Tuesday, December 29, 2009

DOING WELL

Emma continues to do very well. We are bottle feeding 3 feedings a day and I am hoping they will increase it to 4 as of today. She is 4lb 8oz and 16 1/2 inches long!!! She continues to do very well and just keeps growing on us!!!

Sunday, December 27, 2009

Yea Emma!!!
















Whew!!!! What a wirlwind of activity these alst few days have been!!! Sorry it has taken so long to post anything... mom and dad have been busy!!! Emma continues to grow and do well!!! She had her eye exam today which didn't show anything new... she remains on the high flow oxygen but they decreased it to 2 liters. She now weighs 4lb 7 oz. She continues to take the bottle pretty well but hasn't really breastfed well in the last few days... gotta work on that. She's doing fabulous!!!!

Friday, December 25, 2009

MERRY CHRISTMAS!!!!

8 And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. 9 An angel of the LORD appeared to them, and the glory of the LORD shown around them, and they were terrified. 10 But the angel said to them, " Do not be afraid. I bring you good news of great joy that will be for all the people. 11 Today in the town of David a Saviour has been born to you; He is CHRIST the LORD. 12 This will be a sign to you: you will find a baby wrapped in cloths and lying in a manger."13 Suddenly a great company of the heavenly hosts appeared with the angel, praising GOD and saying, "Glory to GOD in the highest and on earth peace to men on whom HIS favor rests."
Luke 2:8-14
Hope you have a Merry Christmas!!!

Tuesday, December 22, 2009

She's Doing So Well


Emma continues to do well. Drank all of here bottle again today, no real problems. Weight was 4lb 2oz- we lost a few ounces because they are giving her a diuretic... She has been very swollen for a few days now and they were trying to let her little system get rid of all the fluid but she just couldn't keep up. She continues to grow a little bit everyday!!!

Monday, December 21, 2009

What a big girl!!!

Emma continues to grow everyday. She is now at 4lb 1oz, up to 32cc every 3 hours on her feedings and the last 2 times I have fed her she has taken the whole bottle!!! It took her some time to learn what to do but she has the hang of it now!!!! She has such a beautiful personality already and I can't wait for everyone to meet her!!!

Saturday, December 19, 2009

And HE does it again..

The results from Emma's MRI scan came back yesterday and were negative!!! There is no damage we can see on the scan!!! Such a HUGE praise and a weight lifted from our shoulders!! She continues to do very well. Still on IV antibiotics, feedings to 30cc/hr and still breastfeeding once a day and bottle feeding once a day... Daddy even gave her a bottle last night!!!! Weight is 3lb 15 oz. She's doing great!!!

Thursday, December 17, 2009

Chi-Chi-Chi-Chia!!!!







Emma is growing like mad!!! She is now 3lb 13oz. Yesterday was such a neat day for mom, I was able to breastfeed her for the first time. She did so amazingly well!!! Last night she was able to wear clothes for the first time and today when we got here she is offically in an open crib!!!! Such a big girl!!! They are gonna do an MRI this evening to see if there is any residual damage from the meningitis, we will have results in the am.

video

Wednesday, December 16, 2009

WOW!!!

Emma is doing sooooo well!!! Her weight is now 3lb 11oz!!! CHUBBS! She really just had a chill day today. Nothing really new. They are saying she could be in an open crib instead of the incubator in a week or so! She continues to get so big!

Tuesday, December 15, 2009

Such Blessings!!!

Emma had a very productive day yesterday. She had a cat scan of her head to check for any damage from her meningitis which came back negative. She had a repeat spinal tap which showed improvement and a much lower bacteria and wbc count. She had her weekly eye exam which showed stage 1 damage which from what I have been told just about all babies born this early have this. She weighs 3lb 8oz, 15 1/3"long. She hasn't had any episodes all day or night!!! She is really doing fabulous!!!!

