First day of Kindergarten!

After weeks of fretting and saying he did not want to go to school (because he would miss me), I was delighted to hear Ethan say, "Mommy, I like my new school."

He was even surprised when he got home,   He does have one girl form his K4 class, but more familiar are our family friends twin boys that are in the class.  I asked him if he made any new friends and he said that he just hung out with the old ones :)

Sweet moment

Yesterday Philip was changing Asher's diaper when he discovered there were no diapers downstairs. Ethan said, "Don't worry Daddy!". Then he ran upstairs to get a diaper for him. On the way up the stairs he shouted down, "Do you need wipes too?". Sweet boy!

Heard from the backseat of the van....

Evangelynn: *sneeze*
Asher: "Da-doo bay-bay"
Evangelynn: *sneeze*
Asher: "Da-doo bay-bay"

He was blessing the baby!! How cute is that?

Happy Father's Day!

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Saturday morning snuggles

Sleeping in her favorite place:

PKU Normal

The results of the state screening came back normal!!

Praise God!

No news is good news

I know since we have gotten home I have neglected my blog writing.  We really have had nothing new to share.  We are home and are settling in to our new normal.

The boys still love Evangelynn!  They love holding her and telling her good morning and Asher loves to tell her "Hi-ee" over and over again.  I have a hard time keeping track of what day it is since I'm up during the night every three hours nursing.  I was talking to Danielle yesterday and it made me tired to think of how little sleep I'm actually getting. 

Evangelynn did give us a scare last week when the pediatrician called and said we needed to come in right away!  Her PKU screening that is done by the state came back borderline normal so they wanted to re-do the test and send her to Children's for some additional blood work.  The blood work at Children's was looking for symptoms of the borderline condition and it came back normal.  Also, one of the symptoms would be Evangelynn not waking up to eat (we don't have that problem) and her losing weight.  On Monday we went back for a weight check and she actually gained weight and was up to 6 pounds!  We are now waiting the re-screening results to come back, but her doctors seem confident they will be normal.

I had a few quiet moments to write this because Asher has re-taken up his morning nap.  Now I'm going to go enjoy the rest of this quiet with a cup of instant coffee (better than no coffee) and an apple fritter.

Have a good day!

Ethan's lunch

Last Monday I was still in the hospital (unexpectedly) and Philip had to make Ethan's lunch for school.  After assembling all of the items Philip called Ethan over and asked, "Is this how Mommy packs your lunch?"  Ethan replied, "Yes, except she doesn't put Swiss Cake Rolls in it."

I have a feeling Ethan will be requesting that Daddy make his lunch in the future!

Bath time

The other adults in the family chose to go to McKay's this afternoon, but for over three days I've been wanting to give Evangelynn a bath.  Instead of waiting I enlisted Ethan's help as a photographer.  I think he did a great job!

Homecoming!

We are being discharged!

We are being discharged!

Last night our great nurse Stephanie changed us from rooming out to rooming in at around one in the morning.   This was great because then it "counted" that I had roomed in with her and it allowed us to go home a whole day early!!  I was so excited to be with her all the time and not have to leave during shift change.

The siblings meet "face to face"

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Rooming In!!

When I came to the hospital this afternoon the doctor gave us permission to start breastfeeding. I could have hugged him! When feeding time came around Evangelynn nursed!!! Since I want to continue nursing I am choosing to room in at the hospital tonight. Really it is called rooming out since Evangelynn is still in her room and I have a room of my own.

She is on room air and when I left her she was on less than half of a Liter of air per hour. She has been off of IV fluids since last night and she even got her PICC line out! She has also been released from UV treatment for her jaundice.

When I left this afternoon I didn't know I was staying so Philip had to repack my suitcase and bring me some clothes (along with all the stuff I forgot this morning anyway).

UPDATED: Evangelynn now has no tubes! PICC, feeding tube and nasal cannula are gone!! Evangelynn actually removed her feeding tube by herself while we were nursing :)

At this time it looks like she will be released in 24-48 hours. We are so excited!! One of the things that could stop us is her bilirubin levels, so please continue to pray that we glorify God in everything and that Evangelynn's bilirubin continues to go down.

