasing (yay!) milk supply I have extra at the moment, but ER is not a good place to keep up with pumping so pray that we get through here quickly so that I can get back to that before my supply drops again.  I will update as when we find anything out.

Grace and Gratitude

Learning to accept help is not as easy as I used to think.  Learning to ask for help when you need it is even harder.  It seems so easy on the face of it, you need help and you ask for it.  But when the need for assistance becomes a way of life and you start to feel like you are taking and taking and then taking some more, it starts to get hard.  I don't want to admit that I can't do it all. (who can right?)  I don't want to assume that other people will do my work.  I want to pretend that I can both run my household and keep up with the grueling schedule of nursing-pumping-bottles-medication that has become the center of focus.  The truth is that it takes more than 50% of my waking hours to keep Reagan fed, supplied with milk, and medicated.  That does not include feeding the other two girls and the animals...oh yeah and myself.  The part about taking care of myself hasn't been going so well and my supply is showing the lack.  So was my pantry.  I can let other things around here slide until I've got this pumping thing down, but grocery shopping really is rather essential if we want to eat.  So I asked my mom (love you mama) to come help me go grocery shopping yesterday before Reagan's therapy.  And as seems to so often happen these days the blessings started cascading.  We got the shopping done and now we can eat :)  With that monkey off my back I turned my focus on how to boost my dwindling supply.  As I was deciding if I had the energy to drive into Chino to the health food store for supplies I called my midwife's office on a whim to see if she had any advise for me.  She was busy but her new assistant who just happened to (no coincidences for God) answer is an expert on all things lactation and asked if I wanted to come over and talk to her.  THANK YOU Jennifer!  I very nearly said no, not wanting to take advantage, but I remembered that God puts people there for us.  She was able to give me some very good advise which I hope will help with this pumping thing that I'm so bad at.  Just one example of how God's grace and blessings get poured out.  By humbling myself to ask for help I was able to receive even more than I hoped for.  And that is so very needed right now.  Today was rough.  My girls are all sick.  Even Reagan.  She is coughing and we were trying above all to protect her from any chest-related illness since her lungs are so vulnerable to pneumonia.  She still does NOT like bottles and it takes a great deal of time and patience to give them to her.  This is incredibly frustrating because I know she can nurse so well.  It just seems wrong, even though I know it is what she needs right now.  My supply is not yet picking up so I am barely producing enough for her bottles.  And to put the cherry on top of discouragement, she has lost the tiny bit of weight she gained in the last week.  I forgot to mention in my post about her heart that her doctor is giving her a couple of months to put on some weight or he will be pushing for surgery.  So I am grateful for the help that keeps things sane, and the hope that we can turn this weight thing around.  And I am so blessed by three little girls who even while they are coughing and sniffling share smiles that light up my house!

Clarisse thought that Reagan needed some company during their bath time so she left Bear to "talk" to her.  Reagan thought it was great and rolled on her side all by herself!

