Home Sweet Home

We are at home and it feels so good to be back. During her stay the hospital I caught up on as much sleep as I could. It was sorta humbling to be snoring in front of her team of doctors and wake up in a pool of drool and try to play it off as if I was "just about" to wake up... Ever since we got home our living room has been turned into a mini hospital where we have everything set up for her comfort. We have oxygen, feeding pumps, monitors with bells and whistles that drive me nuts. Basically everything that the hospital could offer we have here. Unfortunately, I have not been able to feed Aimee by mouth for the past week. She is having a lot of difficulty eating and ends up getting the food in her lungs which causes pneumonia. So we have a little tube going down her nose and into her stomach. She is fed 24-7 and seems to be content with a full belly...who wouldn't be huh? Lately she has been sleeping a lot and there are a few precious windows where she is awake and cooing. Oh, those moments are pure gold. It has been such a difficult past week. I miss my feeding time with her. We would snuggle and I use to turn off every thing just to her the little noises she would make with her bottle. Call me crazy but I miss all of those great burps too!
When Aimee had that close call on Saturday I can't explain it, but it was amazing how much peace Lynn and I felt during the most excruciating pain. During her "last minutes" I have never felt so scared. It was sorta like standing on the edge of a cliff. You can't see the bottom, but you know you gotta jump. I wasn't scared of what was going to happen to her, but I didn't want to go through the pain. However, through it I was rejoicing knowing she would be in the arms of Jesus in an instant. Lynn and I were just thankful that she would not know anymore pain or discomfort. It brings me such joy and peace knowing that this little sweet baby girl would go directly from our arms to His.
We have prayerfully decided to go back to hospice and make Aimee's life as comfortable as possible. Her treatments are not going to be as invasive as they have been and our decisions are going to be based on her ease and relaxation. It is such a difficult decision to make when there are other options out there. It gets easy to second guess yourself and sometimes I honestly struggle with what others will think. But, we have been praying for wisdom and I know God has been guiding us. Lynn and I agreed from day one that we would not keep her on machines to sustain her life. We just don't want to keep her trapped here when she could be in paradise with Jesus exploring colors sights and sounds for the first time.
Lynn and I feel like we have already been given a miracle. We know that nothing can keep her from seeing, talking or walking whether it is on this side of heaven or not. I know this may not be what some of you are expecting from us, but God has given us wisdom, strength and direction and we are going to follow. We love all of you so much. Your prayers have been covering us and holding us during the most heartrending time of our life. Thank you for being a part of it. -Beth

Quick trip to ICU

Last night was a real rollercoaster of a ride. About 9 PM, Aimee was getting a dose of medication through her feeding tube and may have had some reflux. However it happened, she stopped breathing entirely and went Code Blue (meaning life-threatening emergency for the few that may not know). The emergency team rushed in and used a hand bulb and face mask to start breathing for her. They moved her to the ICU in the following ten minutes and kept breathing for her the entire way. They asked to put in a breathing tube and we decided not to do that because it is so invasive and painful for her. They told us that she was not breathing on her own and that since we did not want the tube that she would pass away fairly quickly. They brought a couch for us and pulled all the wires and tubes hooked up to her. Then they pulled the breathing mask and left us alone holding her. At first she had a very hard time breathing but after two minutes or so, those cute big eyes popped back open and she looked at us as if to say, "Something going on around here? What you crying for?" So after 15 or 20 mins we got her back in bed and on monitors again and we moved back OUT of ICU this morning and will probably head home on Tues or Wed. This little girl loves attention but has some scary ways of getting it. Please be praying for us though because this kind of thing can happen at any time and may even happen again very soon. It is very serious right now and we are leaving it in God's hands as to what happens. Breathing tubes are very uncomfortable and even painful for a person especially a 9 month old infant; you have to be sedated to keep from panicking or pulling the tube out. We decided a long time ago that life support was NOT an option for us or Aimee and we have filled out the paperwork that puts Aimee on a DNR (Do Not Resuscitate) order.

