the past week...

something i have learned in the last 2 weeks since ramey has been home is that i am thirsty!! i am in need of a camelbak. if you are not familiar with these things they are pretty cool. it is a water back pack that has a straw on it so as you hike, bike or run you can just put the straw in your mouth and keep on going. i need on of these. i rarely have the chance to stop and pour a glass of water.
my friend (the one who gave my kids the window paint) brought over something to try instead of the paint. now you would think that i would not try anything "artsy" again after the fiasco that was window painting but- no. we gave these crayola window markers a chance and i have to say that they are great. the kids had fun and i was not stressed out about the use of these things. if you were tempted to try window art- don't do it. if you want a different kind of art fun then go for the markers!
we went to our nephew's birthday party this past saturday. the kids had a great time and i will say that the wildlife museum wasn't bad. it was interesting and it was air conditioned...two good things. henry and daph had been before- back when we were going to the hospital to be with ramey. the crocodile was a hit with henry but daph showed us her more hesitant side.some of this week's findings...

daphne and her friend ellie hiding in my bathroom cabinet. if any of you noticed the grandma style aqua net hairspray know that it is not for my own hair but rather for the shellacking that had to be done (and blogged about) for daphne's dance recital in june. i may not be on the cutting edge of style but aqua net is something that i know to stay away from.

this is anna, affectionately referred to as the "little general" by her daddy. she can either be found hiding out in our pantry or hanging on the side of ramey's bassinet. she doesn't tend to mess with ramey but does enjoy staring at her. she may be almost two and all its glory but she is sure a sweet heart!



and this is what i was just looking at. ramey is snoozing the afternoon away in my arms. this is good and bad. good because i have a chance to get a drink of water and bad because she needs to eat now and sleep tonight. this is just a season...right? btw- notice the batman sticker? a gift from her big brother.

lastly...
three out of four kids in a picture is pretty good...and they were almost all looking at the camera. there is hope to be had for our christmas card picture.

a few pics...

i know she looks huge but she really is tiny. in fact she is still wearing premie clothes. can you see the red in her hair?? she even had curls after her bath. who knows what or who she will look like!

5 days in...

today was day 5 with ramey home. i thought i should paint the picture that is our home.

things are nuts. in fact i am not even sure if the first day of having all four home that i sat down once. i was running back and forth mediating fights, feeding ramey, correcting behavior, wiping rear ends, pumping, you name it... my in-laws were even there helping. i thought at one point, if i can't do this with two extra adults here how will i ever handle this on my own. thankfully as the days have gone by things have gotten better. the kids are still really pushing all our boundaries but we are holding firm!

ramey is really getting settled in. she has put herself on a schedule which is great!! she is like a little clock. she is also eating much better. i am really pleased with where she is five days in. i took her to the dr. on friday and she had gained an ounce and does not have a heart murmur!! we are really thankful about that.

for those of you wanting some new pictures...i am trying to upload them but for some reason blogger is having some trouble. i will try again later.

so this is our chaos but i am so thankful for it all!

she's home...

that's right. we brought ramey home today!! yesterday while i was at the hospital the nurse practitioner mentioned that she thought wednesday would be the day. she told me to call before i came up this morning and see what the plan was. at 8 am we called and they were already filling out her discharge papers! by 10am we were driving away with our newest addition in the backseat. the other three kids were at play dates so i had the awesome job of sitting with my feet up and holding ramey all i wanted without any chaos. we even watched family feud. can i just tell you all that i cannot remember the last time i sat with my feet up and watched a game show. it was like being a first time mom again.

daphne came home first and was a total sweetheart with ramey. she immediately wanted to hold her and kiss her. she sat for a good 30 minutes just holding her new baby sister. i would look over at my girls and daph would be sweetly moving the blanket away from ramey's mouth or touching her hair. it was very precious.when henry arrived he too was ecstatic. he immediately grabbed the pillow and wanted to hold her. i think he actually sat holding her for about an hour. i would look over and he would be kissing the top of her heart. he would tell me, "mom, i just love her. she's so pretty."

anna, well she kept her distance but would point and say, "baby. maya (mine)." she seems to be interested so maybe tomorrow we'll let her try to hold her baby sister.

ramey came home weighing in at 7lbs 13oz- just 4oz over birth weight. i am taking her in to see her pediatrician on friday so we will see how she does with eating between now and then.

