Tuesday, April 5, 2011

Happy birthday! Let's go to the emergency room.


4/5/11 Original Post

Nadia had her two-week appointment yesterday at one o'clock at Vanderbilt 100 Oaks. Yesterday was her original due date. It was mostly fine, except that Nadia had lost eight ounces in less than a week. We were there much longer than expected because the whole building went into tornado lockdown. The doctor advised Jessica and I to mix formula in with Nadia's breast milk in order to add calories.

Last night Jessica started doing just that. Whether or not the events of the rest of the evening were a direct result is unknown.

Nadia wouldn't keep any milk down after nine o'clock. Every time Jessica fed her, she spit up. Later, she started vomiting. I didn't learn until last night that spitting up and vomiting are two different acts. Spitting up is just the food. Vomiting includes bile.

At midnight, Nadia became inconsolable, and stayed as such for an hour or so, then fell asleep while I spoke with Vanderbilt nurses, who got us in contact with Dr. Mace, who asked us a bunch of questions. We got off the phone while she considered the situation, then she called back and told us that as long as Nadia was sleeping, we should leave her and then try to wake her and feed her at four o'clock. Dr. Mace also said that if Nadia got upset or threw up again before we fed her, to go straight to the emergency room. We hung up, but Dr. Mace called back around ten minutes later to tell us that she kept thinking about the situation, and that it was smartest to go straight to the hospital. We did. Anissa came over to be with Sofia.

Nurses hooked Nadia up to all kinds of things. Then they fed Nadia some substance that they could see via x-ray so that they could find out if her intestines had become twisted. They turned out to be fine, but that only told us what the problem wasn't, not what it was.

All sorts of tubes and monitors poked out of Sofia. The Peaches were admitted to a room with a cot. Fluids were dripped into Nadia, blood was drawn. Still, nothing definitive.

This morning Nadia has eaten a couple of times, and kept everything down. I tried to move her once and failed miserably. She had two IVs sticking out of the top of her head, and I basically ripped one out accidentally while trying to move her for eating. It made me sick to see Nadia bleeding out of the top of her head because of me.

That's everything for now. I will fill in extra details under here with times attached as the day goes on.

UPDATE: 1:36 PM 4/5/11
We're supposed to page the speech team so that they can see the problems we often have waking and feeding Nadia. We've paged them anticipating a 2:00 PM feeding. Dr. Parsons (can't keep all the names straight) says that the best we have to go on right now is that Nadia either contracted something viral, or that she is experiencing normal neurological learning issues that go with Downs Syndrome babies, or that the change in caloric density from introducing formula was too much for her stomach.

UPDATE: 3:18 PM 4/5/11
We just wrapped up a consultation with a speech pathologist. She pinpointed some specific things that have been going wrong with Nadia's meals. The biggest thing that we got out of the consultation is that Nadia has a typical Downs issue where she isn't very coordinated, and has difficulty breathing and eating. She just keeps sucking on the bottle and robbing herself of air, and then she has to gasp for air, which sucks milk down the wrong pipe. This completely screws both her eating and her breathing, because neither happens properly or enjoyably. Nadia's sleep issues are probably also affected by this problem. Until now, Nadia got really stuffy right after her feedings, and snorted a lot in her sleep for the first hour or so, which is likely part of why we have such a hard time waking her from her naps. When she starts getting good sleep, she doesn't want to lose it. So the trick is to keep a close watch on when too much milk is building up in her mouth during eating, and then tilting the bottle in a way that forces Nadia to take an air break. The results were almost immediate. We'll see if the results are coincidental. The Peaches are now in a much larger observation room, where doctors won't be tripping over each other, and maybe daddies won't be pulling tubes out.

UPDATE 6:00 PM 4/5/11
We are in our third room of the day, now on the fourth floor. This room is even bigger and comfier. At this rate, we'll be in the penthouse by morning. The last feeding was weak, but Nadia had spent much of her awake time in between feedings having blood squeezed out of her foot, so she's tired and doesn't want to eat. We're gonna try again as soon as we're settled in this new room properly. The nurses have removed her IV, since she's been eating today. We'll see how it goes.

UPDATE 11:10 PM 4/5/11
I went home to handle the dogs and grab some more things for a longer stay around seven o'clock, after a nap. I woke up from the nap feeling a bit helpless. The feeling has passed. Jessica and Nadia had some really good (thanks, Anissa) feeding time while I was gone, and Jessica also learned how to use a machine to clear out Nadia's sinuses. A big part of Nadia's feeding issues from the last few days has been her difficulty breathing. There are no problems in her lungs, but she is congested in her throat and head. Not much else to update on. Nadia is doing a little better. We just want to maintain that.

UPDATE 9:42 AM 4/6/11
I never called Dad. Oh man, am I gonna get it.

Nadia and Jessica had another tough one last night. Not horrible, just not improving. Blood draws and such threw off the rhythm. I'm trying to fix that this morning. Jessica didn't get to sleep much, and that will make today tougher. Nadia has maintained weight since yesterday, and the hope is that she will gain some today. Jessica's milk production has slacked a little in the last twelve hours, surely due to stress and lack of skin contact with Nadia, and we're not sure how that will affect our day. We have another speech pathology appointment in a few minutes. That's all for now!

I don't think I will be making it to geology lab today.

UPDATE 11:59 AM 4/6/11
Nadia's congestion is hurting her feedings, and Jessica and I are wondering if narrowing our feedings to two hours apart from three or four is maybe making things more difficult, because we think Nadia getting less sleep is making it more difficult for her to wake up.

We had another speech pathology session, and the lady who worked with us got to see the difficulty we had overnight. One of the things we've learned is that the extended feeding sessions that Jessica and I have been doing with Sofia to get more milk into her may he counterproductive, because they may be making Nadia burn more calories than she's taking in. So the we're trying to figure out which is best:

1) More frequent feedings of fewer ounces but less sleep
2) Fewer feedings with more ounces but more sleep

I'm doubting that we will be out of here tomorrow.

