Hey friends! I have my little bundle of joy on my lap cooing away as I am finally updating our blog. Aimee has come a long way so far. Right now she is still fighting a cold and an occasional low fever, but she is still her same sweet self. We have a wonderful hospice nurse that has seen Aimee from almost the first week. When she came over for a visit on Thursday she was teasing us that we got all worried about Aimee's cold and cough but when in came to hydrocephalus, it was just a walk in the park for us. It is amazing ever since the surgery Aimee has been so much more talkative. She still does not cry, but she sure can make noise now. Before she would only grunt and grimace to communicate, but now she is babbling and cooing like I have never heard before.
I remember listening to one of our pastors here at City Church and she was talking about what God has started He will finish. I remember thinking well OK that is great, but what am I gong to do about this little baby inside me that won't live past her birth. I have had to let go of Aimee so many times during this season of life that we are in. I can't tell you how hard it is for a control freak like me to step back form the situation and let God be in the driver's seat. So many times I can see myself saying "God , are you really sure you want me to go through this?" "Are you sure this was supposed to happen?" Every time I took control again I would wallow in despair and self pity I would cry and have an attitude, but it was my fault. When He is in control every thing works, miracles happen, we have true joy in our hearts and it doesn't matter what we are facing. I still struggle with control... (just ask my forgiving hubby) Even during her surgery I was questioning myself. I keep thinking I was a monster for making her go through such an invasive procedure, but as one of my closest friends reminded me, she is not mine. Aimee's life is not in my hands I don't control the every breath that she takes. We do protect her and provide for her, but it is because we love God, He gave her to us to love. Amen He has a plan to finish what He started and I am just enjoying it all! Praise God! Love you all ! -Beth

Friday Update

Good morning everyone. I have decided to post a day earlier because Aimee is having some difficulty and we really need prayer. After coming home Tuesday morning she had a slight cough and the doctors said she may have a small cold. Well, it has blossomed into a full blown cold complete with severe coughing and a lot of congestion. In an adult I would not be worried, but she is a 6 month old baby and just came out of surgery. Please be praying that her congestion disappears, her appetite increases dramatically, and she starts getting some rest. I feel in my heart that this is a spiritual attack on her with this happening right now. She has never gotten a cold or an illness but catching one right after surgery is a little suspicious. We took her to her doctor at Wo0dinville Pediatrics yesterday and the good news is he said her lungs give no indication of pneumonia or anything else and she is just going to have to cough away this cold without any meds. I will post again tomorrow with an update on her condition.

Christmas 2007

Yeah - it's a good Christmas. We were discharged from the hospital today at 10:30 AM two hours short of one week in the hospital. I am so tired of twin sized mattresses and cafeteria food but now we are about to go get some turkey and stuffing and PRESENTS!!! The baby has done amazingly well although the doctor thinks she might have a small cold or something but we'll wait and see. I want to thank each and every one of the people that have been praying for us. We could not have come this far without the prayer coverage. Go enjoy the rest of this holiday season and I confess I will not be posting for a little while. I will plan my next update for this Saturday afternoon for anyone interested in a follow up. Of course Beth may post again sometime in between I'm not sure. I know we have promised pictures and so here is the first of more to follow.

Merry Christmas Eve!!

