Last night before I even got there they told Jeremy that I could hold her. So I get there and they get her in my arms so fast. 2nd time! This time was so much better. I felt like I knew her more, she moved around and stretched sooo much! You'll see her hand stretching in one of these. It was so great~
I held her for 2 hours. A Volunteer showed up and took the girls to do crafts for an hour. Props to the volunteer! Selah said her name was Taylor. :) Taylor is now my friend. (read previous post)
Enjoy my baby, I know I do!!!
xoxo Thanks for praying!!!!! I want her home for Christmas...can that be your new prayer? :)
Guess who got to swaddle her? :)
Thursday, October 30, 2008
Last night before I even got there they told Jeremy that I could hold her. So I get there and they get her in my arms so fast. 2nd time! This time was so much better. I felt like I knew her more, she moved around and stretched sooo much! You'll see her hand stretching in one of these. It was so great~
Wednesday, October 29, 2008
I haven't seen Veiyah since Sunday. I have to home school Madi (Selah said, what about me Mom? So I'm letting her type in her name...so here it is...SELAH...:)) and also get ready for my in-laws to come on Tuesday. So I've been extra busy. I also woke up with a migraine yesterday and was pretty much laid up all day. I finally got to go to sleep at 5pm and woke up around 8:30pm. Thank you Jeremy and Sarah!!! I love my sister~ She will seriously always make sure that I am okay before it disrupts her day at all. Does that make sense? Let's just say she puts others before herself. I would like to say that I do that. Maybe I do...I just don't do it like Sarah does. Seriously, ask any of my family. She is Super-Sister. Super-Daughter, Super-Mom, Super-Wife...etc. I guarantee anyone will agree.
Okay Sarah, you've had your 15 minutes. ;)
Anyway, today I woke up with a knot in my stomach. Pretty normal for me lately, but today it was bad. I started to think about it and I really believe that the longer I go with not seeing Veiyah, my body starts to tell me in different ways. Sounds weird and cult-ish, sure...but I believe it...I'm drinking that kool-aid.
So, I called Jeremy and we decided to meet up at the University tonight at around 5pm. I told him that I'd call to see how Veiyah is right now, and I'd email him back. All that to say that Veiyah is now getting 6 cc's of my milk per hour now! :) Don't know what cc's are? Good, me either.
I'm just so excited to hear everything she is progressing on!! It's actually looking like there is a slight beam of light at the end of this dark tunnel we've been in for 7 months!!! :)
They are doing the breathing tests again to try to get that breathing tube out, eventually.
I just want to hear her cry! Is that mean? I don't think so. I am seriously so excited to hear her just WAIL away! I don't think it will stress me out one bit. I will laugh. I will cry WITH her. I will nuzzle her little neck.
So now I'm just excited! My stomach still hurts and has that huge knot, but I'm making myself think that those feelings are of excitement, not of nervousness or guilt.
Why guilt you say? You know what one reason is. The other? My house. It is in serious need of TLC's Clean Sweep. Do they still air that show? Someone call them please! Tell them that my in-laws will be here in less than a week!!! Maybe they'll hear it from you more than I am hearing it from myself...
But what am I doing now? Yep, talkin' to all of you. I find it much more entertaining than laundry. I know a lot of you out there find something interesting and fun about house work. You know who you are...Sarah, Heather, Amanda....these 3 are my sisters (in-laws included).
So if you find it so much fun, let me look at my appointment book. Wait, that would be too much organization for me...so just tell me and I might remember when you are coming to help.
I'll make this a "short" blog today just to relieve you of boredom. I will get up out of this chair and make myself proud by making you all think that I'm getting off of this computer to do something productive. Oh the deceitfulness....
God bless you all today! Please pray that tonight's visit with our Veiyah is full of joy and peace.
Oh and pray that there is a volunteer there for the girls to do crafts with. I'm so not looking forward to hearing "Mom can you ask the nurse if there is a volunteer tonight now?" over and over again. The girls don't go to see Veiyah, they go for one specific nurse who has only been there once, Nicole. Nicole, you better be there. Even if your name has changed to Betty, Donna, or just "Volunteer", you'd be my new friend if you show up tonight. :)
HAA, Seriously "Volunteer", be their refuge! ;)
One last thing: A Quote for today~
"One reason we are so harried and hurried is that we make yesterday and tomorrow our business, when all that legitimately concerns us is today. If we really have too much to do, there are some items on the agenda which God did not put there. Let us submit the list to Him and ask Him to indicate which items we must delete. There is always time to do the will of God. If we are too busy to do that, we are too busy."
