Baby J. Day 53- Bottle time!!!

Josephine is finally putting on weight.   Last night she jumped 50grams to 3 lb 7 oz and tonight she put on 30 more grams bringing our weight up to 3 lb 8 oz.   That's 3 big gains in 3 nights.   YEA!!!!

Sadly yesterday the eye doctor came and diagnosed her with some Stage 2 ROP....eye problems.   BUT it's still correctable on it's own at this stage and she will be back next week to check again.

The speech pathologist came back today in the afternoon to try a bottle again. (well actually it's not a real bottle- it's a special bottle like contraption).   It took Baby J a few seconds to remember what she should be doing....but then she started sucking on it.   Her heart rate did not drop this time like on Monday, however her oxygen dipped a lot into the mid 80's.   So the speech pathologist went to talk to the doctor about trying feeding with oxygen because she is ready to start practicing some with the bottle.  The doctor said since it wasn't real bad that we could start trying feeding, but not to use oxygen unless we continue to see it happen.   At this point Baby J had fallen asleep- however she had upped her intake from 7ml to 10 ml (which is 1/3 her serving of food).  

So at the next feeding the nurse (whom was the first one we've had that I am NOT impressed with) almost didn't let me try because it takes Josephine a while to wake up.   But I did get to and not only did Baby J increase her total amount to 12ml, she only dipped once below 90 and it was quick and bounced right back up.  Baby J paced herself and I only stopped her once because I didn't want her tummy getting to much at once and thought she should have a break.   And she didn't fall asleep on me.   She just stopped showing interest in it.  She might have tried after a couple minutes break but the nurse was kind of impatient and so she got the rest by her tube----however she did stay awake the entire feeding.   The pictures above are after this feeding while the rest is coming in her by her feeding tube.    I love that the last 3 days I've gotten to hold her a lot more and I think it's making a difference on her weight gain.    Tonight at her 9pm feeding- the nurse didn't feel like she was showing enough interest or awake enough to try.  She felt she was to tired. Of course after the feeding tube was started Baby J started sucking away gladly on the pacifier and even woke up.   Oh well.  We don't want to overwhelm her.  The nurse said that it's unusual she did two feedings in a row and did so well.  Apparently they also have a grading system when the babies eat and if they don't do very well or score low they can't try again for 12 hrs.  That seems extreme, but is part of the reason why she decided it would be better to feed her via her tube.   So I think tonight she is only going to try the bottle at the middle of the night one and not the early morning one so I can feed her at the first one I'm there for tomorrow.

I'm so excited to get to this stage.   Partially because I get to hold her more.  She loves being held.   Today was  a busy day for her with all of this going on- plus it was bath day.   Grandma and grandpa came and saw her again today and we had a visitor from KCSL.   They have been so helpful and supportive during all of this.   I'm glad they are the ones I chose to work with.

Tomorrow I'm going to a huge kids consignment sale and for the first time am shopping for a kid of my own.  I've shopped for relatives and foster kids...but this time it's for my baby.  I'm so excited.....though I will have to limit myself cause of funds.  that's ok.

Thanks for the continued support from everyone.  I'm so glad that Baby J has so many people praying and thinking good thoughts for her.  We are going to get this bottle thing down quickly and be one step closer to coming home.

Baby J- Day 51

Weight 3 lb 4.2 oz - we are really starting to get bigger.  :-)  Tonight she is finally big enough to start having an entire ounce of food at each feeding which is awesome, especially since she's thinking we are starving her by the time it is meal time.

Today a student nurse was in and out of the room, and she helped me get Josephine's footprints and handprints.  I had not asked yet because she has been sick and then I just keep forgetting.  I'm so excited I got them, even if it is after 7 weeks.        

 

 Yes that's a quarter.  Her handprints are almost the same size as her feet.

Last night since Baby J was at 34 weeks they removed the cover over her isolate and just put a blanket on top.  Now we can see her all the time.  It's kept her awake a lot more as well.  They assured me it wouldn't bother her eyes. (which get checked again tomorrow- hopefully they have not gotten worse)

  

Today the speech language pathologist came in to see if Baby J was ready for a bottle  She ate 7ml of her 29ml.   Unfortunately she had some drops in heart beat and oxygen, so she will try again later this week.  The speech pathologist said that she was very impressed with Baby J and that she did really really good.   I was a little sad that we couldn't start giving her a little bit each feeding, but she's going to rock it the next time.   Baby J was doing everything she should be doing.  The rest of the day every time I gave her the pacifier, she would suck for a second and then give me this funny look.   She's  a fast learner.  She's also getting really good at holding onto things.   The OT says I am where I am supposed to be for my age as well.   