Hi and thank you for waiting. I apologize for the slow communication since yesterday. We'll try to be better about that. So on to the news. And all of it is good news. We were moved out of ICU last night (Sun 23rd) around 4:00 PM. The baby has no more lines or IVs hooked up to her although she does have one unused IV still in her foot. They will keep it there for emergency purposes until we leave the hospital. Speaking of leaving, Dr. Doherty is the neuro-developmental specialist that has followed the baby's case since January and has stated both last night and this morning if all goes well, we may go home tomorrow morning. Talk about a Christmas present!! The baby is recovering well and her appetite is still increasing. She is almost back to where she was before in terms of sleeping and eating schedules. Sadly, her hair is gone but it is already noticeably longer than after surgery last Tuesday. We think she is dealing with a little bit of pain from sutures, blisters, and the nicks and scrapes she got during surgery. She has been given pain meds but nothing worse than baby Tylenol and a few things a little stronger than that. Mom and I have traded off getting sleep and holding the baby and are enjoying the more relaxed unit we're in now. Visits are welcome but you may have to make those visits in Monroe (smile) if it's after today. Last night we were very blessed to have Pastor Gini Smith from The City Church visit us for awhile. That was very enjoyable and reminded us that you never know who is watching your witness or praying for you in the midst of trials. Pastor Wendell preached an amazing message yesterday to always rejoice whether in feast or famine, gladness or sorrow. Last Wednesday I went Christmas shopping for Beth and as I was in line to pay, the person in front of me began complaining to the cashier how her December was so terrible and Christmas was awful. She railed about how she had only had 6 days off so far in Dec (correct me if I am wrong but wasn't there only 6 non-weekdays up to that point so far) and she had a slight cough and had not gotten a lot of sleep. The cashier expressed a little sorrow about this and asked if her family was ok. "O yeah, my family is great and I get to see them next Tuesday, and Christmas has been so easy to plan this year......etc. etc.......but December has been terrible." I started thinking. Have I been complaining to God that my December is bad because my daughter is in the hospital?! She is healthy and safe, ALL our bills are paid, my whole family is here, AND we get "Chrithmith prethenths" (credit goes to Pastor Smith for that.) I only ask that you look around you and see how many people really ARE suffering this Christmas. I hope we all enjoy an amazing holiday season but take a few minutes to reflect on the true blessings God has given you this year. 2007 - The Perfect Year. Merry Christmas.

The "List" continues:
This is a list of churches and/or groups that we know are either praying for Aimee or have directly supported us during our hospital stay. If you know of any others that are not listed please email a list of them to me at lynn.heinemann@gmail.com

The City Church - Kirkland, WA
Today's Church - Everett, WA
D Co. 1/168th GSAB & FRG Group - Ft. Lewis, WA
Amazing Grace Fellowship - Twin Falls, ID
Heritage Alliance Church - Twin Falls, ID
The Reformed Church - Twin Falls, ID
Hill Country Bible Church - Georgetown, TX
Nampa Lutheran Church - Nampa, ID
Mountain View Community Church - Ft. Collins, CO
Lighthouse Church - Twin Falls, ID
Immanuel Lutheran Church - Hood River, OR
Trinity Lutheran Church - Rupert, ID
Lutheran Church of the Incarnation - Davis, CA
Harvest Community Church - Alvarado, MN
The Men & Women @ www.Runryder.com

Quick note from Beth...

Daddy is on baby duty while I am sneaking upstairs to blog. Wow, I miss all of you so much. It is kinda weird when you start to recognize the staff here and know what their hours are. We are starting to get attached to our neighbors in the room as well as some of the amazing staff here at Children's Hospital. Our little Aimee is such a fighter. Today she has eaten at least 3 times with the bottle and given us plenty of heavy diapers... I will just leave that to your imagination. As far as I understand the shunt that is external is coming out tomorrow. Yay! One less thing to have to mess with. Her head must be so tender right now. She has about 4-5" of stiches on the very back where they removed the encephalocele and then about 3-4 " of stiches where they put in the shunt above her right temple she aslo has a few in her tummy where they finished with the shunt. All in all she kinda looks like she was in a wreck! This little girl is literally bruised from head to toe and yet she still gives us smiles when we kiss her and nuzzle her. What a sweet spirit to endure all this and still smile. Other than the brusing this little one is doing great. Her vitals are strong her appitite is growing the swelling is going down.
I gotta tell you, Lynn has been such an amazing hubby through all of this! Every time I break down and cry he has been there to hold me! Tonight when we went out to eat with his family I had to run back to the hospital to feed Aimee and he suprised me with Creme Brulee from the restraunt to cheer me up. (yum my favorite!) He is so protective with our little one making sure that every beep and ring that the monitors make is quickly taken care of. I am so excited that church is tomorrow! I am actually looking foward to the 9:30 service more than Christmas. I am just craving to hear what Pastor Wendell has to say. It seems that every thing that he talks about is specifically tailored to what I am going through. When I found out about Aimee's condition at 6 weeks along he was talking about enduring in the firey trials and when Lynn left for the army he was calling all of the men of the church to rise up and lead and support the body of Christ. I remember feeling so protected and secure knowing that. Thank God for the support from our church and all of the churches across the entire US. I personally want to thank each and every one of you who have been with us praying and agreeing with us for Aimee. I look at that list that keeps on growing and I just can't take it in. My brain just can't wrap around God's goodness... it never ends. Thank you all for being His vessels and blessing us.