~ Elisabeth Elliott ~
I thought this was good for myself...I choose to delete laundry. I'm not being funny. No but seriously, I honestly like this quote because I find myself worrying too much about yesterday or tomorrow. My Mom always told me and still always tells me that the dishes will still be there in the morning. "Yeah, thanks Mom...can't you just come do them for me so they won't be?"
Veiyah is good TODAY. That's what matters...
Love ALL of you. Each and every one.
PS. YES I'M TAKING THE CAMERA! YAY!
Monday, October 27, 2008
It's amazing how time flies. I know that is so cliché but it is so true. Veiyah is already a month old! To think that we have gone through such trials in such a short amount of time is unbelievable.
Veiyah is doing well. They tried to take her breathing tube out to see how well she’d do on her own. They tested her all week by turning the tube off for a couple hours at a time. She did very well during the tests, so they felt comfortable taking it out. Well, she didn’t take deep enough breaths. This is very normal for premature babies, especially those who have been on the breathing tube since birth. They will continue to do tests until they feel comfortable to try it again. Of course I am looking forward to this, but I am just fine waiting till she can be strong enough to where everyone, including myself, feels comfortable with her breathing.
They have turned Veiyah’s Morphine drip back on. She started to get very irritable and showing signs of discomfort and possible pain. Sounds just about right to me, with having surgery just a week ago.
Jeremy went to see her yesterday and I did later on along with a lot of my family that wanted to see her. Jeremy also went to Aderah’s gravesite. He left some flowers there and noticed that another baby has been buried since Aderah. This brought me such sadness. I just hurt so bad for that mother. I will go soon to see Aderah’s gravesite as well, and see the name so I can hopefully leave a comment on the baby that was just laid there’s, online obituary. I had people do this for me and I really appreciated it.
Not much more on Veiyah right now, except that she is so absolutely BEAUTIFUL! J I, of course, can’t wait to hold her again and pray for the day that I can try to nurse her. I long for that bond between us.
I will post pictures as soon as I can get them from my nieces camera….That’s your cue Bonnie! ;)
Now I feel like writing down some feelings. Feel free to read or pass by. This time of my life, our lives, has been so dynamic, so compelling, that I feel like I have to almost give birth to my feelings and emotions. Sorry for such a vivid explanation, but it’s the only way I know how to say it.
My brother JJay got married this weekend to my beautiful new sister, Ashley. My Dad married them as he has all of his kids. We are all 5 now married...with children! Haha Funny, but true. I haven't seen my Dad perform a wedding since my brother David's wedding. I don't really remembering listening to Dave and Lisa's wedding vows as I was one of the bridesmaids and my daughter Madi, 2 at the time, was a flowergirl. That was a challenge in itself. Listening would have been extra credit.
I listened to the vows JJay and Ashley made to each other yesterday. They were the same vows my Dad wrote up for Jeremy and I 10 years ago. It was so interesting to hear the words for what they actually meant vs what they sounded like when you just wanted to say them to get them out of the way so you can get on with the honeymoon already.
Jeremy was 20 and I was only 19 when we were married. Back then when I heard people tell me I was too young, I didn’t understand why THEY didn’t understand that I was NOT too young. Now, as I look back, I can say that I now understand why they said or thought that. We were young. We thought we were in “love”…boy were we wrong. I honestly can say that I had no idea what love was until …..well….now?
Don’t take me wrong; I have loved Jeremy our whole marriage. What kind of love though?
At first, I love you because I want to grow up and get married now, be on our own, with nobody telling us what we can and can’t do anymore. First year, I love you because this first year is so fun playing house…even though it was probably one of our hardest years adjusting to one another. Second year, I love you because we’ve grown and are having our first baby together. Third year, I love you because I see you in my daughter and I’ve witnessed your unfailing love for her and for myself as I labored and as we raise her. Fourth year, I love you because I am seeing you turn into a Man of God and the head of our household. Fifth year, because we made it to 5 years! It must be love!! Sixth year, because you gave me my second daughter and you would do anything for our girls and to make sure that they and I are taken care of. Seventh year, because we didn’t get the seven year itch!…We are perfect… right? Eighth year, we’re still here…I love you because I love you.