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

The Daily Report

Yesterday I came home from the hospital. It was good to eat dinner with my family but it was hard to leave my baby girl. When I called last night to check in on her our night nurse (who has been with us for a couple of nights in a row) asked right away if I had gone home. Apparently before her first feed of the evening her respirations were low enough to try eating by mouth. Little stinker :)

This morning her respirations were still a little high so I waited until after lunch to come in. The doctor just came by and asked if she was taking a bottle yet. I told him no, because I want to breastfeed. "Okay, well let's start that at the next feeding."

I am so excited!! So right now I'm waiting for my first date with Evangelynn which is scheduled to begin at 2:30. If she does well we will start the process of me rooming in with her and hopefully we will be home by the weekend!!!

I praise the Father because He is good. He is always good, even when circumstances are not what we would have them be, but at this moment I could not wish for anything more.

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

The Daily Report

Evangelynn continues to improve!  She is now just on room air and 1L of air in her cannula.  She is still breathing a little too fast (in the 60s) to get to try to nurse but her sucking reflex when she is hungry is alive and well.  It makes me so happy to watch her suck, suck, suck on a paci while the milk goes down the tube to her belly.  She is getting 14mL now of my milk every 3 hours (increasing by 2mLs every other meal) which is great.  I'm pumping at least 60mL every two hours so for now I'm ahead of her and staying that way.

Her bilirubin was up today high enough to warrant her being under the UV light.  This should help the jaundice resolve itself.

That's all I know for now.  We are kind of just in a holding pattern until her respiration rate comes down low enough to nurse.  I go home this afternoon and will spend the night with my family.  The next few days will totally depend on Evangelynn.  The moment she is breathing slow enough to nurse I plan to come back by her side and not leave her until she comes home.  That may or may not work for nights depending on what facilities they have available.  Philip is also especially worried about me wearing myself out, but that's good because he will keep me in check :)

I'm still taking pictures every time I'm in the NICU, but you'll have to check smugmug later tonight to see them because they are so big I have to wait until I am at home to upload them.

Room Air

So Evangelynn is practically down to room air and is still only taking 2L.  Today was the first day that I ever saw her not get really upset or cry when the cannula was disconnected for a minute while we put her back in bed.  This is great because it means that even at 2L she is not as dependent on it anymore.  If her breathing slows down enough tonight the NICU will call me so that I can go in and try to nurse her.  One of the best things about today is that when it is time for a bottle she is waking up hungry, opening her eyes, beginning to squirm and (best of all) trying to mouth and suck on everything in sight.  It was neat to see her act so much like a well baby!!  She also furiously sucks her paci while we are feeding her through her tube.  This is great practice and the nurse tonight commented that she thinks Evangelynn will take very well to nursing :)  Let's pray that this is the case!

Whoopsies!

I was wide awake for Daddy!

I like room air!

Continuing to improve

The good news just keeps coming and I couldn't be happier.  At noon Evangelynn's volume was turned down to 2 liters.  She has done great!  Her respiratory rate has stayed at 70 and she hasn't needed any more Oxygen! 

While Evangelynn was upstairs breathing like a champ the rest of the family had a great lunch together in the cafeteria.  It was hard for me to see them go, but I know that we will soon ALL be together :)

More good news

I walked down this morning just to drop off milk and I ended up staying and holding sweet Evangelynn. It was great that I did because I got to talk to her doctor! Her respiration rate was back up and at first I was bummed, but then I saw that her rate has been turned down from 4L to 3L and her O2 levels are still below 30%! The doctor said her lungs look good and that he only expects her to continue to get better. He asked how long I would be here be ause he expects I can try nursing her later today or tomorrow. Her respiration has to be 50 or below and he expects that to happen soon!!

On the way out her nurse showed me that they are stopping her antibiotics and that they will start feeding her more of my milk as she tolerates it. Now she gets 4ml every four hours and from now on she'll get an additional 2ml every other feeding. She is still getting sugar, protein and fat through IV and I'm not sure when that will stop.

