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!