Ninth year, because we found out whom we truly are to each other, who we are to God, who we are to our children and who God is to us. Because you stood by me during a depression that I had no idea why it was even happening and either did you. Because you saw me through that time and made your vow “In sickness and in health” real. Because we found out we were having another baby and it turned into babIES! Because when we found out that our twins were girls and you have wanted a boy so much, you rejoiced with me and told me how much you love girls. Because when I came home crying telling you that the Dr told me that I was in a dangerous pregnancy, you held me. Because the few days after we were told that, I saw you step into a whole new role as my husband, the father of my 4 children, and the son after the heart of our Almighty God. Because when we were told that Veiyah (Baby A) had a heart defect and organs on the wrong side of her body, you were scared to death and you weren’t afraid to show it. Because you spoke truth from your heart about how you didn’t understand why God would do such a thing to such a precious, innocent and pure baby that didn’t deserve it. About how you weren’t sure if you could trust God anymore…how you didn’t know how.
Because when I couldn’t stand being home anymore while I was so nervous to NOT see the babies on the monitor, you arranged for me to be admitted to the hospital to be taken care of. You didn’t show your worry about the financial strain that would take on us. Because when we decided to get the Amniocentesis test to see if our babies had Downs Syndrome, you fell even deeper in love with our twin baby girls. Because you took a stand and let whomever you could know, that you were not about to give up on these babies. That you were a man of the most high King and that you would care for these babies like no other, no matter what the case. Because when that test came back negative, the gleam in your eyes gave me butterflies.
Because whenever you planned to come down to the hospital to have a “Date Night” without the girls, just to watch a movie or whatever, something ended up happening with the monitoring, and you still tried for the date night the next week. It happened that next week, didn’t it? Because when we found out that Aderah, (Baby B) now had a heart defect as well, your trust and strength outweighed mine and you encouraged me through your own fear.
Because the night that we were supposed to play “Hospital Bingo” and you saw something different happen on the monitor, you stayed completely calm and didn’t say anything to scare me. Why did I mention the Bingo? Because I was seriously upset that I was going to miss that. (Hehe)
Because when you got up to look at the monitor reading, you so calmly asked me to turn up Aderah’s monitor to listen to her heart rate even though we both knew it was probably still going 300+ beats per minute. Because when I couldn’t find it and the nurse couldn’t find it, you held my hand. Because when the Dr’s got Aderah on the ultrasound and we saw her lying there with no heartbeat, you cried with me. You trembled. You loved her. You love her.
Because you were by my side as I carried my unborn child’s body who’s spirit was with Jesus for 2 more weeks. Because you needed your rest, so you left 2 hours before I gave birth to our little girls. Because you most likely broke the law and drove as fast as you could to get there. Because you didn’t make it, but I felt you there. Because we looked at Aderah together and saw how absolutely beautiful God had made her, but cried tears of joy knowing she was being held by her Jesus.
Because the night we almost lost Veiyah, we witnessed a miracle together. Because throughout her life of pain, surgery, scares, and almost loss, you held on to Madi, Selah, and I. Most importantly though, Jesus. Because you held our family together, with the help from Jesus while we buried our daughter, Veiyah's twin, and Madi and Selah’s sister.
Because of what we’ve become this 10th year of our marriage. We’ve finally become one. We have, in such little amount of time, put our vows into full speed. We have submitted to one another, to God, and to our children. We have become a family and this, THIS is what love is. My prayer for my brother Jjay and my new sister Ashley is to find what love truly is.
I love my husband. I love you, Jeremy. I know what love is.
Wednesday, October 22, 2008
Ani, the girls, and I are back home today. We have been staying at the hospital since Friday and it has been a long stressful weekend. The stress of these trials we are going through takes a toll on our bodies and we have been dealing with sickness and weariness. Please pray for all of our mental and physical health.