i wanted to share a couple of other fun pics from today and one from last week. this first one is from breakfast this morning. note the goggles being worn around her neck. she is a nut!!this next picture is one we took when henry told us that he loves daphne's "earrings, golden hair and her abilities". not sure where the "abilities" came from from but it was pretty cute. he also sat down tonight and started teaching her letter sounds and some math problems. she was so quick to listen to him...she adores her big brother!

update + some thoughts...

i wanted to update you all on ramey and on little lesly.

ramey was stable enough this morning that she has been transferred to a hospital only about 15 minutes from our house. she is eating better and better. in fact i fed her at noon and she at all 70mL. the nurse called me at home about 45 minutes later and said they offered her 30 more mL after i left because she was seeming to be hungry still and she ate all of that too. hopefully this is not a fluke but rather the corner she needed to turn!

lesly has gone home!!! praise God she is home with her momma and daddy. what a long and hard road their family faced but look at God's sweet care for that little one. i am reminded of the scripture that says not even a sparrow falls to the ground apart from His will.

speaking of His will- some have wondered about our ability to not totally lose it or freak out through all we have been through in the last month. i thought that i would make an attempt to share some of our thoughts on the subject. you might think that because we have been through similar situations/diagnosis with henry that that might be how we keep it together. well if you remember my post from when i saw ramey in the hospital for the first time you might remember me saying that you can never be prepared to see your child in such dire straits. no amount of time in a neonatal intensive care unit prepares you to see your child so ill. others might think that because we have buried a child before that we are able to face these odds with more umph. no- each child is so uniquely different and loved so individually that one's life cannot be summed up in another's.

over the last 7 years as God has grown our family with more kiddos He has also been showing us more of who He is. He is God and i am not and that in and of itself is enough for me/us during all of this. to be real honest i found myself wanting to hide from Him in the first days of all this because i could not bear to ask Him for ramey's healing and His answer be "no". as one singer sings, "my faith is like shifting sand so i stand on grace." i am so thankful that His grace is sufficient in my weakness.

it can often be easy to give Him props (= church word for glory) for something if it goes the way we want it to. we have seem Him heal our son, henry. we were so thankful and were in awe of the one who created all things being willing to heal our precious son. we have also experienced God's "no" to healing ollie. why did He say, "no"? He said "no" because we know that in all things God works for the good of those who love him, who have been called according to his purpose. (romans 8:28) that isn't the specific answer that many expect us to have or want in regards to why God chose not to heal ollie here on earth but it is the reason. God is at work and because we can trust His character we know that He does all things for our good because He loves us.

there is no formula that we have tapped into to be okay with what ramey and i have been through. we simply have clung to the hem of His robe and trusted. there is a freedom in trusting Him. there is a peace in knowing that, good or bad, He is in control. ross compared it all to the way our story began at the first hospital. the first hospital did everything they could to help ramey and they ran out of options, they could offer nothing else to save our girl. the hospital where she ended up had many options and they dealt with babies as sick and sicker than she all the time. nothing we were up against was new to them. they had a plan. God has seen it all and nothing we have faced is new to Him. He has a plan and we can trust He is at work doing what is best.

my stubborn will never wants to be conformed to His because there is nothing good in me apart from Him but when my will is conformed i can see Him more clearly. i don't like the painful way that my will has to be broken but the result is so much greater. out pastor shared a piece of c.s. lewis' book the voyage of the dawn treader. in it a boy ends up becoming a dragon and when aslan, the king of narnia, tells him to take off the dragon skin the boy's attempts do nothing. then aslan penetrates the outward thick dragon skin all the way to the boy's heart and peels away what covers him and once again the boy is human. that is what this whole experience has been for me- God is peeling away all that is not pure and all that is not good. He is going straight to my heart and changing me in the process.

Lord, thank you for all that we have been through. thank you for the painful ways you have been pulling off my dragon skin. thank you that we can trust what You are doing even when it hurts or is scary or is not what we want. thank you for doing what is best for us all the time. You alone are God and so to You alone we give praise for what You have done.

a full day of fun...

yesterday was such a fun day with henry and daphne. we had such a great time with them even though we all were completely over-stimulated by the time our heads hit our pillows.

ross' mom & dad came over to spend the day with anna and so once they arrived we headed out the door. as soon as we got downtown we started to find a restaurant for lunch. we ended up at a favorite of ours- micha's. they have to have the best carne asada chimichangas in town (though tod, ross' brother, can grill up some mighty tasty carne asada too). a sweet older man offered to take our family picture- well a partial family picture.