The State of her Heart

Ok time for a rundown on Reagan's condition.  I'm going to attempt to spell it all out, but I must issue a disclaimer that I'm not very good with medical jargon or explanations, but I will do my best.  Reagan is 4 months old and we have had a total of 24 doctor's appointments since she was born.  Most of them thankfully have been routine to check for things commonly associated with Down syndrome.  For those who do not know, these can run the gamut from thyroid problems to leukemia to digestive issues to ear, nose and throat conditions or vision problems to the big one in Reagan's case, congenital heart defects.
Starting from the beginning.  When Reagan was tested for T21 her blood was also run for thyroid and leukemia among other small things that (sorry, not a doctor) I'm not sure of.  A complete blood count test.  This came back perfectly normal, but will be repeated every six months to be sure that no problems develop.  When she was six weeks old she saw a pediatric opthamologist to check her vision because if she had certain problems it was important to correct them right away so that they didn't interfere with her ability to learn how to see (brain stuff...really interesting, but I can't really explain it).  She had a slight drift which is not uncommon in babies that age (and I think she's grown out of it)  and is a little far-sighted, but nothing of concern.  She will be re-checked in April, but we are not concerned.  Reagan failed her newborn hearing test which was no surprise to me as she wasn't always responding to sounds, although we knew she could hear.  Her first diagnostic hearing test showed that she had 50% hearing loss in both ears, but it was and still is unclear whether that is due to fluid which can clear up (on its own or with assistance from tubes) or from nerve something or other (sorry I warned about that medical jargon) which is permanent.  The test was repeated not very successfully a month later and they were only able to test her left ear.  Little miss didn't like having wires hooked to her head like a science experiment.  The audiologist said that she was still showing only 50% in that ear, but we suspected that the hearing in her right ear had improved, just no test results to confirm our observations.  He also said that he thought it was probably mostly if not all from fluid.  We have not been able to follow up with an Ear Nose and Throat specialist yet, but will be doing that very soon, but her pediatrician says that her ear canals are NOT particularly small so that is good!  And all of us who interact with her including her physical therapist believe that her hearing is now perfectly normal.  She turned her head to the sound of her sister singing from the other side of the house :)  Reagan was evaluated for Early Intervention when she was 8 weeks old and has been working with her physical therapist Elizabeth twice a week for two months now.  She is going to make Elizabeth very happy tomorrow when she shows off how she has learned to hold her head up over the weekend.
Now for the big one.  Reagan's heart condition.  And the cardiologist drama.  We did not have a pre-natal diagnosis for Reagan's Down syndrome and there was nothing on her ultrasound to indicate that she had any heart problems (not surprising with the type of defect she has).  She had no murmur when she was born and her chest x-ray came back clear so there was no immediate danger and we scheduled to follow up with a pediatric cardiologist when she was two weeks old.  By that time there was a murmur present and the cardiologist performed her first (of now three) echocardiogram.  She has a 5mm VSD (ventricular septal defect....see how much I've learned).  In simpler terms there is a 5 mm hole between the bottom two chambers of her heart.  This hole will not get smaller.  There is also a flap that is partially blocking that hole and may (I'm less optimistic than the doctors) eventually seal over it if we can give it enough time.  Whether it ever closes or not however it is helping restrict the velocity of the blood flowing between the chambers so one side of her heart is not enlarging which is VERY good.  When her echo was repeated at 10 weeks she was put on medication.  Captopril to lower her blood pressure and keep the heart from working too hard and Lasix to keep the fluid out of her lungs.  She is doing very well on the medication and just got bumped up slightly today, it is doing its work.  As far as that goes she is stable.  The problem now, as I have mentioned is her lack of weight gain.  This is because of her heart and we are attempting to help by pumping and boosting the calories of my milk for her.  If this works and she starts gaining then surgery will be put off indefinetly giving her heart a chance to heal.  If in a couple of months she is still not gaining then surgery will be scheduled.  The good news on that is that the pumping is working!  (Thank you for the pump!)  And Reagan is not rejecting the bottles anymore, though she still doesn't like them.  The drama with the cardiologist was two-fold.  We are VERY unhappy with his front office.  We started out paying for Reagan's cardiac care out of pocket.  She is now approved for CCS (California Children's Services), but that didn't kick in until November.  The office however has been refusing to let her be seen (they turned me away until I went to the bank and brought cash) until payment for the first visits were made in full.  The biggest problem with this is that they have not sent any bills or statements reflecting payment made by us or CCS, so we are having to address this now.  The second problem was that the doctor was pushing me from the first day we saw him to switch Reagan to bottles "so we know how much she's eating".  I didn't see a need for that since she was nursing better than my older two girls ever did.  He continued to push this at the second visit saying that she was not gaining enough and refusing to plot her growth on the Down syndrome growth chart.  He wanted to know if she was getting enough milk or if it was her heart.  We know now for sure that it is her heart, although at that point she was still tracking just fine on the Down syndrome chart and keep our (amazing) pediatrician happy.  These factors combined were making me uncomfortable and that combined with the fact that if we are facing surgery we would go to Loma Linda anyway caused us to decide to switch her care to them.  We saw her new doctor today and I am  very  relieved and much more comfortable here.  I understand her condition better and the whole situation works better for us.
So there you have it.  I don't know how coherent all of that was.  I know it was long and if I missed anything....ask!  If you stuck with it to the end here's a picture of the sweetie to make it worthwhile :)

Precious Moments

 

We are still struggling with pumping, bottle rejection and no weight change yet, but in the midst of that I find it important to remember the sweet details that really make up our lives.  Our lives are NOT defined by diagnoses, doctor's appointments or scales.  They are made up of blessings and love and three precious little girls.  So here is a sampling of our precious moments the last few days.

Cadence showing off her dimples and giving her baby sister some kisses and hugs.  She's becoming such an adoring and adorable big sister.

Mama know Reagan's tickle spots.  I HAVE to catch this giggle on video one of these days.