Veiyah has been doing good since her surgery. Her vitals have remained stable and all the blood tests they have been doing have been ok. On Sunday they took her completely off of the morphine, which she has been on since birth. So for the first time on Sunday, she started to wake up completely and to be able to move a little. She was able to open her eyes all the way for several seconds and look around. It was amazing to see her look at us and respond to our voices.
Today they removed the bandage on her chest and removed 2 tubes that had been inserted in her stomach to siphon blood and liquid away from her heart. These were good steps, but I can’t explain how difficult it was to see my tiny baby girl laying there with incisions and holes in her body. How amazing the human body is to be able to handle this kind of stress and be able to recover. What a powerful reminder that we are a created being, for there is no way that the complex and ingenious design of the body could be by chance.
Even though Veiyah is doing good, we still have to remember that she is a premature baby and that in itself causes her to sleep a lot and progress with her health slowly. We praise God for every moment we have with her, as in all rights she should not be alive. We are amazed at her courage, determination, and fight. She is such an example to us on how to live our lives. God does work in mysterious ways, using a 3-week-old baby to teach me about the incredible powerful and persistent yet gracious and loving nature of Himself.
There is something I have been thinking about recently that I wanted to share. Veiyah and Aderah are identical twins (with the word “are” being a key part of that statement), so they share the same DNA. There is an unexplainable bond between identical twins, and it is amazing for me to think that Veiyah still shares that bond with her sister in heaven. I don’t understand it, and probably am not explaining it very well, but I believe that Veiyah and Aderah will always share that connection, and what a connection that is with Aderah being in the presence of the Lord.
Veiyah also has a health condition where most of the major organs are on the wrong side of her body, and the major sections of her heart are formed opposite to how they should be. Veiyah is alive and here on earth, Aderah is alive and in heaven. In many ways Veiyah is a mirror image of her sister in heaven. What a powerful reflection of the Lord’s face I see every time I look at her.
I guess the reason I state these things is that I feel like Veiyah’s life is very special and she is called to do great things. However, even with everyone’s encouragement to always trust in God and to never fear, I am still anxious for her. That is why I ask everyone to continue to pray for her healing. Please join with us and pray that Veiyah will continue to heal, that the One who creates and gives life will re-create her body and continue to breathe healing life into her. I am a jealous father and so of course I want to see Veiyah healed for myself, but I also desire that her healing and her life will bring glory to God. Someday soon I want to be able to lift her high and say this is my daughter whom God gave me.
I pray that she will grow old and bury me, for I cannot bear to bury another daughter.
Please agree with me for life, and rebuke death. God is life and I put all my trust in Him. Thank you all for your continued prayer and support.
Veiyah was in surgery from 2:30pm to about 8:30pm. It was a long wait for Jeremy and I. We kept our time by posting pictures, prayer devotionals, videos, etc.
She came back in a big crib with all of the surgeons around her. I wish I had my camera at that exact time. She was sooo tiny in that big ol' thing!
Dr said she did really well! They tried putting the 3.5 mm shunt in and it was actually too big. She is sooo tiny! So, from what we remember of what Dr. Davis said, was that they had to place the shunt somewhere else, and they felt very confident about where it is at and that it worked very well.
Veiyah's stats are all ok...for just being in from heart surgery that is. Her blood in her brain and kidney's is a little low, but due to her actual heart situation, the Dr's aren't worried about it. She will be receiving some platelets (sp) tonight, as her white blood count (i believe) was a bit low.
She is breathing well and she looks so sweet. Here are some pictures. Thank you all so much for your AMAZING prayers and your willingness to stand with us during this incredibly hard time of ours and Veiyah's lives. May God richly bless each and every one of you. xoxo
Keep Praying during her recovery!!
Press the play button and it will open a new webpage. Have fun! You don't have to watch the whole 2nd video...just crazy to see how much it takes to get this little one out on her way~
|Make a Smilebox scrapbook|
I was doing my quiet time with the Lord this morning before surgery and wouldn't you know this was the devotional for today, October 17. How awesome is our God!
My Utmost for His Highest
"And greater works than these shall he do; because I go unto My Father." John 14:12
Prayer does not fit us for the greater works; prayer is the greater work. We think of prayer as a common-sense exercise of our higher powers in order to prepare us for God's work. In the teaching of Jesus Christ prayer is the working of the miracle of Redemption in me which produces the miracle of Redemption in others by the power of God. The way fruit remains is by prayer, but remember it is prayer based on the agony of Redemption, not on my agony. Only a child gets prayer answered; a wise man does not.