I'm headed back now for more kangaroo time! As you think and pray for Evangelynn please also remember sweet Asher. He loves his momma and has had a cranky/fussy couple of days without me. They are coming to meet me after church for lunch so I'm looking forward to that. I feel torn, but I think being here so that I am available when Evangelynn is ready to nurse will help us get started on the right foot and lead to our ultimate nursing success. My doctor has written orders to allow me to stay here for one extra day, so I will probably be discharged on Monday.

Over these last few days I've been reminded of what my sweet nurse told me five years ago after Ethan's birth, "A short stay in the NICU is seven days.". I thought she was crazy when she said it but Ethan was at Children's for exactly seven days. We are on day three for Evangelynn and I pray she beats her brother's record :)

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

The first good report!

So far the news from the NICU has been, "She's not better, but she's not worse.". Right before we left Evangelynn her breathing had climbed again and I describe her breathing as "chuffing" (this is not a medical term, I got it from the cute book Otis).

Anyway, this morning I talked to her nurse and she said that her breathing has slowly calmed from 120 to average around 70-80 and her oxygen has stayed down in the 30s. She even tried her oxygen down at around 21 last night which is the lowest setting it has ever been on and is the same as room air. Finally, her chest X-ray looks much better then when she first arrived and her lungs are sounding clear with the exception of one very small "diminished" area on her upper right side.

Now, I will say that this particular NICU nurse also gave us two rules about the NICU. The first was, never trust a NICU baby, meaning they can get worse just as fast as they got better. The second was don't panic unless you see her panicking (which thankfully has not happened).

Thank you all for your prayers. We rest in the fact that our Father has perfect timing and that he is in control of all things, including little baby lungs and platelets that he knit together inside of me.

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

PICC is in!!

Evangelynn had her PICC line put in this afternoon.  The morphine from the procedure slowed her breathing down and it was SO wonderful to see her breathing "normally" instead of chuffing away at 120 breaths a minute. 

PICC Line

The NICU just called to say that the PICC line crew is on the way.  The procedure will take a few hours and they will give her morphine so that hopefully she can sleep through it all.

Quick Update - mostly medical stuff

The short update is that Evangelynn is doing about the same as yesterday. The neonatologist today said he expects her to resolve her breathing problems in 3-5 days, but that it could take as long as a week or more. This is day three so only time will tell. Her IV came out last night and they tried her other arm with no success. Now her IV is in her head and she has become a candidate for a PICC line. A PICC line would prevent them from having to stick her ever again and we know how useful they can be!

The doctor today also wants to start her on a feeding tube. This will remind her stomach that it has a job to do and get it ready for feeding on her own which will hopefully be in a few days. The tube will go through her nose and unless we want otherwise she will just get the milk that I have been able to pump so far.

That's it for now! I'm staying in the hospital today, but I will probably go home (without her) tomorrow.

-BB

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

Kangaroo Care

I just got back from the NICU.  It was the best visit yet!  I got to hold her skin to skin for a whole hour!

During the hour we got to turn her Oxygen down from 40% to 30%.  I sang songs to her and we enjoyed our time together!

The Daily Report

Well we waited all day to see the neonatologist and finally at 6pm today we caught her as she was walking out the door.  The news is a mixed bag of sorts.  Evangeline had gone up today on her Oxygen concentration so much that they have increased the flow of her high-flow cannula.  This allowed them to back down again on the concentration so that she is now on about 35% Oxygen at a rate of 4 Liters.  Her respiratory rate is still too high to try feeding her so her fluids have been changed over to ones that have sugar, protein and fat.  This will help her maintain her weight while she isn't eating but working hard to breathe. 

When asked about the fact that she hasn't improved today she said Evangelynn may get worse before she gets better.  It may take up to 72 hours before she starts making her own surfactant.  Having a surfactant deficiency has to do with her lungs being too immature when she was born.  This makes it hard for her little lungs to stay open which is what causes her respiratory rate to be so high.  If she gets worse tomorrow the doctors will consider putting prongs in her nose, putting her on a ventilator or treating her with synthetic surfactant.  The doctor felt like at this point she is on the bubble for needing further intervention.  As long as she keeps her saturations within normal levels (no matter how fast she is breathing) they will let her continue on her own.

