Hailey's updates from the NICU (first 3 weeks)

February 28, 2011 (AM)

Just came down from special care.  I held Hailey for about 20 minutes.  She seems to be doing good.  They are hoping to remove the siPap later today.  The nurse said she tolerated without it when she was bathing her just fine.  She talked to me a little bit about when we are discharged and what options we have as far as staying at the hospital during the day or night.

The only issue with her when I was there, is her IV.  The one on her arm was leaking around the insertion site so they moved it to the other arm.  It must have been leaking somewhere because her left arm started to swell from the fluid not going in to her vein but into her tissue.  When I left, the nurses were going to try to find a vein in her foot.  I want to forewarn you that if that doesn't work, they will have to put the IV in a vein on her scalp.  I just wanted to throw that out in case you come in the morning and you see tape and stuff on her head.

She always seems so calm when we are up there visiting her.  She squirms and stuff moving to our voice but they said she can get a little fiesty.  She definitely doesn't have a problem burping or pooping....she is an Arthur child! 




February 28, 2011 (PM)

We are home with the boys this evening.  When we left this evening, they were getting ready to give Hailey her 3rd feeding through her feeding tube.  Once she started feeding her, they removed her IV.  I have been able to pump so they have been putting that in her feeding tube.  Since we came home, they will supplement with formula once they run out of breastmilk.  They removed her siPap this morning and put a nasal cannula in.  She pulled it out at first but they were able to get it to finally stay put.  She was very active this morning and squirmy.  Once they started feeding her, she spent the remainder of the day rather still and content.  The nurse said she was a early newborn with a full belly.  She finally opened her eyes when we were leaving today.  We are headed back to the hospital in the morning.  I'm not sure how long we will be there, I may go back again in the evening once Jason's mom and dad get here. 

The boys were excited to see us tonight.

The boys and I were on the couch this evening when I started crying.  Brayden leaned over, hugged me and said “Mommy, I feel the same way”.  I looked at him and said, “What do you mean”.  He said, “I miss my sister too.”  It broke my heart.  We then had a family hug, minus Hailey.


March 1, 2011

Well, I'm going to get my update out of the way earlier today.  I'm starting to wear down a little.  Jason and I headed down this morning.  The neonatalogist said that today would be an uneventful day.  Hailey was a little jaundice this morning so she had the light therapy blanket on all day hoping that will clear it up.  They were still just focusing on her breathing and eating.  She is only on room air it is just being forced in through the nasal cannula.  The wonderful nurses were able to get her to eat a little last night in a regular bottle.  Hailey has to be in the right mood for it though.  Sometimes she is just too tired and gags on it...not to mention, it is a little difficult to eat with a nipple and have a feeding tube down your throat.  We held her most of the day.  She doesn't really like to be swaddled while she is awake.  She likes to have her arms free.  She was awake for 30 - 40 minutes this morning with me.  She is such a sweetie. 

The nurses and volunteers make all the babies in special care a quilt to take home.  Hers is beautiful...it is bright pink and purple with flowers and butterflies.  It looks cute in her room.

We had a message at home from the genetics doctor about her test results.  We know what the results will be so it doesn't matter if we hear tomorrow or today.  We know the answer, I just didn't want to hear it today.

We are so thankful for all of our wonderful friends and family that are helping and supporting us through the mass chaos of juggling life and being with our boys and our precious baby.

Here's to a good today and a better tomorrow!


March 2, 2011

Well today's update is a lot like yesterdays.  Jason's parents, Jason and I headed down this morning to spend with jellybean.  She was awake for awhile this morning.  She is still a little jaundice so they had the bili-blanket on her.  We say she looks like a glow worm.  Hopefully tomorrow her bloodwork will show an improvement.  She is on the same air that we breathe but she still has a nasal cannula in to force it into her lungs.  She is slowly taking more milk in a bottle but gets tired easy and then takes the rest through her feeding tube.

I spoke with her nurse this evening and she had just had a bath and was getting ready to feed her.  She went up another ounce so she is creeping back up to her birth weight.  She is at 7 lbs 2 oz now.

She is a cuddler and has daddy wrapped around her little finger.


March 3, 2011

Well I'm honestly hoping all my updates are this uneventful until I send an email that our precious baby is coming home.  Hailey's breathing is good...on minimum flow, room air except when she is taking a bottle.  They do have to increase her oxygen slightly while she is eating.  The work is a little too hard for her now.  She isn't taking all of her feedings with a bottle.  They are trying to get as much in her with a bottle as possible.  The night nurse has been having better luck with bottle feeding.  I'm wondering if we are wearing her out during the day...hmmmm.....  They were able to mover her feeding tube to her nose which is making bottle feeding a little easier.

