repeat the sounding joy.

happy holidays friends of ours.

elida is doing so well - getting stronger and more darling all the time.

we feed her little bites of thickened milk. in a week or so, we can start two short feeds a day. slow progress, but we are encouraged none the less! elida has also had good reports from her orthopedic surgeon (hips and bones are looking a okay!) yesterday, she got her first tooth. AND she can hold her head up on her own, which is transforming our lives - and hers - you can see how proud she is of being able to look around.

there is nothing quite like having a wee babe around for christmas. we are loving every second of it - even when the future seems unclear or scary. in each small moment - there is so much joy.

so to that - we say - repeat the sounding joy, repeat the sounding joy.
elida seth and amelea 

we celebrate!

almost 6 months.

HELLO dear friends of Elida.

It has been a busy couple of months since the last post, I am quite sorry to keep you in the dark about her progress for so long! Just because there is SO much to share, I am going to resort to bullet points. (I promise not to make a habit of this. Honest.)

• Elida has started FEEDING THERAPY! After a semi-successful swallow study, we can now begin very small feedings by a bottle. Last week Elida drank 4ml of milk - with no coughing or gagging! We both got a little teary eyed - we are just so proud of her. She has already come SO far... it is just thrilling to begin working on something that will be so very important in her future. 
• Elida does NOT NEED HIP SURGERY! Praises be... her dislocated hips are healing on their own (with the help of a brace she wears while sleeping at night). We could not be more excited about this news, it spares her from 2 surgeries as well as 6 months in a full body cast, oh my.
• Yesterday, Elida started playing with her toes. He he, I just had to put this in - because it is so dang adorable. 
• We got the further testing back from The University of Iowa. It showed that the root of her disorder is in the make up of two different types of protein in her muscles. This does not really tell us a whole lot more about her prognosis - HOWEVER - we learned that this type of disorder is not degenerative. Though we still do not know how strong she can get, we do know that what strength she gains is hers to keep. HOORAY - there is so much room for hope and faith in this!
• Her occupational therapist is now "taping" her wrists, fingers and diaphragm. After just a few days of having her tummy taped (you can see a bit of the bright pink tape in the photos below) she started talking so much more - the tape keeps those muscles engaged - the results of which are incredible. Seth says that she "has really found her voice" - has she ever. In the past week she has begun to giggle a little bit too. Elida continues to be such a happy little lady.

The unbelievable progress that Elida has made in the last 6 months deserves grand celebration. We hope you will all take a moment to feel the goodness and delight that we feel - and raise your glass to hope and her continued healing and strength.

Thank you for your prayers, well wishes and friendship. 

Sending love.

4 months old!

new news.

Hello friends. It has been too long - and there is a lot to share with all of you about Elida. I will get the news about her muscle biopsy out of the way, and move on. The biopsy did in fact show that Elida has a muscle disorder. While this news did not come as a shock to anyone, it was devastating, none the less, for Seth and I, along with our families, to hear.  It has taken a few weeks for the news to sink in, and for us to adjust around the fact that we now have a general diagnosis. We do not know what kind of disorder it is - in fact, the biopsy came back as "inconclusive"... again, the doctors are encouraging us to dig deeper for further understanding, and so the biopsy is now in Iowa for further testing.

This place (of waiting) continues to feel very uncomfortable - especially because we are struggling a bit with how further information will be helpful for us. Without getting into it too much - the long and short of it is that there is a huge range of disorders that Elida might have - but no matter which one- we are told that we will treat her symptoms the same. We are going to do PT and OT and love the goodness out of our sweet girl, no matter what. I, in particular, would like to avoid the emotional set back of a detailed diagnosis that could leave us feeling hopeless.  I guess it is hard to see the use in what I expect could be a terrifically difficult burden of knowledge to bear - especially because right now, she continues to show us that she is capable of getting stronger every day.

In that, Elida is doing just SUPER! I wish we could make tiny Elida's for all of you to have. I mean it, she is just the most delightful little baby. I get the feeling that she is so happy to be here in this world with us. Though her core body strength is still delayed, the tightness in her muscles (especially in her arms) has almost all but disappeared. She waves her arms around and kicks her legs straight up in the air. In the last few days she has begun to twist her hips... the beginning of her will to flip herself over. It is quite unbelievable for us to observe. Again, we are truly in awe of Elida, all of the time.

