Wednesday, February 24, 2010

Survived

I survived my first day home alone with three children. It started with about 3 hours sleep because Abby was up all night crying due to constipation. I also survived spilled juice, ice all over the floor, a playroom explosion, and put out a few arguments between brothers. I managed to get some good book reading time in with the boys and played "camping" with them in their walk in closet. The only bad part was I fell asleep and woke up minutes later with two boys jumping ontop of me. Overall it was a good day, but I'm feeling totally overwhelmed with life, probably a little depression mixed in too.

Adjusting to change is always hard for me - thus the past 9 months has been hard because there has been lots of  change. There is so much I want to accomplish with the boys, but haven't had much ambition since getting pregnant, then having high blood pressure, then the chaos of our little preemie. Now that life is getting to a new normal I just expect to jump in and do all the things I had missed over the past 9 months, but that isn't the case. Three kids is a lot of work, pumping, feeding, reading my Bible,  being up half the night, trying to cook, do a little laundry, pray for grace, play with my sweet kids, smile, have fun, pick up spills, kiss bo bo's, smile again, read a few books, answer the phone, pray for mercy, then add some work in there too and it all just seems impossible to do well.

Add to the above with a burden of deciding how to educate Drew next year. I have a desire to home-school our kids and homeschool them well (my type A, prefection coming out) - but don't really know if I can pull it off - life isn't perfect and my expectations may be unrealistic. The other option is to put Drew in a private kindergarden at his present pre-school but that costs a lot of money, or send him to public. I really don't feel called to send him to public so I'm left with only two options and I  can't decide, I've wobbled between the two for over a week. Do I start homeschooling this year, or wait one more year when things are a little calmer and Drew and Abby are a little bigger? Also there is the issue of my job and how in the world I will fit it all in and do them all well. God certainly has me here in this place for a reason, I just wish He would tell me exactly what He wants me to do! Until then, I will wait patiently on the Lord and keep laying this burden at His feet. I know He will answer me when I call, I just need to be patient and obedient while I wait.

On another note, Abby is doing well, very fussy since she is still constipated - we're on day 6. Here is hoping tonight is better than last night! She is eating a lot, thus the double chin, she is also holding her head up better. Abby loves to be held, swaddled, or in a front pack. She also enjoys sleeping on her stomach elevated over her boppy.

We spent the week with Grandma Patti , we all had a wonderful time and  I really enjoyed the extra hands! The boys loved playing and singing and reading books with Grandma! Their favorite thing to play was "camping" which involved getting out all the blankets and pillows and roasting 'hot dogs" (Foam Nerf Ammo) and going to "sleep" in their makeshift tent. Very fun! Drew also showed off his two wheeler action and rode his big boy bike all by himself. He actually learned back in December but I hadn't posted on it or captured any photo's of the big event. Now that the weather is nicer we'll be getting outside much more! I feel like I've been living inside for a whole 9 months! Spring is in the air and I can't wait for some Spring planting over the next month or two!

Drew was able to go on a Daddy date tonight to Medieval Times and see jousting and horses. They are sure to have even more sword fighting over the next few weeks! It fits perfectly with the book we love called " The Squire & The Scroll." Drew is sure to be excited when he gets home tonight.

Monday, February 22, 2010

Sunday, February 14, 2010

Abby is Home!

Our little Abby is home! She came home late Friday evening and has been doing so well! She came home on oxygen but hasn't used it much at all! She has a pulse oximeter which measure the amount of  oxygen in Abby's blood. The pulse ox is attached to a box which beeps when her saturation drops below 90%. In the last 48 hours she has been off oxygen which is a miracle, in the hospital the most she could be on room air was around 90 minutes. I'm so happy to be able to put her in a sling and walk around the house now that she isn't attached to oxygen 24/7.

Her coming home story is such a God orchestrated event. I headed to the hospital on Friday after the snow began to thaw, I brought my overnight back and planned to stay until my mom came Saturday morning so I could take a break. Around 3:30 Abby's doctor arrived and started talking about how confused he was about her oxygen levels. He said we had two options, one was to wait it out longer and let her wean herself of the oxygen, the second option was to perform a bronchoscopy and view her lungs and heart for problems. The procedure would involve putting Abby under anesthesia which I wasn't too fond of. I said I would prefer the more conservative approach. He agreed and as he was walking out the door I casually asked if we could wait it out at home on oxygen? He turned around and asked if I felt comfortable handling that and I almost yelled, "Oh Yes" but was more calm about the whole thing. He wouldn't promise anything but said he would get the paperwork moving and see what happened. About 2 hours later I had home health delivering her temporary oxygen and was packing up our things to come home! It was a crazy few hours but we were discharged around 6:30 Friday evening.