Monday, December 14, 2009

Wonderful Progress!!

http://www.youtube.com/watch?v=wb4YM7fo660

Emma continues to do incredibly well. They were able to wean her down to a nasal cannula on her oxygen today. They are continuing her antibiotics but other than that nothing is really going in her iv. She is back to her full feedings and tolerating them well... she weighs a whopping 3lb 7oz!!!! Plan for tomorrow... CT scan of her brain to check for any abnormalities and her weekly eye exam. Praise GOD!!!

P.S. (This is from Robert) I finally figured out how to load a video on here. The video files are too large to upload on here so I had to load them using Youtube. You can click on the link at the top of this post to view a little video of Emma after she was taken off the resipirator on Saturday. You can also click on the HD button to view the video in HD. I am still learning how to use this new camera so better videos to come!!! Sorry for the delay everybody.....enjoy.

Saturday, December 12, 2009

Ok, it's dad's turn to blog! Emma has made such an improvement!! As of this morning, she had the EEG scan done of her head at approximately 11:30 a.m. The EEG scans the brain for seizures and possible neurological damage to the brain cells caused by the Meningitis. The test results came back negative, which is awesome!!!!! It has been a true testament to God's amazing power that Emma has made such an amazing recovery, in record time no less.

This does not mean that we are out of the woods by any means, but it definitely means that Emma is well on her way to full recovery. As of 3:30 p.m., Emma was taken off the respirator and was placed on a C-Pap machine. This machine takes place of the respirator, and instead of providing breaths for Emma, it alows Emma to breath on her own. It just provided gentle constant pressure so she has plenty of available oxygen and a little reminder to breath on her own. As of this post she is responding really well. So well in fact that mom was able to hold her again, hence my post!!! If she keeps this up, she will hopefully be off the machine and back to the nasal canula by tomorrow.....hopefully!

We are both so happy and so very thankful for all the prayers that were said and have been said for Emma's speedy recovery. Thank you from the bottom of our hearts for everything everybody has done to help Emma progress as she has.

I posted a little video to show the area where we have been spending all of our time, enjoy!!! More good new to come, stay tuned!

Friday, December 11, 2009

Not to be a Downer but...

We have learned alot today about Emma's infection. She has a staph infection, the group b strep infection, pneumonia from the group b, and bacterial meningitis. We had a new picc line placed, a central iv line that will last a much longer time. They did a head ultrasound looking for any swelling from the meningitis. They consulted an infectious disease doc who spoke with us at legnth about our course of action. 21 days of antibiotics and a wait and see attitude. We will have an EEG done to check the brains electrical pathways for damage. Eventually we will have an MRI of the brain... when she is more stable. She is very sick still and has a long road ahead... we covet your prayers.

Thursday, December 10, 2009

Please Continue to Pray...

So Emma officially has group B strep which is actually worse than the doctor was thinking it was gonna be but it is good that we know what it is, it's easier to treat. They decided to do a lumbar puncture today to see if it is in the spinal fluid which would not be so good and low and behold it is... We are looking at a 21 day course of antibiotics. She continues to be on the breathing machine, still to sick to breath on her own. They restarted her feedings. She still weighs 3lb 1oz. She has been more active and alert today which is very good!!! Please Please Please continue to pray for her! We have an even longer road ahead than we thought.

Wednesday, December 9, 2009

Some Setbacks...


So we have had a very rough last 2 days... sorry about not posting anything but it's been hectic. Emma had a tough day on Tuesday. She was having her episodes all day, pretty much constant. She would be OK for a few minutes at a time only. She normally has 4-5 a day, she was having 4-5 an hour... She was not being her normal self. I noticed a small area behind her right ear that was hard and red and raised and hot... all signs of inflammation. Showed the nurse and the Doc. They started the workup to see if she has an infection and it looks like she does. We ended up having to go back on the breathing machine. She is still so small and her body can only focus on one thing at a time... if it is fighting an infection she can't focus on breathing too!!! So the issue was not that she wasn't getting enough oxygen, it was that she was not trying to breath at all!