I think these photos sum it up... in more ways than not, she is a very normal 3 and a half month old. Exploring her world with her fingers and mouth, beginning to chat it up with coos and ahhs, loving picture books and hearing stories, sleeping through the night... (lucky us, right?)

A few other things, Elida has been scheduled for a re-swallow study in September, we are all very excited and hopeful that she might be able to begin some (small) oral feedings if this study goes well. Keep praying! Also, we ended up postponing her surgery to get her hip cast. We all wanted to avoid the complications that happened during her last surgery AND her hips are healing very slowly on their own. So we are keeping her in her hip brace at night, and crossing our fingers that the casting can be avoided all together. Again, we keep praying!

I know that was a lot to fill you in on. It is crazy being back at work - good, but crazy.  I will try to update more regularly. It is very nice to keep you all in the journey with us.

Love and Blessings to you.

the three of us.

lovely sleeping in a sling.

first dinner at home.

Elida loves papa's beard.

We have been home with Elida for a week now... and her little body has been healing really well.  The feedings every three hours come naturally to all three of us - a really nice shift from the continuous feed that Elida got from her feeding tube. It goes quite smoothly, we simply hook up a short tube into her "button", fill up a syringe with breastmilk, and let gravity gradually fill her belly!

I (amelea) am going back to work tomorrow, high time after an extra month off - thanks to a very generous staff at ArtPrize. It has been a fabulous three months, despite all of the unexpected challenges that we have all been faced with. Seth has promised to take Elida downtown anytime I need a family fix during the day.... which is very encouraging being that there will certainly be some long days getting ready for the big event.

A few other updates - in case you are wondering where things are at. Elida is scheduled to get her hip cast on a week from Tuesday (August 9th). We have a consultation with the surgeon tomorrow and will know a bit more of what that will be like soon. After the complications that occurred during sedation with her last surgery - we are quite concerned about this again (putting on the hip cast requires sedation - boo).  We are insisting the the ENT (ear nose and throat) Doctor that saved the day when things became critical last time be in the room this time around as well ... he has recommended a few names of anesthesiologists that would be better suited to work with Elida... Time for us to advocate for our precious little girl!!!

We start up PT again this week, and are also getting PT once a week at home through a fantastic program called Early On (http://1800earlyon.org/). We notice that Elida is moving more and with more enthusiasm as we work on strengthening her core muscles - especially her neck, as well as her arms that are still showing limited movement as a result of her arthogryposis. I apologize if all of this is at all confusing, it is hard to know how much to explain without repeating the same thing over and over. PLEASE let us know if you have any questions about how Elida is doing - we certainly love knowing that you all care for her and that you are keeping up with her progress and praying for her continued healing.

Blessings from our home to yours.

feeling great - heading home!

hi.

we wanted to let you know that elida is feeling great and doing fabulous with her feedings - we are headed home this evening! she is back to her happy self - evidence above.

peace.

What a little trooper she is.

 

An update post surgery - overall Elida is doing just super!

The G-Tube/Nissen procedure went really well, she has been getting food into her new stomach port for almost 24 hours. Right now it is still pumping food constantly - hopefully by this time tomorrow they will begin to condense the feedings so that we can get her off the pump.

There were some complications that occurred when they were intubating Elida before the procedure. They needed to intubate her to support her breathing while sedated. Because of the unique anatomy of her airway, they had great difficulty getting the tube down. It became a critical situation in which they needed to call in an Ear Nose and Throat specialist to come in and place the tube in with a scope. Once Elida was stable they decided to go ahead with the surgery as planned...

Other than some swelling in her throat that is causing her a bit of discomfort she is doing just wonderfully. They moved us from Intensive Care to a regular room here in the new Children's Hospital, which is really nice for us all (and reassuring that all is moving in a good direction!).

We are enjoying a delightful view of the city from our room here... and look forward to heading home in a day or two.

Thank you so much for keeping us in your thoughts... we are very aware of the goodness that surrounds Elida - right now we certainly feel that many prayers have been answered.

July 19th - Elida gets her Mic-Key button.

Being that Elida was born with a "weak swallow" she needs to avoid feeding orally until it is safe for her to swallow. This is why she currently has a feeding tube, and why she will be getting a Mic-Key button next week. The Mic-Key button will work along with the G-Tube as a port into her stomach, which is how she will be feed until she gets stronger.

Elida has been big enough for this surgery for the past few weeks (she is now 10 weeks old and 8lbs 11 oz) but we decided to hold off a bit longer as the bigger she is, the less risky the surgery becomes. Though putting in her G-Tube is a "routine" procedure, we are told that things go better post surgery for larger babies.