It has now been 48 hours since we've been home, Abby was on oxygen the first night we were home, the net morning we tried to wean her to room air, which we were told needed to be our goal at home, and would you know our God answered our prayers. Abby has been breathing room air for almost two days. We have put her back on oxygen a few times when she acted tired and her sensor was dropping, but for the most part she is breathing wonderfully! Wow! God is so good! We went from an invasive surgery to almost healthy within a weekend.

Abby is still susceptible to illness so we'll be keeping her home until April when RSV and Flu season have passed. It feels so good to all be home!

Saturday, February 13, 2010

Friday Evening

Abby is coming home tonight! I'll post more soon!

Friday, February 12, 2010

It Is Coming.....


Friday

Just waiting around for the snow to melt a little before heading off to the hospital. John has the day off so he will be watching the boys tonight and I'll be staying at the hospital. Abby did well yesterday, there were periods of about 2 hours where she was on room air, but then she would start to struggle and have to put her back on. Please keep praying!

We had a record snow fall - over 11 inches in our part of town. We only recorded 9 inches at our house. The snow is the most we've seen in over 100 years, what a perfect surprise! We've all been having lots of fun and lots of cocoa!


Thursday, February 11, 2010

Thursday

Happy 1 Month Birthday Abby! I can't believe in a month you have only been home with us 9 days. I miss having everyone together under one roof.

Not much to update today, we're blessed to be at home due to tons of snow - 7 inches and counting. I can't say I'm too sad, the boys and I are having a wonderful time while little Abby is being spoiled by nurses. Here are some pictures from our very fun morning. It is so nice to be home, be able to cook  for the kids, do laundry, play, and worship the Lord from our warm and cozy home. There is no place like home (and snow), there is no place like home! We are enjoying God's beautiful gift of sabbath rest today!

Wednesday, February 10, 2010

Wednesday

Well, we're still here at Cooks. Abby is doing well, she just doesn't want to wean off the oxygen. I am going to ask her doctor if we could possible go home with her on  the oxygen and monitor? It can't hurt to ask? We're already doing everything at the hospital that we could do at home - feeding, changing diapers, breathing treatments, and lots of cuddles. We actually went up on her oxygen today since she seemed to be struggling a little. Other than that Abby is eating really well, she even ended up with a tummy ache today because she ate too fast. Crazy girl! She loves that breast milk, she drank 3oz twice for me today, that is a lot for a 5 1/2 little girl!

Tuesday, February 9, 2010

Tuesday



Well we just returned from a field trip to the X Ray department! They had to catheterize Abby and test her kidney's and bladder to see why she had a UTI so young. Poor thing, she wasn't too happy about the process, but it wasn't as traumatic as the other things she has been through the past month. Abby had a good day, her oxygen is at .25 liters which is not much, but every time they try and take her off her level's goes down. They will try again tomorrow. Other than that she had a good day, she enjoyed a bath and tons of cuddles from mommy. The nurse just poked her head in and the test came back negative, so Abby doesn't have kidney reflux! Yes! She finally get a break!

So, here is praying for discharge on Thursday and that she has a good night of sleeping and breathing!

Monday

I spent the day with my little girl. She is eating like a newborn already, she is always hungry which explains her 1.5 oz growth per day! She weighed in today at 5 pounds 5 oz. She has gained almost a pound since birth which is remarkable considering 3/4 of her life she has lived in a hospital and much of it sedated. Sweet thing, she is on .5 liters of oxygen today and holding steady! She still sounds terrible, but the pulmnologist says that is normal for RSV babies. Her nights are the worst, which is normal for RSV, so once she doesn't need oxygen at night we can go home. I'm praying we get to go home by Thursday, but are taking this thing one day at a  time. John is headed here tonight and will be spending the nights with Abby. Pray for him. He isn't much for  waking in the middle of the time, feeding and he hates to change newborn diapers. He doesn't might the bigger kids, but he is afraid of breaking Abby! Please pray he gets rest, since he has no more vacatiion days and  will be working during the days while I'm here. We tried bringing the boys to the hospital, but mommy and daddy  are a little stressed and the additional stress of the kids wasn't the best idea. There are just too many cords and things to get into in this small room.

Sunday

Today we moved out of the PICU and into a room! We were excited for our big move, but with the move comes more time away from home. Abby has a private room which means she has to have John or I here most of the time. John graciously has taken nights and I'm here during the  day. The boys are holding up ok, but I really hope we don't live like this for too long. We're all exhausted and the house is a pit! It would be so nice to get on with our lives.

