Ellie is Doing Well!!!!!!

Ellie had a great weekend resting and recovering from her surgery Friday.  She came off the vent easily and is back loving the bottle!  All great things getting her close to coming home!!!!!!  Here's Ab's email from last night...

Wednesday night-
ellie had a great day today. her breathing sounded much better and she took a bottle all day long. she chugged her feeding tonight and could have maybe done more if some milk had been warming for her.


as long as ellie is doing well tomorrow, kate, luke and dan are coming up to see her tomorrow afternoon. they are very excited. when we told them the possibility of them seeing ellie, kate and luke said, "yeah," and dan at the same time said, "yuck!" it made us laugh that dan's timing was so perfect on his yuck!

my mom goes back to iowa tomorrow afternoon and then matt's mom gets here friday morning. it will be a nice turn around by the grandmas. :) we have been so fortunate that our families have been able to help us most days since ellie has been in the hospital. i think we have only had a total of five, maybe six, days where friends have had to handle the other three.

attached is a picture of ellie today after a bath. it is her eight week anniversary today and she will be two months old on monday. we are thankful that God has given us this time with her and a new perspective on how precious life is. please pray that everything continues to get better for ellie grace and that she is just covered with the peace of the Holy Spirit.

love-
matt and abbie

A Week's Worth of Ellie Updates

In reverse order of course!!!!  : )  Sorry!  JR

Friday Update-

Surgery went well today. The doctor had to redialate her nose so she should have much more room to breathe. He also found a cyst in her trachea that he popped, drained, and closed. The cyst was the size of a marble so getting that out of her throat should help tremendously. Ellie will have a MRI this weekend to make sure there are no other cysts but other than that, she is going to do lots of sleeping. They will not extabate until Monday as she is very swollen and they want to give her lots of time to rest.
Thanks for your prayers! They definitely found a couple of things that were blocking her airway. Now we just pray for a very uneventful weekend.
Love-
Matt and Abbie
Thursday Update:
ellie was pretty zonked today. not much work done by ellie today so she is up to 6lbs. 10oz. a chunk!! surgery is still on for tomorrow afternoon and though we are not anxious yet, i am sure by the time we are walking her into the surgery room we may be a little on edge. we are praying that the doctor finds a reason for her difficulty breathing and it is a quick and easy fix.
people have asked us and some of our nurses how/why we have been so calm through all this. it is as if people expect you to freak out and not handle things well. we are so thankful that we can answer that our faith in Jesus is what gives us this peace and our nurses can tell them we are christians. it is not that we don't wonder about ellie's future or what may be in store for her, or that we are oblivious to her current problems, but God has given us peace to take this day by day and to be thankful for the miracle of ellie grace. we love her and worrying about her future isn't going to change how we love her and what we are willing to do for her.
anyway, i just wanted to write about this because matt and i were talking about it on the way up to the hospital tonight. sometimes we find ourselves in tough situations and there are many ways to handle them. matt and i are trying to choose faith and peace and not borrow worries from tomorrow. thanks for your prayers for our peace and ellie's healing. we know that God hears and will heal ellie is His own way, in His own time. we just pray that it is tomorrow at 4:00. :) we will let you know how surgery goes.
love-
matt and abbie
Wednesday Update:
ellie had a nice relaxing day. she should have grown a bunch since she wasn't working as hard at breathing. :) she looked good but you can tell she doesn't like the vent and fights it much more than she used to, this is a good thing. ellie's nose surgery is scheduled for 4:00 on friday. i talked with the surgeon today and he said he doesn't know quite what he will do until he has a good look at her. he may have to put stints in her nose to keep the airway open or will use the same anti-scarring medication they have used the last two times. we just pray that this works and there isn't something else that is preventing ellie from breathing well.
we'll keep you updated.
love-
matt and abbie
Tuesday Update:
well, matt and i have been wondering when ellie's next dip would be and it came today. :( ellie had a few more seizures overnight so when matt got there this morning she was knocked out on some meds and wouldn't take a bottle. she took a little from a bottle from me at 11 but she was just acting funny. ellie was crying off and on throughout the afternoon and this is not like her. if asked to describe ellie i would say content and pretty happy, but she was neither today. ellie squirmed and squawked most of the afternoon until about 5:30. the doctor had been in to see her a couple of times and he walked in just as ellie had a big desat and was turning he blue. he said, 'that's it ellie. brooke, (the nurse) let's get her intabated." so, ellie had a breathing tube put in for the seventh time at 5:30. yuck!
ellie immediately looked better as she hadn't slept most of the day as she was working so hard at breathing. she was relaxed and resting well so we are thankful. the doctor is pretty sure that her breathing problem is all upper airway so surgery on her nose was scheduled for friday but may get moved up if they think she needs it. we hope this surgery will finally take care of her breathing issues but we will have to wait a little bit while she recovers from surgery. the bummer about the tube, of course, is that she doesn't get to bottle feed but we hope that she won't be set back by this.
these last seven weeks have definitely been a roller coaster! last friday there was a possibility she might be coming home this week and now she has had several seizures, intabation, and a surgery scheduled. amazing! matt and i continue to appreciate the prayers as we have a peace that passes all understanding. we are thankful for all the messages that say you are praying. it is quite awesome. please continue to pray for the seizures to be under control and that the surgery does what it is supposed to and help her breathing. i will keep you updated on when the surgery will be.
love-
matt and abbie