We have set the date of surgery for this coming Tuesday, July 19th. While we are looking forward to having this procedure behind us, we expect that her recovery will only be a few days as we are told she will only need to stay in the hospital for two nights - and this time she will have her own room so we can stay with her - what a plus!

Please pray for our sweet little one - this procedure will make all our lives quite a bit easier, but is scary none the less.  Also, because we continue to observe a lack of appropriate muscle movement, we are also going to have a muscle biopsy done at this time. We would also appreciate good energy sent our way for this procedure as well. It could provide some answers about Elida and why she was born as she was - but test results are always unnerving to anticipate.

Thank you dear friends and family.

first month at home.

This has been such a wonderful month - and it certainly has gone by quickly. Loads of fun - and very minimal stress - just as good as any experience we could have asked for.  As you might know, they let us finally take Elida home, a decision that was a bit questionable as she needed to be on her feeding tube until she was big enough for her G-Tube surgery.

We have watched her thrive as we hoped she would - gaining over 2 lbs, outgrowing her first set of splints as well as making great progress in her range of motion and overall gross motor movements.  That and her sweet personality is becoming more apparent as she coos and smiles with us all the time!

We have begun working with new OT and PT at Spectrum. Rosie and Robin are taking great care to get to know Elida and her needs, with appts twice a week - as she is growing so quickly. Elida now has only wrist/finger splints to wear as the "contractures" in her elbow are now completely relaxed. It is just a beautiful thing to see her sleeping with her arms at her side. The OT will continue to work with Elida to be sure we are all making strides to help her meet the appropriate developmental benchmarks... right now she is only slightly behind. The PT will continue to work on her muscle strength and loosening those muscles that continue to stay a bit tight.

Other than that, we are enjoying these last final weeks with both of us home (I will return to work the first week of August - Seth is home full time now!) I will post an update about her upcoming GTube surgery in a bit. Next week will be a big week for us all!

8 lbs 6oz

daddy rocks a baby.

on our first walk.

june 13 2011 - update

We are super excited to let you know that our baby girl has finally come home!

It came a bit out of left field - but the doctor's told us last week Wednesday that they would be very comfortable with us taking Elida home! They are usually hesitant to do this, simply because it is a bit tricky to work with a feeding tube in a home environment. However, because of their confidence in us as parents and being that we live very close the hospital - they encouraged us to get her out of the NICU. It goes without saying that babies grow faster outside of the hospital!

In order to make the decision a bit easier for Seth and I, they let us "room in" with Elida at the hospital. We hooked her up to the feeding tube and monitor that we would use at home in a private room to see how it would go. The nurses would stop in from time to time to check on us, but otherwise we were on our own to care for her. After two very successful (and easy!) nights with her, we knew there was no way we could leave her in the hospital another second. We packed everything up - super excited to get our baby out into the real world and into some fresh air.

The last few days have continued to be such a wonderful time for us. Elida seems to be transitioning really well into her new home - and seems really content sleeping in her little moses basket next to our bed. We both agree that it feels so right to have her around... it has been 3 days now and we can not remember what it was like before she was here.

Seth and I are now responsible for her PT and OT in the lag time before we are set up with outpatient appointments - but again this seems to come naturally. Any time she is awake we are playing with her and encouraging her body to move in new ways. She needs to gain another pound or so before they will do the GTube surgery, we are thinking it will be another 2-3 weeks before that happens. Recovery should only be 3-4 days back in the hospital.

The doctors are still looking for a diagnosis for Elida and will do a muscle biopsy at the same time as her surgery. From there they will do a neurological study... they remind us that it quite important to continue to look for the cause for why Elida has the physical weakness that she does - as it will certainly help us know how to encourage her to be her best in the future.

Seth will continue working for a few weeks before he takes on the thrilling job of stay-at-home-dad. We are both happy and thankful that Elida will have her daddy around all the time to take care of her! In the meantime, we are still looking for support. For those of you who are close by and would like to help us by bringing a meal - you can sign up for a day/night that works well for you at www.takethemameal.com - last name Pegman, password Elida.

Thank you for standing by us as we venture into a new season of life with our little one. We continue to feel your love and are so very grateful for all your prayers and well wishes for Elida's health. We are so excited to share her with you in the coming months as she grows stronger.

