Baby J- We are still alive

Car seat test picture!

Ready to head home
(obligatory hospital picture)

I am sure for the couple of people that read this, you have started to wonder if maybe we did not survive our first week.   Well we did.  I just got internet moments ago.   It has been a crazy week.   Baby J came home Monday and we got home about 9pm.  First night went really well.   2nd night she choked on her formula with reflux about 2 hours after eating.  Scared me pretty bad.  Thankfully my parents had pulled out her little syringe bulb thing (of which I had never used) and I was able to clear her pretty fast.  I'm afraid had it not been out I would have lost her.  So 2nd night was a little more sleepless.  

 It's been a very busy week.  After the incident Tuesday night I did some investigating between all the habermans we had and discovered that the one the hospital had been using since she started eating from a bottle was in fact broke.  It had a huge slit through the top of the nipple.   That is frustrating that not one of the nurses caught that.  I mentioned it was going to fast about a week ago and normally would have been much more insistent about that but I thought they knew what they are doing and I've never used this kind of bottle.  In fact they did not.  So the fact that she set off alarms still so much was definitely not the fault of her.   I've used a regular bottle this weeks with a preemie nipple which she does pretty well on.   So we have been going back and forth between the two.  I like the haberman (now that we have one that works) because it doesn't allow anything to come out between her gulps.  

Wednesday I got to take the day off for her doctors appointment.  I wish I could take some time off, but I can't.   I was lucky enough to spend 9 full weeks with her.    We went to her first doctors appointment.  I like her pediatrician who came recommended from a friend.  Baby J weighed 5 lb 4 oz on Monday and was up to 5 lb 7oz on Wednesday..  Which was awesome.  I was worried she wouldn't be doing well.  She will go in for weekly weight checks for a while to make sure she is growing.  She also got a vaccine that she couldn't get in the hospital.   The doctor was really impressed with her - sadly though she had not received information from the hospital yet.   She gave me a different type of Vitamin D, a drop instead of  1ml...so hopefully that will help with the reaction to it.    We also went and met my old daycare buddies and went and met a couple of my cousins.  Ok she met...I already know them.  ha ha.

Herbie and baby

Sebastian and baby!

Thursday I did my first outing with her by myself and though I thought I grabbed a formula- I apparently did not so she thought she was dying of starvation by the time we got home from grocery shopping.  oops.

Friday I got my puppies back.  I am very excited.  Sebastian not so much.  He is very confused.   Herbie is the one showing interest in the baby.  He gets really worried if she is crying.  It's cute.
He's still twice the size of her.    Soon she will be bigger.   She also met some friends Friday night.

Saturday I went to a family anniversary party.  And today is a baby shower my aunt is throwing and church.  So much for keeping her secluded.  Oh well.   Might as well get used to my
busy schedule and life.  

Oh the other awesome news is she went to a follow up appointment for her eyes yesterday and the doctor said he doesn't need to see her again.  He said her ROP looked so much better than in the hospital reports so it is clearing itself up.  Not that she still may not need glasses down the road- but that could have happened without ROP.  So she is officially a healthy happy little girl.   YEA!

It's been interesting when people are like 'cute baby, how old is she" and I reply with almost 3 months.  There is a pause and a oh from the person before they are like- she is so tiny.   haha.  I usually then say she was a preemie.    Someday we will not need that explanation and at the rate she eats that could be very soon.    Thank you everyone for your support and prayers.  Because of that I was able to bring a little girl who almost didn't make it home as a healthier than most preemies baby.  
And now hopefully adoption will occur quickly and we will officially belong to each other - in the eyes of the law.  
I'm so blessed to finally see a dream come true.
 

Baby J Day 78/79 & 1+1=2

Baby J is home!    I am no longer an I, but a we.   It's been a crazy few days, but we have made it home and have survived our first night.  
Day 78 was a truly disappointing day.  I knew the doctors were doing what was best for Baby J, but it hit me pretty hard when they said she couldn't come home.  And it was based on technology that wasn't functioning correctly.  That was truly frustrating.  Especially since she has really been good to go for a week.    But it was probably more upsetting as an inconvenience than anything (I had auditions yesterday and today).   However after 79 days in the NICU (level III) Baby J was released at 11 weeks and 1 day (2 weeks short of her due date).  She is 5lb 4.1 oz and healthy as could be.   Not only was she able to come home early, but she came home on no oxygen, no monitors, no medicines.  The only thing prescribed for her is follow up appointments and vitamin D and sticking with Neosure formula.    She is still using a haberman (a specialized bottle), but I don't think she will be on it long as she sucks that down like there is no tomorrow.