Update April 5th

Hey there friends. We are back at Children's again. There has been a lot happening in the past 3 weeks. We brought her back last Wed and unfortunately it looks like she has pneumonia although there seems to be some debate among the staff about that. Over a month ago, Children's prescribed a medication called propranolol to help with her storms. That worked very well until Beth and Aimee went to Austin to see Grandma and Grandpa. We think the change in schedule and environment triggered her storms again and now propranolol does not work at all. After returning home, she seemed to improve briefly and then went downhill again. Lately she has been going through quite a lot for such a little lady. She sometimes has storms 4 or 5 times a day and they are pretty scary to watch. When we got to Children's, they decided to replace her medication with something called clonidine. However, instead of giving her .05 ml they gave her .5 ml, 10x the normal dose. It put her into a super relaxed state and dangerously slowed her heart but she came out of it with no expected long term effects. Only problem was that at the peak of the medication's effectiveness, she went into a very bad storm confirming it does not work for her. We thought that things were going alright and then late last night she started to get some thick secretions... basically thick and nasty phlegm that was making it hard for her to breath. So now they are testing her to see if she has a respiratory virus and we are still in isolation. Long story short, we have no clue still of what's going on and we are waiting for a care conference with all of her doctors to make a decision of our next step. Please be praying that we find a medication that works for her or something changes with her health. Praise God for the staff at Seattle Children's for their dedication for this little girl.

What a crazy day! The past 24 hours have been a nonstop whirlwind for Lynn and me. Last night we had finished dinner and I was feeding Aimee when she choked and wasn't pulling out if of. She started to turn pale and blue and wasn't responding to anything we were doing to help her breath again. The paramedics showed up and gave us a speedy trip to Children's Hospital. By the time we got in she was awake and alert and her stats were back up again. Lynn and I thought that it was an issue with her new medication she was on that caused this problem. ( She gags when ever she has to take it and then sometimes breathes it in and it gets her all congested.) *There are some squeaminsh details here...just warning you. However, the doctors wanted to check out her shunt and we did an X-ray, CT scan, blood work, and a shunt tap. The neurologist was shocked when he found out that her shunt was dry. There should have been enough pressure to fill the syringe up without any tugging, but he had to fight to get 1 ml. out. So around 5:30 this morning she went in for a shunt replacement. Even while we were in the ER last night the plate that they used to cover the hole in her skull started leaking and she was starting to gather fluid at the nape of her neck. Lynn's eagle eyes caught this a few hours before the surgery. Her body will reabsorb this in a manner of time. It is not a big problem. It turned out that there was a blockage in her shunt that was preventing it from working. That was why she has been acting so different lately. This little lady has been through so much today. They couldn't find her veins ANYWHERE! On one of her feet I counted 7 different places where they tried to get an IV in. I quit looking after that. Eventually they put in a line directly into the bone with a needle the size of an elephant. They just took it out! Whew...I want to thank those of you who have been praying for her and the IV situation. They needed to put a catheter in an artery in her leg and they got it in on the first try! Thank you Jesus! She looks a little puffy from all the IV fluids and she is missing her hair on her right temple, but her little cheeks are still chubby, soft, and rosy.... Being a mommy is such an amazing gift. Lynn has been the best friend/husband/mentor for me during this crazy day. He stayed right by her side during all of the tests and procedures. I couldn't take it at all. I love the doctors here at Children's but when they made my baby hurt it unleashes a fury in me that I didn't know was there. It was like I could feel my temperature rising and my fists clenching and it took my hubby to keep me from going ape on them... and you all thought I was so sweet ;) I was put on time out in the lobby 3 times at 45 min intervals... I am not kidding! Just ask Lynn or the nurses in the ER. I don't know how he put up with me. We were able to get a sleeping room and got about 3-4 hours of sleep which miraculously feels like a whole night to me. As of right now she is resting and doing great! Praise the Lord what He starts he finishes! Love you all lots. By the way thanks for listening to me and talking to me at 3 in the morning. I love you da da.

