Maggie's Journal

Sunday Sep 12th - Things went very well last night.  This morning after rounds the nurse came in and told us that we can go home today!  So we wasted no time in gathering up our stuff signing all the papers and hitting the pavement!!  We arrived home around 6:30 pm and are SO ready to start our new life with Maggie at the helm! 

To our family and friends, you have made all the difference in helping get Maggie home.  Thank you all for your assistance, thoughts and prayers.   Love,  The Gould's
 

Saturday Sep 11th - Today we "room in" with Maggie.  We took training on the monitor she will be going home on as well as baby CPR. The monitor will check her breathing and heart rate constantly like the monitors here and will let us know if she is in trouble. We won't know how long she will be on the monitor until we have a couple Dr visits in Kearney.  They say a few months is normal.  We weighed her just before we moved into our room and she weighs 3lbs 11.5oz   We moved into our room between 4 and 5PM.  Things are going well so far!  We also found out this morning that if things go well tonight and if we room in again tomorrow then the Dr said he might let us go home on Monday!!  YEAH!!!  I can't believe it's almost time to go home!!!

Friday Sep 10th - Up another ounce and a half.  Taking her bottles very good.  Eating 5 to 10ml more than her "full feeding" amount.   They tell us our days are numbered.  Mom and Dad need to start getting things ready to go home next week!!  Tomorrow night we "Room In" which means we are staying in a room that is like a motel room but here in the hospital so the nurses are just outside the door.  

Thurs Sep 9th -  Gained more weight tonight.  She is up to 3lb 9oz. Didn't grow much longer, just got a bigger belly. :-)  She did really well eating throughout the night.  Not much left to do but grow!  We are really enjoying the time we get to spend bonding with her.  The Dr said today after rounds that she would probably be here another 6 days IF she keeps growing like she has been.

Wed Sep 8th -  BIG day for Maggie!  She no longer needs her feeding tube so they took that out today.  She is eating VERY well at every feeding.  And most of them she is waking herself up and yelling at us to come feed her.  YEAH!!!  She gained another ounce so that is 5 days in a row with gain!  Not much holding her back now!  They have to do a car seat test on all the babies before they send any of them home. They put them in their car seat for half an hour and monitor their heart rate and oxygen levels.  Maggie passed her test with flying colors!!  She will need to go home on a monitor that will alarm if she stops breathing or if her heart rate goes too low or high.  We have training setup for us on Saturday to learn how to troubleshoot the monitor.  Then we plan on staying in a room with Maggie Saturday night to test it all out.  No absolute word on when she gets to go home yet though.  The Dr wants her to gain a bit more weight first.  She is doing all of the other things she needs to do so....   GO Maggie GO!!!!

Tuesday Sep 7th - 4 days in a row with weight gain!!!  She is up to 3lbs 7 oz.  She is eating at every feeding but one from nursing or bottle feeding.  She has done this for 3 days in a row now!!!   Hopefully she can loose the tube that they feed her through tomorrow.  I can tell she doesn't like it.  She pulls it out every chance she gets. :-)  She is just now taking the last of her bottle for tonight.  She looks sleepy so Daddy is going to go in and tell her goodnight.

Monday Sep 6th -   Gained another 20 grams.  This new plan seems to be working!!  She ate or nursed 7 out of 8 feedings today too!  We think she is getting close!!!

Saturday 4th  and Sunday 5th -  We have weight gain again!!  She was up 50grams Saturday night and another 20 Grams Sunday night.  Puts her up to 3lbs 5oz.  She is eating good at most of her feeding times.  We changed up her eating schedule to nurse every other time during the day and give her a little bit of higher calorie milk  after she's done nursing.  It seems to be working.  She is gaining weight again!!!  Sunday night Daddy got to feed her a full feeding 35ml out of a bottle.  This was the first time he got her to take a full feeding from him!!  These are they days that give us hope and make up for the bad days.