Prayer is the battle; it is a matter of indifference where you are. Whichever way God engineers circumstances, the duty is to pray. Never allow the thought - "I am of no use where I am;" because you certainly can be of no use where you are not. Wherever God has dumped you down in circumstances pray, exclaim to Him all the time. "Whatsoever ye ask in My name, that will I do." We won't pray unless we get thrills, that is the intensest form of spiritual selfishness. We have to labour along the line of God's direction, and He says pray. "Pray ye therefore the Lord of the harvest, that He will send forth labourers into His harvest."
There is nothing thrilling about a labouring man's work, but it is the labouring man who makes the conceptions of the genius possible; and it is the labouring saint who makes the conceptions of his Master possible. You labour at prayer and results happen all the time from His standpoint. What an astonishment it will be to find, when the veil is lifted, the souls that have been reaped by you, simply because you had been in the habit of taking your orders from Jesus Christ.
We just got a call from the surgeons nurse practioner and were told that she is doing well! They are just now putting the shunt in. Obviously this means, she is all opened up. So to hear she is doing good, is GREAT! Praise God!
I actually taped her getting all ready to go and will post that here soon. Then you can all feel like you were here! If you don't want to watch, no problem...there are pictures below as well! :) Thank you all so much for your prayers! We know God is hearing them all!! xoxo
Video's will be next!
Hi everyone! This is probably my longest blog so far. I wanted to warn you before you get into the middle of it and are cursing me to get to the point. :)
Last night I dropped Madi and Selah off at my brother and sister in law's house so I could meet Jeremy at the University. We wanted to visit Veiyah together and were also told we might have a chance to talk with the surgeon.
I borrowed my sister in law's car so she could take my van and haul all of the kids around. I'm SO not used to little cars, driving a stick, or driving at night. EEK! More on that later, though. I got to the University around 5:20 and was going back and forth on my cell phone talking to Bonnie (Sister in law) about how to put the back seat up in the back of the van. Otherwise she'd have to just throw kids in the back w/ no seatbelts. I tried to help her with it when I dropped it off, but we got nowhere. I went back and forth for probably a total of a half hour on the phone on the way there and while I was there. Jeremy kept trying to tell us how to do it, but we were clueless. He finally admitted that he might have been thinking of our other vehicle and that he could be totally wrong. Long story short, my brother got home and snapped it in right away. Nice. I promise you this all has meaning to my story.
Veiyah looked so sweet. She was sleeping very deeply this time as they had upped her Morphine. She was taking more breaths per hour than they’d like so they gave her more drugs to help her sleep.
Have I taken too many breaths this hour? Anyone? Haha, very funny, I know.
She was so nicely “dressed”, meaning her bandages, tape, tubes were very new, fresh and she looked so clean. No strings hanging off the tape, slime all over her face…etc. Her nurse, I believe her name was Angie, had her looking great for Mommy. She laid so still being that tired, and looked like a porcelain doll.
Tina, the nurse practitioner for the heart surgeons, soon came into the room and started to brief us on what would happen on Friday. The surgeon came in shortly after and went into more depth of what we would expect from him. This first surgery is pretty “straight forward” as Tina put it. They are putting a shunt in, called the Blalock Tausig (BT) Shunt. This will keep what’s called the Patent Ductus Arteriosus (PDA) open. In utero this is open, as we don’t need as much blood flow to our lungs for oxygen since we aren’t breathing. When we are birthed, the duct closes so that the heart can do it’s thing on it’s own. Veiyah has one of many things which called a single Ventricle. She only has one chamber/ventricle that is doing all the pumping. It is doing double time, so it will ware sooner than it should. They will close up the PDA and put this shunt in to make way for more blood to her lungs as she isn’t getting nearly enough now. The next 2 surgeries will replace each other’s outgrown shunt or procedure.