Blessings to you all,
Elida Seth and Amelea

may 31 2011 - update

hello friends.

seth and i are at the hospital together this morning, it is a rare quiet time here - only 6 babys in our room and everyone seems to be sleeping soundly. it has been a really good week for elida...

we were quite worried about elida's ability to swallow last weekend as she was having a very difficult time "managing" some thicker saliva that would pool in the back of her throat and limit her ability to breath normally. while the nurses take great care of elida... they join us in our observation of how elida reacts to new challenges - we all must wait and see. after a few days the thick mucus went away - and we all sigh in relief.

we are very thankful that she bounced back and marvel at her ability to swallow normally without needing assistance... again she proves to us what a fighter she is! we do certainly pray a lot about the weakness she has in her ability to swallow. strength in this area will impact her greatly in the future.

the rest of her body is growing bigger and stronger! she is now up to 5 lbs 13 oz. and though her weight gain is slow, it seems to be steady. seth and i are always here to weigh her in the evenings... i am not going to lie, this is always one of the highlights of our day.

elida's broken arm is now healed completely and out of the sling. the occupational therapists will begin splinting it after the holiday weekend... the range of motion in her left arm - which has been splinted for 2 weeks now- is just astounding. we are excited to see her right arm catch up!

last week elida was in a full body harness to help with her "shallow" hips. she is no longer in this harness as it was not successful in deepening those sockets. this is good news now, because her little body is no longer constricted... but it does mean that when she is 2-3 months old she will need to be in cast for a few months to make sure her hips are growing appropriately. the curious thing about the harness is that if it is not working it can cause damage to the hips, so off it came...

the doctors and nurses are beginning to talk a bit more about what it will be like when we take elida home. this is an exciting and terrifying prospect to us at this point. she needs to gain more weight - but the doctors are now saying it will only be a week or two before she will be ready for her surgery for the "g-tube". (again, this is a port that will be put into her stomach for us to feed her safely for next year or so.) we will be here post surgery at least another week to observe and learn this new way of feeding her before we can take her home.

we have come to value her safe little place here in the NICU...  and pray for peace of mind as we begin thinking about what life will be like for the 3 of us when we take her home.

thank you for continuing to send your encouraging words and support to our family.. we know elida feels it and so do we!  our apologies for not getting back in touch with each of you personally - we love you all so much - and could not imagine going through all of this without you.

with love,
seth elida and amelea

may 16 2011 - update

Hello friends!

We have been wanting to send out an update for days... we get to the hospital early and the hours just slip by. We are having a wonderful time with Elida - watching her grow and learning more about her every day. She is such a darling little girl - by the time we drag ourselves sleepy eyed back home, all we want to do is look at photos of her and think about tomorrow.

A lot of you have asked for more details so you know how to pray for little Elida... so here goes!

The wonderful news this week is that we got her Genetics study back and everything is completely normal. We were not expecting to get this news so quickly. Needless to say - it was a HUGE relief. We do not know if there is a plan to continue on with the neurological and muscle studies - from what we have heard we are just going to see how her body grows and how she responds to the occupational and physical therapies.

Elida also had a swallow study done this week and this news was not as positive. She has a weak swallow that allows for pooling above her trachea. She -from time to time- will aspirate (liquid gets into her lungs) and this is not good. She is now being feed via a tube that will stay there until she is big enough for a simple surgery that will put in a more permanent feeding tube for her to use for the first 12-16 months of her life. The thought is to give her a safe way to eat/drink while we work to strengthen her swallow and reduce the pooling/aspirating.

She must gain at least 2lbs before they will perform this surgery. Waiting for this surgery is the only thing that is keeping Elida here... we want to make sure you know that she doing well enough to go home in every other aspect!

Just to recap about her contractures. We have begun working with an orthopedic surgeon. Elida has what he calls a very mild case of arthrogryposis (this is what is "causing" her contractures). He is very positive about her ability to heal and grow appropriately. His current concern with her is to get her hips in their sockets (they are shallow) so she is now in a harness that will hold them tight for a week or two. This means that we have to put some of our physical therapy on hold until her hips heal, but everyone agrees this will not set her back and is well worth the time to be sure those sockets are working correctly.

Another thing about her contractures is that they make her joints very tight. We are working with a physical therapist to help her gain what he calls "muscle memory" - her muscles need to learn that they can be in different positions and we can help to loosen her joints and muscles with very simple exercises. However, this tightness does make her body a bit fragile. Mid-week her right arm was broken at some point (we do not know how) and so she has a little sling holding her arm to her body. The wonderful (and miraculous!) thing about newborn baby's bones is that they heal without resetting. Our orthopedic surgeon has assured us that it will heal in a week - unbelievable.

