Wednesday, April 27, 2011

She pooped and Mommy is very proud!

Update 4/27/11 9:00am

It has been fairly uneventful the past couple of days. Nadia is the boss and is directing the speed of her recovery and health improvements. We are waiting, watching, and praying.

The rectal biopsy is still on hold until her platelets increase and white blood cells decrease to normal levels. Hirschsprungs is still a possibility but not so pressing that they want to risk bleeding or infection to get the answer. (Last platelets level was 20,000 while the normal range is 145,000 to 400,000)

Nadia is on a blood draw holiday today. This is the first day since April 5 that she has not had some drawn and tested.

We are pressing on with bottle feeding the expressed breast milk. We increase the amount a little every day and she is up to 30 ml/cc every three hours. Today she will go up to 35. This is still not enough milk to sustain her s she is still getting her nutrition through her TPN through her PICC line. It is enough fat that she has been taken off her lipids. We are definitely moving in the right direction!

Nadia had her first bowel movement in a very long time yesterday and followed it with five more throughout the day. This is great news and something we celebrated with many doctors and staff at Vanderbilt. It means that her stomach is handling the feeding and processing it which means that we can continue.

Yesterday, the nurses changed the dressing on her PICC line and encountered some problems. The new stat lock that holds it in place was faulty and Nadia was impatient with the amount of time she was being pinned down while they called for a replacement. The same woman who inserted the PICC was called up to consult if the placement of the line had been compromised by Nadia’s struggle. She reviewed the latest X-ray that was taken and realized that Nadia was a lot bigger at that time (she was still really swollen) and that at the time of the x-ray, her belly had been pushing up greatly on her chest. Now that her belly is normally sized and not pressing on her chest, her heart is lowered a bit and the PICC line was sitting on the very top of the where it should be. Through another sterile procedure, they worked the line a bit deeper into her heart to the ideal location.

Audiology was just in to conduct another hearing test. Unfortunately, she failed the test in both ears again. At this point a longer and more conclusive test will be scheduled. This test has the ability to bypass any fluid in the ear to make sure that the “hearing loss” is valid. It lasts about two hours and will test the level of loss Nadia has. It can determine that exact frequencies she can and cannot hear. We know that Nadia can hear some because she responds to noises, so this next test will set us up for whatever is next. She will probably have an ENT (ear, nose, and throat) doctor to visit on a regular basis. If she does have to be taken on by ENT, she will have hearing screens at every office visit. If they do not deem that she needs an ENT doctor, then she will have another diagnostic hearing test at six months to assess the damage brought on by the heavy antibiotics she has been given off and on since birth. Only time will tell and hearing loss is a bridge we will cross if we have to. Again, I request your prayers that Nadia failed this test due to fluid buildup in her ears and does not actually have hearing loss; I ask you to pray that if it is God’s will that she does suffer loss, that he give James and I the guidance we need to teach her and encourage her to her greatest potential.


Tuesday, April 26, 2011

Morning doctor conversation audio + new photo

Summary: blood stuff is mostly getting better, but her white blood cells have increased, so we're watching those closely. Also, Patient Affairs spoke with Dr. Mace about our problems from last week.

Bonus: photo from this morning! This a bear who helps to hold Nadia's pacifier in place. I have named him Chewy.

Monday, April 25, 2011

Audio from a biopsy conversation from this morning

if you are interested. Summary: we are probably not going forward with a biopsy today. We may not ever do a biopsy, if Nadia's tummy stays down and she keeps increasing her milk intake. The doctors are not convinced enough that Hirschsprung’s disease is present to risk rectal bleeding after the procedure.

Saturday, April 23, 2011

Happy Saturday

Saturday April 23, 8:45pm

All in all it was a pretty boring day today for Nadia.

She ate every three hours with mixed results. Either she really wanted the bottle and would furiously clamp onto the nipple or else she acted like she had no desire at all and would gag on the nipple when we kept trying to get her to take interest. Her intake increased to 10 mL (10 cc) per feeding at 3:00 this afternoon. She has not had a bowel movement since she started eating yesterday morning but is passing gas (she hasn’t had a poopy diaper for so long I don’t remember when the last one was). We’ll continue to take it slow.