This is her snuggly.   It's something I can hold onto for awhile to put my 'smell' on it.   She was holding it so well for awhile.   She's had this since birth and actually has a second one because we thought we lost this one.    

Baby J- 7 weeks old (34 weeks gestational)

Baby J now weighs 3lb 2.4oz.  We are slowly putting on weight.  Her length last night was
39 cm (or almost 15 1/2 inches)
This means she has grown almost 1 1/4 inches longer.  She's starting to have a double chin and little chubby legs.
Today she is 7 weeks and would be 34 weeks gestational age.   It's hard to believe she is almost 2 months old.   Today was her last dose of caffeine. They haven't upped it since she's been gaining weight so it shouldn't make any difference and I would be very happy not to go home on that.  

Cone head??  Nah it's her hat sliding off!

Most exciting news though is that they have put in the order for the speech pathologist to come and examine her- that is the person who decides if she is ready to try a bottle.   She is ready.   She is showing all the signs the hospital is saying should be there.  She is awake around feeding time, she looks for something to suck on, and she is definately showing signs of hunger.   About 1/2 hour before feeding time, she believes she's starving.   Today she sucked on my finger.  It was cute and kept her calm for a little bit.  She spends a lot of time sucking on her pacifier - we moved up a size the other day.    

Today she has spent a lot of time awake, most of a two hour period.  So I've taken to making faces with her and watching her smile.  Of course she stops or pretends to be asleep every time I get the camera.   We are still having some problems with temperature, but I wonder if she's being dealt an unfair judgement since they have kept her in only a onesie.    Today she got another bath.  She LOVES bath time.   This time we got a bigger container with a bed type thing that slanted upward.  She was able to lay on that with a lot of supervision and she really enjoyed that.                                                                            BTW- I can't thank everyone again for the support they are showing me through prayers, love, donations, and watching my pets and house.   Tomorrow I'm paying a huge chunk of money to Ronald McDonald house and thankfully it's from donations.  I could never have been able to stay up here as much as I have without everyone's help.    And honestly I think it's made a huge difference for Baby J to have someone here.  Many of the nurses and doctors tell me she's a miracle baby (I think I would agree, but I've become a little biased)   :-)   You may not think you are a part of that, but just by reading my blog I know that people are supporting us and it's hard for me to ask for help, but I'm learning.  AND I absolutely am very blessed and appreciative of it.    

So that's about all for tonight.  I hope I have some really good news tomorrow about bottle feeding.  Enjoy these pictures I took while she was wide awake today for such a long time.   

Happy 7week Baby J.

Tried to take a picture of her holding her pacifier in her mouth with her hand, but she threw the pacifier at me as I took the picture.   Silly girl.  And as you can tell she is very amused by it.









 Currently plotting how to get out of the cuddled position the nurse put Baby J in.  

Hi everyone!

 Mom stop taking my picture!!

 Little feet, little fingers

Totally faking her sleep here.  




And just for fun.....last night I got to see my puppies.  They were VERY HAPPY!

Baby J- Day 48- No more oxygen

Today around 3pm they decided to try taking off the low flow oxygen.   She got her food and was held at the same time it came off and did really well.
These pics are immediately after it coming off.    I think she is checking to see what her nose feels like.

 

When I left the oxygen was still off.   I'm hoping they will start trying a bottle in the next couple days.  She is showing all the signs that they talk about and I think she is ready to try.

Yesterday I got the joy of going to a parenting class that is required.  Wasn't much new, but the discharge coordinator must know something I don't, she was acting like our discharge was coming sooner than later.  A lot of things she told the other parents she changed specifically for me- cause my baby is so much smaller.  Got a free Halo brand wrap so that was totally worth the class.   And a little bit more information.   I have so much experience with babies and young ones though that not much of it was new to me.    She briefly brought up RSV and pointedly asked me if I'd already been talked to about preventive medicine- it seemed like I was the only one there that qualified for that.   I have already filled out the paper work for it.  

Today we had some issues with keeping our body temperature at the correct place.   Part of it was she was in her bed without any clothes for awhile and there wasn't anything heating her so I'm sure she's better by tonight.