OH SNAP. Just as I posted this update our current nurse Tabatha came in to ask if we would be cool going back to feedings three hours apart. She's also working with hematology to better coordinate a stabbing for after a feed instead of before a feed. This is excellent.

UPDATE 2:10 PM 4/6/11
This feeding sucked. Nadia took a 40ml, and we were shooting for 45ml. But then she threw up at least 20ml. I'm very upset.

UPDATE 8:34 4/6/11
The last two feedings were good! I had been home for a bit this afternoon to grab some stuff for the hospital when Jessica texted to tell me that Nadia took 45 mL and kept it down. Nadia had even been stabbed without crying! That was at 4:10 PM, and the next feeding at 7:20 PM went almost as well. We don't expect the next one to go well, because the previous two blood draws were unsuccessful and someone new is going to try sometime in the next hour, right before Nadia's next feeding. We've been doing our best to coordinate blood stuff around feedings today, but apparently this time it won't work.

UPDATE 12:26 AM 4/7/11
The stabbing worked out, sort of. At about 9:45, our nurse came in and said the scheduled stabber was sick and went home, meaning that they had to get someone else to do it. This was great because it gave us time to wake Nadia up and feed her before the new stabber arrived. Nadia drank another 45 mL, but was rushed into the stabbing process not long after finishing. Jessica and I were worried that since the new stabber needed Nadia lying flat, she might throw everything up.

Wait, have I said that we have to keep Nadia inclined? I'll get into that later, then.

Well, the new stabber was rushing into the stabbing, and had grabbed all the wrong materials. We had an extra ten minutes to soothe Nadia after her meal. She never threw any of it up!

However, the stabbing didn't go well. Once again, the staff weren't able to get enough blood after putting yet another hole in my daughter, this one being a new one in her head. The third. Apparently our new stabber is The Man, so everyone finally conceded that Nadia is a difficult stabee, and that the number of holes in her was starting to get crazy. Nadia mostly did alright with her stabbing, though. Once the new stabber understood fully what we've been going through with all the holes in Nadia, he was more cooperative in scheduling our next attempt, which will be around 1:30 AM after the next feeding. I don't know if my "if you don't show us some understanding I'm gonna catch you in the courtyard and kick your ass" tone and facial expressions helped or not.

I'll let you guys know how the next one goes.

UPDATE 2:02 AM 4/7/11
Yes.

Nadia ate 58mL at her 1:00 AM feeding. She was gagging for the milk, couldn't get enough. We were scared because that's way past what she's eaten in the last few days, but constant burp attempts and good bottle/baby positioning seem to have won out. I was the one who got to feed her, which makes it doubly enjoyable, because I haven't had a great feeding with her in a while.

The new stabby person came about 1:30, and went right to work. The first stab was unsuccessful, and the new stabber spent a while in the same hole trying to get blood, but Nadia was a little soldier. When the new stabber started looking for new places to stab, I left. I can only take so much. I'm generally strong with these things, but when they stab my daughter over and over I get worn down.

Success happened in my absence. The staff managed to get enough blood to cover the morning's stuff, also, so hopefully Nadia won't need another stabbing when the sun rises.

Oh, also, a slight rash has developed on Nadia's face, probably from wearing the same little hat with a hole cut out for her head IV for days on end. We requested a new hat, but then we and the nurse decided together that maybe we just shouldn't have a hat, that's Nadia's skin should breathe a bit. Of course, something has to go around her head IV, so the nurse cut apart a styrofoam cup and put it around the tube. Now Nadia has a total Jughead thing going on. Photos later.

UPDATE 1:29 4/7/11
We're still doing some decent eating. 6:30AM was 51 mL, 9:45 AM was 48 mL, and 12:30 PM was 35 mL. The next feeding, at 3:30, we will introduce formula back into the breast milk for the first time since Monday night. We're apprehensive, but at least we are at the hospital if things go bad again, and at least we'll have the origin of Monday night's problems singled out.

Nadia was running a little hot the last time we took her temperature, but just 100. We'll take it again soon.

Update 4/8/11 1:15 am (by Jessica)
This will be a quick version as I just lost the long, detailed version after typing for 2 hours due to shady hospital internet connection.
Blood results from last night’s draw: one thyroid level fine, one slightly elevated which could be a factor in her slow weight gain. Platelet count slightly low, but not alarmingly so, will be watched closely during Nadia’s daily draws. White Blood cells high. Blasts have doubled since birth (they had dropped and have increased again). Daily blood draws are required to watch all of these things and to make sure Nadia’s electrolytes stay solid (last time as her blasts broke down; they released things into her blood that elevated her potassium and uric acid levels).
Fever: increased shortly after James’ last update to 101+ causing alarm. The doctor was paged in and ordered: a blood sample, a urine sample via catheter, a Lumbar Poke (LP)/Spinal Tap, a nasal swab, and a chest x-ray. Of these tests, we know the result of the x-ray which ruled out pneumonia. In newborns, the reason for a fever doesn’t easily present itself so the medical team has to go searching for it by ruling out what is not causing it. The LP required a signed consent and the doctor who performed it said her spinal fluid looked great: nice and clear (infection normally presents itself as cloudy if present in spinal fluid) but no official results have been told to us yet. She was started on antibiotic. Her head IV that had been in since our first night in the ER leaked so an IV Specialist (the same lady who did the blood draw mentioned above) started her a new head IV. The antibiotics will be continued for 48 hours. Nadia’s temp returned to normal by late afternoon and returned again tonight around midnight (100.8), which they gave her some Tylenol to help bring back down.
Breathing: Nadia’s congestion is starting to break up and was causing her some breathing difficulty tonight. Her oxygen saturation levels dropped to being consistently in the low to mid 80’s so the doctor ordered a breathing treatment. The little mask that covered her mouth and nose had a little dinosaur on it. The treatment helped and her saturations jumped into the upper 80s to low 90s. Doctor Leedy decided to put her on oxygen overnight to offer some continued comfort as her congestion continues to break up. This keeps her saturation at 100 and she will be weaned from it in the morning.
Dr. Polaskie (Hematology/Oncology), who has been our “Blood Doctor” since the beginning has come by daily while we’ve been in the hospital. During today’s visit she let me know that they again discussed Nadia in their Department Roundtable discussion and agreed that they still wanted to follow the course of action of just watching. Even though her blasts have increased to 38%, her stomach exams still show that her spleen, kidneys, and lymphoid are normal in size and she has been showing improvement in her illnesses and eating. They feel that if it was Leukemia these improvements would not be happening.
Feeding: Nadia is kicking some butt! She was due for a feeding right when the Doctor ordered all the tests due to her fever today which meant her feeding got pushed back an hour. I had little hope that she would still want to eat after all that poking but Nadia proved me wrong and ate 60 Ml of fortified breast milk. Fortified milk is a 50/50 mixture of breast milk and formula which raises the calories from 20 to 24. Her 10:30 feeding last night she drank 70 Ml of the fortified milk! The feeding that James just finished she drank 75 Ml!!! Go Nadia Go!