So we get done talking and I go over to Veiyah. I started talking to her. “Veiyah baby, you are doing SO good! You better do good on Friday, okay?” So earlier Veiyah was so tired, remember. She didn’t MOVE. When I started talking to her, she suddenly started twitching. Her eyes were twitching and as I kept talking she was trying so hard to open them. They twitched and fluttered and then….THERE it was! My baby girl looked at me! Her eyes would then open and close over and over again as Jeremy and I made our voices known to her.
You guys, this was better than HOLDING her. You may ask why. Well, holding Veiyah was a lot like holding Aderah for me. Aderah was sleeping, as was Veiyah. It was wonderful to hold her, don’t get me wrong. This was so much more though. She recognized my voice and she wanted to see me!! I can’t tell you what this did for my Mommy feelings. I was SO excited and didn’t stop talking till Jeremy made me because she needed her rest. Hehe
I left the hospital exctatic. You could say that we were both on a little baby high as we exited her room. I told him that I needed this sooo much!! Thank you Lord for giving me this moment. It helped me WANT her more. Not want her as in want her around….but LONG for her. She IS my baby! Just days ago I prayed that Jesus would show me that she IS my baby. He SO did.
Even though we had driven down to the hospital separately, we just happened to park on the same level of the parking garage and just 3 cars down from each other. HAA Who would have thought….or cared…just found it cool I guess. ;) So I go to get in the car that I borrowed from Bonnie. I’m on the phone with her at the time and I’m putting the key to unlock the door. “Oh crap, I think I have the wrong car! Wait, no, I see my stuff in there!” Bonnie is saying my name like it’s the scariest name to say. “Oh Ani!! Did you lock my doors?” Of course I locked her doors. Don’t we all lock our car doors these days?
Come to find out Bonnie just knew there was something she didn’t tell me! Don’t lock the doors. That news would have been nice to hear YESTERDAY! (Adam Sandler: I seem to use this line a lot lately so I guess I need to give credit where it is due.) So I go stop traffic because for some reason, the hospital got popular at 6:45pm. I went over to Jer’s car to get him to NOT leave yet. He turned off his car and showed all the traffic to keep moving because he wasn’t going to open up a nice close parking spot for them anymore. Wow, did I get some dirty looks. We go over to the car and we try both doors, as Bonnie told us to just wiggle the keys in both doors to get it to unlock. Jer gets the bright idea of crawling in through the trunk. Guess what else Bonnie forgot to tell me!!!
The alarm will sound if you put the key in the trunk before you unlock the other doors. Is this in your instruction manual? Probably not. Just an old car that runs great and gets awesome gas mileage. ;) So now we have both doors locked, the trunk open with the alarm blaring through the parking garage and I’m sure everyone looking right at us. I put all my stuff on top of the car and rested my head on the roof as I laughed. What fun God places in the midst of our situations lately!! Anyway, Jeremy got the passenger door open finally, the key in the ignition and we were good to go. I know you are wondering why I’m blabbing on…but to me this was a pretty entertaining story.
With how excited I was to see Veiyah look at me, to how nervous I am for tomorrow’s surgery, you could imagine how I was reacting. We pull out of the garage and of course my husband has to be the one behind me to witness me running the first red light we come to. He didn’t follow so I knew it right away. I knew he’d call. “Hey, where ya goin?” What? I swore that turned green.
Like I said, I was not used to driving such a small car, a stick shift and on the freeway at night. I called Jer and told him not to pass me. I wanted to feel a little bit safe with him behind me. We had to break away from each other at some point, as I needed to go pick up the girls. It was a route he was used to taking for work, but a route I had only been the passenger for. It was such a weird night outside. The moon was full and the sky was HUGE! I kept my radio loud and sang my worship songs, praying all of the words for God to now keep me safe, while Jeremy wasn’t there anymore. I did it though, until I had to stop for gas.
I pulled up to the gas station and got out and got everything ready to pump gas, until I realized I didn’t know how to open the gas door. Call Bonnie. Do you believe it took her about 4 times to tell me where and how to pop that little door? I had to give her my exact position, how I was sitting, where I was facing etc. Come to find out, it was in the usual place that a gas door opener thingy should be. So I pump the gas and I head in to pay the $15. I had to of course get a fountain soda and some chocolate, only because I DESERVE it…so don’t be judgin’. ;) My fountain drink of course has to bump into the back of the spout and spill all over the floor and all over my arms. Wonderful.