Nadia did receive another red blood cell transfusion this afternoon between 3:00 and 6:00. Some levels in her blood were low and she was very pale. It was routine and not brought on by any emergency, although we question if she hadn’t lost so much extra blood through her side bandages the day before last if she would’ve still needed the transfusion today. To put her transfusions into perspective: she gets 25 cc of red blood cells each time which is less than an ounce (thus soaking through 1 ½ inch square bandages with precious blood so many times in a 12 hour period seems to Nadia’s non-medically trained parents like it would’ve taken a toll).

Both James and I met Sofia, Kate, Anissa, and Grandma Sandy at the Zoo today to take part in EggStravaganZoo. Sofia caught onto the Egg Hunt with very little prompting. James and I stopped by the gift shop and café to say hello to my coworkers and then took Sofia to play in the Tot Lot (toddler only section of the jungle gym). We were all sweaty by the end of the morning. Sofia is the only one to have escaped sunburn thanks to the sunscreen that Mommy and Daddy chose not to wear. We had a really fun morning with Sofia. Happy Easter, sweet girl! We love you.

I hope everyone enjoys a wonderful holiday with family and friends. God Bless.

Friday, April 22, 2011

Bring on the Breast Milk

4/22/11 5:30 PM

Nadia’s weight was 5 pounds 13 ounces this morning. Her belly girth is down to 32 ½ centimeters. She looks like a normal proportioned baby again (a tiny one).

Nadia’s INR is 1.2 which is great! Her platelets are low and thus they decided to hold off on the biopsy again. They don’t do them over the weekend unless it is an emergency, so we are now hoping for Monday. The reasoning on waiting is that if it does come back positive for Hirschsprungs, the next step would be surgery to correct it. Since her blood work is not ready to go into the operating room, why do the biopsy?

Our PCP spoke with HemeOnc to ask if the Chemo would be still affecting her platelets level. They could not give a definitive answer. Her Chemo could affect her blood for seven days past treatment, so it is possible that she will start to make more platelets on her own this weekend. If she does not, then a platelet transfusion would be possible to get her through the biopsy on Monday. Time will tell…

The surgeon assigned to our case today does not feel like Nadia has Hirschsprungs. She understands why the biopsy is needed to rule it out but doesn’t think it is likely that she actually has it (I agree based on my research and the mixed symptoms Nadia shows, but I am nowhere near a doctor). She cleared us to start feeding Nadia again! We have to start small and she has to be monitored very closely for any problems: belly dissention, vomiting, fever, etc. For the first 24 hours, we can give her 5 ml every 3 hours (this amount fills just the tip of the bottle nipple). The first two feeding were Pedialyte, all subsequent feedings will be expressed breast milk. If she tolerates that well for 24 hours, we can increase the amount to 10 ml per feed and then 15 ml per feed on Sunday. This is exciting. We have so far fed her the Pediatlye and she is showing no bad signs yet (other than still being hungry and angry that she’s getting just a tease).

Sofia came to the hospital today to visit her sister for the first time. She was very excited to see the “Boby” and wanted to rub Nadia’s little head lovingly. It was very sweet to watch. I loved having my entire family together in the same room, even if it was a hospital room. Once Sofia got bored, James and I took her outside to play in the play patio. It was a very nice afternoon. I love both of my girls so very, very much.

Mistakes are increasing in frequency

I spent a wonderful afternoon yesterday with Sofia. Grandma Sandy had already put her down for a nap by the time I got to the hose, but I couldn’t resist taking her from her crib and pulling her into bed with me. I had hoped that she would stay asleep but she didn’t. We played hide and seek in James and my bedroom, ate lunch, and played some more.

At 4:30, I got a call from the hospital. The wick in her side (sticking out the hole from her pertoneal drain) was never a wick, it was a piece of the fat surrounding her belly that had worked its way out of the hole. This is what was causing all the bleeding and the increased bandage saturations the night before. It is also why Nada was so fussy and inconsolable: she was in pain. The Doctor on the phone needed my consent to do the procedure to knot off the piece that was hanging out (to stop the bleeding), stuff it back into even and stitch it shut.

I hit the road to come back to the hospital and called James. I was pretty livid because we had brought this concern up the night before and even requested a doctor to come and look at the wound. She never had a wick so why did everyone who looked at it for 19 hours think that’s what it was? James met me back in Nadia’s room (he had been at school all day) and we shared our concerns with the charge nurse. She agreed that we are parents and have the right to question why it happened. The mistake was not detrimental to Nadia’s condition; however, since everything is charted we didn’t understand why the wick wasn’t confirmed since Nadia’s bleeding had picked up, it didn’t look anything like gauze, and we as the parents showed concern.