Saturday Evening Update

Sat Dec 22nd 6:00 PM
Lynn again. It truly has been an interesting day. Most of it good Praise God. The baby had more lines removed today. Most importantly, they removed the arterial line from her wrist (an IV in an artery instead of the normal ones they put in a vein I guess). The arterial was used for electrolytes and glucose or basically her food and water. Now that it's out she is back on normal food again and mom even got to feed her a small amount of milk with the bottle. Beth also got the chance to hold her in her arms for about 15 minutes and she tolerated it fairly well. During the surgery on Wednesday for the shunt, the neurosurgeons ran a line out of her sutures from the back of her head because they thought the fluids in there were IV and CSF. Today they are certain it was just IV fluids and there is no CSF leaking through the plate. Also, we found out that there is no titanium or steel used in closing her skull. It is an absorbant plate that will disappear over time and the doctors are planning for her skull to close on its own sealing for life. That's awesome!! The only thing that she has had trouble today with is breathing normally because the breathing tube chafed her little throat terribly and when she is sleeping her heart rate will drop very low and then back up repeatedly. We don't know why she is doing this but please pray that it stops. She may be moved out of ICU tomorrow or day after but this is not confirmed - more rumors from nurses than anything else. Best of all, we got to cuddle with her a lot today even without being able to hold her and we got quite a lot of smiles out of her. Her eyes are still swollen but nearly as bad as yesterday and we might see those cute little eyes in the next day or two if we are lucky. She is starting to look normal again and she has not lost her sweet little personality. We are so happy about that.

Sat Dec 22nd 9:00 AM
Woke up this morning and the baby has had a little bit of a setback. She had the breathing tube in so long that her lungs and throat are swollen and not used to working for themselves. She is on oxygen right now and is very shaky. She doesn't look so well. Her vitals still look decent but she is kind of scaring mom (and dad) a little right now. Please be praying that she can start getting nutrients soon and start behaving more normal. Also, that she will gain strength and stop shaking but get some genuine rest. I will have Beth log in later and post her thoughts as well.

Good News!!!

Praise God we have some great news. The baby has done very well today. Where to start? The CT scan went well and the shunt is in place. They do not have to do another surgery to place it again. She is off of morphine completely and is starting to wake up. They removed the breathing tube from her and she is breathing on her own with no ventilator or extra oxygen and is resting right now. Also she got the catheter out so we are back to diapers again (NEVER thought I'd thank God for that.) If all goes well she may leave ICU tomorrow or day after. Maybe she will go down in swelling enough to see her little eyes in a few days. We are so thankful. Of course all that beautiful hair is gone but we don't care we are getting our baby girl back and she is responding to us like before. She kicks her feet and grabs dad's hand and Beth has gotten to help the nurse with a lot tonight getting her baby time in a little more. We also got a sleeper room tonight and so we will get some honest to goodness sleep. YES!!!

We will get back to you again tomorrow and look forward to any visits in the hospital. Cheers!

Surgery Update Friday

Fri Dec 21 1:20 PM
This is Lynn here are we are just waiting for another CT scan. The transfusion is almost done and her blood pressure (which was low overnight and this morning) and is starting to come back up again. She is regaining a little color as well. Poor baby only has a little patch of hair left. I feel like crying and laughing at the same time when I see that sorry little remnant of her once beautiful brown locks. Well, it will grow back I am sure. We miss her so much and that's ironic since she is sitting right next to us. Must be because we cannot hold her.