Abby is doing well, she is stable, breathing on 1 liter of oxygen, she has breathing treatments every 4 hours and they are suctioning her like crazy. Most of the junk is sitting in her lungs, today they said it dropped to her lower lungs. Abby is thrilled that she is off the vent, she is eating a ton! One feeding she ate 85 ml which is about 25 more than normal. Her antibiotics are done tomorrow so then maybe I can convince a nurse to take out the IV in her hand - then she can have a much needed bath. Abby was so excited to get her passy back, it was the first thing that she did, it immediately calmed her and she went right to sleep, such a little trooper she is!

Saturday, February 6, 2010

Saturday Morning

Abby was finally taken off the vent this morning around 9:00 am! John spent the night to make sure she didn't get upset, was resting comfortable, and had great CO2 numbers. John just gave her a passy to suck on and she is in total bliss - daddy and a passy what more can a girl in the PICU ask for!

Friday, February 5, 2010

Friday Update

 

Friday Evening Update: Abby was not extubated today. It was a horrible day I'd prefer never to relive again. Abby spent the  day very restless because her breathing tube wasn't in properly. They planned on extubating so they didn't fix it, then she got really mad from the discomfort and the fact that her feeds were turned off (planning to extubate means turning off feeds) which hindered her progress today. Her CO2 went up because she spent over an hour upset and crying. I'm very upset too, a mommy in tears is never a good thing! Abby and I both cried, only you couldn't hear her, only see her sad eyes and see her struggling and red in the face. It was a busy day in the PICU, we had a terrible nurse, there were many emergencies more critical than Abby and I wanted to throw a big temper tantrum in the middle of the floor to get anyone's attention. In fact, I pretty much did! Very mature of me I know! What is a mother to do when she is trying to advocate for her child and no one will listen. Well, they are listening now, too bad it was after I lived the worst hour of my life. Please pray that tomorrow she gets off the vent, she spent most of the day trying to pull the thing out and I spent most of the day holding her sweet little hands so she couldn't. I'm clinging to the fact that "God's mercy is new every morning... He is faithful" to hear my cries tonight!


Shock, fog, exhaustion, anger, sadness, dependence, acceptance, surrender - the process of a life lived for Christ. 

I've run the gamete of  emotions the past two months. There has been so much going on, so many unexpected bumps in this road called "my life." I've always asked the Lord to be glorified through my introverted life. I've always wondered how someone who isn't too keen on meeting new people or opening up to strangers could glorify God, so here I am at the very least getting lots of practice. Volunteers and Pastors stop by all the time offering to chat and asking questions about our little Abby. It is hard for me to be warm and welcoming, but I sure am getting lots of practice. Even now as I type a sweet comfort volunteer came by and asked if I needed anything. I'm not sure how this RSV hospitalization will bring God glory, but I'm confident He is answering my lifelong prayer through this trial. God is changing my heart to be more open and vulnerable!

My prayer for today is "Lord, please allow Abby to get off this vent." She is so very close, she is getting more feisty, more agitated which is terrible to see as a mother, but the doctors say that it is actually good, it shows that she is getting ready to breath unassisted. They just went down on her vent, then will do another blood gas at 4, then the doctor will make a decision. They did stop her feeds just in-case she comes off the vent this afternoon, but I'm trying not to get excited since we were here in this same place yesterday. Thanks everyone for praying. Those prayers and sweet notes (and the Starbucks downstairs) are getting me through this day.

I was dialoging with God last night about how hard it is to watch your child suffer, to want to take their pain and put it upon  yourself. God brought to my mind how much He loves us, how he could take the pain of sin and consequence upon Himself - His death on the cross, the ultimate love offering to His children. He also brought to mind the sorrow and pain He feels when that gift isn't reciprocated. When the choice to surrender all for Christ isn't taken seriously. My conversation with God encouraged me to be even more diligent about creating an environment in our home that exemplifies a love for Christ. What a gift I can give my children - a love and respect for our Holy God that someday they may adopt as them own!

Thursday, February 4, 2010

Thursday Update

Abby is doing well weaning off the vent, in rounds this morning her CO2 wasn't as low as they wanted so they decided to wait 24 more hours before taking her off the vent. She is breathing over the vent and was a little restless today so they gave her some medication to make her sleep. Please pray that she comes off the vent tomorrow and that she rests comfortable the next 24 hours.

Abby is so sweet, she gets red in her face and tries to cry when some junk needs to be suctioned out of her lungs or nose, or she needs a diaper change. The rest of the time she just rests. This morning when I arrived she was a little too awake and I got to see her beautiful blue eyes for the first time since Saturday. She just looked so sad and tired. Poor little peanut, the hard part is almost over, just wait one more day!