My aunt and uncle stopped by on their way home from a trip.  That was awesome and they took me to supper.    I have such a great family all the way around.

Baby J- Day 46- We have a 3lb baby!!

So much for not posting every day...but so much keeps changing.   Tonight Baby J weighed in at 3lb exactly.  Today I also watched her climb her way up the bed

every time I walked over to see her, she pretended to be asleep

She got quite a ways.  I kept trying to move her tube so she didn't choke.

Then while I wasn't looking she turned her head the other way...so much for moving the tube out of her way.  This picture is after I moved her oxygen tube to the other side.

Today she also got her first bath in a 'tub'.  She loved it!  She's had sponge baths and had her hair washed but that's it so far.

 

 You will also notice something missing in her room.  
Hint:  a machine!!

Today Baby J was put on low flow oxygen (the doctor said she won't be on that long because her oxygen levels are high- though her breathing numbers are high sometimes)

So instead of a machine on a stand- it's something hooked up into the wall and it has a nice comfortable nose piece.  


Tomorrow I get to go to a 'baby care' class.  That should be interesting.   We are slowly getting closer to coming home.   Just need to keep adding weight.  It would be awesome if she could come home earlier-  I am a little stressed/worried about when school starts and I can't come up as much.   And I think she will come home before her due date.  She's such a strong, amazing little girl.

Baby J- Day 45- First Dressing!

Sorry for overwhelming the digital world with pics of my baby and life.   I really was going to wait for a couple days but Big things are happening- both good and not so good news today....well ok tiny things cause baby J isn't very big.  Today she weighed 2 lb 15 oz still but gained 20 grams.  So close to 3lb.   While she is in the same bed, it is no longer controlling her temperature.  This morning they made her start doing it and she did well.. so by afternoon, Baby J got to wear her first outfit.  This is a micro preemie outfit I bought online.  We just put it on for pics (partially cause I thought that she would need to be in a sleeper).   I just wanted a picture in it to show how small she was when she gets older.

But her temperature was staying warm and so she got put in a onesie.    Too bad.  We could have probably just left on the dress...But I'm not complaining, I got a picture and my baby is finally big enough to keep warm and wear clothes.  She was wide awake when the nurse came in to see if she could wear clothes, so she was happy for the new experience as well.

 

So excited for clothes.   

In other news, the doctor came and talked to me about the brain scan from yesterday.  They will no longer be doing daily measurements of her head and will no longer be conducting weekly scans.   It looked way better.   (see picture below).   He said it was very unusual to see the kind of recovery that Baby J has had. We will still need to follow it and make sure other parts of the brain haven't suffered but it looks great!!  This is the best news ever that it was looking better.  And I know it's because everyone is praying for her- so thank you so much!

The first picture is a normal brain top, the second was Baby J's on June 20, the red is bleeds and you will also see it was very large ventricles.  The last one is the scan from July 20.  It has gone back down to a good size and although you can't see it in my picture of the doctor's drawing- there is some blood still in it, but not much.  He thinks as she grows it will work itself back to normal.  YEA!!!!!!

Please keep praying though as today the eye doctor came and baby girl does have stage one of Retinopathy of prematurity.  Basically it means the blood vessels aren't developing correctly.  They will come back next week and see if it's progressing fast or not.  It is something that can clear up on it's own, but it's also something that can make her retina's pull away from the back of her eye (so can cause blindness)

     

 So I know I'm becoming one of those 'moms' but at least it's in blog form and not individual pictures on facebook....yet.   Ha ha.  I couldn't help but share, especially with everyone who had been supporting both in prayers and other ways during this and since I started the adoption process over 4 years ago.  I'm so happy she's doing well and hope soon she will be able to come home (though I want the eyes to be better).   She technically has about 7 more weeks till her 'due date' or what we assume it is, but I wouldn't be surprised if she comes home before then - if she can put on some more weight and does well with a bottle when they start her on that.   The discharge coordinator did come in and tell me I needed to attend the parent baby care class and so I am attending that on Thursday.  It's the first time I have met her so while we still may have a while...we are moving forward!!!


 

Baby J - Day 44- Grandparent day!

