This is the story of a little girl that came into this world way ahead of schedule. Now fighting day by day until she can be home with her family. This is Emmie's story. From 23 weeks old on...
Thursday, August 31, 2006
Aug 31st - Thursday Morning Blog
Blog Night. This is the first night in a while I have found the time to blog. Things are pretty busy at home. I have finished the first module for my certification updates and now trying to make time to study for my firstcert test. Z girl is getting ready to start 1st grade. She had a welcome back to school event Tuesday night that the whole family went to. Lots of fun with food and things for the kids to do.
Tuesday night the nurse was getting ready to work with Emmie-Rose. The nurse was looking right at her. Emmie-Rose reached up, grabbed her breathing tube and turned her head to the side at the same time, thus making her breathing tube pop out. Look what I can do! Weeeeeeeeeeee!
The nurses tried to see if she would breathe on her own for a bit but she was not interested. She just smiled at the nurses looking around all wide eyed and cute. Mommy and Daddy had a talk with her Wednesday.
Emmie-Rose’s roommate Ava was born at 25 weeks.These two girls are ruling the NICU now. You would think they were separated at birth somehow. For the longest time they were across the room from one another and drove the nurses ragged running back and fourth between them (Too funny)
The nurses tried to outsmart the Desat Divas and put their beds right next to one another so they would not have run back and fourth across the room. HA!
The plan now is: while one of them is being attended to, the other will set off her alarms.They put on some show. Stephanie and Jen sit there and laugh as the girls make the nurses run back and fourth after they set off their oxygen saturation monitors. (What goes around comes around nurses?) When the Divas have something on their mind, they let the nurses know! Tooo Funny. The hospital has a scrapbook day where parents of NICU babies can come and get a free creative memories book and arrange their pictures with all the stickers, cutting and cropping tools, etc. It’s been pretty cool and Stephanie has been getting into it.
I am looking forward to the holiday weekend. I have a ton of new pics I will be posting soon. I promise… cross my heart even! I’m going to do a post day with nothing but pics.
Keep Emmie-Rose and all the sick children in your prayers.
HI Everyone!! Well with Life being so extremely busy these days, blogging has become about a once a week thing. This past week has been pretty exciting! She has been going up every day on her feedings (through a feeding tube) and doing Great!!! She loves it!!! I am pumping milk for her everyday and have a HUGE Supply for Her just waiting to be used. :) She hasnt had a bit of problem with her food at all. Her Spinal Fluid has decreased which means they are taking less off a day and only once a day. Her brain has decreased in size as well by far which is wonderful! She gets ultrasounds done twice a week now to see how things are progressing, and things are looking very good. She only has her breathing tube, feeding tube and leads for her heart monitor on. Her central line is gone, her IVS are out. Meds go through her feeding tube now!! She is on three meds right now for her lungs because they looked cloudy and sounded wet, and the third they just started today to see if it will open her lungs more and make her machine not desat so much. (We arent sure if its just a touchy tube situation or if something isnt right or what right now) but between the docs, nurses, rts and Us, We are trying to figure it out.) Desatting means there isnt enough oxygen going to Her.
I got to hold Her again yesterday!!!! :) They do a hold called "Kangaroo Care", which means skin to skin contact. This was the first time I had held Her this way and it was just Awesome. I put on a hospital gown and they put her on My chest right under the gown and She keeps warm from My body heat. What a complete Joy it was. I could have stayed like that forever (except My other Babies need Me too) :) It was a wonderful feeling! Chris took a bunch of pictures that We can hopefully get up here soon. (Please dont hurt Us over no updated pics, it takes alot to being to get on the computer these days at all). :) She is over 2.7 pounds now (not sure exact lbs as She was weighed again last night and I didnt look at the chart today). They go by grams and Us "real" people go by pounds!! hehehe I held her for almost 3 hours, the longest I have gotten to hold her. I think She wanted Me to hold Her forever :( It was really hard to have to put her back in Her bed.