So the news today is that it is an infected and inflamed salivary gland, who knew that was an option!!! She remains on the breathing machine, she is not getting her food in her tube but in her iv, she will be on the antibiotics for 10 days. She continues to fight this infection and has not been her usual feisty self!! On a semi- positive note she is now 3lb 1oz but i think she may loose some weight with all this going on. Please pray the infection will go away and we can get off the breathing machine as soon as possible!

Monday, December 7, 2009

Beautiful Eyes!




Emma's sailing along doing amazing!!! She had her second eye exam today and again they found nothing of concern!!! Praise JESUS!!! They will continue to do these weekly probably until she is able to go home. She is at 2lb 14oz- come on 3lbs!!! Otherwise she is great!

Sunday, December 6, 2009

Keep on keepin' on!!!

Emma continues to grow and is still gaining about an ounce a day, up to 2lb 13oz as of last night. She continues to have her "episodes", they gave her an extra dose of caffeine for this today and she was much better. She's just getting bigger!!!!

Friday, December 4, 2009

Like Grass...

Emma continues to grow like grass... seems slow but it's passing faster than you might think. 2lb11oz as of last night and continuing to show her little personality. She is doing great, thanks to all your prayers and Jesus healing touch!!!

Thursday, December 3, 2009

Grow Baby Grow!!!

Everyday I see my beautiful baby girl she looks soo much bigger, every minute. It's like I close my eyes and she has grown more!!! She remains so small but soooo much bigger than our first days together, 2lb 10oz tonight!!! Feedings increased to 20cc/3hrs. She is doing amazing!!!

Monday, November 30, 2009

YOU GO GIRL!!!!

Emma is now 2lb 8oz and continues to grow!!! Her first eye exam was today with good news, nothing there to really report which is great!!! Please pray for her momma who is now back to work and trying to juggle everything!!! Thank you Lord for continued answered prayers!!!

Sunday, November 29, 2009

Keeps on Growing




Emma's doing great still. They increased her feedings to 19cc/3hrs. Otherwise nothing new to report. She's doing great!!!

Saturday, November 28, 2009

YEAH!!!







YEAH Emma!!! She skipped right over 2lb5oz and is as of last night 2lb6oz!!! We played dress up Thursday night and the little blue outfit didn't even snap over her big belly!!! Too cute!!

Thursday, November 26, 2009

HAPPY THANKSGIVING!!!!




Emma's first Thanksgiving!!!! YEA!!! We are soooo thankful for her, for all the prayers and love that has been sent her way!!! She is such a beautiful blessing to us, such an angel from heaven and such a joy already to our lives and she isn't even home yet!!! Thank you JESUS!!!

Wednesday, November 25, 2009

Chillin


Nothing new to report today. Emma is chilling today. She had a crying spell so I wrapped her up like a taco and she loved it!!! Otherwise... no news is good news...

Tuesday, November 24, 2009

Crabby Cakes

Today Emma decided to be a little crabby, not really sure why. Just more crying than usual, and being fussy. She's up to 2lb3oz on her weight and up to 17cc/3hours on her feedings. Otherwise no new changes.

BREAKING NEWS...THIS JUST IN!!!

Attention all... Daddy has offically changed his first Emma girl diaper!!! He did sooo good!!! I'm so very proud of him! Shes up to 2lb 2oz tonight. Otherwise nothing new!!
video

Monday, November 23, 2009

You Go Girl!!!

Emma continues to grow day by day! They increased her oxygen to 3 1/2 liters today in hopes of helping her with her "episodes". They also started a new medication to help with this. We shall see... Otherwise nothing new...

Growing Baby Girl!!!

Well today She is 2lb 1oz!!! They measure the length every Sunday and she is 14 and 1/4 inches long!!! She has her Momma's long legs so it's expected :) Otherwise still remains great, growing every day!!!!

Saturday, November 21, 2009

2 Pounds of Cuteness!!!











Emma is officially 2lbs 0oz as of last nights weight!!!! I swear its all in her cheeks!! Sorry about all the pics, I'm just a very proud mommy!!! Last night was bath night again and its the most active we see her, hence all the bath time pics... repeat head ultrasound at 1 month is negative(yea!!), still continues to have her "episodes" but the staff says she is just acting her age. Looking very good!!!