February Update on the Baby

Sorry I have not written in a while. Things have been very busy after leaving the hospital back in December. We have pretty much just stayed at home and not gone anywhere letting Aimee recover. I am happy to report that she is doing wonderful. Her stiches are fading, hair is growing back beautifully and she is growing like a weed. She is now 14 lbs, 5 oz without the weight of the growth. She is so much more active and awake now. We have had a therapist working with Beth to increase her motor skills and development. She has had a minor set back in the past few weeks. Starting in late January, she developed a habit of straining all of her muscles very hard which made her legs and arms and back rigid and tight. For the first couple of days we thought she was having digestive problems because we started her on solid food at about the same time. She will work anywhere from 30 minutes to 2 hours straining and working herself into a frenzy. Sometimes, she works so hard that she raises her own temperature once even up to 101.6. We have taken her to Seattle Children's ER twice and an outpatient visit once to try to find the cause for this. Fortunetly, they don't think it is anything related to the shunt. 2 CT scans and 3 full body X-rays have been done in the past two weeks and her shunt is working perfectly. This led the doctors to believe she might be having seizures. We went into the hospital again at 3 am on Thursday Feb 7th and were admitted. They did a lot of different cultures for possible infection, re-ran CTs and X-rays and then did an EEG (Electroencephalography) which measured her brain waves to detect any seizures. I am happy to report they saw no seizure activity or infections at all. While this is of course good news, it still leaves us with questioning what really is going on. We were released from the hospital late Friday evening and are just at home monitoring the situation. We think it could be any number of things including maybe teething. Or just a lot of bubbles in her system. Because she has a cleft palate she swallows a LOT of air when eating. (Trust me on this - her X-rays shows large amounts of air in her system). Just be praying whatever is going on that it will stop soon cause it sometimes scares mom and dad. Other than that though she is doing so great. Talk to you later.

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It sure is fun being the Favorite!

I can hardly believe it, but Aimee is 6 months old today. She is doing absolutely fantastic. A few day ago she started to develop this little habit that melts my heart. When we lay her down and she wants to be held she starts to make a lot of her little noises and as soon as I pick her up she gets this little mischievous grin at the corner of her mouth. I think she has me wrapped around her little finger. We have a doctors appointment this Friday and we are hoping to get the "all clear" from her doctor. Ever since she has been out of the hospital we have not been able to give her a bath because of the stitches . I give her little spit-baths, but this stinker needs a good bubble bath...(what girl doesn't?)
Last night I was reading in my Bible and I had one of those moments where the heavens part and you can hear the angels holding a chord while you have a revelation. I was reading Luke 4:18-19
18"The Spirit of the Lord is on me,
because he has anointed me
to preach good news to the poor.
He has sent me to proclaim freedom for the prisoners
and recovery of sight for the blind,
to release the oppressed,
19to proclaim the year of the Lord's favor."
I got chills reading this because Lynn and I have known from day one that Aimee is pretty much blind because of her encephalocele. She can tell the difference between light and dark, but she is still unable to follow anything with her eyes. So I am just going to stand on this word and believe. I have believed for crazier things and they happened! The hard part for me has been to simply believe. So many times I will things to happen as if it was by my strength, but it never worked out that way. Once I got it through my head that He is the one that said it He will take care of it, things got a lot easier for me to believe. He put those promises in there for a reason right?
Speaking of the year of the Lord's favor... this year we have had the finances (because we have been so blessed by our family, church and friends) to get Lynn back in school again! (Go Lynn!) *Just a side note Lynn is wanting to get his degree in chemical and bio engineering... yikes! Aimee has been recuperating very fast and gaining weight and developing beyond her normal self before the surgery. Ohh ya I love being favored! Love you all so much!