HI Everyone!! Life is SUPER BUSY around here these days as You might imagine!! We are trying to spend as much time as We can with Z, M and B as well as be at the Hospital too. Z starts school in a few weeks so that will give her "something" to do as well as help keep her in good spirits!! She really wants her "Baby Sis" to come home. M is doing pretty well. Trying to Potty train a little. Keep fingers crossed that We can get her to pick it up pretty quickly here. B has been going potty on the Toilet for awhile now, just not completely trained yet. All are growing up, getting into everything and trying to make Mommy lose her hair but otherwise, All is Well!! :) Baby Emmie-Rose is doing EXCELLENT!!! WOO HOO!!!! We are so excited and Very Proud of Her. She is so Beautiful!! We have figured out (I think) why her BP has been falling low. When She gets a Blood Transfusion, Her BP stays regular but when She doesnt have one for awhile, it stays low. So if We keep her on a regular schedule of transfusions, then it seems like She should be Good to Go!! We shall see!! She is feeding continuously, I am ECSTATIC!!! She is up to 1.5 cc's an hour through her feeding tube. Her other vitals are staying regular. She will be done with Her antibiotics tomorrow morning, for her Ecoli infection (14 days) though Her blood results kept coming back negative after the first find. Our next goals as She is VERY Stable right now, is to continue to increase her feeding amounts til She is on a normal amount, continue weaning her from the Breathing Machine, and "fatten" her up so She can have the Shunt placement to be able to bring her home. She has to be 4.4 pounds to get the Shunt put in to her brain.
Thanks to Everyone who has been praying for Emmie-Rose. Please continue to pray for Our "Baby Sis" that She will grow grow grow and wean from the Machine so that We can finally bring her home. We still have a long road to go but the Day will be here soon and We cant wait!! YOU GROW GIRL!!! Keep on Praying!
Today, Mom, Dad, and I went to visit Emmie-Rose for awhile. They came in to tap her brain (take some fluid from the "Shunt"). They put her hood up so We could actually see her up close and personal. Mom and Dad had never seen her without the plastic over her so this was neat for them (Im excited every time they do it). :) She did very well with all the messing they have to do just to get started. lol We all got to kiss her which was Awesome!! Mom and Dad's first time and I think My third or fourth. Wish it were all the time!! Maybe more often now since they have to tap her everyday now til they see if things ease up or change. Everything else is pretty much the same, vent settings are down some I think. She likes to move and peek at you. She is so adorable!! YOU GROW GIRL!!! Keep on Praying!!!
Today, Emmie-Rose is pretty tired and sedated still (from the surgery). The side effects of the meds will soon subside. She looks Great and is doing very well. BP is still being treated as its not coming up on its own very well. Other vitals look Great! The Vent settings have been turned up due to the Meds She has in her system right now. She is pretty out of it right now, so She isnt truly helping to breathe too much. Other than that, today is a sleepy day!! :) YOU GROW GIRL!!!
Surgery went Great!! Emmie-Rose did a Great Job!!! YOU GO GIRL!!!! Everything went very well and as normal as expected. No complications!! I started getting a little nervous when it was a bit over an hour and they had come to talk to Us yet. But transport and setup must have taken a little longer to do. She has a little bandage on her head and some suctures that will fade away soon. The "Shunt" looks like a little button under her skin where they can see where to drain the fluid from each day. Pretty nice little piece of equipment. YOU GROW GIRL!!!
Today, Emmie-Rose is on the schedule to have her "Shunt" put in her brain to drain the excess fluid. It should take about an hour altogether, transport time, setup time in the OR and transport time back to the Nicu. The "Shunt" will allow the doctors to drain the fluid everyday so it doesnt put extra pressure on Her brain. Other than that, She is still on a Med for her BP, it seems to be staying pretty low for some reason, other vitals are doing well though. She is doing very well!! Squirmy Wormy should be her Nick name as the Child is ALWAYS moving!! YOU GROW GIRL!!! Keep on Praying!
Today, I get a call early in the morning around 745ish am from the Doc Intern to let Me know they have added Emmie-Rose to the list for her "Shunt" Surgery today (scheduled for Friday). Since She is doing so well with her BP, and Her blood Cultures coming back Negative still, they are ready to do it. So while Chris slept awhile, Mom and I went to the Hospital early NOT knowing what time She would go for Surgery and wanting to be there before She left. We finally heard She was on for 2pm, which could be a little before or a little later. She started getting her Blood Transfusion around 130pm (She gets BT's often). Chris came up and sat with her for awhile and Mom and I sat in the waiting room chilling out for a bit. The Baby's parents next to Us came out and the Mom told Me She thought Emmie-Rose was having issues breathing. So I ran back to see what was going on, and come to find out her tube had moved and kinked in her mouth or something (also, the tube was too small for her anyways but due to her Vocal Cords being swollen, they used the smaller tube on Friday). They put just the OX up her nose (instead of the CPAP mask) and She did Excellent!! YAY!!! But because She was going to have Surgery, they had to put the Vent back on. (Chris was in there the whole time, but didnt/couldnt get Me because He knew I would be upset AGAIN and there was no room to move to come get ME anyways). But when I walked back there after finding out from the other Mom, She was good to go. She had her New Tube in (which was very simple this time), and looked VERY HAPPY!! Her hood was up on her Incubator (which is usually closed due to her still using Humidity). SO to see her fully open is Awesome!!!, Your Not looking through plastic to see her all the time. SHe is so Beautiful!! I got to talk to her for a bit before they closed the lid. As soon as She heard Mommy, She started smiling at Me, Everyone was so surprised that She was smiling!! It was Awesome!!
