It's raining, it's pouring...

Let me share my 'wonderful' news with you. Emily has a broken upper right arm. They don't know what caused it but "in babies this sick (why do they always have to say that?) it is not unusual because they are so fragile and even a twist of their arm to get an IV in can do it". The bones are still lined up so they don't have to immobilize her yet but they will watch it carefully to make sure it stays that way. I have no idea when I will get to hold her again. They went back and looked at old x-rays and it happened before I started holding her, so I did not do it. Thank the Lord!

Last night we went out for supper and I have been sick ever since. I can barely get anything down and I feel really off. Either I got food poisoning or it is another round of the flu. So, not only will I not hold Emily, I won't be visiting either.

In better news: Emily is actually doing pretty well...they are increasing her feedings and leaving all her other stuff alone. They are just hoping she can start putting on weight and growing a little. Kylie is doing really well and seems to be her normal self except she is still not interested in food...oh wait, that is her normal self too. :) It IS my birthday. Happy Birthday to me and Casey and Heidi and Rick. AND, Emily is 2 months old today. I will get her monthly picture next time I can go in.
I think today we need a pic to make us feel better. God Bless you all!

Christmas

It is definitely time to post a few holiday pics. This is K helping mommy make Grandpa's Christmas card...yes, it was a great bonding time for the two of us. :)

Ok, that's more like it...she just doesn't want to be made to do something. I have no idea where she got that from.

Such a good helper.

She didn't feel well but if it means Grandpa gets to cuddle a little, I guess all is forgiven.

She's still not sure about presents...and her birthday is coming up in three weeks..uh oh.

Never fear, when you don't know what to do with a toy, your cousin is here. I can't wait for K to do this to Em next year!

He's got the look!!

I was sitting here pumping when I realized just how much I am bracing myself for the next downturn in Emily’s health. I know she is doing well, but I also know there are more ups and downs to come. But what struck me – again (just deeper) - is the harshness of the impact of living day to day in the unknown of your child’s health and even life. It has been amazing to hold her and finally feel, at least a little bit, like a mom, but it is in this joy that the contrast displays itself even more clearly. I find myself cycling through the same struggles as early on, but at deeper levels. This time around, it is the issue bonding and freely holding all my love out there for her without letting the fear of her leaving me hold me back. But that isn’t why I am writing today, just wanted to let you know where I was at to give you context.

Tonight, I read Psalms 9:9,11: “The Lord is a refuge for the oppressed, a stronghold in times of trouble… Sing praises to the Lord, enthroned in Zion; proclaim among the nations what he has done.” This reminded me that at church the other night, we sang a song about God being our strong tower and the righteous run to it and are SAFE…and I wrote these words in my notes: “There IS safety in our God. That is EXACTLY what it is – safety. He is ALWAYS there for us. For some reason I have always had this lingering doubt or fear that maybe, somehow, someday I will go through something or do something and it will be too much and maybe this time he won’t be there for me. What a ridiculous thought! And yet I buy into it. What is the TRUTH? The truth is that he has NEVER left me. Each time I go through something that is worse than the last, his presence is even more real. So real, I can’t deny it. In this time when my world has CRASHED around me, he has been right here, making sure I KNOW he has me. And that peace, that sense of comfort, the overwhelming reality of his presence, has been even stronger this time around.”

And THAT is why those of us who are going through tough times MUST proclaim the goodness of God to everyone else. It is not that we can’t know these truths in good times…we can and we do, but it is in these bad times that it is impossible to deny the truth. And in our set convictions, we must remind others. It is when we are comforted by his spirit alone and there is no confusion, that no matter what our pain, we must declare to others …He’s still here! Don’t doubt. No matter where you go or what you do, He will be there. He won’t let you go. He can’t let you go.

And the end result is inevitable; we MUST praise him…not because we think everything is great but because he is God. Because he is faithful. Because he is who he says he is, and therefore he deserves praise…period. Our lives and the crap we live in here have no bearing on how much or how willingly we offer our praises to our Father. He is worthy of praise, therefore we give it to him. Praise him on the mountaintop and praise him in the depths. I am just here to remind you that he WILL be there and he IS there, so praise him now. Don’t wait for whatever it is you are waiting for. He deserves your praise in this moment.