4/8/11 8:00 am (by Jessica)
Last night went pretty well. Nadia continued to eat really well and every three hours. It seems to be getting a bit easier waking her up enough to eat (I pray that typing that thought out loud doesn’t jinx that result). She continues to drink well over the minimum requirement of 45 Ml per feeding.
Dr. Rawls and Dr. Parker just stopped by on rounds this morning. They feel that her illness is viral and is bronicalitis (sp). She will continue her antibiotics and received yet another IV last night, this time in her left foot. If this one holds strong they will take out her head IV. I asked about the deafness concern that surrounds newborns and antibiotics (she has an auditory screening scheduled for after 6 months of age due to her first round of antibiotics while in NICU). He explained that 48 hours is usually not a problem and that she was on them the first time for 5 days and when you get into that time frame it can sometimes attack the auditory system. She is on the same antibiotic as before; it was the one picked because of the results it gets in Nadia’s age group. They warned that Nadia could get worse before getting better due to her breathing and the congestion breaking up. Her supplemented oxygen level is very low this morning but can continue if needed. They will also keep another breathing treatment on standby in case needed. Dr. Rawls was very pleased with her eating increases and said that she is doing enough to keep her off the feeding tube (which is great news especially with all her congestion). He warned that her eating could possibly fall back off as she struggles to break up her congestion.
This morning’s blood results: Differentials are not yet in but here is what we know, her platelet level has increased a bit (that is good news). Her white cells are still high.
Here is a rundown of the names of the doctors I remember:
Dr. Rawls, Dr. Steigelfest, Dr. Mace all work for University Pediatrics at Vanderbilt 100 Oaks. There is always a member of the practice on call for the hospital. Dr. Mace was the on call doctor who first directed us to visit the ER. Dr. Rawls is the doctor who transferred Nadia to NICU shortly after her birth and responded to her elevated potassium levels. I really like our Pediatric Group. They communicate really well and stop b to see us often. Sofia goes to this group as well and they often ask how she’s doing and really care.
Dr. Parker (day shift) and Dr. Leedy (nights) have been the hospital staff pediatricians taking care of Nadia. The nurses contact these doctors with any issues or changes in Nadia and they communicate any decisions they make to our Pediatric Group. The two teams of doctors work together in Nadia’s care.
Dr. Peroskie is the HemeOnc doctor that monitors Nadia’s blood.


9:14 AM 4/9/11
Nadia's weight is down again, less than two days ago. However, her appetite is okay and a nurse cleared our her sinuses fairly well.

This morning a doctor told us what our goals for leaving are.
1. A couple of days with no temp.
2. A couple of days of consistent appetite
3. A couple of days without her oxygen tube

Which puts us at Monday as our earliest discharge. I'm really over this place.


