doctor appt. update December 29, 2008

Eva saw one of the many doctors today and the news was not what we were hoping for.  Eva maintained her weight this past week, however, she dropped today!  She dropped quite a bit.  She does not do well out of the house (We went to church yesterday and she although she handled it better than the first time, she still doesn’t handle new surroundings well… I guess we are now under “house arrest”).  The doctor talked about putting her back on the feeding tube, but when he asked me my thoughts I addressed a few things that he saw that I looked at from a different perspective.  Here is the list:

He saw: Eva lost roughly a pound since leaving the hospital, Eva is throwing up a lot still, she isn’t getting enough calories

What I saw:  she lost most of the weight while on the tube and only 2 out the 14 ounces without it,  she is throwing up less because she doesn’t gag every time she yawns (when she yawned on the tube she would throw up, now she doesn’t), she is digesting more food without the tube than with, she is increasing her intake on a consistent basis (as long as she stays home), she (with the exception of today) maintains her weight at the very least.

After I shared how the numbers look bad, they got bad while on the feeding tube… before she ever pulled it out.  He considered what I said and look at our feeding chart (we made a feeding chart on the computer so we can help the doctors make decisions based upon the most accurate information we can provide).  After about 3 minutes of scanning the sheets of paper he looked at me and said “we will try one more week and if she doesn’t gain she needs to go back on the tube.”  I agreed.  Actually, Jim and I agreed if she still looses weight we will call before next Monday.  Right now she is 6 lbs.  Yes, 6!  She was 6 lbs 14 ounces when we left the hospital.

Thankfully we have a Creator who heals as He pleases and we are praying that He will grant the mercy of healing to our little one and allow her to thrive without medical intervention.  If she must go on a feeding tube than He will use it to grow us and give us the constant reminder of not only Eva’s reliance upon Him for breath, but ours as well.

big day tomorrow! December 28, 2008

Tomorrow is a big day in our household.  It is Eva’s cardiology appointment.  May not seem huge, but a decision about her feeding tube will be made tomorrow.  As stated in a previous post, Eva pulled her NJ tube.  Thankfully she is eating the correct amount of food, but sadly she hasn’t gained weight… but she has maintained her weight and is also increasing the amount she eats every day.  We are hopeful that the doctors will decide to keep her off the tube and watch her another week or so.  Also, tomorrow we are hoping to set up a repeat of her swallow study to see if she can come off the thickened food.  That will be a praise!

The kids are enjoying a visit from their cousin, Anne.  Melissa, my sister, and Anne came in on Christmas and are staying until Friday.  Josiah is enjoying his little cousin and Eva and Anne are quite curious about eachother.  Melissa and Charlie live out on the east coast, but they are hoping to move here in the fall!!!  (not sooner because Charlie’s dad is having surgery and they are going to help him and live with Charlie’s family while his dad recovers for a few months)

cleaver child December 26, 2008

I am amazed at how far my kids go to get their way!!!

1.  We keep M&Ms above the toilet on a shelf as a reward to going potty for Josiah.  I went to go check on him since he was in there a while and I saw Josiah standing on the back of the toilet eating the M&Ms from the hanging shelf!!!!!

2.  Eva hates her feeding tube.  So the other night she pulled the whole thing out!!  We talked to the doctor and the plan is to see how she does only eating orally.  She keeps down enough, but the real question is “will she gain weight?”.  We are monitoring her weight at home and will hopefully find out on Monday!

suggestions please!!!! December 23, 2008

We need some suggestions.  How do you tell a STUBBORN 2 year old that trying to burp a baby isn’t hitting?  We try and burp Eva (which if we don’t she will throw up) and we get a long lecture and rebuke for “hitting” by a very protective big brother.  Any ideas?  We have tried explaining it to him, but he is adamant that we are hitting her and telling us that we are being mean!

excitement in the air December 22, 2008

He is a little excited!

our new “normal” December 21, 2008

Eva has been home for two days now… this is going to be a long haul!  Jim and I are up until midnight with her trying to get her to keep food down and then we wake up throughout the night to check to make sure that she is dry and didn’t throw up.  And we are up by 7am.   Jim leaves for work and I spend most of the day either pumping, feeding Eva or cleaning up her puke.  Poor Josiah doesn’t get as much “mommy time”, but hopefully we will get this whole thing down soon.  Josiah still, thankfully, takes a nap and that helps me catch up.

Josiah ADORES his sister.  He loves having her home.  He is quite the proud big brother.  He will comfort her if she whimpers, gives her a pacifier, covers her up with a blanket, gives her hugs and kisses… never mind the fact that the she gags when he tries to give her the pacifier, or that he covers her head with the blanket, or that she turns blue when he hugs her.  It is still very sweet… but don’t feel sorry for her, she adores him back.

finally home December 19, 2008

Yes, this is no longer a question mark!!!!  Eva has come home!!!!  She came home late this afternoon!  She is on a feeding tube and pump, but praise God our little one can grow and mature with us at home!!  She will have home health visits and will have many doctors appointments.  PRAISE GOD!!!!!!!!!!!