Friday, November 20, 2009

Nothing new!!!

Emma continues to grow and do great!!! Nothing new to report other than they increased her feedings to 16cc/3hours, shes tolerating it well! No real changes, weighs 1lb 15oz still- come on 2lbs!!!

Another Good day

Emma continues to do very well. She is now 1lb 15oz and we are hoping for 2lbs by the weekend!!! She continues to grow!!! They increased her oxygen to 3liters on the nasal cannula but she is doing so much better on that! She had been having "episodes" where her oxygen levels would drop and then her heart rate would drop pretty low but with the increased oxygen she isn't having these nearly as often. They staff says this is a very normal thing for babies as small as Emma- they outgrow it once they get closer to their due date. She is wonderful!!!!

Wednesday, November 18, 2009

Bath Night!!!







Emmas first bath with Mommy and Daddy there. She had them last week but we didn't know about it!!! SOOO... She did great!! News from yesterday... increasing her calories, shes up to 1lb 14 oz!!! YEA!!! Doing good. Looks like she might have curly hair!! Thank you for all your prayers!!! Please continue!!! We aren't finished growing yet!!!

Monday, November 16, 2009

Growing Like Grass







Emmas still doing great, just trying to grow!!! Here are a few pics from today!!! Nothing new to report today. They had to restart an IV on her to give her a blood transfusion today, over the weekend they took alot of blood for lab work. Otherwise, just chilling out!

Sunday, November 15, 2009

Nothin New

Emma is still doing well, nothing new to report. We continue to be able to hold her daily. She now weighs 1lb 12 oz, they increased her feedings to 14.5cc every 3 hours, shes tolerating this well. She continues to be just on the nasal cannula for oxygen and at a very low dose- 2 liters. We continue to watch her grow!!!!

Friday, November 13, 2009

Now We Grow







So Emma is pretty much in chill mode for the next few weeks we are hoping. She just needs to grow bigger!!! Nothing new to report, daddy got to hold her for the first time last night. He did much better than I had thought, even with her little cries!!

Thursday, November 12, 2009

Another good day!

Emma continues to do great. Nothing really new today, increased her feedings to 12cc every 3 hours. Was able to hold her for 3 hours straight today which was great!!! She's just hanging out there!!!

Wednesday, November 11, 2009

YEA EMMA!!!

Emma is doing fabulous today again!!! They discontinued all her IV's, all antibiotics. They took off the dressing from her last chest tube. Increasing her feedings, increasing the calories they fortify the milk with- up to 11cc every 3 hours. We did kangaroo care again twice today for again a total of 4 1/2 hours! She did great! The Doctor came by and said she is out of the woods, our biggest focus will be nutrition and getting her bigger!!!! Please also pray against any infection since she is still in the hospital.
"7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort...9 Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on GOD, who raises the dead. 10 HE has delivered us from such a deadly peril, and he will deliver us. On HIM we have set our hope that HE will continue to deliver us, 11 as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
2 Cor. 1:7,9-11

Tuesday, November 10, 2009

HOORAY FOR KANGAROO CARE!!!







YEA!!! 19 days old and finally able to be held for the very first time!!! Emma and Mommy did amazing together!!!! What a team we made today! They told me to be prepared if maybe Emma would not be able to be held for a long period of time, they said some babies don't do well the first time around, they said don't take it personal, they said her heart rate could drop, they said her oxygen levels could drop. They were wrong! Emma did absolutely amazing, SHE LOVED IT!!! And I LOVED IT!!! We were able to do 2hours and 15 minutes this morning and then again this afternoon for a total of 4 and a half hours of mommy and me time today!!! They removed her arterial line, discontinued some of her IV fluids, increased her feedings to 9cc every 3 hours. PRAISE JESUS SHE IS DOING AMAZINGLY WELL!!!



Monday, November 9, 2009

THANK YOU JESUS!!!!