At her more energetic moments Reagan is full of spunk and personality.

Clarisse and Cadence love to play and snuggle with their little sister.  Clarisse like to "help" with her therapy.

Clarisse and Cadence entertain themselves with artwork while Mama nurses or pumps.

Reagan's favorite toy....Sophie the Giraffe.  And Mama captured a video of her talking to it.

A Measure of Success

We have achieved milk.  From me to the bottle, and from the bottle to Reagan.  A good breast pump and lots of prayers later and we're off to a good start.

 Reagan nursed this morning and I weighed her before and after with the result that the scale claimed she took in 3 ounces in 15 minutes.  This is about what I thought she had been doing, but it is good to know that she was getting enough volume so now we will boost the calories.  For her 5:00 feeding I took a deep breath nursed her on one side and then attempted to pump.

 One ounce later I fortified it and took another deep breath and settled down to see what Reagan thought of the bottle.  She laughed at me :)  Baby girl wanted to know why Mama was giving her this wierd device.  However she did not object and emptied the bottle in just a few minutes.  So if that was our first shot I'm going to say that I think we can do this with a little practice.  It will be interesting to see how balancing nursing and bottle-feeding shakes out, but after seeing how quickly she emptied that bottle I for sure don't want to cut out the nursing completly for fear little miss decides there's an easier way.

 Things are moving in the cardiology department too and we should have answers by the end of the week.  Thank you dear friend for ensuring that she will get care by next week no matter what happens.



UPDATE:
Since I started writing this post we have gone through another feeding with mixed results.  Milk production: Good, up to two ounces now.  Bottle tolerance: Non-existent, Reagan is acting like I'm trying to force- feed her poison.  I promised her she could nurse all she wants through the night and we'll continue our trial and error in the morning.

Let Us Love One Another

"Beloved, let us love one another, for love is of God; and everyone who loves is born of God and knows God"

 I have seen, over and over since Reagan's birth, the love of God through the love and compassion of those who love God.  We are wading into scary and foreign territory with Reagan's heart and her feeding and (despite my optimistic post last week) her lack of weight gain.  She is failing at the moment.  Not rapidly, but noticeably, and she does not have an appointment set up to be seen by a cardiologist at the moment (more on that fiasco later).

 We saw her pediatrician yesterday and got the expected news that we need to start fortifying Reagan's milk.  That means me pumping.  This is something that I have been unsuccessful at to date.  So I have been scared and discouraged and frustrated.  Needing to find a pump that will work for me.  Wondering how that would work financially because even renting requires a bit of money up front.  Discouraged that it has come to this.  Scared that it will not work and she will have to go to formula and I will lose the ability to continue breastfeeding her which is so critically important for her physically and developmentally.  And so I sent up a quick prayer and started calling people and sending e-mails.  And God's people have been there for me.  Thank You God for sending us to a pediatrician who really listens and works for us even to the point of calling hours later trying to come up with help for our lack of insurance.  And for Susanna who after a wonderful conversation I can now truly call a friend.  Thank you dear friend for the advise and sharing!  And for Sarah who found me a pump to use, and to her  friend for letting me use it.  And for Michelle and Jessica for helping me think through problems and for my Mom who is always my mental organizer when I can't think what to do next.  See how many people are God's hands just for one little feeding problem.

 See Little Reagan how incredibly loved and blessed we are!

Weight upon the Lord

We've been having a few rough days with concern for Reagan's heart.  I'm not a cardiologist and I'm not thrilled with her's so we've been in the process of switching which is not the smoothest process in the world.  Her last appointment was canceled and the timing of that is horrible since my mommy instincts having been kicking in and telling me that Reagan's medication needs a boost.  She was extra sleepy, less active, sweating when she was nursing and not really eating enough.  We've been struggling with her weight gain all along anyway and working hard to keep her strictly breastfeeding so the fact that she appeared to lose ground this week was scary and discouraging.  Yesterday however, she seemed more back to her sweet, chipper self.  Smiles and giggles are coming more frequently as did her requests for mama-milk :)  And she woke up hungry in the night last night!  So I plopped little miss on the scale after her morning feeding and medication and guess what it showed.

A gain!  Her biggest gain EVER!  She is up 4 ounces since Monday.  She has never gained that much that fast.  She has gained less than 2 pounds since BIRTH!  So 4 ounces is a miracle for me.

Course she's still my baby pixie and will stay tiny enough to fit in this Newborn outfit I picked up from the clearance rack for some time yet.