Even now, as I reread this, I am ‘convinced’ that Emily will tank because I have written this. I want not to post it for fear of the resulting attack and the fear that I can't handle anymore and maybe if I lay low, I will be safe. What an evil temptation to believe. First, I choose not to live in fear. GOD is in control. What I have written is truth and it stands. Second, GOD is my strong tower. I will run to HIM and I WILL BE SAFE.

Perspective

Yes, I got to hold her again today and she did much better...that means she laid still and her oxygen levels stayed high. It was probably because I wasn't so nervous. :) Today we took some perspective pictures. This is her incubator and all the equipment being used to monitor her.

This is her compared to a twenty dollar bill. Yes, those are clothes...wearing her first shirt.

This is how I look at her wile we are cuddling.

And just another of her...for those who are noticing, she is still on the canula. They left her on after I left cause she was doing well and it is 24 hours later and she is still on it.

Great Day!

No your eyes do not deceive you...that is me holding my baby!! 7 weeks and 2 days after we were separated, we finally got to cuddle again. She's getting so big! It was so nice just to feel her breathe and twitch.

I have so many more pics but since it is called skin-to-skin for a reason, they cannot be posted. If you would like me to email you a couple, you can at least see how big she really is (don't worry, I have a bra on), send me a request via email and I will attach them.





For those who notice, she is only on the canula (smaller breathing tube) so I could hold her...she won't stay on it as she is not ready to step down yet. Pray for her nose though as her nasal septum is deteriorating on the other vent and she needs to get off it. Otherwise, all seems well.

Kylie, on the other hand, who has not eaten (solids) in 36 hours, has now graduated to vomit and diarrhea and apparently ALL these symptoms can be attributed to teething?!? Really? I have my doubts and the lack of sleep is pretty ridiculous. Even her crying right now can't dampen my spirits though...better go get her. Have a great day!

Why do I have to title all these? :)

Before you read the next sentence, let me clearly state that Emily is doing well. It was kind of a disappointing day today as I had been told I would get to hold Emily when I got there...I was soooo excited. I tried with all my might not to get too happy - just in case, but I couldn't help it. Sure enough, when I got in there, there was a big machine in her incubator and I almost started to cry on the spot. They were giving her a blood transfusion and it was going to take 8 hours...not today.

Let's not dwell on that disappointment. Emily has doubled her weight...she is 2 pounds, 12 ounces. She looks a LOT bigger to me. And, I have been able to hear her cry. It is such a soft sound that I had to ask the nurse if that is what she was doing. She is hoarse from the tube down her throat for 6 weeks. As we always compare her to animals, we have officially graduated from looking like a baby chimp to looking like a chipmunk...the tube squashes her cheeks out like when chipmunks have food in their cheeks. Hope you all like that visual image.

32 WEEKS!!

Merry Christmas one and all! On this day, Emily is exactly 32 weeks gestational age and has been outside my womb for 7 weeks. In celebration of this day, this morning I took her little ornament in and hung it in her incubator.

She is doing good, which is NICU code for no changes, so I call it okay...not great but not bad. Her right lung is still having troubles but she is getting enough oxygen so they are optimistic that her left lung is doing better than before. She still has residual (food coming back up) and it is slightly green so they will decide what to do today about feedings. She is also still on the new vent and doing well. I guess we are just waiting...imagine that.

Kylie had a great Christmas...she is finally back to her normal self after being constipated, getting a tear on her rectum, two days of a high fever and one trip to the ER because we thought she had a UTI (crying every time she peed) and they had to admit her if she did. On the way in, we were praying and just told God we were done. We are "glad" He thinks we are strong enough to handle all this but we're tired and 'done, done, done,' as Kylie tries to say. When there is so much drama in your life that taking your kid to the ER in the middle of the night generates no adrenalin, there is a problem. I feel like our whole house is under attack, especially in regards to health. We appreciate all your prayers and ask you not to grow weary in praying for ALL of us. Thank you. Anyway, now Kylie is pushing three teeth through and taking about 2-3 steps at a time. It is such a FUN time in her life, we are LOVING it!!

