Day 72

We have been at this for 72 days, 2 hour and 3 minutes and 3lbs 5 oz later (K is 4 lbs 10.6 oz).... that is crazy! I can feel the exhaustion setting in. It seems like the closer we get to coming home, the harder it is, the longer it is taking, and the more Satan is trying to sneak doubts and fears in.

The last few weeks have been a roller coaster (not that this whole adventure hasn't been). Some days are a breeze, easy and an absolute joy, other days I just want to stay in bed. I look around and I see all the things that I should be doing, the things that need to be done and the things that I want done. I think about the sleep I've missed and about the joys I've experienced, the tears I've cried and the prayers that God has faithfully answered. It's been an amazing road, but I'm tired.

Last Thursday the Dr finally lowered her nasal cannula. She was allowed to bottle feed several times a day, on Saturday they wrote orders that she was only allowed to bottle once a day. Monday they wrote orders that she could bottle feed three times per day, today they wrote orders that she could bottle every feeding.

On Monday, the dr wrote orders for a chest xray and echo. He also made other changes:
Lowered the nasal cannula to 1.5 liters, low flow
Lowered her feeding time to 1.5 hours
Changed her breathing treatment.

 The echo to check for pulminary hypertension. This scared me. With K having the respiratory issues it puts a strain on the heart. Dr S (much later, after many tears) says that he doesn't expect to find anything, but he wanted to be cautious. We will have to have several of these echos to closely watch any strain on her heart.

The chest xray was still the same with some improvement, but one of K's sacks in her lung had collapsed. The change in breathing treatment and also some physical therapy on her chest AND lots of prayers with hopefully heal her lungs.

We are trusting God and his plan. I can tell you all day what I want and how I want things to work out, but the bottom line... I've left it all at the foot of the cross. I'm completely trusting God and the plan He has already set in motion for not only K, but for our family. He is doing amazing things and I'm thankful to be part of such an amazing plan.

I haven't posted any pictures in awhile, so be prepared for picture overload :)

After his 1st grade program, he is one handsome boy 

Definitely a girl!

Beautiful angel

Headed to see sister

He absolutely loves this sweet girl. She has no idea how lucky she is

God knew exactly what we needed when he gave us this boy!

Grown so much, yet still so small

37 weeks

Just a quick update (more to come). K is still doing well. She is now 4.8.
She is still on the nasal cannula on 2L. Dr let her start bottle feeding again on Thursday. Then on Saturday, dr said she is only allowed to bottle once a day. He says we just need to take things really slow. Prayers that these two tiny lungs grow and mature and heal.

homeruns and sunburns

 This amazing red head had two baseball games on Saturday. I don't know about you, but I love any day that is full of baseball. I spent the early part of the day making sure all of the boys had sunblock and completely forgot my own face. So, needless to say, I'm pretty crisp.

In the first game, he hit a homerun. He was so excited. I was at third base and trying to hold back the tears. He did so good. We tied the game, and in extra innings he scored the winning run. It was an amazing game.

 Sunday night we went out the park and got some practice in. Running bases and grounding balls. He loves the game and that makes my heart happy. 

Daddy was trying to get his time running to first base faster. He decided that it was a good idea for ME to show the red head how to do it. And, of course, the competitive side of me came out and agreed. After Daddy says the famous words " If you do it, I will". I was beating his run time, until I lost my balance (or something) fell, hurt my knee, hit my head on the ground, scratched my arms (that are sunburned), and knocked the wind out of me. And this is what it looks like when that happens:

Two Months

This sweet girl is two months now. It completely blows my mind. I can't believe that I have a two month old, I can't believe two months have already gone by. She is beautiful. She has taught me so much already. My life is forever changed because of this tiny little miracle.

She is 4 lbs 3 oz. She is eating 45 cc every 4 hours. I could say a million words, but thankful sums it up.

Day 59 - scary day

Today was a hard day. We know that God is in control and this journey hasn't had any major setbacks. We are so thankful for that!! It does, however, make the bumps in the road feel more like craters.
K had a chest xray this morning. Her lungs are still hazy. They had already moved her to the high flow nasal cannula. Dr W says it looks like Chronic Lung Disease. We are told that she could grow out of it, but right now it scares me. Not in the scary sense, but the I want her to be able to run and play (softball) with her friends and brother, without having to worry about asthma or such. But I know that worrying doesn't do any good. I just repeat Jeremiah 29:11-13 & trust God's plan.
Today we started another diuretic, potassium, steroid inhaler, and breathing treatments. Today we pray specifically that her lungs are miraculously healed and it's just another detail to her testimony.

8 Weeks

Today was an amazing day! It's so hard to believe that our princess is already 8 weeks old. She still amazes us and today was no different. Today she was moved to an open crib. She is doing so good at holding her temperture.

The hospital was booming today, they admitted two sets of twins and a set of triplets! It was a crazy day, you could just tell watching the nurses. SOO, since Miss K was doing so good she was moved again. At our hospital the NICU is split into two sides, north and south halls. South is the "good" hall, this is the hall that all babies want to be, this is the "going home" hall. It's the last stop (if all goes well) before home. AND Miss K was moved there today. She was the most stable one, so she was next in line to move over. We are so excited. Bringing her home got a little more real today.