Friday Sep 3rd - She nursed 4 full feedings today.  All 4 of them she went over the amount of time they consider a "full feeding".  Problem is that she isn't getting the extra calories that they add to the breast milk if they bottle or tube feed her.  She burns more calories nursing.  All of this adds up to she didn't gain weight again.  We might need to bottle feed her every other or every third time to help her gain weight.  Good news is she isn't loosing weight she is staying pretty steady.

Thursday Sept 2nd - She is waking up and feeding better but still not to where we need to be.  They say she'll "turn a corner" and it will just happen.  Could be today could be next week.  We won't know until it happens.

Wednesday Sept 1st - 3lbs 4oz!!!  She got another tub bath tonight.  She is still healthy and growing!  Still no definite word on when we get to go home.  It's all up to Maggie!

Tuesday Aug 31st - She's looking good.  Nursed four feedings today, two of which didn't need any additional food pumped into her.  She gets so comfy she goes to sleep in the middle of eating.  She seems to wake up around feeding time most of the time now. She's getting there! 

Monday Aug 30th -  Still gaining weight! 32 grams!!!  That puts her up to 1455 grams or 3lbs 3oz.  Growing good now!!!  They keep telling us that this could feel like the longest most frustrating time for us.  She is healthy, gaining weight, keeping her temp up but she doesn't show the desire to eat every feeding.  She needs to wake up wanting the food and nurse or bottle every feed for a couple days before she can go home.  Which they still tell us could be a couple weeks yet.  She's healthy and happy, it's all up to her now.  Eat Maggie Eat!!!

Sunday Aug 29th - Another 20 grams tonight.  She nursed 3 full feedings today which I think is a record.  She is waking up and looking for food.  Sounds like her old man!  She very rarely sets off any of her alarms anymore.  Sometimes she'll forget to breathe while she's eating but she's learning. 

Saturday Aug 28^th – 25 Gram weight gain for tonight!  She is on the right track!  More importantly she looks healthy and is acting like our feisty little girl!!!

Friday Aug 27^th – She gained another 10 grams tonight.  We feel like we are out of the woods as far as the infection goes. It’s been long enough now that the antibiotics should be fully through her system and she still looks healthy.  All in all things are good.  Right now she is 3lb 1oz and 15 Inches long!

Thursday Aug 26^th – Maggie had about a 40 gram weight gain tonight!!!  They measured her tonight too.  She is now 38cm long!!  Not much else to say for today.  She is doing good.  So we ALL are doing good!  Grow Maggie GROW!!!

Wed Aug 25^th – Maggie hasn’t gained any weight all week long.  We made a lot of changes in a short period of time that any of which could account for it.  Moving her to her bassinet, breastfeeding, and taking her off the IV fluids.  So really it’s good that she hasn’t lost a bunch of weight with all that’s happened.   Things are going well other than that.  She is in the sleep and grow stage.  She got her first tub bath tonight.  She was very calm and relaxed throughout the bath.  She looked like she really enjoyed bath time!  I wonder how long that will last? 

Tuesday Aug 24^th – Another big day for Maggie.  This morning she moved into a bassinet and has done great all day long.  She just needs to do well on all of her feedings and keep her temp up while not in the incubator.  She seems to be doing well off of the antibiotic.  Rumor is just 2 or 3 more weeks and she’ll probably get to go HOME!!!!  YEAHHHH!!!!!!!

Monday Aug 23^rd – Happy One Month Birthday to Maggie!!!  Things are going good!  Her IV needed replaced this morning but instead putting a new one in for one last dose of antibiotic they decided to skip it.  So no more IV in Maggie!!!    They are talking about weaning her into a crib over the next couple of days.  She just needs to prove that she can keep her temperature up in the incubator as they turn down the heat.  It’s currently around 85 degrees in there.  They are going to slowly move it down to room temp. And when it’s about 80.6 they will move her into a crib.  Daddy got to bottle feed her again.  20ml this time!!!  Go Maggie Go!!!