The neonatalogist said she is ahead of what he would have thought....the only thing he will say about her going home is two - three weeks.  He's hoping closer to 2....we are praying it is closer to 2!

Jason's parents headed back to Indiana today and J's sister, brother-in-law and nephew have come for the weekend to help with the boys while Jason is out of town.  The boys were very excited to see them today.

Uncle Michael was able to get his hands on her for the first time today...I would have rather had her home for my birthday but I can't complain because for my birthday, I have a beautiful little girl.  On a personal note (sorry for all the guys - you won't be able to appreciate it as much), I wore regular clothes today...not bad 5 days after having a baby!    


March 4, 2011

Well, today the little peanut was tired.  She spent a lot of the day snoozing.  They didn't bottle feed her as much today to give her a break.  One of the nurses called it her "lazy day".  This morning when I met with the doctor, he said that he does now hear something in the lower portion of her heart which could indicate a heart defect that may or may not need surgery in a few months.  Yes, he was vague but that is because he isn't certain but he has to make us aware that it is a possibility.  He said he is not a cardiologist and they will be able to tell with certainty.  As of now, we won't make that appointment until she is released from the hospital.  Unfortunately, mom's mind races to worst case scenario but we need to step back and take one thing at a time.  The first thing is to get her out of the hospital. 

Staci and I went back to the hospital this evening.  She was much more alert and responsive.  I'm beginning to think she is a night owl.  She is starting to make little baby noises.  I forgot how much I miss those!  There is something wacky with her weight from yesterday....they said she had lost 2 oz but then today her weight was 8 oz more...so the nurse thinks yesterday's might be incorrect.  Guess we will see what the doctor says tomorrow.


March 5, 2011

Happy 1 week birthday to my sweet little girl!  Today was a much better day for her.  She was alert this morning when the doctor came in.  He said that he murmur was a little softer today.  He does still hear a little in the lower portion of the heart but he reminded me that he is not a cardiologist and we should wait on focusing on that until she is released and examined at Children's Hospital.  He said that he was worried I went worst case scenario yesterday when he mentioned it.  Of course...I did.  Dr. Schibler (one of her neonatologists) said that he thinks the scales were off on a previous day and that it was very unlikely that she gained 8 oz in a 24 hour period.  The nurses have been instructed to only weigh her on a stand alone scale from here on out.

I spent most of the day with Hailey (thank you Aunt Staci and Uncle Michael for taking care of the boys!!!!).  She was alert several times and "talked" to me when she was awake.  Staci and I were able to video a little of her cooing yesterday and Ian absolutely loved it.  I'm going to try to video a little more tomorrow for the boys.  She took a little from her bottles for me with each feeding, not a ton but a little.  Hailey christened her entire bed this afternoon.  Mommy changed her diaper and wasn't quick enough.  The poor nurse had to change all of her clothes and all of her bedding.  Guess mommy needs a refresher course on diaper changing :-)

Today was better than yesterday.  One of the nurses said it was like running on a treadmill at 7 miles per hour.  Eventually you get tired and have to rest.  Yesterday was Hailey's resting day. 

I thank God for a good today and praying for a better tomorrow.  We can't wait to get our sweet little girl home to be with mommy, daddy and her wonderful big brothers!   I'm taking all my newborn stuff there tomorrow for her to wear because she is almost 8 lbs and won't fit in some of it by the time she comes home!

I had to share....I just spoke with Hailey's night nurse.  She actually bottle fed 3/4 of her last feeding without needing her oxygen level increased.  Her oxygen is at the same level that you and I breathe with just a little air flow.  Her weight gain was about 1/2 of an ounce which is right on target.

Baby steps....one day at a time....


March 6, 2011

Wow....what a day Hailey had!  She had a big day of visitors.  Aunt Staci and Uncle Michael came and said good bye...they had to head back to Indiana today.  Daddy made it home from his trip and then both big brothers were able to visit.  Ian was so excited to see his sister.  The poor thing cried when he had to leave, he didn't want to leave his sister because he said he loved her so much.

Apparently, Hailey was doing so good after she saw her big brothers that they removed her nasal cannula!  We were so surprised when Jason and I came back this afternoon.  When we left, she had been off of it for about 5 hours.  They weren't going to push her on her feedings through the night so she can get used to not having the forced air.  There is a chance they will have to put it back in occasionally but the fact that she went at least 5 hours (we had to go home so we aren't sure if she still has it off) is awesome....it is definitely a step in the right direction.