Well by far the best day for our Angel Baby yet!!! The breathing tube is out- she is breathing on her own and do great!!! The chest tube is out!!! She is back on breast milk only- tolerating it well!!! She is back to 1lb 11oz.
Psalm 30
1I will exhalt you , O Lord,
for you lifted me from the depths
and did not let my enemies gloat over me.
2O Lord my GOD, I called to you for help
and YOU HEALED ME.
3O Lord, you brought me up from the grave,
you spared me from going down to the pit.
4Sing to the Lord, you saints of His;
praise HIS HOLY NAME.
5For His anger lasts only a moment,
but His favor lasts a lifetime;
weeping may remain for a night,
but rejoicing comes in the morning.
11YOU turned my wailing into dancing;
you removed my scakcloth and clothed me in joy,
12that my heart may sing to you and not be silent.
Oh LORD my GOD, I WILL GIVE YOU THANKS FOREVER.

Sunday, November 8, 2009

Its A Good Day

Emma had a good day today. She was able to get off of the panting ventilator this afternoon and is now back on the regular ventilator YEA!!!... again. They left her chest tube in place to just monitor and make sure that everything stays good for her left lung (which was MY idea, fortunately the Doc thought of it too!) She is on 27% o2 which is good. Still doing good on her feedings, still resting well.

Saturday, November 7, 2009

Chill Day 101


Sedated- check. Worn out and exhausted from fighting sleep- check. Finally able to rest for the day and recuperate- check. Emma's doing good today with no real changes. No more blood in her poo (YEA), back on her feedings. No changes to the breathing machine. Started her on vitamin A shots to try to help with those darn lungs, otherwise relaxin'.

Friday, November 6, 2009

Oh Poo!!!

Today was an ok day for Emma. No real changes on the breathing front. She had a poop today with blood in it which is very concerning to the Doc- they put a hold on her feedings for tonight, got an xray of her stomach which looked ok- the big concern is a type of bad bacteria in her gut. So they increased her IV nutrition for the night to make up for the no milk thing. Otherwise she is doing well, nothing new to report. Thanks to all for your prayers, comments and concerns!!! I love to read what everyone says to us and really appreciate the encouraging words!!!

Thursday, November 5, 2009

And Today Makes 4



So today we bought our 4th chest tube for baby girl! She was having a rough morning, unable to to keep her oxygen levels where they should be. Finally got a chest xray early this afternoon and she again had a collapsed lung so we have a new chest tube, back to the panting ventilator, back on sedation... Rob and I were there for the procedure and we were able to see the results immediately so it is unfortunately a necessary evil for her to have this chest tube... Please continue to pray for this poor left lung to heal up. Even after all that she was able to open her eyes and say hello to everyone!!!

Wednesday, November 4, 2009

YEA!!!!!

Today was a good day!!! Emma's morning chest x ray showed the same ugly left lung but the doctor wants to forge ahead and she is doing good!!! They pulled out her last chest tube this am- it wasn't in proper place anyway, so she is now chest tube free!!! They placed her back onto the regular breathing machine instead of the easier on the lungs panting machine and she is loving it!! She cries more now since she is not as sedated and the first time I cried too- I can't do anything for her!!! But this is all good signs!!! She is up to 8cc/ 3 hours on her feedings, doing well. Please continue your prayers for her left lung!!!!

Tuesday, November 3, 2009

Looking Better...

Emma is looking a little better today. Her morning chest x ray was about the same but this afternoons showed some improvement!!! The doctor says we will see what tomorrow morning shows us. For today they were able to go back on some of the breathing machine settings very slowly. She pulled the breathing tube out again last night because she is soooo active- they put it back in and everything is ok. They placed a line today so they can draw her labs and not have to poke her everytime- yea! Please continue to pray for her morning xray and her left lung to heal and be clear of all air pockets!!!! She weighs 1lb 11oz today- feeds up to 7cc every 3 hours, tolerating well.