I think she is a little miracle that had an amazing NICU staff and lots of prayers from so many places that helped her to do so well.  I will never be able to show my gratitude enough to everyone that has helped us out or who has prayed for her.   I know how lucky we are.  Born at 27 weeks usually results in all sorts of problems.   BUT we had only problems the first couple of weeks and have done nothing but improve.   It's hard to believe less than 3 months ago this little girl wasn't expected to survive.  She couldn't breath on her own and was on an oscillator longer than she should have been, had hemorrages in her brain, had a heart murmur, her PDA wasn't closed and she was very anemic.   And to top that all off she was gaining weight extremely slow.

However today we can happily say she has none of these problems.   While we don't know the long term effects she appears and acts like a normal newborn who already smiles, is full of spunk, and has a strong personilty.  We left the hospital 2 weeks earlier than due date with only a slight case of ROP (that could still clear up on it's own- and isn't very severe) and that is it.  

We did get home late last night and because I literally just moved a few baby things into the new house and not much else, I feel very disorganized.   We survived our first night alone, without monitors and I even got some sleep.   It helps she came home on a schedule already (though we did throw it off some on the way home) and is a pretty happy/content baby.  Today it is a little hard being at work.  I wish I could take off more time..but it is the way it is.   And Grandma is watching her so she's good.  

1 week old

Thank you everyone for showing me some real good in the world.   Thank you for your support and your prayers.    Your donations helped me to stay with Baby J during the summer and without them I definately couldn't have done that.    Your prayers helped me bring home a healthy baby girl and FINALLY I am on the way to fulfilling the dream of being a mom.   The adoption will now move forward and hopefully soon we will finalize.   Thank you and thank you for reading our blog.  We will continue to keep it updated.

Look how far she has come.   1 week old to 11 weeks old!

11 weeks old

Baby J- Day 77- Getting closer

Baby J is now 5lb 2.9oz.  She hit 5lbs two nights ago.   She is 17.7" long tonight, so almost 18.  Her head only grew about 1/2 inch, but it feels like that's where a lot of her weight has gone.


A lot has transpired over the last few days.  Thursday, Josephine finally got an insurance number.   Yippee.  Yea!!!   So exciting.  That was such a huge stress and while I'm sure some of it will still be crazy since it came so late at least it is there.   I also got the keys to our new townhome/apartment last night and we moved in as much baby stuff as I could find and my washer and dryer.   So excited I won't have to do a long drive with her.  Our only long drive will be to home.    It's tiny but it will work great for the year.   So that meant another torturous day of not being with Josephine, but I'm glad I moved at least a few things in.  This week I will hopefully find a way to get my bed and some pans moved in.  At least my crockpot is there.

Today we had a bath and as usual Baby J loved it.   She kept trying to sink down into the water and drink it.  Silly Girl.

 I also asked to go ahead and take the discharge pictures since she will be getting out sometime this week (unless something happens) and I'm not here during the weekdays.   Yesterday I called and said I had heard a rumor that she may be getting out on Monday.  Then I begged to have her get out on Sunday instead.  The person over Josephine said she would talk to the doctors and see what they thought.  HOWEVER no one seems to think it will happen tomorrow.   Of course no one has actually talked to me about Monday either.  Technically I think 7 days does fall tomorrow.   So think positive thoughts that they will come in tomorrow and say "take your kid home".  They have had a huge influx of babies (and some really critical) the last couple of days.  It's been a little crazy around the NICU today, so I'm hoping they just haven't had a chance to talk to me.   I can't believe how big she is getting.

Today she did have an incident of spitting up and choking a little bit and I was so scared it was going to add a  bunch more time again, but it didn't.  Yea!  Her monitors were all over the place and not accurate.  

Isn't she a cutie.   We have been spitting up a little more so I asked tonight that they cut back on her food a little.  2oz might be a little much.   Tonight they tried the car seat test, the nurse was very impressed with my selection and she fits in it pretty well.  Not as tiny looking as I expected.  She wasn't happy at first and about 30 min in threw a little bit of a tantrum, but did really well and after about 45 min fell asleep.   She was in it for 2.5hrs.  So maybe that will be a big hint hint that we are ready to go.  

Here are a couple of the hospital pics.   I was pretty disappointed in most of them (especially her series pics over the past few weeks.   Not that stopped me from buying them.   I like a few and there are a couple with me and that probably won't happen often.    Keep your fingers crossed and hopefully my next post will be a coming home post.

Baby J- Day 74

Picture courteous of Aunt.

Tonight baby J weighed weighed 4lb 15.2oz .  Hard to believe that is 3lbs bigger than she started out just a few short months ago.    That means she will no longer fit in preemies much longer.