Daddy and I made Hailey cry this evening.  We were trying to wake her up for her feeding and she apparently didn't appreciate it.  It was the first time we heard her cry since last Saturday when she was born.  The nurses said they don't give her a chance to cry! 

Thank you for all the thoughts and prayers.  She is a very lucky little girl to have so many people praying for her.  Here's to a good day and a better tomorrow.... 


March 7, 2011

Well our little jellybean, peanut, princess, baby doll, etc....she has just a few nicknames already, had a fantastic day.  She stayed off of her nasal cannula...no additional help with breathing.  When I spoke with her doctor this morning, he said that she needed to stay off of that for 48 hours and she must bottle feed at least half (30 ml) for 8 full feedings/24 hours.  So if she does 7 feedings in a row and then doesn't eat the 8th one, we start over at one.  That is basically what we did today.  I think she was on #7 when I left the hospital and they had to tube feed her at 5:30 p.m. tonight.  So we started over at 1 with her 8:30 p.m. feeding tonight.  That's okay though...today was such a big day for her without the forced air assisting her breathing.  I can't imagine how much energy that took her little body.

Hailey spent a couple hours snoozing on daddy and she had a visit from Mamaw & Papaw Arthur.


March 8, 2011

Well little peanut had another good day.  The doctor this morning said that if her day today is as good as yesterday that he will remove her feeding tube tomorrow....so we will see what happens in the morning.  She was really tired this afternoon.  It is taking a lot of energy for her to breathe totally unassisted and bottle feed.  If Hailey continues on her current path, she might be released sometime between Friday and Monday.  We will have to go to Cincinnati Children's on Monday for her echo.  Thank you for all your thoughts and prayers so far....please keep them coming, we really hope for good results for the echo.

I hope Hailey one day realizes how lucky she is.  She has so many people that love and care about her!

Here's to everyone having a good today and a better tomorrow!



March 9, 2011

Hailey didn’t have the best night.  She was tired and didn’t feed as well.  The doctor said that now the earliest she will be able to come home is Sunday.  They changed her feeding through the day to letting her decide when to eat.  She is now eating every 4 hours instead of every 3.  The nurses are letting her give cues that she is hungry.  Knock on wood, it seemed to work better.  I stopped by this evening and she wasn't having a good night again.  Her oxygen levels weren't really good so I figure we will go back in the morning and she will have her nasal cannula back on.  Her nurse assured me that this happens sometimes and it just means she's working too hard on everything.  It's hard to not be disappointed when she has a setback.  I know she can't run a marathon and get out tomorrow but it makes me worry when she falters a little.

Hopefully the rest of her night goes better.

March 10, 2011

She had a better today.  She took at least half of all her bottles and then they put the rest in her tube.  She seems to be the most alert mid-afternoon to early evening and then again around 3:00 a.m.  Her oxygen was back down to 21% (which is what you and I breathe) this evening.

Jason and I visited with her tonight. She loves to sleep on daddy's chest.  Her oxygen levels seems to be at their highest like this too.

Hailey's big brothers recorded a little video for their sister.  They both sang "Twinkle, Twinkle Little Star" and "You Are My Sunshine".  They both turned into wanna-be comedians as soon as the camera started.  She didn't "watch" the video but we did let her listen to it. 

Praying every day that God makes Hailey strong enough to come home soon.....from our lips to God's ears!

March 11, 2011

Well knock on wood, little jellybean had a good day.  Her morning nurse removed her nasal cannula so she was breathing on her own most of the day.  She was much more alert today and did about half of her feedings through a bottle and the rest went into her feeding tube.  She actually stayed awake in between two feedings.  I've never seen her awake for so long...today she was wide-awake for 3 1/2 hours.  It was good to see her so active and alert.  Jason and I went back again this evening while the boys stayed with Aunt Cheri, Uncle Terry, Tristyn and Korbyn.  They are definitely liking the extra company.  Hailey was sound asleep for most of our visit.  We were two minutes from walking out of the hospital room when little Miss Hailey decided to wake up.  Well....she has daddy wrapped around her finger and we stayed.  Daddy couldn't leave her awake.  In his defense, it is much harder to leave her when she is awake then when she is asleep!
 

She has all the nurses arguing over who is assigned to her...I think she is getting a little spoiled.