Saturday Aug 21st -  Maggie, Mommy and Daddy are still going strong.  Maggie might be burning too many calories  to gain weight at the rate that she was gaining.  They might have to make some adjustments to either her feeding schedule or her temperature control on her incubator.  She might be burning too many calories trying to keep her temperature up or learning to nurse. Other than the weight gain issue she is healthy and strong.  No changes on her feedings or anything else for today.

Friday Aug 20th -  Ladies and gentlemen.  In this corner wearing the pink pajamas, weighing in at 3 lbs. 
 Maggie Gould!!!!
That's right Maggie weighed in at 3 lbs tonight. They decided to increase her feedings to 25ml.  She had a big day today.  She got one of her feedings entirely from breastfeeding. And, Daddy got to bottle feed her for the first time!  Big day for all of us!! 

Thursday Aug 19th -  Doing great on the feedings.  She won't do any more increases until she grows some more now.  She had a pretty uneventful day today.  Feeding, sleeping and growing.  She didn't gain any weight but they measure her once a week and tonight she measured 14 in long!  She didn't even spit up on her "Thank Heaven For Little Girls" outfit.  Daddy and Mommy feel so lucky to have her in our lives!  We just look at her and can't believe she's our little girl!

Wednesday Aug 18^th – Took her off of the saline today so when she is done with the antibiotic she will no longer need her IV.  YEAH!!!!  Really caught on to the breastfeeding today, and got half of her feeding from it twice today.  She is up to 24ml.  So she is up to full feeds now. She weighs 2lbs 15oz.  Mommy, Daddy and Maggie are all doing well.

Tuesday Aug 17th - Increased her feedings to 20ml today and running them over an hour.  She was looking too cute in her outfit that daddy picked out for her.  So cute, she spit-up all over it.  It's ok though, it washed up nicely.  They think that she is getting a little reflux from the tube down her throat holding her pipe open enough for some gasses to get through.  They are going to give her some Zantac orally to help it.  Other than that she is handling her feedings well.  We both got to hold her for a while today.  Mommy has been trying breastfeeding for about a week now.  Maggie is starting to get the hang of it.   Days like this make us feel like we can see a light at the end of the tunnel.  It also makes us nervous "waiting for the other shoe to drop".  One day at a time.

Monday Aug 16 – Her feedings were increased to 17ml.  They decided to go 14 days on her antibiotic to make sure they get rid of the infection this time.  As she grows her full feed amount keeps going up.  Calculated this morning, she now has to make it to 24ml to be on full feeds. This just means that she will be chasing her full feed amount for a bit longer.  Full feed amount is when she will no longer need an IV for nutrition.  Tonight she weighed 2lbs 14oz.    Every time she squeezes my finger, I see how strong she is and it gives me hope.

Sunday Aug 15th -  Still going strong!  Her feedings were increased to 14ml today.  She got to try on her first outfit and of course it was Winnie the Pooh.  Even though it was a preemie outfit she was still “swimming” in it. That’s ok though, she’ll grow into it.  She weighed in tonight at 2lbs 13oz.  They are going to try her out on maintaining her own temperature tonight. The incubator has 2 settings.  One setting adjusts the temp biased on the baby’s temp.  The other maintains a constant air temp and the baby has to maintain her own temperature. 

Saturday Aug 14th -  They increased her feedings to 11ml today.  We are back to where we were before her little setback. Last night she weighed 2lb 11oz.  She has been gaining about an oz a day now. Full feeds for her at this weight is calculated out to be 21ml.  When she gets to full feeds and off of the antibiotic (20th) she will no longer need her IV.  She isn't having any problems breathing on her own without the high flow.  Go Maggie Go!!

Friday Aug 13th -  Maggie is 3 weeks old today.  They increased her feedings to 8ml.  And are slowly weaning her off of the high flow.  Hopefully by tonight she will be off of it entirely.  I forgot to mention, last night she weighed in at 2lb 10oz!!!  At 5:00 they took the High flow off of her.  Dan got to kangaroo with her today.