Our occupational therapist has made a splint for her left arm (and will make one for her right as soon as the break heals). She wears this three hours on and three hours off for the course of the day to loosen and lengthen the muscles ; again - this is all about muscle memory. We have continued working with the OT on oral exercises to help Elida to have a stronger suck and swallow reflex. This is why you will see lots of photos of us putting our fingers in her mouth!

Elida is now back to her birth weight and gaining every day. We can tell she is getting stronger... and happier and more alert all the time. For as much as this little lady is up against right now - she has the most pleasant disposition and seems to take all the splint/sling/harnessing business without too much complaining. She is the most content when we are holding her - which is all day every day if we can help it!

We reassure ourselves daily that she is right where she needs to be - getting stronger and getting bigger - until we can take her home. We are thinking this will not happen for another 4-6 weeks.

What we pray for the most is simply her continued strength and growth! Again, I will say - she proves to us constantly what she is capable of. She reassures us that we can be confident in her ability to heal - it is our job to simply believe in her and have hope for her.

THANK YOU - from the bottom of our hearts - for joining us in this hope. We can feel your love and support. You have - with your thoughtful emails, text messages, meals, and messages - created a resting place for us. We feel very blessed.

Love from Elida, Seth and Amelea

may 10 2011 - update

dear friends of ours.

i know word travels fast, but i also know that many of you are far away - so for those of you who have heard - here is an update. for those of you who have not : we have welcomed our baby girl into this world!

her name is elida rose, she was born on wednesday may 4th at 9.38 am weighing 5 lbs 3 oz. our darling little girl has a rough start and there have been some complications that i wanted to make sure you knew about - that you might hold our little family close in the coming weeks as we learn more about the growth and development of her little body.

when elida was born she there were many concerns about some physical abnormalities that were immediately apparent. her legs - while in a typical breech position (she was born via emergency c-section as her positioning was either mis-diagnosed or she moved in the days prior to birth from head down to breech) showed signs that they had not been moving throughout my pregnancy, one foot was positioned up on her chest - indenting and bruising her chest from growth happening in that position. her arms where also not showing signs of muscle movement, her fingers where balled up over one another. they have reason to believe that she did not move any of her limbs for most of her development in utero.

elida was seen immediately by a neurologist and a geneticist who have identified that she has  "contractures" of her joints - a diagnosis that can be worked on with occupational and physical therapy. the biggest question however is what has caused these contractures. my understanding of this question is that they need to determine where the breakdown is happening between her brain, nerves and muscles.

the first step was to do an MRI of her brain to see if there was proper brain development. this was the scariest of options... we got the results back on saturday afternoon that everything looks normal and her brain is working as it should be. the next step is to do genetics testing that will identify if there are any chromosomal abnormalities that would be affecting her nervous system. the results should be back at the end of next week. after that, they will do more specific testing of her nervous system and then of her muscles.

in the meantime we are staying VERY hopeful about her day to day progress. her legs are both down in normal position without any dislocation. her joints are becoming more limber every day - and especially with the help of our wonderful physical therapist. the occupational therapist is working with us to learn about her ability to swallow - they are doing a test tomorrow to determine why she has been unsuccessful at nipple feeding up until this point. they will also be making splints for her wrists and fingers to begin the groundwork on addressing her fine motor development. being that she is only 5 days old, i feel that we are all already diving deep into learning the tools it will take for her healing as well as our understanding of how to best address some of her current struggles.

unlike the doctors, i am not looking for any kind of understanding of why elida is the way that she is. she is spectacularly beautiful. she reminds us constantly of her strength- you can see determination in her eyes already. to be honest, i pray that all the tests will come back clear, that there will be no text book reason for why she is born as she was - in that - there will never be anyone telling her what she is or is not capable of doing. i will continue to imagine the best for her... she has given us no reason to believe anything else.

i am excited to take our precious daughter home... but i know that she is not strong enough yet. we have a lot to learn... and she is in wonderful hands in the meantime.

my dear friends, please keep elida in your prayers. please keep hope for her and believe in her continued healing. i am excited for you all to meet her!

love to you all,
amelea and seth

our baby girl.

elida rose pegman

may 4 2011

5 lbs 3 oz

oh, what a sweet darling she is!