Tuesday, February 2, 2010

Our Peanut is having a good day!



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Tuesday Update

Abby is doing well, blood gasses will show when she is ready to be weaned off the vent. In the interim, she is regaining strength every day. The worst of the disease is today, so we're turning a corner. Abby also developed a UTI so she is on antibiotics. She has a slight fever last night but it is gone this morning. She is no longer using the warmer for heat which is great, she is maintaining her own body temp. Her cute brown/pink blanket is covering her and all the nurses are in love with her cuteness! Abby's feeds are at 12CC/hour and she is resting well due to the sedation medication.

The boys are doing well, they miss their sister. We're going to have the boys make her a drawing and hang it by Abby's bed. Drew wants to draw a rainbow to remind Abby that God's promises are true. Such a sweet brother! God's promises are true! We're so blessed to have God's promise of comfort and strength! I haven't any strength left, yet I know I am daily drawing from the strength of my Savior. The days blur together, the nights seem to pass quickly yet I feel great peace through all that we're going through. God is God and I am not - seems to be my moto during this trial, praise God that I'm not God and that amidst the rain, he provides his "rainbow" for comfort and brings peace amidst sorrow!

Monday, February 1, 2010

Give Thanks to the Lord for He is Good.....

I awoke last night to the cry of a baby, but it was only a dream. I looked at her empty cradle and sighed, how did this become my life? I am thankful, amidst what seems like chaos, because my baby is alive, her prognosis is good, she will eventually come home. Those are all wonderful things that some parents haven't heard. There are babies in the NICU right now whose future prognosis is unknown. Tonight I am thankful amidst this unexpected trial.

Our little peanut was diagnosed with RSV Saturday morning at the Cooks urgent care clinic. Her X-rays were clear and she didn't have a fever. We were released on breathing treatments, saline drops, and instructions to suction her nose like crazy, Saturday evening I picked up her medicine and gave Abby her first treatment around 10:00 pm. I then gave her a warm bath and then prepared her for bed. During her feeding ar 11:00 John and I noticed her struggling to feed. I also heard a "crackle" in her chest. She then choked on some milk, went limp and we had a terrible time getting her to respond to us. She began to turn blue and then took some short shallow breaths. By now her color was an ashen gray. John and I discussed taking her to Cooks and about the time we decided to call my mom to stay with the boys, Abby coughed up some milk and then began struggling to breath all over again. In earnest we got ready to leave and debated calling an ambulance, but really weren't sure if we were over reacting or not.  She had been diagnosed this morning and they didn't seem concerned.

We left the house around 11:30 and drove to downtown FW, she began having a few more spells and John finally flagged down a police officer to escort us to the ER. We'd never been to Cooks and had a general idea where the hospital was, but we weren't positive. We were immediately moved to an assessment room, then a triage room where Abby was looked at by a pediatric ER doctor. After a two minute exam he said he was moving her to a warming table, said she was going to be admitted, and was going to put in an IV. Once we got her on the table, he immediately saw her stop breathing on the monitor for a few seconds. That was when everyting started happening so fast. Immediately he said she would be intubated, then about 12 doctors and nurses arrived and began working on her. We were ushered to a private family room and Dr. Lemon came back in about 10 minutes later/ He said Abby was intubated, on paralysis medication and we were able to see her. Over the next 30 minutes they assessed her, worked on getting fluids into her, removed air pressure from her stomach which had built up, and tried to get her blood pressure under control.

Once Abby was stable we were then taken upstairs to the NICU where we were introduced to her new nurses and the doctor. The staff were so warm and wonderful, it made the shock of the past few hours a little easier to handle. Around 5:00 am John and I felt comfortable with everything and I went home to get some sleep, John stayed by his little peanut until I arrived the next afternoon.

Throughout all our prayers and  the shock of seeing our child intubated and on a vent,  John and I both felt the "peace of God which surpasses all understanding." We truly have so much to be thankful for: God kept her alive until we reached the ER, He gave us a great and assured doctor who acted quickly, He has provided family and friends to walk us through this, He has provided modern medicine which has saved her life. we are the fortunate ones, our little girl will be coming home within the next month, she shouldn't have any long term effects from the virus. That is more than some of the parents in the NICU. We are blessed and thankful tonight - even though her cradle is empty and its hard to not be with our Abby 24/7, we have confidence in the One who is holding her little hand and singing over her. We intimately know the author of life, the One who created our Abby and loves her more than we do - Jesus Christ!

We may be struggling right now from lack of sleep and the stress which has unfolded, but we know where our hope is fixed - "praise be to God for His indescribable gifts" - the gift of our little peanut Abby!