A moment of horror

Little Reagan showed me something Friday.  I get the feeling this will be a regular occurrence throughout her life.  I have been up to my eyeballs in baking and as a mentioned my kids have been running around in their pajamas and quite content to watch as much Mickey Mouse as I will allow.  Reagan does not share their affinity for Micky however.  She is too little to self-entertain and she knew that she was being neglected.  I had been rocking her and nursing her and bouncing her and trying to get her to settle down and wondering why my normally content baby is so fussy.  And then I sat down with her and kissed her sweet mouth and looked her in the eyes and you know what she did?  She giggled!

And Reagan hardly ever giggles.  That's when I realized what she has been wanting all along was just a little attention.  Some one on one face time with mommy. And if Reagan is feeling so lonely and neglected from one afternoon of inattention, then how much horror much these sweet children living in institutions face.  Day after day with NO contact at all.  No hugs.  No kisses.  No songs.  No smiles from someone who cares.  No chance to play.

 Just day after lonely day looking at the bars of their crib.  And this breaks my heart.  Reagan's horror was for a moment, but I was here to give her what she needed.  What about these other sweet babies.  All I can do for them is pray that they may be rescued.  And thank God every day that my little girl is safe in my loving arms.

Nothing in a day

I am having to remind myself of my mother's words to me in November when my older two were sick and I was struggling to keep Reagan's weight on track (not that we've had much sucess in that area) and my husband was working insane hours.  I was overwhelmed and stressed out that each of my children were not getting the attention they needed.  That Reagan needed more stimulation for her development...etc, etc.  And my oh-so-wise mother reminded me of two things.

The first and most important being that my children are in God's hands.  (Well timed post Papa)  He knows what they need and he watches over them even when I cannot.  The second and more phyically practical thing she said was that nothing important happens in a day.  Reagan's development won't happen in a day,  her heart won't heal in a day and so on.  More to the point, one day of not doing what I feel I MUST do to be a good mother is not going to ruin her chances at a good life.

Sounds pretty silly once its all put out there, but I sometimes find it so hard for it to be okay if I don't get everything done NOW.  And there is too much to do.  So with the lesson learned (for the moment)  I am letting everything but the essentials go this week as I prepare for our friend's wedding.  My kids are running around in their pajama's and "helping" Mama make the wedding cake and various sweet goodies for 200 guests. 

So I'm not worrying about looking for a new cardiologist, or following up with Regional Center, or going crazy with therapy this week.  It'll all still be there to do on Monday.  And I'm trusting that if I'm missing something important that God is big enough to whack me over the head with it.

Getting to know you

 We spent a lovely Sunday playing in Oak Glen before the storm hit and then watching snow fall outside Grammy and Papa's window.  Reagan spent a snuggly Sunday cuddled up against mommy's tummy and not caring in the least about the snow.  I have nothing remarkable to say, but in response to so many comments about the value of pictures, here are a few bits and pieces of Reagan in the last few months.

Just after birth and already loving her thumb.

Waiting for her first doctor's appointment at 3 days old.  The first of many doctor's appointments since.

All tucked in with the Heffalump her sisters picked out for her.

Her big sister singing Happy Birthday to her.  I have a video of that too!

I love fall babies.  Well I love fall, and I love babies so I like to photograph them together.

Fun with squash...I grew both of them, but Reagan's cuter even if she weighs less.

I didn't grow the pumpkin, but I had fun putting her in it.  She seemed to think I was a bit nuts.

And finally one more that my friend took, because it portrays how I feel about my sweet angel every single time I hold her.  I am continually blown away by how much joy children and this one in particular bring just by their very existence.

A Gift to offer

I have not been sure whether to start a blog about Reagan.  I don't do a real great job keeping up with my baking blog, and wasn't sure if I had anything really valuable to offer the Down syndrome blogging world.  I am not an inspiring, eloquent writer like Susanna.  Nor am I a passionate cheerleader like Patti.  So what do I have? Then I realized.  I have this.

This beautiful, precious, perfect baby girl that God has entrusted to me.  And she has changed me and our family in ways that could not even have been imagined before.  I don't know what her purpose in life will be, but I do know that her existence will bring joy and understanding to the world.  It already has to ours and to those around us.  I don't really know what the purpose of this blog will be, but if it brings hope or blessing or answers to others than that's enough.  So here's my New Year's resolution: to share this angel with the world.

 Meet Reagan Candice born September 17th all sweetness and softness and with a little extra chromosome.