So it’s not an easy $15 exchange anymore. It had to come to $18.78. K, I can handle the $3 extra. Do you really expect me to have exactly $.78 on hand? The lady behind me was carrying a newspaper, bread, milk, soda, a receipt to get the discount on her fill of gas, and I’m sure maybe the neighbors mail. Might as well. So, she’s really happy with me, right? Yeah, she sighed really loudly to let me know that she was. “Lady, I’d gladly trade lives with you right this moment. If it’s really getting to you that you have to hold the neighbors mail for a few minutes while I count out .78 in pennies, SO BE IT.”
I finally got it all counted out and made my way out the door and dropped all the rest of the change out of my wallet that I was holding upside down. Doesn’t that always happen? Of course.
That’s my story for all of you devoted readers. If you got this far, you like a good, entertaining story as I do. If not, It wasn’t very interesting.
Surgery is set for tomorrow-late morning. Jeremy and I will be there early and the girls will be somewhere. I am sure of that, but only that. Somewhere.
One of you asked if I wanted some kind of prayer-athon. I would love to get this going NOW if possible. If I knew how to get it started I would. Can anyone let me know how? I think it’d be great to know that there is someone praying all of the time in the next 24 hours. That gives time for us getting there, her prepping, surgery and some major recovery hours. You guys are so awesome and I couldn’t ask for better prayer warriors. Thank you so much for being so faithful. Veiyah is one blessed little Miss! xoxo
Veiyah looking at her Mommy!!
(She had some edema in her eyes and head last night...very normal)
AWWWWWWWW!!! Do you see them? They opened even wider but that flash wasn't her friend. ;) Love you all~ xoxo
I am overwhelmed with guilt today. I want to go see Veiyah, but I am so tired. It takes about 30-35 minutes to get to the hospital. I am still in my pajamas and it's 20 minutes to 2pm. So, do I force myself to go? Do I make a plan to go tomorrow? Oh, and why am I asking all of you for that answer? See my predicament here?
We are in the midst of hearing from the surgeons nurse right now. They are talking heart surgery THIS Friday. We will have to go up within the next couple of days to sit down and talk with the surgeons. They are also looking at doing surgery on the stomach shortly after. My poor baby!
Is she MY baby? Ugh, I can't tell you the mix of emotions I feel. I left this house (oh, by the way I'm home!) big and pregnant. I came home, still big ;) and empty handed. I know this is done often. A lot of Mom's have to come home while their child stays in the NICU. Why can't I just deal with it like they do? Or do they deal with it like I do? From the outside, I'd say they deal with it better than I do. I'm sure though, they'd have a thing or two to tell me about that.
Aderah comes to my mind each and everyday. I guess I somehow thought that she would be easier for me to deal with since she is "out of sight out of mind". Oh that sounds so awful. It doesn't sound good, but that's exactly what it should be. It isn't though, is it? She will be in my thoughts forever. It will hurt forever. I will love her forever.
I told Jeremy that I felt like I was not only mourning Aderah, but mourning Veiyah as well. He told me that we should be rejoicing Veiyah. There is a part of me, though, that mourns her not being here with me. So, when I think of her, I get sick to my stomach with nerves. I am so grateful that she is alive, but it's hard to make it real everyday. She's not here with me, so I almost have to remind myself of her still being here, and being part of this family.
I will be letting you all know when they decide to do surgery. If it is this Friday, I would like to challenge you all to prayer, a certain amount of time a day. God asks us to pray fervently. Fervently means a LOT! That's my definition anyway. Love you all~ xoxo
So I get a call from one of Veiyah's Dr Today (she has tons of them) for an update on surgery for next week. I could tell it wasn't all good news when she asked me how I was and I replied with a "Well that depends on what you are calling me about". You know it's not good when after saying that they do a little sigh and say "yeahhhh, I bet....” WHAT? Okay, here we go. There goes my stomach for the rest of the day.
They were doing their routine testing for Veiyah's stools; I figure medical terms are a nicer way than saying poop so I'll stick with stools. Two days ago she had tested positive for some blood in her stool. Then the next few came back negative. Radiology did some X-rays and found air in her bowels. I guess this is not a good thing....as it could cause a hole in the intestines. (This is just what I remember...Jeremy why can't you still be writing these??)