Sunday's incident has bought her at least 7 days in the hospital.   The doctor mentioned (if there were no more incidents) the 24th to my mom......however I have auditions on Monday and Tuesday so that may be a small/large problem.  I'm hoping I can either go and bring her back with my Sunday or she just stays till Wed.   I am soooooooooooooooooo ready to have her home.  Being away from her is becoming a little torturous. Though this extended time does allow her to possibly acquire insurance.   That is still a big mess and I don't really understand why it's such a big mess.

Picture courteous of my Mom.  I don't know why she has two pacifiers.  Lol

It's also really hard having the coming home date be up in the air.  I need to plan....I know it can't be helped.  This also worked out where I will have the new apartment/townhome when she comes home so no long driving daily for her.   Too bad I still have my stupid house.   :-)

Overall Baby J is doing really well. Her eyes were still Stage 2 and had grown into another area, but still nothing much to worry about.  I'm so glad my Mom and Aunt have been able to be with her so she isn't alone.   Since she does so well she's pretty much left alone by the nurses.  They have babies in more need than her now.  She is eating 2oz of food at almost every feeding and does pretty well with all of them.   It's hard to believe she will be home soon and I will have someone else with me always.

I can't wait till everyone can meet her.   While there have been so many things that have gone wrong with paperwork issues and ups and downs....I'm so lucky to get to be her momma.  I can't wait till we can make it official or rather legal.   I've got so many things going well right now and I am so blessed, Baby J is the biggest one of all.

Baby J- Day 71- change of plans

I didn't have any pics from today.

Well we survived our first 'slumber party'.  I even got some sleep.   Sadly though I've spent most of today exhausted---but that's from work not the baby.    We got up around feeding time, changed her diaper and ate and then went back to sleep last night.  Twice I got her out of bed at other times and held her for a short period because she was having a hard time sleeping.

Today was a big day as Baby J started ad lib on her food.   We jumped from 41ml to 50ml at feeding time.  She was super happy about that and was more at peace in between meals and slept so much better.    They were going to do her car seat test today but about 2:45pm today, Baby J started choking and had a huge bradycardia.   The nurse had to suction her nose out because of it.   I had been wondering if maybe she has some reflux as about the same amount of time after every feeding I hear her gurgling but it seems to resolve itself and hasn't really set off any alarms.  That is not what happened this time.  I'm not sure if more food made it worse or what, but it was very very scary as I could see that she couldn't breath.   She always seems a little stuffy anyway, but this really clogged her nose.   So she did not have a car seat test and she bought another couple days in the hospital from it.  Maybe the insurance will come through.

Don't worry afterward she was just fine and thought we should have the food there for her immediately.   During that feeding she was having a harder time keeping her oxygen up so we stopped her at about 45ml.   On ad-lib she can eat as much or little as she wants as long as she hits a minimum during the 12 hr shift.  I asked what it was and for today it was 150ml which is a little less than what she was drinking.   She got that in 3 of the 4 feedings though so I don't think that's going to be a problem.  It's amazing how much difference there is with that little bit extra at meals.  Usually she makes noise all the time and today she slept so well.    Hopefully we will keep moving towards no more bradycardia and apnea spells.

And it probably is ok she isn't coming home quite yet.   Partially because of the insurance and partially because currently I'm feeling a little overwhelmed with the rest of life.   My new job and getting lesson plans.   Trying to get ready to move, trying to sell a house that needs some work and with everything else it's good I can try to sleep tonight.   Some people are looking at my house in the next few days so maybe...fingers crossed.....I'm not sure i'm ever going to get rid of it.

Baby J- Day 70- Slumber Party

Today Baby J weighs 4 lb 9.6oz (she hit 4 1/2 last night).   She is getting so big so fast.  Tomorrow she will be 37 weeks gestational age and 10 weeks old.  Crazy.  It was a very busy day.
Today she got her immunizations.  So she is only a week behind on almost all of them.  One shot she is a little more behind on because they didn't give her the first one when she was born.   She was a champ and only cried while being poked and has done pretty good so far today.   She was a little fussy at one point but after being held went right back to sleep.
Today Baby J met her Great Grandparents.  My dad drove them up so they could see her.   My Grandfather means a whole lot to me so I'm very glad they got to come and see her.   They just kept saying how small she was.  I don't see a tiny baby anymore.   She seems normal sized to me and so big.