Thursday Aug 12th -  They have increased her feedings to 6ml today.  She is looking good.  So long as they keep the antibiotics in her she seems to be doing well.  We found out that the infection was the same as the one she had before.  Staph Epidermis.  They think that they didn't treat her long enough and the same infection rebounded.  So this time they will probably treat her for 10 to 14 days to make sure we get rid of it this time.  And we pray it doesn't come back. 

Wednesday Aug 11th - The antibiotic seems to have stabilized her for now.  They just need to keep it going to sterilize her system so it doesn't come back.  They are starting her on feedings again today (3ml) and we're getting back on track.   She had a good afternoon and evening.  She didn't set off any of her alarms and was awake for a long time this afternoon.  She was looking around and chewing on her pacifier.  

Tuesday Aug 10th - She had a really good night. And so far a good morning. The culture came back positive for an infection but they haven't determined what exact type it is yet.  They decided in the morning rounds to take her off of the CPAP and put her back on the High Flow.  Still no feedings until they figure out what type of infection it is.  Important thing is she is acting more healthy and her color is good.

Monday Aug 9th - We are having a bad morning.  Got a call this morning saying that they think she is sick.  She is having A LOT of Apneas and is looking very pale.  They started her on antibiotics again. Increased her IV fluid and took away her feedings.   They had to upgrade her high flow to a CPAP.  Which is a step between high flow and Ventilator.   It has larger tubes with more airflow to keep her breathing.  At this moment she is still having the apneas. It is very possible they will need to put her on a respirator.  They also determined that she is anemic and needs a transfusion.  They are starting with replacing 10 percent of her blood.  The Dr thinks that it's because they've taken so much from her that she can't keep up making her own.  They took a blood culture this morning to see if there is an infection in her blood again.  But it takes 48 to 72 hrs to get back solid results so we are playing the waiting game again.  Just after 2:00 she started doing much better.  She is having fewer apneas now and her color is starting to look better.  I hate to speak too soon but it looks like she may not need to worry about being put on a respirator at this moment. 9:00pm she was having troubles again.  She quit breathing several times and her O2 levels dropped from 99  down to 30.  They were very close to putting her on a respirator.  Around 10:30 she started doing good again.  Kept up her breathing and was good the rest of the night.

Saturday 7th/ Sunday 8th - They put her up to 11 ml on her feedings.  Her umbilical cord fell off on Saturday. She is doing so good all weekend.  They are talking bout getting her IV out sometime this week and taking her off of the high flow.  She is weighing in at 1050 grams and is looking great!

Friday Aug 6th - Maggie is 2 weeks old today.  She is doing good.  Her feedings are still at 7ml every 3hrs.  She hasn't had hardly any apnea spells. We both got to hold her and she is still gaining weight.  We're up to 980 grams.   Which is 2lbs 2.5 oz

Thursday Aug 5th - Things are looking good!  I'm kind of liking these less stressful days.  Her feedings were increased to 7 ml.  She was awake and grinning at us for a while today.  Robbi got to Kangaroo today. Maggie got the hiccups while Robbi was holding her.  It was so cute to hear those little "hic" sounds.  I'll have video of it online later.  She is looking so much better!  I just hope the trend stays that way!

Wednesday Aug 4^th – Her blood work is showing us that the infection in her blood is cleared up. They decided to increase her feedings to 5ml every 3 hrs.  She will need to be up to 20ml every 3 hrs to be able to not need an IV line. But it might be a while before her system can handle that.  She is acting more like herself now.  Squirming around and letting us know when she’s not happy.  She was awake and alert for quite a while just before supper time.  I swear I could see her smile a time or two.  Robbi got to give her a partial sponge bath and change her diaper.  She was also very awake and alert when she got to Kangaroo with daddy.  She had a real good day today.