It seems that our night nurse made the assumption that it was a wick and then passed it off as fact in all of her bedside reports. The charge nurse we met with yesterday when we got back researched the situation and asked the surgeon that had checked Nadia the previous night to come talk to us. He did and denied that there was anything sticking out of the wound when he checked her at 1:30 am. So…James and I first saw it at 10:30, asked our nurse about it and were told that it was a wick, at 11:00 pm we requested the doctor to come look, he ordered platelets and asked for a surgical consult, at 1:30 am the surgeon says it wasn’t there and the wound looked fine, by 7:00 am when I helped changed the dressing it was back, at noon a different surgeon finally thought to question what the “wick” was made of and why the wound was bleeding increasingly more by the hour, by 5:00 pm Nadia was being given morphine to ease the pain of the procedure to stick it back in. To me it would appear that the surgeon never really looked at the wound; I believe he came into the room and checked the dressing, probably inquired (to the night nurse who made the wick assumption) as to how many times the dressing had been saturated with blood and changed, and left. However, it is his word against my common sense and timeline deduction so it will get me nowhere to push the issue. I know mistakes happen, I can easily forgive them if they are owned up to. They are much harder for me to forgive when they are lied about (he told me that these things do have a habit of coming out and going back in on their own so that’s what must have happened).

I noticed when I first returned to the hospital yesterday evening that Nadia’s oxygen had been turned up; she had been on ½ liter and was now at 1 ½ . In the frustration of the “Missing Wick Fiasco 2011”, I forgot to inquire about the oxygen increase. When I left for my Sofia play date, they were wheeling Nadia out of the room for an x-ray so they had unhooked her from the room oxygen and attached her to a tank under her bed. I remember one of the nurses saying that she needed a low flow nozzle, when I got back the nozzle had been switched to low flow and pumped up to 1 ½. Apparently that was a mistake. The bedside reports from shift to shift reported that she was only on ½ while her chart reflected that it had moved up to 1 ½ by the 3:00pm Respiratory Therapist Check up with no explanation as to why noted. Today, they weaned her back down to the ½ that she had been on and continued weaning; she is currently breathing only room air.

Thursday, April 21, 2011

Still pushing through

4/21/11 9:45 am

Nadia is still doing pretty well but did cause her parents some concern last night. She kept us awake a lot as she was seemed so uncomfortable. The stronger she gets, the more she realizes that she’s really hungry, and the more pissed she’s getting that no one is helping her eat.

James and I left the hospital for an hour or so last night so he could download some things he needed for class today. When we got back we noticed that the dressing on her side (from the former belly drain) was completely saturated. The nurse changed the dressing and showed us the wick (some gauze packed into the hole to allow continued draining), she seemed unconcerned that the dressing had soaked through. I held Nadia for 45 minutes and went to change her diaper before putting her back into her nest for the night. The dressing was already soaked through again and had leaked into her diaper and onto the blanket I had wrapped around her while holding her. We called the nurse and requested that the doctor on duty come look at it. Admittedly, James and I may be a little gun shy at this point, but it concerned us that her coagulatives were up yesterday morning and she seemed to be bleeding, the wound dressing had not been saturated with blood since they removed the tube 36+ hours earlier, her belly girth had increased slightly, and they had given her a blood transfusion earlier in the day because her counts were not right. The attendee came into the room and said that the drainage was a good thing but that there was cause for concern that it was so tinged with blood (remember the drainage from her belly tube was yellow, this was very dark red). He ordered platelets and had Surgery come look at it (they said it looked fine but that a stitch could be added if needed).

Nadia was pretty inconsolable throughout the night. She never really fell into a deep sleep. She’d drift off only to awaken 20-30 minutes later screaming out. The pacifier made her angry when it didn’t produce any milk. Sometimes music would help, sometime the paci would help, sometimes holding her would calm her, sometimes stroking her hair would get results…sometimes not. Extra prayers requested for James today who went to school this morning after being stressed and awake all night trying to calm Nadia.