 
Baby J has been eating all of her bottles since Thursday night.   She is now on formula only and sucks it down in like 5 minutes.   Tonight they took out her feeding tube.   That waas pretty exciting and a big deal.   That means she is no longer being supported by anything.  She still has monitors which she will have till she leaves, but she is not being supported by anything but herself.   Tomorrow they are going to start ad-lib with food which means she can eat as much or little as she wants at each feeding as long as she meets their minimum during the shift.   She would really like more at most feedings so maybe she can have it.

Tonight we are staying in the family room at the hospital- a slumber party...well without the party and probably without the slumber. (which they have the temp set at 77 and I think I may melt)  The Nurse Practitioner offered it since she knows that I only can come on weekends and that she will most likely be going home this week.   The first feeding though in the room she bradyed really badly and then got sick.  However I think it was from the move and bright lights.  She is now sleeping semi peacefully in her bed while I do this.  

 I am so ready for her to come home and so happy that she is doing well.   All the nurses and doctors are so impressed with her.   However I have one glitch and I know there are such bigger problems out in the world, but to us this is huge.  Baby J's insurance still has not come through.  Yesterday a nurse made me feel worse about that and told me that yes I would get stuck with the bill.  She about gave me a mental breakdown and for the first time since all this started I almost started crying and started really questioning this decision.  I so badly want to keep her, but I can't afford this hospital stay in any way and I made sure that wasn't going to happen before I said yes.  Shoot without the support people have given me, I couldn't have stayed up here with her so much.  I'm a very poor teacher.  :-)   I don't understand why it hasn't been processed since she qualifies automatically because of her birth weight.    Please say a short little extra prayer that it gets here before she is released.  I can't take her to follow up appointments without it and having to deal with all the mess of not having it before the release will land me in a mental hospital.

I did get the apartment in Wichita and hopefully will still get to move in on Friday.   I love my new job by the way and think it will be a great year.    Well I should try to sleep before her next feeding.   Wish us luck.  :-)  Thanks everyone for your support.

Baby J- Day 68- Auntie Day-

Baby J weighed 4 lb 6.5oz.

 
 My Aunt is staying with baby J for a couple of days and gave grandma a few days off.  Because she has a real phone that can actually do things, I'm getting regular updates and pictures.   All the pictures above  are from her.  I think she is pretty happy holding and spoiling baby girl.   I am so glad that others can be with her when I can't.

Yesterday my brother, dad, and I drove up to see her for a little bit.  It was Uncle's first time holding her.  He was pretty happy about that as well.

Baby girl is now getting formula part of the feeds to start switching her over and apparently is finishing those bottles.  She has been getting much better at eating her bottles and we are still moving forward.
My mom asked the doctor if he knew when baby J would get out and he assured her it would have to be after she was taking all feeds by bottle, but that they would do a MRI when she was close....Yeah she had that on Monday.   We really are just waiting on the catching on to eating completely by the bottle.   Everyone is amazed at how well she is already doing.   She's technically on a 'Haberman" still and not a bottle, but same thing.  I know she is still setting off alarms some when she eats, but not much.

It was nice seeing her yesterday.  She held on to me really tight.
It was so cute.
I wish I could be there all the time, but I need to work (and thus far I LOVE my new job).

 

The people from Ronald McDonald house got me 2 bibs they say "Little Miss Behaving"  ha ha.    And look at those ADORABLE outfits a former student brought me tonight.   She brought me several clothing peices and an awesome gift card to sonic.  That was extremely nice of her and it was great to see her.  I know there are some clothes at my parents house too.  My baby is going to be styling and CUTE.   I can't wait till she comes home.....
Speaking of which, don't get to excited yet, but today I recieved a call from the hospital case worker.  She was trying to set up an appointment for Baby J at her pediatrician, but they only let the parent set it up.  So she was trying for next Friday because they want baby girl to be seen within a week of leaving.   She also said it is totally up to Baby J when she will get out.  She could stall out on the progress, but she thinks it will be soon and wants the initial appointment to be set up and just changed if needed.  I don't think she's quite that ready and think it will be closer to the weekend before she is ready so I set it up for the 26th.   Baby J may be coming home very very soon.   She will have lots of appointments with other people as well so that should be fun.  She also told me I may not have much warning when she does come home.  I might show up and they will say she can go.   She acted like it could be Monday or Tuesday.  I would really like her to wait till Friday.   I don't think it will be Monday or Tuesday.  Mom said a nurse said she has to take all her food by bottle for 48 hrs.
Hopefully her insurance stuff will come in very very soon.  It's been almost 5 weeks since the application went in.   And hopefully tomorrow I will hear that my application for the apartment was accepted.  Any way I hope I do hear tomorrow.  I really need to know what my address will be for all the hospital paperwork.
I'm looking forward to tomorrow because I will meet the rest of my students, but I'm also looking forward to going back to to be with Baby J for the weekend.   Sure would be nice to have her home and closer.  And I know lots of people who want to meet her.