Today, We had a meeting with the Head Doctor, the Fellow, Head Nurse, Social Worker to discuss the treatment that Emmie-Rose is getting. We are not very happy right now with the transition. From the waiting room being VERY SMALL to the Clerks NOT speaking right away when We walk to the desk to the Nurses NOT even talking to Us (other Nurses "supposedly watching" Emmie-Rose while Her Nurse is on lunch/break). The Friendliness is NOT really there like at St. Joes. We Really Miss it there! Anyways, We talked to the Heads about Our Major concerns and they are going to be talking to people and hopefully things will get better soon. Emmie-Rose is doing pretty well, Still on a Med for BP, Seizures and Antibiotics for her E-Coli infection. The Cultures are all showing negative now though so that is Great! The EEG showed now activity of Seizures at all which is a Good Thing, though they are still treating with the Med (not thrilled but supposedly good for Emmie-Rose). I am still going to fight to understand WHY though. Other than that, I cant really think of anything else thats going on today.
Remember when you were growing up and your parents said "Oh you should be a doctor, or a fireman"... well the way things are going... Stephanie and I should be able to get thru med school pretty quickly.
Stephanie and I went up to visit today. I did not have much time because I had to head off to school by 4:00pm.
We got up there and were visiting. It seemed like all the nurses were too busy to even say hello. Things were cool then she started alarming at 100% o2 saturation. 100% is not good becuase it can cause problems with their eye development as they get older. Most of the time Emmie-Rose will fix this herself by her breathing and no big deal.
So shes alarming at 100%. and going and going and going.... 6 minutes later with NOBODY coming over to check on her. I was pissed. I walked out of the room to look for the doctor. Found the Fellow(Pretend doctor in training) and he said lets go take a look. Super. He walked over, adjusted her breathing machine, next crisis. We asked can we have a meeting! That was just insane that nobody came over to check on her.
So we pulled them all into the conference room. Real doctor, Fellow, Social Worker, Nurse Managerto talk about what just happened and some other valid concerns. I hope something constructive came from this meeting. We are going to be at this hospital for 3 to 5 Months! It seems like we are are not getting the personal care at U of M hospital like we did at St. Joes. Communication between the U of M staff, Stephanie and I needs to be greatly improved someway. I hope we don't need to have another meeting like we did today.
Today wasnt a Great Day!! :( They said they "thought" Emmie-Rose started having Seizures, though they werent exactly sure. She moves alot for a baby her size I guess, She had an EEG to watch for seizures when She was at St. Joes and nothing. So they decided to give her a Sedative enough though they didnt know for sure. They watched her and when She started moving again, the Nurse put her hand over her body and She stopped "moving" which means its not a seizure. SO they did ANOTHER EEG at U of M today to see what they found and We are waiting on the final results hopefully tomorrow. I am very skeptical right now by what they are seeing and feeling are seizures (as they dont even know her, and her moving is not unusual).I wont be Surprised if they ARE seizures as its probably pretty common in "Little Ones" but I am NOT yet convinced. Her Blood Culture came back today Negative so Hopefully the Surgery can be scheduled tomorrow for the "Shunt". Otherwise Baby Girl is doing very well, BP has finally come up to "normal" today and they set Her vent down to 40 and then 30 or 35 (trying to remember). But because they have Her so highly sedated (GRRRR), they had to turn her vent back up some. Very Frustrating as it seems, 20 steps back at this hospital all the time.