God gives us soooo many gifts in our lives and it is good to remember his GREATEST gift that was given to us - Jesus - and through him the promise to forgive all the crap we think and do and let us live in heaven for all eternity instead of what we deserve. Praise the Lord! I know I am grateful and really don't understand how people make it through this cruel world without that hope. God bless you all!!

12-22 Update

They are going to begin feeding, again, this evening. The doctors said Emily's stomach seems to be okay. As you can see, they have extubated Emily, so she no longer has a big ole breathing tube down her throat, just a little one to her stomach. She has maintained her oxygen levels since yesterday evening when they extubated her, so that is a huge answer to prayer!

Now she is going for the "wrapped up like a mummy" look, instead of Darth Vader!

Real 11 month pictures of K

The little monkey, climbing in the tree.

Breathing?

Well, Emily has been breathing using only a nasal breathing apparatus for three hours now. The nurse called just before noon to let me know they were going to extubate (remove her breathing tube)Emily on a trial run to see if they could get her going and said that if I got in there right away, I could see her face without anything on it (tape included). Thanks to M's willingness to go without sleep, I was able to go in, but sadly another baby had more pressing issues and they delayed her procedure so I was not actually able to see it...the joys of being unable to plan anything. Anyway, the nurse promised a cell phone picture for me, so I hope it is good and I will show you all as soon as I have it.

The nasal tubing is a big step if she can manage to breathe well enough to maintain her blood gas levels. And, if she can stabilize, it will only be a matter of time before we get to hold her. I am learning not to get too high, so we will just continue to wait and see but I wanted to share this awesome news with all of you. Keep praying, we are seeing some positive results.

11 Months!!! Thanks Mom!!!

This is the second time my mom has made it down to help me out and all told she has been able to spend over a month with me. I cannot express what a HUGE blessing that has been!! Besides everything else she did, just knowing someone I know and trust is 100% here for my daughter takes a huge burden off me! Not to mention the freedom to visit Emily whenever I want.

We did the practice run for pics for K's 11 month pics (tried outfits and different lighting) and never did the real one so this is just a collage of the events. Congratulations my little love!

A side-bar...

Let me tell you the story of an undercurrent in all this. When my sister was here just 10 days after this happened, she told me, “I don’t know why but the Lord keeps telling me you are Noah.” We joked about it for a little cause it didn’t make any sense. Not only was I not building a boat, I don’t think anyone was mocking me while I obeyed a ‘crazy’ command from God. But, later, I started singing that kids song…”The Lord told Noah to build him an arky, arky…It rained and poured for forty days, days,” and I stopped. I went and reread the story of Noah and discovered that not only did it rain for 40 days, it took an additional 150 days for the water to recede. 190 days for new life to appear. Over the past several weeks, I have taken this as encouragement to remind me that this is just a time in my life and it WILL end some day. Don’t get me wrong, I have the days marked on my calendar too, just in case. (April 5). :)

Each night, I read a psalm before I go to bed. About 10 days ago, I read Psalm 29 and I don’t remember much except verse 10: “The Lord sits enthroned over the flood.” Yes, he does, I thought and went to bed.

Two days later, the day before someone posted Psalm 27:13-14 on my blog, I wrote it in my journal. “I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.”

A couple of days ago, one of the ladies in my Bible study posted on FB this message: Becky, I was praying for ya'll this morning and felt led to share this thought with you: Emily Grace is in God's perfect healing, but this will take time, just as she is supposed to still be in your womb to grow, you will need patience through all the ups and downs as God heals and grows her to perfection during these next few months.

I know it is hard to tell, but I think that just maybe God has been telling me something. Unfortunately, I hate waiting and I don’t really understand the huge significance in waiting, so I decided to look up some verses about waiting and I was taken to Isaiah 30…I can’t type it all so I will pick highlights, but if you have time, you should read from verse 15-26. The Lord is speaking to Israel: “In repentance and rest is your salvation, in quietness and trust is your strength but you would have none of it…Yet the Lord longs to be gracious to you; he rises to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him!...How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. Whether you turn to the right or the left, your ears will hear a voice behind you saying, ‘This is the way, walk in it.’…The moon will shine like the sun and the sunlight will be seven times brighter, like the light of seven full days, when the Lord binds up the bruises of his people and heals the wounds he inflicted.”