Monday, November 2, 2009

PLEASE PRAY

Well we got some news today that Emma's left lung is still not really doing well. It seemed she had responded nicely to the steroids they were giving her but now it looks like it is no longer working. The lung has not re-collapsed, a huge praise!!, but it does appear to have some air filled pockets all over. This is not a good thing because if these pockets are already filled wtih air then this means no gas exchange- no oxygen going in and no carbon dioxide coming out. Dr Ortiz spoke with me about it today and said they are going to try a stronger steroid- kind of a last ditch effort for the lung. I asked what is next if this doesn't work- he said to get on our knees and pray- which I know many of you are already doing- as am I. He said we can stay intubated and on the breathing machine and see how she does... please pray for a miracle that when they see her chest xray in the am these air filled pockets will be gone!!!!!!
7"Ask and it will be given to you,
Seek and you will find,
Knock and the door will be open to you.
8For everyone who asks receives,
He who seeks finds,
and to him who knocks the door will be opened.
9Which of you, if his son asks for bread will give him a stone?
10Or if he asks for a fish will give him a snake?
11IF YOU, then, though you are evil, know how to give GOOD GIFTS to your children,
HOW MUCH MORE will your FATHER in heaven give good gifts to those who ask HIM!"
Matt. 7:7-11
Many of you don't know this, but this passage was the passage for me when I was asking GOD for a child. And now it is my passage for my child. Please keep Emma in your prayers.

Sunday, November 1, 2009

And the Good News Keeps Comming!!!

Yet another good day for Emma Nichole!!! Even with the diuretic they gave her yesterday, her weight stayed at 1lb 10oz!! They clamped off one of the chest tubes- the smaller one, and she did so well they removed it earlier this morning and has been doing great all day without it. Only one more to go and the nurse says maybe it will come out tomorrow... please pray...
She got some more blood today but the good news is the dopamine which is to keep her blood pressure where it needs to be is now off and has been since 0100 last night! Yea!!! This afternoon they had an issue with her 02 levels being very low but after another chest xray it wasn't her left lung giving her problems but the breathing tube had become dislodged. They pulled it out and replaced in the right spot and she is doing great. They continue to increase her feedings- she is up to 6cc every 3 hours and tolerating wonderfully.
As a side note- for the last 3 days when we show up her o2 sats are a bit on the low side. All Rob has to do is go get a cup of coffee and she perks back up!!! Every time... What am I gonna do when he goes back to work? LOL Please keep our daughter in your prayers- HE IS LISTENING!!!

Saturday, October 31, 2009

Happy Halloween!!!




Again it is a good day for Emma. She is down to 2mcg on the Dopamine- the blood pressure medication. She is still tolerating her feedings well still. Her weight today is 1lb 10oz but Dr Ortiz says alot of it is water weight and so he is going to give her a diuretic to help pee some of it off. He says maybe tomorrow we can clamp off one of the chest tubes and see how she would do- if she does well they will remove it!!!! She had another head ultrasound and we are still negative for any bleeding!!! Otherwise still hanging out, still sedated. Her first Halloween pictures!!! Sorry- no costumes are small enough for her:)

Friday, October 30, 2009

Hooray for Good Days!!!











Sorry to have missed yesterday. I had good intentions to do this daily but it has proven to be hard to do. Emma had another good day yesterday. Still tweaking the ventilator. Otherwise a good day. Today however has been even better!!! They decreased the humidity in the incubator to 75%- down from 90%. They stopped the bilirubin light- this means her liver is kicking in well. They have increased her feedings to 4cc every 3 hours and she is doing excellent with it!!! She had a poop today!!! Yea poop!!! Her chest x rays have been looking great, no more collapsed lung!!! I was able to lube her up in her lotion today and changed her diaper! But the best part of the day... she is beginning to open her eyes. Beautiful big brown eyes, only about half way so far but hopefully in the next few days they will be fully opened! She weighs 1lb 9 oz today!!! GO EMMA GO!!! THANK YOU JESUS FOR THE GOOD DAYS!!!!