This morning, Nadia’s weight is down to 6 pounds, 13 ounces. Her belly girth is down t 34 ½ centimeters. The dressing is still a concern. They are not going to do the suction biopsy again today. James expressed our concerns to Dr. Mace this morning in rounds, who seemed surprised by the amount of blood coming from her side’s wicking. Back when her drain was first put in, they had warned us about the fluid coming off too quickly and her internal organs not settling correctly. It was this that concerned James the most since Nadia is obviously much more uncomfortable than she has been. Dr. Mace listened to the concerns and agreed that it is worth looking into. She ordered another x-ray and ultrasound to be able to see what is going on inside her (normal looking at 34+ centimeters) belly. She also ordered some extra labs be done on her blood this morning to see exactly what’s going on with her clotting.

I am leaving the hospital today to spend some time with Sofia. The nurse will call me with any emergencies or simple updates. I will update tonight when I get back to the hospital as to what we find out.

Please pray for Nadia’s comfort and peaceful rest as well as Daddy’s ability to remain alert and focused as he finishes this semester with so much else going on.


Wednesday, April 20, 2011

Nadia is on top of the world (Vanderbilt's 8th Floor)

4/20/11 3:30 PM

We did get moved late yesterday afternoon. Nadia now resides on the 8th floor at Vanderbilt Childrens’ Hospital. She is out of the Critical Care Unit which is a huge confidence booster that we really are moving in the right direction!

They removed both her peripheral IVs (head and foot) since she wouldn’t need them anymore as she still has her PICC line for the TPN and lipids. They have removed the Sodium from her TPN to test a theory about her liver (it is a long shot and something I don’t fully understand, if it produces results I’ll find out more).

The team decided she was stable enough to go back to blood tests every 24 hours and that it was ok to remove her Central Line. She is currently off antibiotics.

She went 72 hours without receiving any blood products (another reason they were comfortable removing her extra IVs). They did begin another red blood cell transfusion this afternoon as she fell below her required mark set up by the Hematologists for iron. They immediately wished they hadn’t pulled the 2 IVs because it is not ideal to run blood through the same PICC as nutrition. An IV Specialist came in to see if she could put it a new IV but didn’t see any veins that would support it and recommended getting the approval to temporarily stop the TPN/lipids to do the transfusion through the PICC.

Nadia’s hypothermia is much better. She has a difficult time regulating her body temp. Anytime a body falls below 95 degrees, it is considered hypothermia. Nadia reached that point once in the Newborn Nursery a day or two after birth, and at least twice in the PCCC (once was the night before last).

Her INR was down to 1.6 yesterday but slid up a bit to 1.8 as of this morning. Based on yesterday’s blood results, they were going to do the suction biopsy today for the Hirschsprungs Disease. Since her coagulatives increased today they decided to hold off again. Nadia can’t be fed (through her gut anyway) until the biopsy is done to rule out Hirschsprungs.

The cultures taken from her belly drain grew nothing over the 72 hours of study. Great news for it shows lack of infection or parasite, bad news as it doesn’t offer any clues as to what is going on with her distended belly.

Nadia’s belly is slowly decreasing. It was 45 centimeters at the worst, yesterday morning it measured 42½. Overnight it flexed between 39 and 40 centimeters.

Nadia’s weight went down a bit again (she’s still peeing out some major heavy diapers) this morning to 7 pounds 3 ounces (down almost 6 ounces from yesterday). She is getting close to a natural size again (except her belly); I think most of the extra liquid is absorbed and peed out at this point.

Nadia is still on ½ liter of oxygen coming in through a nasal canella. She keeps pulling it out of her nose and it doesn’t affect her saturations that much so I don’t think she really needs it until she gets upset and forgets to breath. Her breathing still sound ragged and rattley which they tell me is from the damage the breathing tube does on the way in and out. Hopefully it will start sounding better soon.

All in all it is another good day. It is time to wait and see. Minor improvements every day is better than worse news and new symptoms.

God Bless!

Tuesday, April 19, 2011

We might be moving

4/19/11 9:00 am

Nadia had another good night. She is definitely moving in the right direction! Thank you to all for your prayers!

This morning her weight was 3.4 kilos or about 7 ½ pounds. She has lost 2 pounds of excess fluid since Saturday. Since the drain in her side wasn’t pulling anymore fluid from her belly, they removed it early this morning.

The only issue she had overnight was regulating her temp. She did drop to 95 degrees at one point so we bundled her up and covered the top of her head with a blanket. She stayed cool all night finally maintaining a temp for several hours of 97 degrees.

Her catheter got pulled out a bit last night when the vial that was collecting her urine slid off the bed. They will probably remove it completely later this morning. She doesn't need it anymore now that the Lasix has got her peeing like a champ.