Update 4/9/11 11:00 pm (by Jessica)
Confused by Nadia’s weight loss this morning. Our team decided that we needed 45 Ml of the fortified per day. Yesterday she drank 446 Ml, a 23% increase of what they were shooting for and yet she still lost weight? That was discouraging news to hear at 5:00 am. We’ll see how the weight check goes tomorrow. Today she has only gotten down 342 Ml so I am a bit nervous. Her appetite was smaller today and she spit up twice (once pretty significant in how much she lost).Her weight at birth was 5 pounds, 11 ounces. She was discharged out of NICU at 5,12. Her appointment a week later at HemeOnc she weighed in at 5, 12. Three days later she had dropped to 5,4. Two days ago she was back up to 5, 9 and this morning she had dropped ounces to 5 pounds 7 ounces. I’m convinced that if I’ve been warned to keep our feeding sessions down to thirty minutes or less to prevent Nadia from using more energy during the meal than she is taking in, then all of this extra stimulation from her medical attention is causing her to burn off much of what we’re getting her to keep down. It’s a catch 22, which does she need more?
She did alright today. Nothing spectacular, but nothing terrible either. She threw up a lot after her 2:00 feeding and I removed her oxygen tube from her nostrils to clean up the mess. Hersaturation levels maintained in the upper 90’s so, with our nurses approval, we pulled Nadia off her oxygen assistance. Great news. She did start to drop back into the 80’s around 9:00 and had to be put back on, but it is still a victory that she went six plus hours without J She still draining a lot of nasty stuff out of her sinuses and that makes it difficult for her to breath easily. I feel confident that we will get her off her oxygen tomorrow if her drainage continues to improve. Her sinuses are so irritated from the drainage and the suction that we keep putting in her nose to help pull it out that she suffers. It is not uncommon for her nose to bleed a bit after her nose gets suctioned. There was also some old blood present in the above mentioned vomit that came from what she has swallowed.
Late last night, Nadia’s umbilical cord stump fell off revealing a perfect little belly button. She’s a big girl and I’m a proud Mommy.
James got me out of the hospital last night for the first time since we came into the ER on Monday night. We enjoyed the warm summer air and walked the few blocks to Hillsboro Village to eat supper and venture into a couple of shops that were still open. We missed our first feeding and our Care Partner, Jessica, had to step in to handle it for us. Not all nurses are created equal and Jessica is part of my least favorite night crew, she’s honestly a bit rough.
This afternoon after the feeding session that Nadia threw up most of, James convinced me to leave again. He has been going home daily to feed the dogs and do some things that need to be done. This time I went with him to get some clothes together. Then we went over to Anissa to visit Sofia! It was wonderful to spend a few hours with her. James and I have both been concerned that she’ll feel abandoned and resentful toward Nadia. We disappeared in the middle of the night and stayed gone for 5 days, returning with a baby who took a lot of Mommy’s attention from her. Now, we disappeared again in the middle of the night (taking the baby with us) and have stayed gone for another 5 days and counting. I’ve missed her so much. This is much different than a business trip. On a business trip, I know that she has her Daddy close and that her day to day schedule doesn’t change. In this situation, I miss her more because I worry about what she is feeling and how she is adjusting to the changes. I know that she is being taken great care of (thank you Sally, Matt, and Sanborns!) by people who adore her as much as her father and I do…but it is not her father and I. I hope that makes sense to someone other than me. I swear Sofia had grown this past week. Of course I have spent almost a week caring for a 5 pound tiny thing so my perception may be a bit off. She met me at the top of Anissa’s front steps, not even allowing me to step all the way to the top before throwing her arms around me. I almost teared up seeing her excitement to see us. We played, watched some tv, celebrated Kate’s birthday since James and I missed it being at the hospital on the 6th, and put Sofia to bed. It hurt to leave.
As we drove back to the hospital, I witness something pretty awesome on Hillsboro. The Village was hopping as it is a Saturday night; people were everywhere. As we drove past Pancake Pantry I noticed to young, nicely dressed ladies facing a bench with two people sitting on it. I am a people watcher and something intrigued me to look a bit closer. As our car moved into position to the side of the group, I could see that they were holding hands and obviously praying together.Even more to my surprise, the two men sitting on the bench were obviously homeless. I hope that all four of these people found some comfort in each other and in that prayer. I found some inspiration in being a silent witness.
When James and I returned to Nadia, we saw that she had two new band aids on her arms tipping us off to another blood draw (she had her daily one this morning at 5:00). When we inquired about it, we were told that it was for her platelets count. I will be finding out from our doctor tomorrow during rounds why it had to be a separate draw. Please let her gain some strength.
Please keep the prayers coming, folks. We appreciate all the love and support.

Update 4/10/11 4:45 am
She gained this morning!!! She gained a lot! Nadia finally crossed the 6 pound mark and currently weighs 6 pounds 4 ounces meaning she gained 13 ounces since yesterday morning's weigh-in (or yesterday's read was incorrect). Anyway...celebrate, people. This is huge.
They did come in for her daily blood draw just before her weight check and had another failed attempt. I didn't stand by the bed but believe I counted 4 needled being tossed which means 4 different poke attempts that resulted in no blood. The woman doing the poking this morning came over and said that day shift would have to try again but that she would pass on to the doctors that there is no place left to go. This little girl has had draw attempts at every possible vein, partner that with less than ideal circulation and you get a lot of fails. I don't know how long it takes for a vein to recuperate to the point that it can be used again (a question for Doctor rounds in a couple of hours) but this is beyond ridiculous. I honestly believe that it is as bad as we feel it is because so many of the "pokers" have spoken to us about how beat up Nadia's veins are and how there are limited options. But, SHE GAINED WEIGHT! Celebrate!
Now it is time to sleep.
Love to all, Jessica

4/10/11 2:00 pm
The reweighed Nadia to make sure that the measurement taken in the wee hours of this morning was correct. It was. The double check confirmed that she is over 6 pounds :) We found out that Jessica (the Care Partner that I am not particularly fond of) never even logged the low weight from yesterday. I wrote it on the dry erase board in our room but she never put a weight measurement for 4/9 in Nadia's chart at all.
The Care Partner for today just came in and confirmed my suspicions that she was working a bit harder to breath again. She also noticed that Nadia's belly is a bit larger and harder than normal (not super hard but not as soft as it usually is) so she called in the Doctor who ordered an x-ray. The doctor asked me to hold off on feeding Nadia until the x-ray is analyzed. Poor baby is so hungry and trying to tell me every way she can (rooting, sticking out her little tongue repeatedly, etc.) Hopefully the x-ray results will be back shortly and they will allow me to feed her. Feeding her is the one thing that we can control. Sticking to her three hour schedule is a form of sanity. I'll keep you posted on what we find out.
Also, the doctor that came in and ordered the x-ray also said that he spoke to HemeOnc and they feel that the daily blood draws can pause as she is doing better. I'm sure they will still do draws but it is encouraging to know that they will at least be less frequent.
Care Partner just came in and said that I should continue to hold off on feeding and that they want some further monitoring. She hooked up some cardiac sticker-things (heart monitors) that will be more accurate and thorough than the pulse detector. The doc wants her monitored this way for the next 5 hours just to be sure of what may be going on.
Doctor is now down discussing her x-ray with radiology. They may have to decompress her tummy by sticking a tube down her nose to let some air out.
Jessica


4/10/11 10:25 pm
The Doctor came back in to tell us that he and radiology discussed Nadia's x-ray and wanted to continue to monitor, but allow her the opportunity to fix it naturally. The x-ray showed no abnormalities. Doc decided not to put the tube down her nose to decompress.
She has had multiple poops since 1:00 pm, which should help. She had only had one poopy diaper in the previous 24 hours. None of her dirty diapers have been all that large, however, and her tummy is still very bloated.
They did allow us to feed her at 4:00. The doctor wanted us to only give her 30 ml to see how she handled it. She drank it down like a champ and wanted more. We fed her again at 7:00 and got to increase the amount to 45 ml. The doctor does not want us to surpass that 45 ml per feed until her gastrointestinal issue gets cleared up. We then went out to supper with Eddie and Twanna (thanks guys!) and came back to feed her another 45 ml at 10:00. Her tummy is still really puffed up, especially when you take her diaper off and see the ball of belly compared to her tiny little hips and thighs. As we were leaving at 7:00, they were coming back in to do another x-ray. The first one from this afternoon had a dark spot (shadow) on it that they wanted to double check. Those results are not back in yet.
At 7:00, my favorite night nurse, Lane, came on duty! She offered to take Nadia off her oxygen and see how she did. As of right now she is holding strong and has maintained her own breathe with acceptable saturations. She has had moments dipping into the 80s so I will not be surprised if she has to go back on before morning, but we'll see. Every bit off is a step closer.
Jessica