Fri Dec 21 10:45 AM
Today has been a little more difficult for me (Beth) to deal with. I don't think I realized how much I would miss holding and kissing her. Aimee has only a little corner of hair left on her now perfectly round head. They have an external shunt that is draining all of the fluid from under the scalp that was causing her to swell up towards the nape of the neck. I am so glad that I can be close to her, but I wouldn't wish this on anyone. Ever since the last shunt surgery she has been pretty pale. She has not had anything to eat since the 18th and they are talking about putting in an NG tube (Feeding tube through the nose) in after they take out the breathing tube today. (She is getting all that she needs from an IV though) I can't wait to see her cheeks rosy again. She has to have a transfusion today because one of the tests that they took showed that she is a little low on something hard to pronounce... I don't understand some of the medical jargon that has been tossed out lately. Lynn and I are doing alright. It is going to be so nice to sleep in our own bed though. Every night they take an X-ray of her to make sure that the breathing tube is in place and so every night we get a lead blanket draped over us and people swarming around. I think I am getting a little more use to it, but it was a rude awakening for Lynn! We had some visitors from Lynn's unit and also Lynn's younger brother and sister and dad arrived from out of town yesterday evening and got to see our little trooper. If you do come to visit it is a real shock and a little hard to see her in this condition. Right now I can't think of anything that we need. Just prayer for our little girl's healing from the surgery and rest for us. Love you all so much.

Surgery Update Thursday

Thurs Dec 20 9:00 PM
She is out of surgery and the shunt is in place. They also have a drain in the back of her skull to take off some of the IV fluids in her because she is so swollen. The catheter for the shunt is not in the perfect place according to the surgeons and CT scans so they will take another CT scan tomorrow to see if they need another surgery to revise the positioning. My entire family minus older sister is now in town and has seen her. Also, the Captain and First Sergeant of my unit at Ft. Lewis stopped by about 2 hours ago just to make sure everything was ok and we were being handled well. God Bless the Army!

Thurs Dec 20 6:10 PM
They are taking her in right now for the shunt. Please be praying. They are going to do some extra stuff to drain any leaked CSF besides putting in the shunt.

Thurs Dec 20 2:00 PM
So far it's a quite day. They took some x-rays earlier this morning to check breathing tube placement and they had planned to do the shunt at 1 but that was postponed again and possibly has a chance of being pushed to tomorrow. Her vitals are great and she is nice and peaceful. However, she has developed a real nasty blister under her chin cause she is so chunky and swollen with IV fluids. The blister is huge going from ear to ear and has broken open so pray for no infection in that. They are not super worried about it and have placed some silk gauze on it to prevent it worsening. Also, they have given her some diuretics to take some fluids out of her body and it's working pretty fast so far. My mom is watching the cell phones out in the waiting room so any phone calls should be able to get to me fairly quickly.

Surgery Update Wednesday

Wed Dec 19 10:00 PM
Yeah they changed it on us again the shunt surgery is tomorrow. Sorry about the lack of correct information however even we wish the information stayed the same.

Wed Dec 19 8:30 PM
We just got word that they are going to place a shunt in her tonight in about an hour. The procedure is about 30 minutes to 90 minutes long depending on how difficult she is. Since she already has a breathing tube in place it should not take too long. A quick praise report is that the CT scans show her ventricles in her brain are most likely connected so only one shunt will be needed as far as we know now. Also I want to tell you we really appreciate the visits we have received from everyone. We welcome visits from friends and family and ask that if you would like some time to visit please call us and let us know when you are coming by. They will only let 2 visitors back here at a time and it gets really boring in the waiting room so plan accordingly. We are pretty peaceful back in her room here so I ask that no one feel obligated to sit in the waiting room for hours; we would hate to do that to you. We just ask you pray her next procedure goes well without any pain for her and that the one shunt is all they will need. Will post pictures as soon as we are out of ICU and I can turn my phone back on to take them.

Wed Dec 19 11:45 AM
Aimee is now considered to have hydrocephalus and is scheduled to have one shunt placed this afternoon. Please keep praying that this will not come to pass but if it does we also need to pray that she will not have any bleeding in the ventricle where they place the shunt. If any blood ends up in the ventricle it will plug the tube for the shunt and they may have to redo it.

Also, I would like to offer up a prayer for the little boy in the bed next to Aimee. His name is Kyan and he is waiting for a replacement liver. He has cancer in his liver and is only 2 years old. Please pray they find a donor organ and recovers well from his illness. Also pray for mom and dad that they will get some much needed rest and uplifting.