Baby J-Day 66- Grandma day 2

Baby J was 4lb 5 oz tonight.    She's getting so much bigger.    Grandma is with her and I am at home slaving away in the school system all ready.....ok maybe not slaving away....I really like my new job so far.  Met lots of parents/students tonight and I'm looking forward to having the students.

Sorry no pictures of baby tonight since I'm not there, so you get a bad picture of me with my puppies at my parents house (that's their dog in the middle).  BUT lots of good news.  Doctor talked to my mom today and said the MRI looked great...no concerns.  And he acted like she will be going home very soon. He told her it does take awhile for the feeding to get under control...which as we all know is literally the only thing keeping her in the hospital right now.   I'm so happy the MRI came back.  They were checking all of the brain to make sure there wasn't other damage/more damage or blood clots left from her beginning problems.   Most NICU babies usually get one right before leaving to double check their heads.

The other good news is that the eye doctor was there today and she told my mom that the eyes were no worse and probably had hit a plateau and would start to get better.   I hope that is true and next week we start to see improvement.  We are so lucky that she is doing sooooooooo well.   I am excited to get her home...but it would really be better for it to happen after I get the apartment which hopefully will be next Friday. I'm so thankful my mom and aunt have volunteered to be up there some when I am not.   My brother and I are going to go up tomorrow after work to visit for a short time.    Probably not the best decision to do the night before starting with kids...but I really want to go see her.     PS.  I still am very thankful for everyone's support.   Your thoughts and prayers are a very large reason why Baby J is doing so well.  

Baby J- Day 64- New advances!

Last night baby girl weighed 4lb 2 oz, length 17inch (that's a 1.5 inch gain from last week) and her head was 29.5cm, about 1.5 cm bigger than last week.

We are growing.   Yesterday we got a crib!!!!  And she has been holding her temp very well.  Granted she has a onesie, a sleeper, and the halo wrap and sometimes a hat...so she better be warm.

 

Today we got our hearing test and both ears passed!!!  I have also been told that in rounds today they decided not to do another head ultra sound, instead tomorrow they are doing her MRI.   This may not sound like a big deal to the rest of the world...but this is a very big deal.   All NICU babies get an MRI before they go home!!!!  No I don't have a date yet, but things are moving quickly towards it.   The hearing test and the MRI are both things that happen as they are getting a baby ready to leave.   While the doctor suggested two weeks last week, I don't think she will be out by the end of this week because she isn't eating everything from a bottle yet.  HOWEVER I can't possibly imagine that she will not be getting out within two weeks from today.  I'm so confident about this that the car seat is now in the hospital room.   I know she has to do a car seat test and I would hate for her not to be able to get out because I couldn't get the car seat here when they were ready.  So now it will stay here.   So glad I bought it this last week (though of course the price dropped $50 after I did).  I sure hope her insurance shows up soon.....especially glad I didn't immediately try to put her on mine, cause I will not have insurance for the month of September....It's a little odd.   I'm not sure why my jobs don't go back to back.  Oh well.

Today I asked if I could bring  a mobile or something for her crib and was told they had some.  So our nurse went and found one and now we have a different crib with a mobile.  She likes the music.  Hasn't quite noticed the movement above her.


She actually is listening in these two pictures.

Yesterday Baby J took 80+% of her food by bottle.   It was a big increase from the day before...course I was there to feed her yesterday. Baby J finished 3 bottles completely for me this weekend and most of a couple others.  One time she refused to eat for even me.  that was sad.   We also had a bath this weekend.  She really likes her bath.  

This week is going to be a long week with so much going on and not being able to be in Topeka with baby girl.  ON the plus side of non baby world....after a really long thought process and almost crying several times today over the decision, my cat is going to a home with another cat so she will have a friend.  I never ever thought I would be a person that had to find a new home for a pet.  I am a big believer that once you take them in they are part of the family, your responsibility.  This has been rough but I think she will be happy with another cat to live with...she brings enough of them home.   And deep down with her shedding, I'm not sure she should be around Baby J and her weakened immune system she will have....she likes to curl up next to kids and in the baby bed.  

It's hard to believe that me...the person who doesn't really always do well with big changes, is moving, starting a new job, and now has a little one coming home soon.   While the house selling has come to be extremely stressful, life is 5000% better than it was just a few short months ago.   It's amazing how life changes in just a short time.   I hope everyone who is involved in school systems has a great first couple weeks back.