Thanks as always for all the thoughts and prayers.  I'm thanking God for a good today and praying for a better tomorrow! 

March 12, 2011

Happy 2 week birthday Hailey!

I wish all updates were this uneventful.  Hailey had a good day today.  Her breathing was good and she didn't do too bad eating.  She started a little slow this morning but finished an entire bottle for me this evening in less than 12 minutes...for her that is awesome!  Her Aunt Cheri and I visited this morning and then I went back to the hospital this evening.  Hailey has mastered the waking up right before mom or dad leave and make them feel guilty!  She was wide-awake again this evening when I was leaving so I stayed longer.  I definitely think she is spoiled already!  Her awake times are much more alert than they were a few days ago.

March 13, 2011

Jason and I spent the day with Hailey.  I would like to say I held her a lot but daddy is a baby hog!  She wore herself out last night with her feedings so she was slept a lot while we were there.  She didn't gain any weight yesterday so the doctor increased her feedings by 5 ml today.  She took anywhere from half to all of her feedings from last night at 9 p.m. through 1 p.m. today.

I absolutely love Hailey's nurses...they let Ian sneak in again to see his sister.  He seemed a little apprehensive at first but warmed up after a few minutes.  It was great to see the boys with Hailey again but hard for the four of us to leave her.

Thanking God for a good today and praying for a better tomorrow.

March 14, 2011

Hailey had another good day.  We are playing the waiting game now.  She took about 75% of her feedings over the past 24 hours.  The doctor would like her to eat closer to 95% of them through a bottle before removing her feeding tube.  Then after the tube is removed, she needs to eat ok for 24 hours in order to be released.  We will go straight from Bethesda hospital to Children's Hospital for our appointment with the cardiologist.  They will listen and more than likely do an echo to see if the murmur is small enough to resolve itself or if a surgery will need to be done in a few months.  We are trying to not look that far into the future but we are praying that she will fall into the 60% that do not require surgery. 

I will have to say though, my little peanut is definitely her father's daughter.  She doesn't eat as well in morning (her dad doesn't eat breakfast) and she prefers to sleep most of the morning. 

The nurse yesterday installed a mobile over her bed and she seems to like it.  Hope she doesn't get too attached to it!  Here are a few pictures from today.  She definitely does not look like a preemie!

Here's to another good day and praying for a better tomorrow!

March 15, 2011

Still playing the waiting game.  Hailey had her feeding tube removed today!  She has to continue to take her feedings every 3-4 hours no less than 45 ml each time.  If she doesn't do that for two consecutive feedings, she will have to have the tube put back in.  The timeline is that she cannot leave the hospital until she does that for 2 days.  So we thank everyone in advance for your continued prayers!!!  Daddy and big brother Brayden paid her a visit tonight.  She was wide awake and loved listening to her big brother.
 

March 16, 2011

Today was a good day.  As long as the feedings and breathing continues on the current path, Hailey will be released from the hospital tomorrow morning.  We have a 10:30 a.m. appointment at Cincinnati Childrens Hospital with the cardiologist.  There are three possible scenarios:

1 - Her murmur will be monitored and possibly close on its own.
2 - Her heart will need to be repaired with surgery in 3-4 months.
3 - Her heart is unrepairable and/or she will be admitted to Childrens immediately.

As you can imagine, we are praying that our family of five will be home together under one roof for the first time.  Thank you, in advance, for all your thoughts and prayers.  Hopefully all the prayers will go from our lips, straight to God's ears.

Thank you God for a good today and please give us a better tomorrow!!!

March 17, 2011     

 

Well, there will be a party of 5 in the Arthur household tonight!!!  We were very excited to take Hailey out of the hospital.  Going to Cincinnati Childrens was bitter sweet.  The good news is she came home with us and her heart defect is repairable.  The bad news is they will have to preform open heart surgery to repair the defect.  She has a ventricular septal defect, which means she has a hole between the left and right ventricle.  We have an appointment in 4 weeks to have another EKG run and to have her assessed.  They now are watching for signs that her heart is working harder and the pressure in her lungs is increasing.  They are planning on surgery when Hailey is 3-6 months of age.  99% or more of these surgeries are performed with no complications.  When the surgery is performed, she will be in the hospital 10-14 days with a couple of those days in ICU.

We are very happy to have her home...her brothers were too (but they decided they needed to stay outside and play!).  We are just trying to not focus on her surgery and enjoy having our three children at home together!

Thank you for all your thoughts and prayers....we will need them again soon!