Tuesday Aug 3rd –  We both got to kangaroo with her today.  It’s been three days since dad’s gotten to hold her. And he’s sure missed it! Not much to report today.  So I guess it’s “no news is good news” for now.  She seems to be growing good and taking her feedings good.  They didn’t change her feedings today, perhaps tomorrow. 

Monday Aug 2nd - She is doing real good on her breathing and heart rate.  We found out that the infection in her blood is not MRSA but Staph Epidermis.  As far as we know she does still have the MRSA bacteria in her eye but not in her blood.  Staph Epidermis is one of the most common staph infections that is on most people's skin.  So this means that she got it from the PICC line and either someone didn't wash good that handled it or they didn't wash her good when they put it in.  But they do know that the antibiotic that they have been giving her works on this bacteria.   They take blood every day and test it for the infection.  The culture they took yesterday is not showing any bacteria in her blood yet so hopefully the antibiotics are working.  It does take 3 days to culture but they say if it's really bad it will show up sooner. She is still being tube fed and they upped her feedings again to 3cc's (ml) every 3 hrs.  She is acting more healthy, looking around and being more active than she had been.  Her weight is up to 980grams (2Lbs 3oz).  We got to give her a sponge bath for the first time and Dad got to help with her feeding. 

Sunday Aug 1st -  She didn't have any significant apneas or bradeys all night or day today!!   Her billirubin numbers are down to 4.3 so we took the Jaundice lights off of her again :-)  She was awake and looking around for quite a while this afternoon.  The bad news is that we heard that her blood work is producing a bacteria so she does have an infection.  They do not know yet if it is the MRSA bacteria or a different one.  The Dr is pretty sure it came from the PICC line.  The plan is to start upping her feedings gradually so she doesn't need the PICC line anymore for nutrition.  So today they upped it to 3cc's every 6 hrs and tomorrow they are supposed to go to 3cc's every 3 hrs.  I hope this works.  They fed Maggie thru the top of a bottle for the first time today.  She drank all 3 cc's thru it without any problems.  They plan on leaving her on this antibiotic for a week.  She will probably be in isolation for a month or better.  She has to come back with 3 negative MRSA cultures before they will take her out and they won't do any until she is off of the antibiotics.  Then they will do one a week and they take 3 days to culture.  Other than that she is doing pretty good.  She is showing us how strong she is at every chance she gets.

Saturday July 31st - Had a real rough and hectic morning. We got a call at 5:30 in the morning telling us that the PICC line wasn't looking good so they had to take it out again. Her arm is looking red all along where the line goes and they think it could be infected. So they started her on an antibiotic. Then while we are talking to the nurse about this another nurse came up to us and told us that a culture they took from Maggie's eye three days ago came back positive for MRSA.
( http://www.link.med.ed.ac.uk/RIDU/Mrsa.htm ) Which is a staph bacteria that is resistant to one of the most common antibiotics they use. Since they knew there was a boy here that also tested positive for MRSA they put her on an antibiotic that works against it (Vancomycin). So Maggie had to go into isolation and we do not know yet if this bacteria is in her blood stream or if it's a different type. And the blood work isn't supposed to be back until Monday or Tuesday. So she is in an isolated room where we have to wear a protective gown and rubber gloves to visit her. Her bilirubin numbers are up again so they are putting her under the lights for another 24 hrs. They told us you have your good days and bad. I just didn't realize the bad days were quite this bad. She was having quite a few Apneas and Bradys this morning and started talking about having to do a more powerful air tube up her nose. Once I rolled her over on her tummy she practically stopped having them altogether. Hope she can keep this up!

Friday July 30th - Daddy got his turn at a kangaroo session today. Her Jaundice levels were up from yesterday but they didn't put the lights back on her yet. It's so nice to see her eyes when she wakes up instead of having them hidden behind a mask. We just need to enjoy it while it lasts. She has gotten used to the air flow tube up her nose and slept most of the day. We counted up her apnea and bradychardia occurrences for yesterday and it added up to 18 times she stopped breathing and/or her heart rate went down. Today she had half as many so she is doing better with the air flow tube's help. Her weight as of 8:00pm tonight is 2lbs and 1oz. She is finally above her birth weight!!! Maggie is one week old as of 12:07 pm today.