Wed Dec 19 10:00 AM
We are alive again. At least I am. Beth was awake early and with the baby but I rolled out of bed drooling and half-comatose about 10. Of course that's because I was sitting next to her until 5 AM reading Romans and willing her to keeping breathing. She is still stable and sedated.

So today here is the scoop. The ventricles in her brain (sac like structures in her brain that collect CSF) are already filling up and she just went in for another CT scan (10:00 AM). She is really puffy on the back of the head and neck and they are hoping it is not from CSF leaking through the plate. If she ends up having a shunt put in it will be this afternoon or this evening. Again, we don't want the shunt put in because 40% of them fail in the first two years and have to be replaced or revised numerous times. They can get clogged or fail or just stop working. Also, we want the tubes connecting those ventricles to open and allow CSF to flow between each other for absorbing. However, God's will not our own be done. Last night I was sitting alone and thinking (which tends to get me in trouble) and it occurred to me that being a new parent is like viciously ripping out your heart, putting it in a onesie and watching it poop. I am sure it does not get easier with time. It only gets harder as you watch your heart learn to walk, talk, first day of school. When you learn it's not perfect and lies to you the first time. Graduation, marriage, and grandchildren. Man I just got started I don't need to be thinking of grandchildren any time soon. Will post later tonight possibly 8 or 9 PM PST with new info.

We are one happy people!

It's Beth again! I know some of you have never met Aimee and this is a picture of what she looked like when she was first born. The encephalocele had gotten quite a bit bigger-almost as big as her head and was causing a lot of breathing problems. But now the encephalocele is gone! Lynn and I got to see her for the first time after the surgery and already I can't believe how much she has changed. She is somewhat puffy and she got a pressure bruise on her left chubby cheek, but other than that she is still the most beautiful little girl I have ever seen. They have a mesh cap on, but it looks like they shaved the back part of her head. :( It was hard to take it all in at first, she has about 10 different lines going in and out of her. They did need the transfusions during the surgery so they are checking her constantly making sure that she won't have a reaction to the blood. I am so thankful for the doctors and nurses that are taking such good care of her a making sure that her every need is taken care of. Lynn and I can see how God has orchestrated everything perfectly! From the army to the church we are part of and the friends we have made. What an awesome God we serve! Today we were blessed with so many loving friends and family that are doing everything they can to make us comfortable. Pastors Jude and Becky Fouquier stopped by at the perfect time just as we handed Aimee over to the doctors to begin the procedure. I didn't want to let her go and walking away from her knowing that there was nothing that I could do made my heart so heavy, but seeing their faces and having them lift us up in prayer made such a difference. Thanks guys! I love you so much. Also I want to thank everyone who has stopped by to just stay with us and help us keep our thoughts from going the wrong direction. Already her ventricles are starting to fill up so there could be another procedure again, but we are praying that this is it!
Goodnight Love you. I pray that God blesses you richly in every way.

Surgery Update

Tues Dec 18th 9:00 PM
The nurses were able to find me (Lynn) a sleeper room so Beth is staying with Aimee for the night and I am crashing upstairs. Please keep the hydrocephalus in your prayers because if it does not go down they will have to put in the shunt. I need sleep and will post again tomorrow.

Tues Dec 18th 8:00 PM
Here is the update as of 7:45 PM. Aimee went into surgery at 3:45 PM and came out at 7:15. She is now in recovery and we are waiting for her to wake up before seeing her. There are some significant things that need to be prayed for right now. She went through the surgery just fine without any hiccups. She is asleep and recovering well. The doctors had to do some transfusion more for preventative measures than any emergencies. However, if you recall we were praying that the CSF (cerebro-spinal fluid) buildup would be handled by her body and we would not need a shunt. They did a CT scan about 30 minutes ago and without the encephelocele, the fluid is already building up. If it does not start getting handled by the ventricles in her brain, they will have to do another surgery either tomorrow or the day after to put in a shunt. Please declare in prayer that her brain will start absorbing that CSF right away. She is strong healthy and recovering but we want that CSF to start being handled correctly by her body. The encephelocele is gone forever and plastic surgeons have closed her skull to look normal and whole. Praise God!!!! We love you guys will post again as soon as possible.