She is still on 43 cc. They've been working on the bottle, but she's not wanting nothing to do with it. I know it's learning something that she shouldn't have to learn for another 5 weeks, but it is something that we have to do to go home. This is our prayer today. She has also been on Lasix for the last few days to help with her oxygen levels and to get any excess fluid she may have. Tonight she is 3lb 12 oz, but this is more of her true weight. She is doing amazing!

Mother's day

We had a very busy weekend! Friday- hospital, Saturday- I shot a wedding (my first since K was born), Sunday- Mother's day, mom's college graduation.

Miss K had a very busy weekend as well! Saturday she was moved to a different nursery (just for staffing reasons). She started to hold her own temperture really well. Holding her temperture meant clothes and crib coming SOON! On Sunday, we spent the day at the hospital. Big brother picked sister's first outfit. I think he did a pretty good job. I am so very blessed to have a boy with such a huge heart. He loves his momma and he loves his sister (really he loves everyone, but I like to think he loves us the most). We are some lucky girls, especially when you add Daddy's love in!

This is probably one of the single most amazing days of my life (and I have some pretty amazing days). God has blessed us beyond measure with this red head. We so often take him for granted. He drives us crazy and rarely listens, but he has a heart the size of Texas (no joke). He is so in love with this little girl. She doesn't realize how blessed she is yet, but I know she will soon enough.

 I know that God hand picked these two for each other and us.

Brother held sister for the very first time. He was elated (to say the least)

One step forward

Today k is 3.14 :)  She is slowly getting there. She is getting 43 cc of milk. The nurses are working on getting her out of the isolette. Right now she is still requiring the bed to keep her warm. She did get too hot so they are saying it will be soon. Yay! Tomorrow we will begin working on feeding.

Day 53

Quick update:

Yesterday they DID put sister on the nasal cannula. She is doing well (they've already lowered the setting on it once). She had to have a blood transfusion (nothing to be alarmed about). The nurse said that this transfusion has actually helped her being off the cpap. She then had to have a diuretic because she had so much fluid going in. Again, she say this was good. If there was ANY excess fluid anywhere (including lungs) this would've gotten rid of it. She did lose a few grams because of it, but she is still 3 lb 8oz.

Today, the nurse says she is ready to start learning to suck and eat. YAY! We will see how things go and start Sunday or Monday.

It's funny (well, in that God's in control way), last night I went and talked with another mom that had her own NICU experience. We shared and compared stories, but the one thing that REALLY stuck in my mind was words of her husband. He said "It will seem really slow at first, but then all of a sudden she will take off and it will move so fast" Almost 8 weeks into this journey it finally feels like it's progressing. Which reminds me, that I really need to get to work on some things that we want done before she comes home! So thankful!!

Yesterday's Prayers, Today's Hope

  Rejoice in hope, be patient in tribulation, be constant in prayer.  Romans 12:12

Today we rejoice in hope! We have an amazing God who is faithful. We gave our journey to Him from day one. By no means is that easy, there are many days that I have to give it to Him again and again. I want to be in control, I like to be in control, but I'm learning I don't have to be in control. There is someone who wants control, and can do a much better job than myself. If it wasn't for Him I would fall apart daily. I would fall apart everytime I think it's not fair. When I think about how unfair it is that my sweet girl is so far away, I am quickly reminded of those who so desperately want a baby and don't have one. These thoughts come over me time and time again. All I can do is thank HIM for this testimony that He has given us and the mercy and grace He has shown us.

Today we not only rejoice in the hope, but we are singing praises. Today has been a good day. Our sweet girl is growing. Today she is 3 lbs 9oz. Dr. M decreased her c-pap again and increased her milk to 40cc. Dr. told us that as long as she does well with the changes we will try the nasal cannula. So far, she is doing good. She has a bloodgas in the morning and we will know more.

Our nurse (quick note: we have some amazing nurses that have been with us from day 1 that we absolutely adore and know that they were hand chosen for K) tonight says that she expects her to be out of the isolette within a few days so "bring clothes." Now THAT was music to this momma's ears!

Today has been a good day. It's always such an "a-ha" moment when you see God's hand at work and  specific prayers answered. We are a blessed people.

Psalm 27:4-5 One thing have I asked of the LORD, that will I seek after: that I may dwell in the house of the LORD all the days of my life, to gaze upon the beauty of the LORD and to inquire in his temple.  For he will hide me in his shelter in the day of trouble; he will conceal me under the cover of his tent; he will lift me high upon a rock.

Day 50

Today Dr M decreased the peep on K's c-pap. He also increased her milk to 39 cc. Praying that we are off of the c-pap by week's end.