So far they don't see a hole, which is good. They are calling this whole thing NEC. I'll give you the fancy talk for this in a minute. What I can tell you in Ani terms is, that it is a form of colitis. So it means her tummy isn't digesting things the way it should. They have stopped her feedings completely to see if it clears up. They also started her back on her antibiotics to stop any infection.
It is believed that they caught it early enough to where the meds will clear this up and she won’t have to go for surgery. So, she cannot have heart surgery early next week as we were planning. It will be determined in a few days on how she is doing with the antibiotics. Hopefully it will clear up and we can do the surgery at the end of next week or beginning of the week of Oct. 20th. Otherwise, we will have to figure out surgery for this as well as the heart surgery which is NOT good.
When she told me all of this, you know what I did, right? Yep, went straight to the computer to look up the term NEC. Ugh, why do I do this to myself? It said the word “death” way too many times. I go numb everywhere every time I think of losing another baby. I almost start thinking things that are terrible thoughts that leave me feeling guilty later. Like, do I even want to get close to Veiyah? In fear of losing her and it hurting so very badly. My Mom told me that I need to make it a point to get up there to the University everyday now. I’ve had my break and my sickness has pretty much finished its course.
So, most likely just what you are asking, “Why is your Mom telling you what to do?” I was asking the same thing. She had a feeling that maybe I was putting things off so that I didn’t have to deal with what was happening. It took me a while to think about that one. Then she said that I NEED Veiyah and Veiyah NEEDS me! We need to hold each other close through this whole thing. We need to bond! How do you bond with this baby that has been in critical care since the second she was born, and have not been able to hardly touch her, let alone hold her? Okay so I totally broke down and realized that I believed as well that I was doing just that. I was living in fear of bonding with my daughter.
I called Jeremy shortly after my crying episode to tell him the new news. It’s been such a peaceful week of no crazy phone calls from the Hospital. Can’t it just stay that way? Jeremy answered and we decided to meet at the University at around 1:30 – 2:00pm. I got showered and got the girls ready as they wanted to go soo bad! I tried to make it a somewhat fun trip, so I got them a happy meal and we sang really loud songs the whole way.
We got there right at 2 and Jer was already there. The Dr came in and helped us better understand what was going on. So, here is the Dr’s version…I’m just posting the link if you are interested.
She said that we are pretty much between stages 1-2. Stage 4 is grave. Nice word, right? So, as I was standing there listening, she stops and asks the big question. “How are you doing, Mom?” What do I do? You guessed it. I broke down. I simply told her that I just buried my other daughter, Veiyah’s sister last weekend. I have empty arms. I was pregnant for 7 months with the excitement of twins, but only heard the bad news at every appointment. I lost Aderah at 28 weeks. We almost lost Veiyah the day after she was born. How do we keep going?? What else can you tell us that will go wrong?
I haven’t held my baby ONCE since she was born. Not ONE time! How do you bond with a baby w/out being able to nurse her, hold her, smell her, sing to her, listen to her breathe, wake up at every little noise with the wonderful thing called mother’s intuition? Change her poopy diaper and talk to her about how smelly her poopy is, trying your hardest to get a smile or a coo of some sort. How about crying over the things that bring you Joy, not fear? I remember being so happy with Madi and Selah. Happiness is what made me cry. I want that back!!!
The Dr and nurses and everyone else in the room saw my pain. “Anna, (my birth name and what anyone professional calls me so it’s not as personal) you can hold Veiyah right now if you want.
WHAT? NO!! I don’t want to hurt her. I don’t want to mess with anything! Deep down I didn’t care what I was thinking I just wanted to hear them say that everything will be fine if I really want to. Well they did. They told me that she needed it and I needed it. I SO NEEDED THIS!!!
Jeremy was running out to the van to get the camera. So he didn’t get the pictures of them first handing her to me. They got a camera and took it for Jer, but they printed them out. But please enjoy the ones after she was handed to me. I can’t tell you what this did for us, for Veiyah, Jeremy, the girls and I. It was such a bonding moment for all of us.
Before I stop typing, I will say one thing. Forget about your worries, hold onto the ones you love so very tightly and don’t ever let go. Love, Ani
Our First Family Picture with Veiyah!