4/10/11 10:25 pm
The Doctor came back in to tell us that he and radiology discussed Nadia's x-ray and wanted to continue to monitor, but allow her the opportunity to fix it naturally. The x-ray showed no abnormalities. Doc decided not to put the tube down her nose to decompress.
She has had multiple poops since 1:00 pm, which should help. She had only had one poopy diaper in the previous 24 hours. None of her dirty diapers have been all that large, however, and her tummy is still very bloated.
They did allow us to feed her at 4:00. The doctor wanted us to only give her 30 ml to see how she handled it. She drank it down like a champ and wanted more. We fed her again at 7:00 and got to increase the amount to 45 ml. The doctor does not want us to surpass that 45 ml per feed until her gastrointestinal issue gets cleared up. We then went out to supper with Eddie and Twanna (thanks guys!) and came back to feed her another 45 ml at 10:00. Her tummy is still really puffed up, especially when you take her diaper off and see the ball of belly compared to her tiny little hips and thighs. As we were leaving at 7:00, they were coming back in to do another x-ray. The first one from this afternoon had a dark spot (shadow) on it that they wanted to double check. Those results are not back in yet.
At 7:00, my favorite night nurse, Lane, came on duty! She offered to take Nadia off her oxygen and see how she did. As of right now she is holding strong and has maintained her own breathe with acceptable saturations. She has had moments dipping into the 80s so I will not be surprised if she has to go back on before morning, but we'll see. Every bit off is a step closer.
Jessica



4/11/11 7:20 AM and 11:00 AM
Nadia has been off of her oxygen tube for almost sixteen hours (since 7:00 pm Sunday night)! The poops have continued, also. Her tummy is reducing, but slowly (started at 38 centimeters around, has dropped to 35). Things are looking up!

Her weight this morning was 6 pounds 5.4 ounces. She continued to gain a little bit even though her intake is being limited to a maximum 50 ml per feeding.


4/12/11 1:47 PM
Nadia's enlarged stomach became concerning to her parents and the doctors. Monday evening she was put back on an IV, and we are not allowed to feed her until the doctors discern what is causing the engorged stomach. It may be that her bowels aren't processing food as quickly as they should because of some sort of blockage, or that she has an infection of some sort, or that she has air in her intestinal walls. It is also possible that one issue is causing another. She definitely has some unwanted fluid on her stomach, which is being pulled out through a tube that is usually used for feeding. Much of today is about figuring out exactly what is going on with Nadia's tummy.


We do not have a new timeline on going home. I don't expect us to be home before the end of the week.


Nadia also had one of these inserted this morning:
http://www.google.com/search?rlz=1C1CHFX_enUS399US399&sourceid=chrome&ie=UTF-8&q=picc+line