And then, as if I needed more, last night, the sermon was about seeing miracles in our lives. Step one is to hear a word from the Lord and step two is to obey it. Step three is to WAIT and serve while the miracle works itself out in your life. I am fairly certain I know the word for me, and it is literally one word. WAIT. So I will obey the word. I will praise my God and remember his goodness while I wait for the Lord. And I will wait in patience and hope, until the day he reveals to me that I need to wait no more.

I think Psalm 140:5-6 sums it up better than I could. “I will wait for the Lord. My soul waits, and in his Word I put my hope. My soul waits for the Lord. More than a watchman waits for the morning. More than a watchman waits for the morning.” I love his sense of anticipation here. I will wait. I am not sure what for, but I will wait. And live life in between.

I hope this encourages you as it encourages me. Thank you for your prayers and God Bless you all!

Aye-Yi-Yi!!

I have no idea how to spell that so sound it out...

I feel like if there is bad news, I am the one who has to see/hear it. Last night, M went in and they were so optimistic about how Emily was doing that they were talking about trying to step down her vent and they increased her feedings to 0.7ml/hour. I drove in hoping to be able to touch her at least a little, but fortunately I had a dream last night that warned me about this so I was kind of prepared for things to be back on a down.

When I got in this afternoon, there were two drs looking at her and moving around a little too quickly for comfort. It turns out that her right lung partially collapsed again (so the vent is back up to its old settings and she is on meds again) and they had to suction the milk out of her stomache because she wasn't passing it through and her abdomen is 'distended with loopies'...swollen and looks funny (they let me look but I have no idea what is normal so I had no idea what was bad). They have stopped feedings and when I left, they were taking x-rays of her belly to see if they needed to take more serious action or wait and x-ray in the morning again.

As you pray, please remember that we need the bowels to function so we can buy enough time for her lungs to heal.

Thank you for your prayers for me. We hit six weeks yesterday and I am now allowed to start lifting K and taking over full care of her. I can also start cleaning the house and doing things that in general will make me feel like I am contributing...and should in the end help me to deal with all this better. Don't worry, I will do my best not to over-do it and take things slow. God bless you all!

Lots of Firsts

Sporting the 'NICU haircut'...the nurse calls it that (shaving a part of the head so they can put a line in). You know the lighting is bad if our camera can't get good photos...this is as good as it gets.



Well, good news...for once...PTL!! Emily is still eating and tonight they will up the amount to 0.5ml per hour. Her blood gases are stabilizing and they actually adjusted her settings on her vent today. Everything else is kind of the same.

In other news: K took her FIRST STEP last night! I don't know if we get to count it but she held on to her toy and let go for one step to get to Dad.

She also opened her first Christmas present today...it was quite fun and she LOVES her new lion push toy.






Helping Dad put it together...such a studious little girl!


Riding it...

Pushing it...

Food??

Well, they started feeding her again yesterday...0.2cc at a time (a couple of drops for the less scientific among us) and so far she has tolerated it. They found some gas in her x-ray this morning and that is what they are looking for...yes, that is from her father's genes. So they are continuing to give her milk today. If she can eat and start putting on weight, she has a much better chance of kicking the lung issues. Please pray this continues. Thank you.

Thanks April!!

Just wanted to thank April for coming out and helping us for a week. It was a great visit! We mostly just hung out and April cooked and did battle with the millions of ants trying to enter our home to get out of the rain.

Between April and my mom and many other people around here, I am healing quickly and hope to be fully back on my feet in a couple of weeks.

These are some pics at G+G E's before we took April to the airport.



We kept trying to get some cute pics but most of the time she just attacked the bears. :)

Yeah

Sorry I was so negative yesterday...I am getting quite discouraged about this whole thing and I expressed it poorly. We keep describing this as a roller coaster but lately, instead of ups and downs, it seems to me that things are just steadily getting worse. I called in last night to talk to the night nurse (the only one who has been with her from the beginning) to voice my concerns and I got a lot of straight answers.