Todays the Day

Very quick update because we do not have a lot of time. The hospital called this morning and the surgery was moved earlier to 2 pm. We will be arriving at the hospital at 12:30 for pre-op checkin and procedures.

Thank you for your prayers and if you feel like visiting today or in the next few days please call at 425-463-6492 to find out a good time and where our room is.

Our Cup Runneth Over

Malachi 3:10 "Bring the whole tithe into the storehouse, that there may be food in my house. Test me in this," says the LORD Almighty, "and see if I will not throw open the floodgates of heaven and pour out so much blessing that you will not have room enough for it."
This is the description of the last week and a half. Some may not have heard so I will tell the whole story. My Army insurance up until Dec 2nd covered 100% of the baby's medical expenses and all with no premiums or monthly payments. After the 2nd though, we started paying premiums (which are actually quite reasonable) and insurance covers 100% only after a $1,000 deductible. We had little choice but to choose this plan and have faith in God's protection. Last week during Beth's cell group at our house, someone left $1,000 for Aimee's surgery. What a blessing. Last night , our church also had another group take an offering and sent us a check. Then my unit with the Army at Ft. Lewis went through Atlas Intl. and adopted our family for Christmas. They delivered a stack of presents, gift cards, and stocking stuffers to us this morning. With that came another financial gift. All together, over $4,500 in just cash has been given to us in the last 3 weeks. We have also received over $700 in gift certificates to Safeway for groceries or Chevron for gas or other random stores.
Beth and I are unsure in most cases who exactly to thank for these gifts. Matt 6:2-4 "So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by men. I tell you the truth, they have received their reward in full. But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you." Everyone that has blessed us has been an amazing representative of this passage, quietly slipping a few $20 in my hand in the middle of a group of friends, leaving cash in our house with no note betraying identity, giving gifts to please your Father above - not to receive praise and accolades from friends here. We love you immensely. Every time I think of the friends and family we have, I can't wait to spend eternity with you to understand how God built you specifically for your purpose. Some have a innate gift for music, worship, and gentleness but don't have a clue how to handle simple tools......screwdriver....hammer......you know who you are. Other's are determined to conquer the world for Christ one Starbucks at a time, and shockingly, ever Starbucks in the Puget Sound gets more Christian every time I walk into one. It is an honor to be related to you either here on Earth or in heaven in Christ. Merry Christmas to you all and we pray for blessings for each of you far above and beyond even what we have experienced.

Beth's Story

Hi everyone! (It's Beth this time) So... we got a call from Children's hospital today and as far as we know we will be going into surgery this Tuesday. There is a long surgery ahead of Aimee's and the nurses told us to expect her to to go in early in the afternoon. Our little overnighter we had got us bumped up from the 11th of January to Tuesday! Praise God! He always has a way of working things out. We went to a great Christmas party I thought you would like to see what our little Chubster looked like tonight!
I have the most amazing story! I suppose it started when we really decided that no matter what we were going through financially God was going to get first dibs and then some. Lynn and I have been faithful in giving our first fruits, tithes and offerings for almost the past 2 years. Just like in Malachi 3:10-12 He has poured out His blessings on us. I cannot even begin to sum up the generosity that our family and friends and even anonymous people have blessed us by. It has been so humbling to be on this end receiving all of the gifts and blessings. A few weeks ago I was hosting a book group with girls from City Church and when everyone had gone home I was cleaning up the kitchen and found $1,000 in cash on the counter. Aimee's surgery had a thousand dollar deductible that Lynn and I were scrimping and saving for. Not to mention we received $500 from family the day before and that caught us up on all of our bills and later that night we filled up our fridge with a gift card to a grocery store from an unknown employee at Lynn's office. If there is one thing I have learned during this time is that He is never going to leave us. Matter of fact just looking back at the whole experience I don't know if I have quite ever experienced God's love in this way. It is so unconditional and undeserved. I have always felt like I have to earn or deserve what I get, but I think God is teaching me by taking away everything that I could do to make myself feel worthy and just proving He is God and He is enough. It is awkward and uncomfortable at times, but I am learning and growing.
So there is a little glimpse of what is going on in my head and what I am learning as I am going through this season. (Thank God it is just a season!) I love you all so much. I hope that all of you know just how much you have touched our lives and our hearts.