-James



1/12/11 3:30 pm
Yesterday, James and I fed Nadia at 1:00 pm (she spit up about half of what she drank) and then went home to feed the dogs, pick up another car so James could go to school and I’d have a vehicle in case we got discharged, and do some normal things. We were feeling good about Nadia and hoped for discharge in the not too far off future. She was doing great and eating well! The only concern was her distended belly that had become an issue on Sunday night. We had a wonderful afternoon (James played some Guitar Hero, we both worked on some laundry, and I traded out Sofia’s summer for winter clothes in her drawers). We were both surprised when our doorbell rang at 3:30 as we had forgotten about an appointment with Early Intervention (a government funded program to help families set goals toward development in children with delays). Luckily we were both home as the meeting was wonderful and we are both excited about the program and assistance it can offer us in setting Nadia up for her best success.
As we were leaving the house, I looked at my phone and realized that we’d missed a call from Vanderbilt. James returned the call and found out that Nadia had some great er isses arise with her distended belly. Upon returning to the hospital (through the pouring rain), our nurse, Brittany, came in to tell us that after we left the doctor did another x-ray on her belly due to that fact that she spit up so much again. They also did an ultrasound on her tummy which showed a lot of fluid in her belly. We still do not know what that fluid is (nor do her doctors). After eating at 4:00, Nadia started struggling to keep her breath so the nurse put her back on oxygen. Nadia next spike a fever which made the medical team draw some blood which showed elevated white cell counts. They inserted another IV in her left foot and started her back on antibiotics. Nadia was not to be fed until further notice. This was a lot of negative changes to come back to…
Dr. Parker was paged to come in and explain it all to us. Several hours later she finally came by. We were told that the x-ray had been analyzed by the radiologist and was a mystery. The fluid shown in the ultrasound was a large concern and that an NG Tube would be inserted through Nadia’s nose to hopefully decompress her tummy and pull out some of that fluid. Dr. Parker was very honest that they really do not know what is going on with Nadia.
A few options causing her potential Ileus (bowel obstruction) have presented themselves. The first is pneumatosis, which is the most dangerous as it is gas in the bowel wall and can cause rupture. To be proactive with this possibility they started her on the antibiotics again. This possibility is backed up by the fever and the elevated white blood cell count which leans toward infection.
The second possibility brought up by the radiologist is called Hirschsprungs, a rare disease associated with Down syndrome. In this possibility, her weaker muscle tone would case problem of her intestines not contracting enough to push matter through successfully. As one portion of the intestine swells, the portion directly under it counteracts by becoming smaller which is actually counterproductive. They do not believe this to be a strong possibility since she is still having small bowel movements.
They would repeat her x-rays every morning and keep a close eye on her. Nadia is back on daily blood draws up to her limit of 2 ½ ml. She is not to be fed as it may compound that problem if her body can not discharge waste. She will receive fluids through her IV to keep her from getting dehydrated. I asked about a PICC line since her blood draws were beginning again and Dr. Parker agreed that it was time. The PICC line is more permanent and stable than a regular IV. It is inserted much deeper into the vein and can be used to both administer fluids and antibiotics and to draw blood. At least she won’t have to suffer the daily pokes. Dr. Parker also told us that she had requested a consult with the surgical team to get a specialized opinion on her belief that Nadia did not need surgery. The Surgeons came in shortly thereafter and asked James and I questions about Nadia’s family history while doing a physical exam.
It was a tough night. The put in Nadia’s NP tube; it was awful for all three of us. Nadia hated this procedure immensely, plus she was starving and kept trying to eat everything that came close to her head. They got the tube down and while they were taping it to the side of her face she spit it back up (it went down her nose and came out her mouth), so they had to pull it out and try again. They taped it to her face to secure it and then put socks on her hands and swaddled her tightly in her blanket. Even though we weren’t having to wake up to feed Nadia, we were being woke up often by the team checking on Nadia. She would just she seem to calm back down and someone else would come in and disrupt her some more. She also managed to pull out her left hand and pull out her NG tube, so they reinserted it into a screaming Nadia for the third time in the middle of the night.
Her NG tube was attached to a large glass to empty into (using gravity only). This morning we were bummed to hear that nothing had drained out of her belly. They decided to try a bit larger piece that goes into her nose and add some intermitten suction to encourage more to come out.
This morning, the Surgeons stopped by again and told us that surgery was not recommended. They did suggest a contrast enema (a suppository that would dye Nadia’s intestines from the bottom up to reflect better on an x-ray). The full team has not agreed to this procedure yet. Finally, the surgical team did request that nothing be inserted in the rectum (including thermometers).
Dr. Mace (Pediatrician)stopped in to tell us that the PICC line was approved. So he wanted to start a fluid that has some calorie content so that Nadia would not lose too much weight while on her food freeze. This will not assist with her hungry feeling, but it will give her some nutrients. Nadia did gain some weight at her weigh in this morning; however, we have no way of knowing how much of that is unwanted from her belly and bowel.
Nadia’s blood pressure has increasingly climbed in the past few days. It is not alarming, but is being watched and noted as high.
Audiology came by the room yesterday afternoon and today to conduct her newborn hearing screening. Unfortunately, Nadia did not pass these these tests. The technician, Lauren Roberts, told me not to worry about this yet since Nadia is still congested and was diagnosed a few days ago with bronciolitis. We can still hear and see the congestion in her nose and it is safe to assume that she has some fluid in her ears as well. Lauren was going to talk to her department head to see if we should schedule a deeper diagnostic testing or if we should just wait until Nadia is better and conduct an outpatient retest. The diagnostic testing is able to bypass the area of the ear canal that builds fluid and more in depth results (the level of hearing loss).
Nadia’s PICC line was inserted today just before noon. It is a sterile procedure that is a bit daunting and thus parents are asked to leave the room. I wasn’t prepared for this and only thought to grab my purse as leaving the room. Anissa called as I was wandering around the Vanderbilt Campus and offered to take me to lunch to help pass the time. Thanks, Sissy!
It is now 4:00 pm and they just came in to take Nadia for her contrast enema. When she returns, they will take out her IV since it will all run through her PICC now. (They confirm correct placement of the PICC with an x-ray before allowing it to be used).
I think that is all I know right now.
Jessica

4/12/11 8:00 pm
Nadia is currently receiving a major enema from the Head of Pediatric Surgery, Doctor Rauth. He has inserted a catheter, warmed a liter of saline, and is doing his best to flush out her system. I will tell the story of what led us to this point.
At my last post, Nadia was being taken away for her Contrast Enema. When the nurse brought her back to the room, she celebrated that Nadia had made it through the entire trip and procedure without her oxygen. She told me that Nadia’s stomach was even more distended because of the procedure (that is normal) and that we might see some clear fluid leak from her bottom. As time went on, Nadia’s tummy did not lose its post-enema addition, and started to turn purplish.
A physician working with Dr. Parker (can not remember her name) stopped by multiple times today and was obviously working on Nadia’s case and spending much time reviewing her chart; she’d stop by when she wanted to check on something or had a new thought. She came in about an hour after Nadia returned from the contrast to share that she noticed on Nadia’s last blood screen that she was retaining some carbon dioxide. We know from the oxygen/pulse monitor that her oxygen saturations are good but what the blood screen shows is that, probably due to the size of her belly pushing on her lungs, she is not fully exhaling her CO2. Not a huge worry, just another possible piece to the puzzle. She also said that while not conclusive; her enema results did show some similarities to Hirschsprungs Disease. The next step, if everyone agreed, would be to take a biopsy through her rectum. While this doctor was here I brought up the belly color change and asked her to look. She finished our discussion and left to answer a page. I changed Nadia’s diaper (a little poo) and was taking a picture when she exploded bright green liquid all over the bed. I called for my nurse a bit alarmed, not realizing that this was the dye used in her contrast enema (getting rid of it on her own is a good thing). I ran some warm water and quickly cleaned Nadia up so that the bed could be stripped when my nurse came in (it instantly soaked through all the layers). I removed her from the green pool she was laying in to a clean portion of the bed. I quickly put a new diaper under her bottom and before I could even close it up she exploded more green liquid. As the nurse and I were cleaning up, the doctor came back and said that she was contacting intensive care due to all of the issues paired with the color change of Nadia’s belly. As she left the room to dial an “Urgent”, my nurse warned me that a bunch of people were going to come storming in and that it would get a little scary. God Bless Brittany for giving me that warning. A team of 11 people charged in a few minutes later. I had texted James asking him to return to the hospital in case we got transferred to the new department. He called back as the team was briefing Nadia’s case. Nadia’s belly color was getting less purplish throughout the briefing (assumingly due to the pressure released when she shoved out all that green liquid). The intensive care doctor requested that surgery be notified to join in (enter Dr. Rauth). During this briefing, Nadia flushed out another load of the green stuff. It took Dr. Rauth only a few minutes to join our room full of people, but by the time he arrived Nadia’s belly color was nowhere near as bad as it was. They decided that a transfer to Intensive Care was not necessary at this time since she improved. Dr. Rauth ordered more x-rays, this time including one taken lying on her side to make sure that there is not a hole in her bowel. He also wanted to do the catheter/saline rinse to try to flush her out as much as he could to relieve pressure and to prepare for the biopsy (he, too, had already reviewed the contrast enema and was in agreement with the next step being biopsy tomorrow morning). If they are able to complete the biopsy as planned tomorrow morning, we will find out the results by Thursday afternoon.
Nadia did begin to receive her nutrition tonight (the IV fluid that contains some calories to keep her from losing weight). It will not keep her from feeling hungry, but will give her the necessary caloric intake to keep her from losing all the weight she’s gained this week.
Dr. Rauth’s clean out of Nadia did not result in any fecal matter. Some more of the green stuff came out, followed by the same clear saline fluid he was putting in. He will try the procedure again tomorrow morning before the biopsy.
He did tell the nurse to put in a larger NG tube for the evening to try again to decompress her belly. This enlargement will not fit through her nose and will have to be inserted through her mouth (her nostrils are so tiny). Newborns naturally breath through their nose, so this might be a little better for her anyway.
We’ll update again tomorrow. Please pray with us that it is a better day than today and that the Doctor can figure out Nadia’s belly. Love to all.
Jessica