I told her that at this point (working on week 6), I was starting to get worried since things just really aren't improving and she told me that she agreed that a little worry is appropriate...she has been feeling the same way. We just can't seem to get her to any of the milestones we are looking for. Last night when they tried to adjust her oxygen, she was so intolerant that they had to put her back up to 100% for several hours (she hasn't been that high since she was first born). Everything they try with the ventilator and her gases pretty much backfires. They continue the morphine and blood transfusions and the like and we just aren't seeing any improvement. The longer we go without SOMETHING working, the worse it gets.

BUT, the nurse was also quick to point out that she is 'quite a fighter'...I don't know why she keeps saying that so I have to assume some babies must just quit at this point or something. Her heart is strong and she hasn't had a brain bleed yet. She likes my breast milk and even tries to suck on the q-tip when they put it in her mouth (they swab her mouth a couple times a day). She thinks that if her bowel heals and we can feed her, she will be a good eater and start putting on the weight she needs. We have to wait for Monday's x-ray before they decide when they will try food again. And, well, she's still here and still fighting.

As you pray for us, pray against discouragement and fear. There is a paradox in the situation: at any moment, she may die, and yet she is still here and still living. In an attempt to wrap your mind around it and cope emotionally, you go through phases of 'accepting' her death and then 'denying' or fighting it with all your might. It just seems like we cycle through all the emtions of dealing with the death of our child and yet there is no death and therefore no closure and no way to begin moving on. I am realizing once again how fragile I am...I survive only because God sustains me. When I look at God, I am fearfully rested. He is in control. But when I lose my focus and look at myself, I just wonder when I am going to get crushed under the weight of this.

Thanks for listening. Thanks for your prayers and your constant support. When this 'time' is over and we all get to look back, my prayers are that we watch a precious little girl run and play and thank our God for the life he spared. God bless you all on this day. Look at your children and praise the Lord for every one of them!!

Oops

Well I was totally wrong about what they were doing. The tube they were removing last night was her chest tube...the one to drain her lungs. Instead, this is just another bad day for my kid. Her oxygen is back up to 85% and her pressure is up just as high, she is back on blood pressure medication and she just refuses to be weaned from the vent. Sorry to get your hopes up (and mine). All I want is to get on here one day and tell you all some good news...permanent good news. Hope it happens soon!

Ventilator

I went in today and was able to see Emily for a few minutes...they were doing surgery on another baby in her room so I had to leave after just 20 minutes. BUT it was good to see her. She is quite gaunt so I didn't take any pics (plus all the lights were on for the surgery so they had her covered up)...will do later.

The reason I am writing is mostly to ask for your prayer once again. They are going to try to take her off her vent tonight. She is not technically ready for this but they want to try so that they can get her out of this cycle of pain, morphine, low blood pressure, fluids, etc. Please pray she will be able to breathe on her own and we can move on with the job of growing and getting better.

Fun with April

It stopped raining so we spent a little time outside with Auntie April...of course, playing on the John Deere ATV.

It was still cold and since this was the first time K has worn mittens, she was VERY distracted by them...we had the same reaction to shoes about two weeks ago.

Can you read her hat? Brrr...it's cold.

Post-Op

Most of you don't know that last night was a little rough for E...her blood pressure dropped and they tried saline and two different drugs before she responded to one of them. They also had her oxygen back up to 80%. Today she is getting better. Her blood pressure is back up and they have her off the medications to help her with it. Her oxygen is slowly dropping and she is at 40% right now. She should be coming out of the general this afternoon.

For us, if we keep getting better, we should be able to visit sometime this weekend. K is on antibiotics and we hit the magic 48 hrs with her today.

PTL!

Praise the Lord! Thank you for your prayers. The operation went well. Her blood pressure is up and they were able to insert a drainage tube into her lung while they were in there. They will remove it in a few days. The dr seems very optimistic that this will solve many, if not all, of her problems...including her need for the ventilator. Please pray this is true as it will mean we can start to hold her. She is not awake yet (still sedated - as we would all want to be after this) so keep praying she will come out of the anesthesia well.