Back at home

We were released from the hospital last night about 5 pm. The neurosurgeons had been trying to take advantage of the system to get Aimee into surgery today (Thurs 13th) but another emergency case came in that could not wait for the operating room. The surgery is officially Tuesday 18th. I pray that is the last change to the schedule. We just got a call from Childrens and they want us back tomorrow (Fri) for another lab - I really hope we are not there overnight. The baby did very well in the hospital got more sleep and food, although mom didn't like that vinyl couch so much. We need specific prayer for the baby for a couple things. 1) That she will not need a shunt after the surgery but her brain will start draining CSF (cerebro-spinal fluid) on it's own 2) she will not get infection after the surgery 3) her brain will pick up and start developing again after the removal of the encephelocele. Beth and I are ok and do not need anything at the moment we can think of but we definitely want you prayers. Thanks and hope Christmas plans are going great for you.

Hospital visit

These are not very recent pictures but they are some of my favorite. Right now we are in the hospital having been admitted about an hour ago. We are waiting for some time to grab some food we don't get much time especially now that the cafeteria is closed. Maybe we will find some peanut butter packets or something.
Here is the situation. The operating room staff gives priority to children that are in-patients vs out-patient for surgery scheduling. Since the baby is now considered in-patient, there is a strong push to get the surgery done in the next few days. I do not know the likelihood of it actually happening but our specialist thought it would be a pretty good chance. So if you want to pray for something, please pray for very little blood loss during the surgery and that she will not need a shunt. We are praying very strongly that she will not need the shunt. Also, check back frequently as I will be trying to keep this post going with current info.

Headed to the Hospital

I think the label is a little unfair. Beth says I am a mom in training today because I am taking care of the baby. Isn't that what I've been doing for over a year now? We went to an awesome Christmas party last night put on by the executive director of Families Northwest. For all you kids (including high school & college) out there, grownups DO know how to have fun. After coming home though the baby went into hyper mode and kicked and squirmed ALL NIGHT LONG. Fortunately, I could sleep through the Apocalypse but Beth was awake pretty much all night. So here I am taking care of the Espresso Baby and a mom who's about to crash.

Update 2:00 PM Dec 11th, 2007
We are being admitted to Children's Hospital for observation because the baby had a very hard night. She seems to be very uncomfortable and agitated at best and possibly in pain. Not sure what is going on but the Hospital staff are nervous and want to see her right away. Be sure that I will keep you up-t0-date here as soon as I find anything out.

God Bless

TGIF!

Christmas is coming and the goose is not the only thing gaining weight. Beth took Aimee to a doctor's appointment yesterday (Dec 6th) and she is now 13 lbs. 6 oz. Amazing for a baby that was never supposed to grow or develop. Seattle Children's called me yesterday however and is thinking about doing the surgery next Thursday Dec 13th. Unfortunately, I cannot give you any more accurate info because at this time, we don't even know if they will proceed next week or not. Kudos to the medical community for timely communication (no offense to any doctors or nurses, CNAs, LPNs etc. out there - we love you guys.) So while we are waiting for info on that, family is coming for Christmas, Washington state still has not called me up for the flooding emergencies and everything is generally quiet right now. We're quite alright with a little peace and quiet right now.

Happy Holidays Everybody!

A Brief History

Some have asked for pictures and I am completely willing to oblige. Here are what I have at work and a few million others at home. I may be biased but I think she's a cutie. Let me bring you up to date on the entire issue that's going on. I know that some are not sure of everything going on with her and lets hope to fix that. I apologize for my bad communication. Last year I joined the Army Guard and shipped for Basic at Ft Jackson, SC on Oct 30. I was given 3 minutes to call Beth on Nov 2 for paperwork at which time she informed me she was pregnant. We were excited but I was bummed to be missing it all. Many have said I am crazy but I guess we'll find out next time. Beth, however, is an amazing wife and was able to carry on with life. She maintained a housekeeping business, kept after a home, was involved at church, and went through a pregnancy all without her husband at home. I still don't know how she did it.