Wednesday, October 28, 2009

Just Chillin'

Today has been a decent day for Emma. There has been lots of "tweaking" of the breathing machine to try to find the best settings for her little lungs. The issue is that she is not blowing off her co2 and in order to do that they have to increase the pressures of the machine. When you increase the pressures, you increase the risk of collapsing her weak left lung. So we are walking a tight line here of what is best for her. They started her on steroids this evening to try to help with the lung function and we have had good success. She is still sedated with pain meds and a sedative as needed to keep her calm , resting and recuperating. She has been tolerating her feedings well (yea!) and a repeat head ultrasound this am still shows no bleeding in her brain (double yea!!). I also got to change her diaper last night for the first time!!!! So exciting!

Tuesday, October 27, 2009

Another day, another chest tube!!

SO this am I received a call from Emmas doc that the new chest tube in place was just not doing enough to keep her left lung inflated. They had to now place a larger, second chest tube to basically help the first one. All of this is not her fault! Her lungs are immature yes but all of this damage was done on Saturday with her surgery and now we are trying to correct mans mishaps!!! We are stilll in the rest a few days mode and so still sedated and on minimal stimulation- only touched if absolutely neccessary. I woke up this am with a song stuck in my head and the chorus goes like this:
the voice of truth, tells me a different story
the voice of truth says do not be afraid
the voice of truth says "this is for MY glory"
I WILL CHOOSE to listen AND believe- the voice of truth!!
So this is just to get us up to date on the last 5 days of Emma's life. Born on October 22, 2009 she was immediately intubated and assisted with her breathing. Lungs are way too immature to do that for her yet!!! They warned us of the "honeymoon" phase were all looks wonderful for the first 24-48 hours but I didn't really listen. Her first day of life- Friday, was good. With the breathing tube still in place but basically on room air, no bleeding issues, no heart murmurs heard.
Day 2- Again things were going well for her. They had tried in the early morning to see how she would tolerate a CPAP trial on the vent- a very positive sign. But she never fully recovered from this. They seemed to be chasing her oxygen all day. An echo cardiogram showed a PDA- very common for kiddos Emma's size and age. As long as it wasn't causing any breathing problems we were good. I was discharged from the hospital that evening. She received her first blood transfusion because they draw so much for lab work every few hours.
As I pulled into the driveway of my house, I received a call that Emma's PDA was severe and causing problems for her breathing, she would need surgery to repair it... tonight...now if I could please come back to sign consent forms . In a fog, Rob and I headed to the hospital I had just left 30 minutes ago. Paperwork signed, CVOR team at the bedside with the surgeon, anesthesiologist, techs and nurses Emma had a PDA ligation done. We were told it was a success... "great" results. The follow up CXR showed the clip was in good place but her entire left lung had collapsed. Apparently they had caused some lung tissue trauma upon moving her lung out of the way to get to her heart. Basically her lung was now leaking air into her pleural space in her ribcage area. She needed a chest tube in order to re-inflate her lung and relieve the building pressure. This was done emergent at the bedside. Once done, she seemed to be doing better. Oxygen was better and able to be weaned down slowly... it was all better.
Day 3- In the am of day 3 I received a phone call from one of Emma's docs that they had to place her on a different ventilator. The standard one was too harsh for her injured lung and so they placed her on a specialized machine. It basically "pants" for her 600 times a minute. So no deep breaths but a ton of little panting breaths, similar to how a dog pants when they are trying to cool off. This is to decrease any additional damage and let that left lung rest and recover. They had to start her on dopamine to keep her blood pressure up- but only because they were giving her versed and fentanyl to keep her sedated. It was hard for Rob and I because a rest day really means a no progress day and we had gotten used to hearing positive reports every time... not just "oh she's the same". But no news is good news!!!
Day 4- In the AM she looked good. Received a call in the evening that her chest tube had apparently clogged up and was no longer working, causing the pressure to again collapse her left lung. They placed a second chest tube and then removed the first one. Another rough night and now back to square one for the rest and relaxation mode we have been in.
And so that's up to date to today, which will be a separate post!!! Please to all who may read this or may stumble upon our little story, PLEASE continue to pray for our little baby girl!!! She has such a long road ahead of her, so many obstacles to overcome and we are only just beginning...