Monday update:
our ellie is still doing pretty well but she still has a ways to go before she is safe for us at home. she is eating great and growing so that is such a positive. however, she had a few seizures starting again today so that is no fun for her or us. ellie will have another eeg tomorrow sometime and her neurologist will determine what to do about the seizures. she is on just one medication now that she takes orally and we hope to be able to continue on just oral meds rather than anything IV.
she has been breathing about the same since saturday so the ear, nose, and throat (ent) doctor may take a look at her in the next couple of days to see if anything needs to be done to widen or stregthen her airway. matt and i are not big fans of surgery for her, but if that is what gets her home and keeps her safe, obviously, we are all for it. :) if the ent doctor doesn't find anything going on with her airway than they will probably just start a slow oxygen wean for her.
please join matt and i in thanking God for ellie. honestly, everything about her is just perfect for us. everything we look at her and hold her we are reminded of the incredible work that God has created in her. we also ask that you would lift her up to our heavenly father for complete healing, for ellie to be seizure free and her breathing to improve with each breath she takes. we will keep you updated on surgery so you could pray for the doctors and nurses to have wisdom in regard to surgery.
thanks friends for praying and we hope you had a good memorial day weekend with family and friends.
love-
matt and abbie

Happy Appointments to Report

(blurry and from my phone- crazy kiddo!!!)

So Sam and I are back and getting settled in at home this week!  The last monthish has been a whirlwind full of family, fun, nerves, prayer and love!  A few appointments to fill you in on...

While in Denver, Sam had an appoitment with his orthopeadic doctor at PSL and I'm happy to report that he is out of the hip brace!!!!!!  Yaaaahhhhooooo!  When we started this process last October, a certain angle in his left hip socket was at 34.something degrees.  By one year of age, normal angles there measure 26 degrees.  In January when we went the brace at night was clearly doing the trick and the angle was measuring 29.something degrees!  Last week he was just over 27 degrees and this is considered normal and okay!  More so than the number shows, she was so pleased with all of the changes in his legs and movement.  When we started, the little guy spent much of this time standing or sitting with his legs straight, knees locked, and toes pointed... all to help him be sturdy.  All of that is gone!  We are not quite an independent walker yet but oh so close!  His record of 12ish steps totally unprompted or set up was earned in Denver while happily playing and distracted with three of his cousins!  Since we've been home, he's not taken as many steps without lots of encouragement but he can and will one of these days when he really feels ready.  Bryan and I couldn't be more thankful!  Hip brace... Dr. Benson... wild cousins... extra time with aunts/uncle that love him... all good medicine!!!! 

Our second appointment was Monday of this week back at the U of I.  Sam had been scheduled to go revisit the neurologist to make sure that the rigid legs of old, foot positioning and walking and speech delays were all still okay and not something more to look into.  We were cleared by one in Denver before we moved and were scheduled for a revisit these handful of months later.  Dr. Bonthius stressed again how very common language delays are with little boys and how this just seems to be the case with Sam.  No major red flags or areas of concern so he would like to give him six months to keep working and changing at his own pace and then talk again.  They drew blood to have a couple of tests done too.  Bryan and I couldn't be more thrilled with that news!  Our job is to continue to support and work for this little boy so we can keep his joyful spirit just as it is!  Things are falling into place... just at Sam's pace.  We are so proud of him and the effort that some of the small things have taken.  He is such a happy, busy, social, joyful little boy.  Singing- no singing- running- no running... whatever may be down the road... he is such a delight and we couldn't love him more!  The sky's the limit! 