I am recovering well from the C-section.  Today was the first day I have really experienced pain, but now my nurses are on top of that!  I could be discharged tomorrow, but I have no interest in going home since little Evangelynn is here and my boys are being well taken care of by my in-laws.  This means I'll probably be discharged sometime on Sunday.  My prayer is that by Sunday Evangelynn will be strong enough and her lungs will be mature enough to try to nurse.  My goal is to be with her as much as possible so that we can get off to a good start.  The NICU staff here seems so much more pro-breastfeeding than our experience five years ago at Children's. 

Thank you all for your prayers!  We praise God that he protected Evangelynn from my anti-bodies while she was in utero. Without this protection she would have to have IVIg infusions which would have probably made her too tired to breath at such a high rate.  Her stay in the NICU would have no doubt been so much longer!  We also praise him for his sovereignty in all things.  We know his timing is perfect and I take peace in knowing that he is in control!

Baby Girl

This morning at 2am I called the NICU to see how Evangelynn was doing. Her nurse said she was doing fine and she had even further decreased her O2 needs during the night.

Then she told me that earlier in the evening she heard Evangelynn sucking on something from out in the hall (she is in a private room of her own). When she went in to check on her she found her sucking her thumb!! The nurse even called another nurse in just to see how cute she was with her thumb in her mouth. I guess she looks like Asher, and she'll be taking after him in this arena as well!


-BB


"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."-C.S. Lewis

Baby Evangelynn is here!!

This morning at 11am Evangelynn was born!! She weighed 6 pounds 5 ounces and she was 18" long.  Her  Apgar's were good (8 and 9) but then she required some oxygen to help her "pink up".  After I got out of the OR I met her in the recovery room.  After trying unsuccessfully to get her to root (or even open her mouth) the nurse put a blood oxygen sensor on her.  Her blood oxygen was only measuring in the mid 50s.  At first she just stayed with us in the recovery room and we were told that she was just having a hard time transitioning.  They wanted to take her to the NICU, but they suspected that after 4-6 hours she would adjust and be released. 

I continued to recover after the C-section and was eventually moved to the "Mother and Baby" hallway.  After Philip got some lunch he went to the NICU to check on Evangelynn.  It turns out that she is having more trouble than we originally thought.  Her lungs are showing signs of some fluid and they suspect she has respiratory distress syndrome.  This is caused by her lungs not being mature and by a lack of surfactant.  On Friday I had an amnio and her lungs were not mature, but on Monday and Tuesday of this week I received steroids to hopefully mature her lungs in time for her delivery today.  Apparently that was not enough.

Tonight Philip and I got to both visit Evangelynn in the NICU.  Currently she is breathing 36% oxygen on a high-flow canula.  This is down from 100% oxygen earlier today which is good, but her respiratory rates are still too high to try to nurse.  She is on IV fluids to keep her blood sugar up while she is not eating.  The new estimate for her being release is no earlier than 48 hours but maybe as long as a week or two.  Her progress so far has been encouraging.

The best part of my day was getting to hold her for the last 30 minutes of our visit.  The nurses bathed her first and then we just sat in the rocking chair together:

 

I'll try to upload more pictures to our smugmug site tonight.

We still covet your prayers for her continued recovery.  One of the praises that we have from today is that her platelets were in the normal range!!  We are so grateful to not have to think about this other medical complication at this time.  

Money

Ethan: "I wish I had an iPad."
Philip: "You'll have to save up your money to buy and iPad."
Ethan: "I only have 11 monies."
Mawmaw: "For your birthday would it be better to give you money instead of a toy so you can save up for something?"
Ethan: "Well, how about a toy and an iPad?"

Daytona 500

Ethan: Mommy, did you watch the race last night?
Me: No buddy, it got rained out and they are going to try again tonight.
E: But what did all the racecars do last night while it rained?
Me: The cars probably stayed in the garages and the race cars drivers went home and went to sleep.
E: In their race car pajamas?
Me: *hysterical laughter* 

Baby Evangelynn

Monday morning we had our cordocentesis for baby Evangelynn. She did great!! Her platelets were 150,000 and we were so excited to come home still pregnant. I going back to HIROC tomorrow and hopefully after this appointment we will have a better idea of when we will get to meet our baby girl.