Thursday July 29th - Started the day today with removing her bilirubin lights. Her Jaundice levels had dropped to the point where she could be without them entirely for now. There is a strong possibility that they will be needed again. Robbi got to do another Kangaroo session. We didn't know all morning when the new PICC line would be here. She didn't have any of the IV's in that she had when we left her last night. She had a new one in her foot. This afternoon around 4 they put in the new PICC line and it seems to be working. I just pray that it stays that way! We went to see her around 8:00pm and she quit breathing on us again. It seemed to take forever for her to snap out of it. They put an air flow tube up her nose to kind of force air in and keep her breathing. She was very fussy after that and it took her a while to get used to it being up her nose. Breaks my heart to see those little tears.

Wed July 28th - Daddy got to do Kangaroo care today, and he loved every second of it! They went through it seems like 3 IV's over the course of the day. We really need to get a new PICC line in and working soon. They are going to try a different type or brand but it won't be here until tomorrow. Otherwise she is doing pretty good. Those time where she stops breathing and her heart stops are about the scariest things I've ever had to endure. They say that it is pretty normal for preemies to do this. Doesn't make it any less scary for me though.

Tuesday July 27th - The PICC line had a malfunction in the night so they had to take it out and put a regular IV in her. Mommy started Kangaroo care. It's what they call the skin to skin therapy for premature babies. You lay the baby against your skin for about an hour. Does wonders for both Mom and Baby. She is still doing good, her platelets seem to be stabilizing and the Jaundice is starting to go down. Her blood sugar is going up and down a lot but they are working hard to regulate it. Once she is on milk longer she will be doing better. The apnea is still occurring regularly but not enough per day to warrant any more special care yet. They started an IV in her head today since the one in her arm was looking so puffy.
 

Monday July 26th - Maggie got a feeding tube so they can start giving her breast milk. They are starting slowly giving her 2cc's (which is less than half a teaspoon) every six hours. Her blood sugar is kind of high so they are starting her on insulin. Platelets are looking better but still cause for some concern. She is also having trouble with her heart rate dropping and she forgets to breath once in a while. They call this sleep apnea. They started her on caffeine to help stimulate her brain cells to keep her breathing. Her bilirubin levels are finally going the right way. DOWN. She is very squirmy. It's hard to get comfortable on the light pad she has to lay on to help get rid of the jaundice. She got the IV in her right hand out so she can FINALLY put that hand in her mouth. She's been trying for a while.

Sunday July 25th - They put a PICC IV in her in the middle of the night. It is an IV that goes up the arm or leg all the way to the larger veins around the heart. It is used to provide nourishment and medicine at a higher rate that normal IV's cant handle. It's also supposed to last a month where a standard one last only a day or so in her.  After much deliberation we decided that she looked like a Maggie. So we named her Margaret Reita Gould. Dan got to hold her for the first time for about half an hour. Bilirubin levels are still on the climb so they added more lights to help. Maggie's platelets are dropping so they have to keep a close eye on it.
 

Saturday July 24th - Baby needed just a little bit of oxygen to get her through the night. Robbi was the first to hold her and sat with her for about half an hour. Baby's "bilirubin" (Jaundice) levels were high enough to warrant putting her under special lights. Which means she also had to wear a mask to protect her eyes from the light. She is so cute blowing bubbles and trying to get her hand in her mouth. Unfortunately she only wants the hand that has the IV in it currently.

Friday July 23rd - Baby was born at 12:07PM 2 lbs 1/2 oz 12 in long She came out yelling and breathing on her own. It was love at first sight for Daddy and Mommy.

Email sent out announcing the birth of our Baby - on Saturday July 24th at 9:38 am