4/14/2011 12:28 PM
It is important to Jessica and I that you guys know that we are not completely in the grips of despair. We feel like there is movement in the treatment, that progress is being made. Nadia mostly seems comfortable, outside of being very hungry now that she can't take any food by mouth. I'm sorry that I'm not better with the details right now. I'm trying to reserve that type of brain space for school for the next two weeks.
-James


4/14/11 6:00 pm
Apologize for the delay in getting this updated. Yesterday was a little hectic.
The result of the flush out from Dr. Rauth produced extremely limited fecal matter. It also flushed out very little barium (the green dye that she had discharged mostly on her own much to Mommy’s alarm earlier). He was going to try again yesterday morning before the biopsy. To clarify some confusion: the biopsy was to see if she does indeed have Hirschprungs. They take a sample of the bowel to see if it has nerve ending; if she has Hirschsrpungs, then no nerves will be present. The biopsy did not happen yesterday.
Dr. Steigelfest (University Pediatrics) came in on her morning rounds after being off for the weekend. The last time she had seen Nadia she was doing so much better. She instantly was alarmed at the size and discoloration of Nadia’s belly and called in Dr. Parker. There was also some fresh red blood coming through her OG tube ( from her stomach). Steiglefest ordered another x-ray, blood draws, and ultrasound. I questioned the blood draw as Nadia had had her maximum pull for the day that would not expire until noon. I was told the need outweighed the concern. The blood test showed that Nadia’s blood does not clot; it is missing a coagulative agent.They ordered FFP (fresh frozen plasma) to help with this. They also discovered that Nadia’s liver is not performing up to par (it is not failing, just not functioning fully). They believe the fluid in her stomach is liver excess. I still have not heard any results from the ultrasound or x-ray only that her belly is very full of fluid.
The team feels that we have two separate things going on. #1 is her belly dissention, the fluid in her stomach, breathing difficulty, and the liver not fully doing its job. #2 is the Possible Hirschcprungs. Dr. Steiglefest and Dr. Parker met with Dr. Rauth who agreed that the biopsy should not be done since Nadia is not clotting and since the need for the Hirsprungs Disease diagnosis would not affect the more pressing issues listed above in #1.
They pulled out her OG Tube just a bit, making the assumption that it was in too deep and was rubbing the stomach lining and causing the fresh blood in the line. They ordered some Pepcid to help protect the stomach lining.
They were very concerned with the size of her belly. The largest girth thus far has been 39 ½ centimeters, today it is still holding strong at 39. The team requested that our nurse set up station right outside our door and conduct hourly vital signs and belly girth. This was very demanding for our nurse as Nadia is not her only patient on the floor.
Hematology decided that it was time to begin treatment of her Myloproliferiative Disease (transient Leukemia). Her blast percentage had actually dropped; however they feel that all these other symptoms could be her Leukemia making her ill. Nadia would be moving to the 6thfloor and beginning a five day (2 times per day) stretch of Chemotherapy. The drug is called AraC and is a well tolerated chemo. The move to the 6th floor is because the drug requires a special certification to administer and the 4th floor nurses do not have it. Nadia’s dose is extremely small (it was referred to as “barely chemo” and “chemo-lite” by members of the HemeOnc team) but will be enough to let us see results if it is the Leukemia that for that (biopsy) will not be worried about until after her chemo treatment is finished.
Less than an hour after these decisions were discussed with me, Dr.Parker came back in to tell me that they were calling another Rapid Response on Dr. Steigelfest’s request. They were concerned with Nadia’s breathing and the amount of time it was taking to care for her being beyond what her current nurse had to give. Once again, a small army of people came rushing her to brief Nadia’s case at her bedside. They decided that she should indeed be moved to the Critical Care unit (PCCU) on the 5th floor where she could be watched more closely than she was able to be on 4. Her breathing and her bluish distended belly are what was worrying everyone.The wheeled her out and left me spinning in our room. I quickly packed up all our personal items and showered, not knowing when I would get the next chance. I took most of our things to my car, keeping with me only my pump supplies and some magazines. I wasn’t sure how limited the space would be in Nadia’s new digs; in NICU we weren’t allowed to bring in personal items to be stored in the room.
PCCU readjusted Nadia’s OG Tube, feeling that it was too high (Nadia dislikes the tube and is constantly trying to choke it out). They gave her more oxygen than she was getting to make it easier for her to pull the breath she needed. Her follow up blood draw showed that clotting was still not happening at the level they wanted it to so more Plasma was pumped in. Otherwise they did not change her current care plan.
Her first Chemo treatment was last night at 6pm and will continue every 12 hours. She has had three so far and is showing no signs of any side effects. Dr. Peroskie said that the dosage is so small she didn’t expect to see any. Nurses from the 6th floor are coming down to administer the chemo. We have to wear gloves to change her diapers and they must be disposed of separately as chemo leaves the body through urine.
Today has been a quiet day. Her color is more uniform, quite pale but her belly almost matches the rest of her skin even though the girth has not really decreased. She is now over 7 pounds but we do not know how much of that is the fluid being held in her tummy. I will say that her jowls have filled out as have her little legs, she’s definitely gained weight. Nadia had another x-ray to look at her tummy fluid. She had blood work up done. She has had her OG Tube adjusted many times; it is still hooked up to some suction to relieve pressure in her tummy. She gets her vital signs and tummy girth checked every hour. She is still on her pepcid and antibiotics. She receives a dose of chemo twice per day. She is still on a low dose of oxygen. She did receive another helping of FFP (plasma). She is still pulling pretty hard to get her breath, but they feel like she could probably move to the 6th floor tomorrow if things remain uneventful through the night.
Since we came to PCCU, Nadia’s team of Doctors (except Hematology) is all new. I’m not a fan of that since the doctors we had been working with had been on her case for 2+ weeks. I was finally remembering names and specialties and now have to start over. I don’t know if her team changes again when we move to the 6th floor or if our old team will return to the mix. Time will tell.
Love to all,
Jessica