We had one more appointment this week but thankfully, I was the patient instead of Sam!  Nope- that's a lie- two I guess!  : )  The other was a quick one for me too--- evidently grownups with terrible colds that fly back to Iowa after spending three weeks with germy kiddos get ear infections!  I'm on some meds and feeling much better so no big deal.  Not fun to remember what that feels like though!  Ouch!

Okay back to the other fun appointment... : )

Bryan and I are thrilled to share that we are expecting baby number two!!!!!  I am 12 weeks, due December 7th and feeling well!!!  We had an ultrasound at our first appointment and were able to see the little one (still early and with the yolk sack)- heart just beating away!  We heard the heartbeat this week which I still think is one of the most amazing sounds in this world!  We both really like our new doctor and couldn't be more excited!  Knowing of recent miscarriages of friends, seeing Ellie in the NICU... you never know what God has planned for you and your family so with this persective, we are oh so very thankful to be blessed and having another miracle. 

No more appointments for us in the near future let's hope!!!  : )  Thanks for sharing in our happy news and for your continued prayers and well wishes for Ellie.  We are so thankful for great family and friends.  God is good!!!!!

Ellie- Monday Night

Very happy email to pass along!  Thanks for keeping tabs on this little one!!!!

(no tubes after her heart surgery!)

monday night update:
ellie is just doing wonderfully. :) she had a nice relaxing day, well, kind of relaxing. we tried a bottle with her at 11 but she would not wake up no matter what we did. maybe tomorrow she will get another chance. she pulled her feeding tube at least twice today so they tried to get it down her nose instead of her mouth but matt said she fought that like crazy so they will just put it down her mouth again whenever she pulls it out. :) they weaned her a little bit on the oxygen today and lowered the pressure flowing into her nose by just a smidge. it took a little more effort to breathe after that, but she needs to learn sometime so eventually she can come home with us!

her little incisions from friday's surgery look good. she has three small, 3 mm long, incisions under her left arm pit and just needed skin glue to seal them. the doctor assured us we would barely be able to see them after they were healed. amazing what they can do on a 5 lb. 13 oz. baby.
i love that i continue to write about ellie progressing instead of staying in the same place. we continue to ask God for complete healing of ellie and that even her seizures would just stop. His will is being done as He has shown us for the last 6 weeks that He is the one who is in complete control.
love-
matt and abbie

The Last Few Ellie Updates!

I've been behind since Sam and I got home from CO but here are the last few email updates on Ellie.  She had a successful heart surgery Friday morning and has been doing really well since!  Hopefully she is on the path to continued improvement!  These are in reverse order...


Saturday update:
Ellie had a restful day. not much going on with her today which is nice. they moved her quickly up to full feeds again after being off them yesterday due to surgery and she is doing great eating. they may try to take the vent off tomorrow but will see how her night goes. if the vent is taken out tomorrow she may be able to try a bottle again early next week. she was sucking on a pacifier very well yesterday and today so that is good news for future eating.

ellie woke up more today and was unhappy about the vent so tried a couple times to pull it out by herself. the nurses do not like that so they swaddle her up tightly to keep her hands away. it has been so nice this last week to have an ellie that we can move and hold and not worry about her breathing or heartrate. :) it will be awhile before we take those simple things for granted. it was a beautiful day in denver so we spent some quality time with the other three as well. we always feel good when we have a "normal" day with them around the house.
god is good and we are thankful for His peace and kindness to us. we are very grateful for His good gift of Ellie! have a great sunday.
love-
matt and abbie


Friday update:
Ellie's surgery went well today. The surgeon said everything looked good. She has been resting comfortably today and has opened her eyes but is definitely still sleepy from the drugs. Thanks for your prayers for surgery and we ask that you pray for her continued recovery.
Love-
Matt and Abbie


Thursday update:Matt and I just finished a nice time of holding our daughter. Ellie had a nice day of rest leading up to her surgery. She heads to the OR around 7:30 and will probably be there an hour and a half or so before coming back to the NICU.
Please pray for safety and healing. We could not ask for a better doctor and we are not anxious yet. :) God has been so gracious to us and we feel very blessed to have Ellie. We will update tomorrow and we are confident it will be good news.
Love-
Matt and Abbie