I came home for Christmas break between Dec 18, 06 and Jan 3, 07 and enjoyed the holidays with family. I had pneumonia the whole time and Beth had morning sickness AND the stomach flu but we could not have been happier to see each other. I went back to basic and waited for more news about the baby. The day I went back, the doctors discovered there was something unusual and asked Beth to go to a specialist at Seattle Children's Hospital. I remember crawling through snow and freezing rain on January 18 when I received a Red Cross emergency message from Beth. The doctors had discovered a problem with the pregnancy and the Army shipped me home within hours to be with my wife. During the first couple of weeks of pregnancy a child has a small tube or line of nerve cells that eventually form into the brain and spinal column. That tube (referred to as the neural tube) normally closes at the ends and forms into the skull and spine, protecting the precious nerve cells. However, the tube did not completely close in Aimee and her brain was starting to develop outside of her head as well as inside. She was 2 and half months along when we discovered the issue and doctors told us she would never grow to full term and would miscarry within the next 5 weeks. We decided against "terminating" the pregnancy believing God had a plan for us even though life looked a little bleak at that moment. I went back to basic and graduated a week later; from there I went to Ft. Eustis, VA to be a helicopter mechanic trainee.

Beth continued to work and take care of herself. She threw herself entirely into spending time with church family and friends who have been invaluable during this time. We believed in faith that the baby would NOT miscarry and continue to grow. As time drew on, the baby kept growing against expectations but the doctors were still certain she would not survive through labor and life afterward. Meanwhile, I graduated from school in VA on Jun 5, 07 and came home. 4 weeks later Beth went into labor at 3 AM on a Saturday morning. We rushed to the hospital and discovered among many other things that 1) No books, No videos, and No advice prepares parents for childbirth 2) Labor is only fast in the movies - Hollywood again for you; and 3) Epidurals are a Gift from the Almighty God above - first for the wife then the husband. Our little bundle of smiles was born on Saturday 7/7/07 at 3:45 PM. She was born 6 lbs. 5 oz. and was a cuddle-bug from the first breath. We did not expect her to live through the day and therefore spent as much time as we could holding her and cuddling. We were released from the hospital and sent home to enjoy her as much as time permitted. Hospice care was started and expected to be with us a couple of weeks. Well, I won't say it has been easy but now she is 5 months old on Friday, weighs a chunky 12 lbs. and has a ravenous appetite most of the time. She has had some close calls because her neurological damage will sometimes cause her to choke and stop breathing but she is getting strong enough to get through that by herself now. She is scheduled for surgery on Jan 11, 2008 for corrective surgery. The surgeons plan to remove the hemorrhaged brain matter and the sack that contains it. Some have asked me if this would be the same as a lobotomy and the answer is no. The external brain matter is actually considered nonfunctional. They think this is the case because
she has lived so long. If the brain outside WAS still working it would have killed her months ago. Christmas is just around the corner and I feel like I have already gotten my present just being with her. Despite the fact that I was gone in the Army for a long time, the resulting health insurance benefits means Beth and I have paid $0 for a medical scenario already well over $100,000 and much, much more after the surgery costs. God has a way of putting some serious blessings in your life through some of the worst imaginable pain. There is no doubt in my mind that God gave her to us specifically to teach us something. Please let me know if you want more pictures. If you have a Facebook I have a lot of pictures there. God Bless and have a great Christmas!!

Grand Opening!!

This is the first posting of this blog because it was just created today. My intent is to have a way for everyone to know what is going on with the family specifically the baby as we get nearer to the surgery on Dec 14. I know everyone wonders and is unsure of what questions to ask or if the questions are too personal. Let me assure you that we are very open with every bit of information going on with Aimee and no question is too personal. Also, as Beth and I have created a little bit of confusion with the baby's name, here is the correct pronunciation. Think, A-June, A-July......A-May or Uh-May with the syllabic stress on "May." Think Amy with a cute little French twist on it (cause that's really what it is anyway.)

Update Dec 4, 2007 11:00AM
We received a call this morning and the surgery is currently postponed until January 11th, 2008. Not sure of much else but please keep praying that she will continue to improve and grow stronger during this time.