22 comments:

  1. watching, and praying. and loving you all.

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  2. Take care of yourselves, ok?

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  3. You know that she is in the best care for her recovery...that of caring nurses, doctors, parents, and God. He's taking care of everything!

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  4. I think this was perfect:
    "Jessica and Nadia had some really god feeding time"

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  5. Keeping you all in my prayers, I remember how scary it was for me to be in the hospital with Charles when he was that young. Let me know if I can do anything for you guys.

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  6. I'm so encouraged when there is a bit of good news! I hope you guys have a good night that is filled with renewing sleep! Love you guys!

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  7. Keep up the good feeding Nadia!!

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  8. We are thinking and praying constantly for our dear Nadia. So glad to hear she is eating and that docs are finding out whats going on.

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  9. Anxiously checking the blog for updates. Let mek now if you guys need anything tonight or tomorrow. Sally and I will exchange Sofie tomorrow. Kate will be thrilled that her slumber party has an extension! Happy times for the Peaches and feeding with fortified formula tonight!!!! Love You Guys!

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  10. WE LOVE YOU AND ARE IN OUR PRAYERS!

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  11. Just checked for updates, you guys are in my thoughts all the time. I will be gone all day tomorrow, but if you guys need anything please call me.

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  12. Thanks so much for keeping us posted, Mr & Mrs Peach. Following Nadia's story (start) and anxious to meet her and visit with all of you. All my love!

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  13. Good morning! Checking blog - hopefully another good night. Miss you all and we send our love via blog.

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  14. I think that Nadia likes Lane too! Hopefully an oxygen-free machine night went well!

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  15. Hi Jess, James and Nadia,
    So good to talk with you this am and hear that Nadia is improving. Amazing how fast she is gaining! Keep it up, Nadia and you'll be home soon! Sophia is waiting for you!

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  16. I hope the PICC line helps ease some of her (and your) discomfort. they should be able to draw from it as well as administer meds, eliminating the need for those miserable daily blood draws. just stay on top of the nurses about keeping the site clean (i know you will) to prevent infection.

    and Jess, i understand exactly your concerns about Sofia. you and James are excellent parents and as soon as you get through this little trial and get those sisters together, i think you'll find that Sofia will become one of Nadia's biggest champions. there's something special about the relationship between sisters and she has such a good example with you and Anissa.

    loving you all and continued prayers.

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  17. Holy Cow, dear heart! I just read the update that you wrote out tonight. I hadn't read it yet when I just called you. You must feel so wrung out! THis is all in God's Hands and whatever happens will be God's Will. I just pray that Nadia, you, and James can feel the embrace of all your friends and family as you are going thru this turmultuous [sp?] time. God bless each of you and may the power of heaven be each of you!

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  18. Dear kids,
    My heart bleeds for what you are going thru. But, I truly believe that our dear Lord is with you every step of this journey. I'm in agreement with Angie and Anissa, Sophia will be alright in all this. She has a loving Gramma and Grampa taking care of her, filling her with lotza love. I am working on coming out, to help Sally and you kids. Dad and I are praying for a speedy recovery and that doctors find out what is going on. We are sending all our love thru these blogs. Know our arms are around you at all times.

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  19. Sofia can't wait to see you this afternoon! She just babbled and babbled when talking about coming to "town city." :-)

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  20. Just wanted to chime in that I'm praying too- though you have no idea who I am. Hope it's not weird, but I had Anissa's job back when the company was in PA. anyway, Anissa is awesome, and as a mom of a 4 year old and a 3month old, i've been watching Anissa's posts, and catching up when I'm up in the middle of the night with my little one. I take those quiet moments to pray for you and Nadia-that roadblocks would become evident so the doctors can know exactly what she needs. Regardless, God does know what she needs, and I pray that He will heal her and allow her - and all of you - to get back to family life.
    Sorry to intrude, but wanted you to know there are people in PA praying for your precious little one, and for you! Mindy Maros

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  21. Please call me if there's anything I can do - stop by and stand watch while you guys take a much needed break (I know it's hard to leave your baby girl, and I've got mommy and hospital experience both down cold); I can relieve Anissa of both Sofia and Kate if she needs an afternoon off; bring clothes or snacks; anything you need. Love you all.

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  22. Praying that everything will start to work out and you all will be home soon. Please let me know if there is anything I can do for you all.

    Katherine

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