Wednesday Update:
Ellie has had five days of cooperating with us. Yea! Tomorrow she has an EEG to look how her seizures are acting. We hope they have only good news for us. Ellie's heart surgery is Friday morning at 7:30 so please be praying for safety and that all goes well.
This is short as I am typing it on Matt's blackberry because our computer is out of commission at the moment. Will let you all know how the EEG goes tomorrow.
Love-
Matt and Abbie


monday night update:
we had another uneventful day for ellie, three in a row! no seizures, very few desaturations, and overall looked good. she will have another echocardiagram tomorrow to see if the pda is still needing to be fixed and then as of now, she will go into surgery at 7:30 a.m. on friday to get it fixed. on thursday she is scheduled to have an eeg to make sure the meds are taking care of her seizures and so far they seem to be doing their job. a big week for her but hopefully all goes well.
kate and luke get done with preschool this week and that will be nice not to have to run around getting them to and from school. jenny and sam go home wednesday afternoon and then my brother is coming the next wednesday for a few days. we have been so blessed to have family out here to help us since ellie was born and also offers from friends to help out in any way we need. God has provided again and again for our many needs and we have so much to be thankful for.
love-
matt and abbie

 
More exciting things to come from me this week!  Stay tuned!!!!!  JR

all of the kiddos together

a few co pictures

here are a few pictures from the last week taken on my phone that i've been sending to bryan.  the quality isn't the best but i'm glad i've remembered to take a few.  ellie update coming soon!

batman with a new haircut

attempt 1 at the playplace

attempt 2

kate and dan snuggling

almost caught him looking at the camera!

sam loves loves kate's new dog

ellie's sweet mother's day gift to abbie... a picture of all four kids snuggling and her tiny feet...
sorry it's blurry... a favorite nurse from the nicu made it for ab... sweet huh?

Setback for Ellie Thursday

thursday night update:

well, God wanted to get all of us on our knees again to pray for ellie. around 9 this morning i got a call from the hospital letting us know that ellie had a temperature and that they had just witnessed a series of seizures in our little girl. matt was away from the hospital at the time so i called him and he rushed back there and then jenny drove me up there and dropped me off so we could spend the day with ellie. they did a spinal tap on ellie to rule out any infection and thankfully that came back with good news, no infection. however, they did an EEG, where they put a bunch of electrodes on her head and watch her brain waves and stuff, this afternoon to confirm the seizures and how she acted during them. she is basically having constant seizures so she is on medicine now to stop those and will be on medicine for awhile. tomorrow morning they are doing an MRI at 9 and that will give them a better look to see if what she has going on in her brain and if there is any damage. the neurologist warned us that they might not find a cause for her seizures even doing the MRI so we will wait and see.
i guess the thing to pray for is that the seizures just stop. that would be incredible! but please, also just pray that if the doctor's find something, it is treatable and not scary for matt and i. we would appreciate any and all prayers on ellie's behalf. matt and i said today that we had stopped praying earnestly throughout the day during the last couple of days and then we wake up this morning with this news and know that God wants us back on our knees begging for Him to heal ellie and that we would glorify Him in all situations. i think the hardest part for me is thinking that she is in pain or discomfort and i just don't want that for her. however, as we watched her today, i think the medicine is doing its job and relaxing her and that is comforting to her mom. :)
i am sorry this wasn't another "boring" email day but we can pray that those will resume shortly!
love-
matt and abbie

tuesday from denver

sam and i made it to denver with only the slightest bit of drama and have loved our first few days here!  i was able to meet and love on ellie twice yesterday too!  she is a pretty little lady and it feels good to be here!  abbie's email from tonight...

tuesday night update:

we have had a good couple of days with ellie. she did start out monday with another bradycardia and the nurses said that she turned a lovely shade of blue but then had a wonderful day. she ate about a teaspoon from a bottle twice yesterday and once today so that is some nice progress. they only feed her from a bottle when she is pretty awake so we have to take advantage of those times. also today, i got to give her a bath and she loved it. we got her cleaned up, in a new onesie and she was right back to sleep.
ellie's breathing is still fast but overall she looks much better and is definitely improving. the doctors keep reminding us that her trend is upward even when she has little setbacks so we have many things to be thankful for. please keep praying for continued improvement, for maturing of her breathing and that she gets the hang of eating fairly quickly. thank you so much for your support of ellie and of us. again, we are very, very thankful!
love-
matt and abbie

ps- my son lovingly pounded his cute little fists on their keyboard and knocked out both shift keys in one quick swipe...quite the move... hence the lowercase type-  sorry!!

here are a few pictures for you to enjoy!!  ps- feeding tube in her mouth and moisture plus a little bit of oxygen (i think so anyways!) in her nose.

Headed to Denver

Sam and I take off for Denver early tomorrow morning! I'm very happy to get out there to meet Ellie and help Matt and Ab but I'm even more happy it sucks so bad to leave my husband for over two weeks. With him is where I belong! Here's to a day of safe and easy flights!