“no mom” December 19, 2008

Every since we arrived at the hospital we have been letting Josiah push the elevator buttons.  He considers this his job and a way of “helping” with Eva.  Well, yesterday I walked to the elevator and without thinking pressed the button!!!  Josiah look at me, pointed his finger and said in the most serious tone “Mom, button no.  No button, mom.”  Talk about a kid making you feel like a kid!!!

Friday update December 19, 2008

Eva threw up a lot yesterday and only maintained weight… I am not sure if they will let her go today.  We will see.  She did however sleep through the night!  Well, sort of.  I woke her up a few hours in to give her food and she wouldn’t have it.  I could not get this girl to wake up!!!  If it like this now, then what would she be like as a teenager!  We didn’t expect that when portioning out her foods… no wonder she wanted to cluster feed last night!  We didn’t give it to her bacause we thought she would still eat every few hours!  So, we will be talking to the doctors today and see what they say… it could be today, tomorrrow, Sunday, Monday… I just don’t know!!!  But it is coming!!!!!!!!!!!!

2008 Christmas Copy for You December 18, 2008

Greetings dear family and friends!

It is hard to believe that we are closing another year already.  This year has gone by so fast!  God’s grace has been abundant to our little family.  The praise that He deserves is incalculable!  He has blessed us with gifts and trials throughout this year that doesn’t cease to amaze us.
Jim had many big things happen this year.  He is now a Master Clinician with Aegis Therapies (there are about 100 total in the nation).  He is a M.C. of strength training.  Jim also had the ability to go to Malawi, Africa this September.  Jim went with a medical team from Grace Community Church in CA (the church where John MacArthur pastors) for 2 ½ weeks.  He came home with so many stories and showed us many photos. He told stories of the simple things that we think are necessary, like shampoo, the Malawians look at as a something only rich people have.   He is looking forward to try and go again this 2009 calender year.  Jim also started working at a new location in IA.  Two locations technically, one is 1 ½ hours away and the other is 2 hours away.  We are thankful that his company gave him a car for the commute!

Josiah, who is now 2, is becoming quite the young man.  He is a very energetic, happy boy.  He enjoyed his summer playing outside with many types of sports balls.  He loves basketball and baseball.  Josiah is almost potty trained as well!  He thinks that this is quite an accomplishment.  He loves being considered a “big” boy.  He is also quite the observant child.  He understands that God is important as he sees Jim and I pray and serve, so he feels the need to copy.  We hope that God uses this to show him that he, like all mankind, needs a savior!  We pray for his salvation, what an amazing gift from God that would be!  It is also humbling to know he is watching and copying us.

Eva, our newest member, was born Nov. 12th.  She weighed 5 lbs 14 oz.  This was a surprise to us since she was 40 weeks and Josiah was large (9 ½ lbs) at birth at only 41 weeks.  Eva’s birth celebration only lasted about 3-5 minutes.  She never turned pink, but stayed blue.  She was air lifted to Children’s Hospital, where she was diagnosed with TAPVR.  That is a heart condition where her heart veins were not connected to the correct spot, but with Eva it was even more extreme, her blood was being sent to her liver and back to her heart and combined oxygenated blood with unoxygenated blood which would then travel through her body.  This caused her to only get 40% of the oxygen needed for her survival.  Our little one was in and out of open heart surgery less than 12 hours after birth.  We spent a long time in the hospital, but we look forward to the day when we are able to take her home.  Eva was a post heart surgery patient for about 2 weeks and then was a baby who couldn’t eat for a little over a month.   We are hopeful that she will be home by Christmas, and the doctors agree that that will most likely happen with the rate she is recovering.  We praise God for this precious little cuddle bug and look forward to, Lord willing, spending years with her.  Eva is a happy baby who loves to “talk” and cuddle.  Eva is short for Evangeline (pronounced line, not lean) Grace.

I have been enjoying being a stay-at-home mom to two little ones.  Some days are challenging, but we enjoy the time together.  My year has been busy with the birth of our daughter at the end of the year, as well as her hospital ordeal, and the earlier part of the year was spent with a physically difficult pregnancy and also spent with Josiah just having fun and “learning” new things.  I also enjoyed a ladies Bible study and a lso a playgroup from our church.  It was great to fellowship with other moms while Josiah played with his friends.  I also enjoyed hearing news of my first nieve being born this August!  My sister, Melissa, had a little girl, Anne Elizabeth, this year!  I have yet to meet Anne, but, Lord-willing, I will meet her on Christmas day.  My sister is coming for a week over Christmas and New Years!  Josiah and Eva will get to meet their first cousin!!!

We look forward to this coming year and  pray that you are all doing well.  We pray that God causes you all to draw close to Him and that His grace and mercy would rain in your lives and hearts.

God bless,
Jim, Traci, Josiah and Eva