Today Baby J weighed 2 lb 15 oz.   This is a BIG deal as it is now officially 1 lb heavier than birth weight.   Though she will probably lose a little bit tomorrow (it's her pattern and she had a huge increase today).    It also means she is sooooooooo close to 3 lbs.   YIPPEE

Biggest improvement is that they went to full time high flow today and she is doing pretty darn good on it.    Today Baby J had another brain scan (I'll know more about that tomorrow) and OT came in today.   Overall doing really well.   Her feeding tube got moved to her nose and now she can suck on her pacifier much better and isn't slobbering anymore since there isn't anything in her mouth.

Another big event today.  My parents came to visit them and I asked permission for them to get to hold her.  So Grandma and Grandpa got to hold baby J today for the first time.  

The nurse who came in to wrap her up (not our nurse) to give baby J to them didn't hook up the oxygen and so she went for almost an hour without it.   Oops that neither the nurse nor I noticed this huge mistake...thankfully she did very well without it.   I was told today after a couple days on it they will start to either put her on low flow or just take it away. More than likely they will try to go without.   

I also found out today that they have not been increasing the caffeine amount with her weight and she will probably be weaned off it by gestational age 34 weeks - which is next week.   Once she is off high flow oxygen they will probably start trying a bottle cause she's almost old enough now to start.  She needs to get a little bit bigger though for bottles, just because they don't want her using more energy on that and not gaining.

 I think I forgot to mention she has developed a small hernia, but they said it's no big deal and will
probably resolve itself eventually.  

Tonight apparently while I was out of the room the cover on the bed got knocked off so the nurse used a temporary blanket while she went to get another cover.   Baby J was in awe of the new thing above her.  The cover is white and the blanket was a dark purple. It was fun to watch her stare at it.  She's really starting to focus on things around her.

Baby J- Day 43 - 6 weeks old

Baby J is 6 weeks old.   She is 2 lb 13 oz, 15inches long
She can lift her head quite well and is quickly moving towards being on high flow oxygen.  She is extremely active and opinionated.

Baby J has big beautiful eyes and now spends about 20-30 mins wide awake taking in the world around her.   Yesterday we had a little bit of a scare when the nurse measured her head and thought it had jumped some in size, but the evening nurse measured the same thing it was last week, so it should be good.

Those humongous diapers are preemie size

I was told this morning when I went in that Baby J had managed to move herself to the top of her isolate bed and turn sideways, and remove her bubble CPAP as well as all her other leads. leaving only her feeding tube in.   Kind of surprising that wasn't out as well.  By the way folks, that bed is on an incline so it was very talented of her.    She is very adamant about which way her head now is turned- usually the opposite of whatever way she is turned and will change it herself if there isn't anything holding her down.  She also lets everyone know if she doesn't want to be a certain way (like on her stomach or back depending on her mood)  her favorite position is on her back all sprawled out right now.  Tomorrow that could change.  

This is how she was when I left last night.  She managed to move the bean bag and move herself all over.

They are quickly moving her through the windowing process.  Day 1- 1hr each shift; Day 2 was supposed to be 2hrs each shift, although the daytime nurse and respiratory therapist made it 2.5hrs (they even tried very hard to get the doctor to ok longer)   Originally they were told only an hour, but had convinced him earlier in the day to double it.    (the RT conveniently had lunch in the middle so it went to 2.5hrs)  Day 3- 3hrs each shift  Day 4 - today- 6hrs each shift.  She doesn't really even need the oxygen support, but that's the next step and they don't want to go to fast since she was so bad off in the beginning.  One of the doctors told me that Baby J had gone from being the sickest baby there to one of the most stable.  Yea!  

The hardest thing about being at the NICU is that when she cries, she can't just be picked up and held.    Really not even supposed to mess with her much still.  I try my best to comfort her, but wish I could pick her up.   She doesn't cry to much, but it's still hard.  Hopefully as she gets bigger and gets moved to a different bed that will change.  Course that will make it harder to leave her at the hospital.   She's become very aware of the things around her and it's fun watching her be in awe of the things going on.   She is up to 26 ml of food ever 3 hrs and does well digesting it.  I can't wait till she is big enough to try from a bottle.  I'm hoping since she's so attached to her pacifier that will help the transition.

Tomorrow is another brain scan, so please pray it comes back with even better news.  

Thank you everyone for your prayers and support.    I'm glad i've been able to pay for my room at Ronald McDonald house and travel up here and couldn't do that without support and I know everyone is praying and that is helping Baby J so much.    We are almost halfway to her due date (or rather assumed due date)   And hopefully she will start adding on the weight and she can come home sooner.