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7 weeks

Our sweet girl is 7 weeks old today. She still amazes me every day. I know that God has such an amazing purpose for her life. The last week has been hard with very little changes. Fewer changes is a good thing, per the nurses, but my patience is lacking. Today she had her second eye exam. She still didn't like it. The hours that followed the exam, however, weren't nearly as bad as they were two weeks ago. The eye exam gave good results again. She will have another exam in three weeks (again, I'm told this is a good thing). Today's doctor was just a "floater" so we had another day of no changes. Still at 37 cc and now 3 lbs 7 oz 

34 weeks

Sister has had a really calm week. It has really tested my patience. She has had no changes since May 1st, other than an increase of caffeine on May 5th. She is on 37 cc, 2 hours feeding, 2 hours off. She now (officially) weighs 3 lbs 6 oz. We found out that last Monday the nurse apparently weighed her with the cpap mask on. This week her weight went from 2.15 to 3.6 to 3.1 to 3.3 to 3.2 to 3.3 to 3.6.  It was a rollercoaster.  Our prayers are that tomorrow's bloodgas will prompt some positive changes.

Cinco De Mayo

 My brother and sis in law are having me a sweet nephew that would've been about 6 weeks younger than sister. Their baby shower was a fiesta on Cinco de Mayo. My red really enjoyed dressing up for it.

So thankful that this little boy love me and sister!! Between him and his daddy we are some pretty lucky girls. Just ready for her to be here to experience it 24/7

Just thoughts......and pictures

 I thought of a million words to write and yet there was still this void of what to say. We are starting our seventh week of this journey God has brought us to. Here are some of my thoughts from this journey:

• I try not to question God, (I believe in His Word and I believe it to be true) but I also know that I'm human. I know that there is a purpose that we are where we are, but I've found myself struggling with the timing. This is already the busiest time of our year, even more so with my photography. I believe that there is a lesson and I seek God that I might understand.
• I've really learned a lot about the people that God has put in my life. Moments like these either tear you apart or bond you together. I've learned the people that I can trust and those who I can't. Those who are high maintenance and selfish and those that genuinely care about me. I've learned that God has put some pretty amazing people in my life.
• I've learned a lot about my  husband. He is such an amazing person (not that I didn't know that already). He has the gift of love and mercy. He loves when I want to hate. He is strong yet sensitive. We've cried together, we've prayed together, we've lifted each other up, and (unfortunately) we've torn each other down. We knew that this wasn't going to be easy, we knew that we were going into something that was either going to make us or break us. We made a committment that this journey would not break us, we would cling to each other and God. He has a servant's heart and is so selfless (I wanna be like that). I've learned to listen and trust him.
• I've learned about myself. I'm not as strong as I've thought I was, but that's okay because my God is strong enough. I've learned that it's okay to accept help. It's okay to let go of control. I don't have to be in control of everything (I do still have lists and calendars, but it's okay if I don't get it all done). I've learned that it's okay to say no (again, I don't have to do everything). I've realized how important my family is to me. I've realized how much those texts that just say "how are you doing" mean to me. I'm thankful that prayer is my gift. I've learned when to keep my mouth shut and when to open it. I've learned the importance of true friends.
• I've learned the importance of a "normal" sunday for my son. I hate that sometimes that means not going to see the baby. It is one of the hardest things ever and really no one can understand. It may look easy from the outside, but it's not. I promise, God is pouring Himself over us.
•  I've learned lessons that I will carry with me for a lifetime.

 Above are pictures from week 5

 Above are pictures from Week 6 (notice the ring no longer fits on her foot)

The "super" moon. I've learned that this boy makes my heart melt. He amazes me daily. He has his daddy's heart and his momma's personality and he is so ready for sister to be home.

Isn't she...

beautiful.

Day 42

Sweet girl is THREE lbs and almost SIX oz!

*Yeah, I did a happy dance*

Small Things

I didn't realize how much we take advantage of small things until this experience came along. There are so many things that I've stressed over, got upset about, or ignored altogether at times. I complain about our grass being too tall, dishes to wash, laundry to do, and beds that aren't made but when you think about it
- our kids have a place to call home with their own grass to run and play
- we have food to eat that causes the dirty dishes
- we have clothes to wear.... and wash
- and beds to lay down in at the end of the day

A friend of mine is praying (and I'm praying with her) for a baby that will sleep all night, I'm praying for a baby to be home to wake me in the middle of the night.

Someone is wanting to lose those last few pounds for summer, I just want my girl to gain the weight she needs to in order to be home for summer.

A mom is trying to console a screaming baby, I just want to hear her scream at the top of her lungs.

A friend complains their baby wants to be held all the time, I just want to hold mine and never have to let go.

It's simple things (and perspective), like hearing the first cries after your baby is born or the nurse putting her in your arms, that I've missed and didn't even realize it. All of these emotions flooded me on Sunday when a new baby came into our nursery. This baby was crying so loud and it just echoed through the room and my heart. I tried to hold it together but it was too overwhelming. I know one day she will be crying or screaming or even talking and I will just want quiet, but for now bring on the screams and cries. I will welcome it.

I pray that this experience leaves me forever changed. I want to enjoy every moment of every day. We read this the weekend before K was born -

"Don't count every hour in the day, make every hour in the day count."

It has a whole new meaning now.