Surgery this afternoon...

PRAYERS PLEASE!!! Emily Grace is going in for surgery on her heart valve this afternoon at 1pm (PST). The biggest complication is actually the general anesthesia and her not waking back up from it. The other two complications are infection and getting an air bubble in her lungs that will make it to her heart. We will update as soon as we know.

Bronchitis

Well, K has managed to turn this cold into bronchitis...real good little girl. On the positive side, she got to wear this cool mask while at the drs office.

Emily seems to be doing a bit better in the last two days. Her oxygen levels are getting lower(25-30%) and her right lung appears to be clearing up a bit. Unfortunately, she also has a bacterial infection in her blood. They have her on antibiotics and don't seem too concerned about it, so I won't worry either. We still can't visit due to the colds we have but hopefully soon that will all change.

K with her friend Z...having fun 'sharing' toys. They just look like two peas in a pod so I had to share.

Gracie

Emily is overall doing the same. We are having up days and down days but nothing dramatic. They are currently working under the theory that a lot of her breathing issues are pain related. The problem is that when she is working so hard that they give her the morphine to calm her down, her blood pressure drops and they have to give her fluids and that whole process starts over again. In good news, her brain scan show no bleeding on the brain. PTL!!

We are both still sick and won't be able to visit for a couple more days. April is here for a week and helping out immensely. I am extra glad since my mom was here for a long time and then I had M helping. Only two days on my own and I barely slept, started bleeding and got really down on life. I guess I just need other people to help me fight off all the thoughts and emotions right now.

EG

Sorry we didn't update...both M and I have gotten the cold Kylie has, so we have not been allowed into the hospital. The phone calls have been vague at best so all I really know is that she is back under her billy light, on two different drugs to reduce the excess fluids in her body (therefore her swelling), she 'desatted' less today than yesterday (desat is when the oxygen levels in her blood drop too low and they have to increase the amount coming through the vent) and her brain ultrasound was 'normal'. Since I don't know any better, we will at least take it that she is not doing worse than before.

Since everyone keeps asking about the PDA, I will try again. In the womb, blood runs from the baby's heart to the mom's heart (bypassing baby's lungs since they don't work). When a baby is born, a valve in that artery snaps shut and the baby runs its own blood by its own lungs. Emily's valve is not closed all the way. There are two solutions - drugs or surgery. The drugs can't be used on Emily because one of the side effects is hard on the bowels and since she is already having problems with her bowels (why she isn't eating yet), it is not even an option. Since she has so many other problems, they don't think she would do well having to go through surgery. Eventually, it will need to be fixed, but with all her issues, the time is not now. SO, unless it becomes a bigger issue and starts to cause more problems, it is on the back-burner.

Please pray for me as it is very hard for me not to be able to see her. I know she doesn't really know, but I feel like I am leaving her all alone to fight her problems by herself...as a mother, just leaving her there every day kills me, much less not even going in to visit her.

She has a Face! :)

Well, 24 hrs without cold symptoms for us and they let us in to see her. No touching still but fine with me. Sorry the pics are grainy but they are from M's cell phone. Today was very special for me (mom) cause I have NEVER seen her face. They turned off her Billy light (the one for jaundice) and so they took off her "sunglasses". She looked like a little baby...I know, crazy. Just remember, since I have been allowed to see her, she has been a hat, sun glasses, a nose tip, tape, tubes, and a small chin. I can't lie, I teared up the whole time I was there...for the first time, as I looked at her, I could see her as a person. That's my little baby. She is so beautiful!

We think she might be over two pounds too...not totally sure yet as it looks like most of the swelling is down but she is still losing the water weight.

This is her next to my hand. She is 60% bigger than when she came out...we just need functioning lungs.
Trying to open her eyes, even just a slit.
Medically, she is not any better. Her oxygen is still between 60 and 80%, no new news on the PDA, and they have her on her right side to relieve the pressure on her left lung so they can try to get more air into it. Fixing her lungs is the key here...as it has been from the beginning.