Today Emmie-Rose is doing Very Well!! The Infection is E-Coli! GRRRrrr So they will treat her for 14 days to get rid of it. They took another blood sample today to see if it turned out negative. The Neurosurgeons decided not to do the Tap today and will wait til tomorrow to see what the sample says before they proceed. The fluid has not built up anymore since Saturday which is a Great thing though We still need to get the "Shunt" in soon. She is such a fighter: Here's a cute story: They have an IV in her right arm, She just loves to VOGUE (put her arms up by her head and kinda play with her hair), so She started wiggling in her Snuggle Wedge, so I unbundled her some so She could move her arm. Well, because the IV is in, She isnt supposed to bend her arm at all or the Alarm will go off. So, the Nurse came over and put her arm back under the wrap. Well Emmie-Rose got it right back out!!LOL So Mom went to tuck her arm back in again and Emmie-Rose wouldnt let Mom budge her arm at all!! LOL So I reached in to help Mom tuck her back in and I had to wrestle with her for a few minutes before She finally let Me tuck her back in!! It was sooo funny!! She is so darn Cute!! :) It was adorable!!! Just like her!! :) You Grow Girl!!! :) Keep on Praying!! Love, Stephanie
Today, Emmie-Rose is doing pretty well. She has another infection that they are treating with Antibiotics. She was going to have her Surgery on Monday for her Resovoir to start draining the fluid from her Brain but due to the infection has been put off. Her blood pressure has been down awhile due to the Lasix last weekend. They gave her Lasix for her Lungs as they sounded a little cloudy. At that point, She lost too much salt and fluid, therefore it affected her BP. We have been trying for about a week to get it back up. She is on a BP Med to help it come back up to normal. She is doing pretty well on her vent, She is set at 40 right now which is good for her age. They did have to take out her IV and the line they using to give her blood due to the infection. So now one is in her Head and one in her arm. Other than that, She is doing Great and looks Wonderful!! You Grow Girl!
A quiet day... Brought all the kids up to see Emmie-Rose. Everyone got to see her. Brenden stood up on the step stool and told his sister he loved her and blew her a kiss.
The kids left with Nana and Papa. Stephanie and I talked with the Neurosurgeon about what was going to happen on Monday with her surgery. They are planning on putting a small tap in her head where they can drain excess spinal fluid and release pressure.
Called it an early night. Picked up the kids, went home and heated up dinner then crashed. I was going to stay up and blog and fell asleep. Body had enough. Yesterday took a lot out of us with all the stress of moving etc.
I took my palm pilot out of my file cabinet and dusted it off. I'm using it to journal while at the hospital now. Getting my notes down now instead of waiting to find time in front of the pc, which is hardly ever. Hit the hot sync button and I'm golden.
Sorry about this week... It was back to 40 hours at work along with school 2 nights a week on top of visits to the hospital. I was baked… Stick a fork in me.
What a crazy crazy day. Today was the day Emmie-Rose is to be transferred to the U of M. For insurance reasons and surgeon reasons she needs to travel. St. Joseph Mercy Hospital has been great. Stephanie and I are scared and anxious about today's move.
1:00 rolls around and the transfer team burst thru the door. There was a team of ten for the ride. They had what looked like a big portable pizza oven with monitors and repertory equipment attached to the bottom of it. Everything fit in a nice neat box with an opening at the top to slide the baby in to bake.
The ride over was easy. No problems.. Yet..
Stephanie and I talked with the social worker and she filled us in on everything. Super. In the mean time there was a team of about 20+ doing everything to her. (Ug!) Poor Emmie-Rose had every test in book along with head scans, x-rays, blood work, the big bundle of records we brought over seemed like it ignored. Well we don't have all the results from our exams and testing… When we got to her the Nero interns were trying to see her pupils and I was getting pissed because she was pretty rough with her.
The fun did not stop there...
At one point the nurse tried to turn her over and her breathing tube popped out. It was great watching her turn blue before they got her bagged. They overhead paged to get the doctors in the room. Then the fellow (the almost doctor) on duty could not get the tube back in. The U of M is a huge teaching hospital. I just don't like my kids being used as the fellows lab assignments! They suctioned her out but there was still an issue. They were at first going to let her try breathing on her own but that was not working well. She was just toooo tired after all the stuff she had had up until now. Then the real doctor came in. The fellow asked his senior should he just push the tub on thru. The real doctor must have heard me because he said No try it like this! There was swelling so they could not put the 3.0 tube back in, they had to use the 2.5 tube instead.
It was nerve wrenching when they would take the hand pump off her and her heart rate (ECG) and oxygen saturation (SPO2) would drop to almost single digits. Stephanie was holding back the tears and I'm like watching and thinking what the (beep) are they messing around for. Finally after all the drama they got her settled down bit but then scheduled a lumbar puncture for later that night.
Lord give this baby strength! It was after 10:00pm when we got the kids from Nana & Papa, ate dinner, and collapsed. Tomorrow is another day…
Sweet Dreams Emmie-Rose! Lord please take this little baby's pain away. Give her the strength to heal quickly so that she can be home with her family!