after lunch we went over to the convention center for "the greatest show on earth". the kids were so excited! while we were pulling in the parking lot they spotted our friends so we quickly joined them in line. we were able to go into an arena where many of the animals were on exhibit. we saw elephants, tigers, horses and even a porcupine. after the animal exhibit we went in and were able to go down on the floor to watch some of the action up close. henry even got to go help some clowns and they also got to try on some costumes. all the sights and sounds were slightly overwhelming for me so i can totally understand why daphne looks a bit glazed over in most of our pictures.

once in our seats with popcorn and lemonade in hand (gold plated popcorn and lemonade i might add) the show began and i heard the giggles of two very happy little kids sitting right next to me. at one point henry said to me, "mom, i want to be in the circus." of course daph was enamoured with the costumes all the girls were wearing. ross and i were a bit baffled by one costume though... the girls were wearing plastic bodysuits that had handlebars attached at the hip. rather interesting in our opinion!
finally the show ended and we loaded up and took the kids to the hospital. daphne was so excited to meet her baby sister! i took her in and had the biggest smile on her face. i asked her what she thought of her new baby sister and she said, "she's so pretty." the nurses let us actually go into one of the rooming in rooms so that we could spend time with ramey as a family. the kids wanted to hold her so badly but she was sleeping and i just didn't want to wake her with the chaos that was sure to ensue. so instead of holding her we sang lots of songs to her. they both kept asking when we could bring her home. i wish it was today but she isn't ready yet.
as for an update on ramey- she is still doing well but she is taking in so much milk via bottle and tube that i am having a hard time keeping up with her. please pray that i can up my production so that i can keep up with her. she has been eating anywhere from 20 to 50 mL every other feeding. we are seeing progress but it is still slow.

we finished our day by heading to the goodings for a party. it was great to go out and see folks i haven't seen since before all this craziness. allison made some awesome food- in fact her desert was a very tasty ice cream cake decorated like an american flag...so martha!

we had a day filled with lots of fun and smiles. it was so great to be with almost all my family for a whole day.

thank you Lord for the time we spent with the older kids. thank you for laughter and hugs. thank you for yesterday.

update- thursday...

today ramey got her pic line removed!! yeah- one less leash attached to her. all she has now are her leads and her feeding tube.

she did okay yesterday with her feeds. in fact she ate one full bottle and 55mL of another. this morning was not as good but we are about to call to see how her evening has been. she has lost 200 grams over the last week so her attending has bumped her up to needing 70mL a feeding.

in other news... i had my shunt removed from my bladder today and well it was not the most comfortable procedure but not nearly as bad as anything i dealt with two weeks ago. the shunt was about 8 inches long and somehow that was in my walnut sized bladder and kidney... at least that is where i think it all was. i need to ask the dr. where it was and why. i know that sounds funny that i didn't know what was all in there but remember that i was totally out of it when my original surgery was finished and my extremely exhausted and stressed out husband was the one who received the info from the dr. all i know is that i am feeling some slight relief which is encouraging.

tomorrow we are taking henry and daph to the circus. we are going to have quite a day with them and i think they need it maybe as much as i do. it will be tough because we won't see ramey till late but i need some time with my big kids! i will post pics tomorrow of all our fun.

here are our latest prayer requests:
1. pray that ramey will take all of her feeds well
2. pray that i would have increased relief from my bladder issues and that my sciatic nerve would feel better quickly
3. pray that the time we spend with the kids tomorrow would be multiplied just like the fish and the loaves once were

thank you all for your prayers. have a great fourth of july!

anxious...

ramey is doing rather well each day. today she was taken completely off her fentanyl and tomorrow she will finish with the hydrocortisone. if she handles this well then they will be able to take out her pic line tomorrow. all she will have left at that point is her feeding tube which stays in till she can eat 65mL by bottle. she is only doing about 30 to 35mL as of now but hopefully she will get the hang of it over the weekend.

i am asking that you all pray for me as i head in to the urologist's office tomorrow. since all of the problems that occurred while in the hospital i have an anxious mind and heart about having to go. i would have probably avoided making an appointment all together except i was told that i have a stint in my bladder that has to be removed. the process that will be used to do this sounds very unpleasant and the thought of it makes me actually want to cry. if you know me well then you know that i am a pretty tough lady who once had a high tolerance for pain...that is no longer. i am much like a child terrified by the doctor's needle. the nurse at the urologist's office said i wouldn't feel pain only pressure but if i want to take some pain meds before coming in i might want to. hmmm... that says pain is involved in my mind. please pray that the Lord would calm my anxiousness and that the pain would be nonexistent or minimal.

we love you all.