The PICC team came in this morning and changed the dressing on her PICC line. Since the PICC line is still so strong and she is doing better, they are also discussing removing the Central Line in her groin. They will make that decision this morning in rounds.

Nadia’s belly girth is down a bit this morning to 43 centimeters, another good sign.

All of these things combined mean a probable move to a different floor today and out of critical care. They will make that call during rounds this morning as well.

I asked this morning what the difference was between the NICU and PCCU. NICU is a “clean” environment, meaning that they only take babies directly from birth (usually preemies or babies with birth defects and problems that present immediately after birth). They have not traveled home to pick up outside contaminants. PCCU is intensive care for babies and children up to 18 years of age that have left the hospital and went home. PCCU deals with infections and traumas as well as defect care. I thought I would share the info in case anyone else was wondering.

Keep praying for improvements. We thank you, Lord, for bringing us this far!

Monday, April 18, 2011

Nadia's Good Day

4/18/11 9:29 pm

Nadia had a great day! She made it through last night and was starting to diurese really well (which continued throughout the day). Her belly girth was still high measuring between 44 and 45 centimeters throughout last night and today; however, it was not as tight as it had been previously.

James and I came into Nadia’s room to wish her happy morning and saw a sweet little pink hair bow on top of her head. The night nurse, Amy, had given it to her; it brightened my morning and I believe that simple act got Nadia off to a good start on her day of improvement. The bow is too cute. She doesn’t have enough hair to wear it as it is meant to be worn, so Amy clipped it to her head IV and it works just as well. Thank you for the extra kindness, Amy.

The team was very pleased with Nadia on rounds and recommended that she be put on a C-Pap trial to see if she would tolerate breathing completely on her own. She did great on the trial and at 10:00 am they decided to take out her breathing tube. They monitored her blood gases very closely to make sure she was solid. As I write this recap of the day, she is breathing on her own with a liter of O2 to help support. Yeah! Go Nadia!

Early this afternoon, they took the line out of her foot that was monitoring her blood pressure. One less wire sticking out of Miss Nadia.

She continued on her Lasix all day and peed and peed and peed. In the hour between 8:00 and 9:00 pm, she peed out 70 ml! They decided to pull back on the dosage of Lasix and make it just a drip about an hour ago. Her puffiness has steadily diminished today. She is not back to her normal size, but much closer. The only thing that hasn’t gone down is her belly.

Nadia does have some blisters around her taped areas (IVs, bandages, etc.). Her skin was just so filled with fluid that the slightest rubbing would cause it to blister and fill with the same yellow liquid that was coming from her belly.

Her belly drain is still in but is not really pulling any fluid. We did not see any surgeons today but they may have stopped in while we were out of the room.

HemeOnc doctors stopped by today and told us that Nadia’s blood is clear of blasts. They do not see any present after her Chemo. By the way, her last dose of Chemo was this morning at 6:00 am. Another victory for today.

Her INR goal of 2.0 has been met. She's not at normal coagulative levels, but she is at Nadia's normal :)

Nadia spent several hours awake today. It was wonderful to see her eyes and spend some time with what felt like a real, live baby. She responded to us and fought really hard to stay awake for as long as she could. The first time she was awake for over an hour even though she was still on some Fentanyl (sedative) for extra comfort. Tonight, she was sedative-free and stayed awake for a couple of hours straight. Aunt Anissa visited during the awake time tonight and got to bond with Nadia by playing some compilation CDs she made especially for her.

James and I feel very blessed to have today. We pray for more days of slow, steady improvements. God Bless.

Sunday, April 17, 2011

Nadia's Scary Saturday and Sunday

4/17/11 9:30 am
I have decided to start each update as a new post since we will be staying in the hospital for a while. When we first came, we never imagined that we would be here for two weeks with no discharge in sight so it made sense to just continue to update the same post. That no longer makes sense.
We did not move floors as we thought in the last post; Nadia actually took a turn for the worse. James and I got a call at 3:00 am on Saturday morning in our sleep room telling us that Nadia was having severe trouble breathing. They needed to intubate. We immediately rushed from our room and had to wait outside the ward until they finished the procedure. Dr. Holmes came out and explained that as her stomach kept increasing in size, it was becoming more and more difficult for Nadia to breathe. A blood gas showed that she needed immediate assistance. The additional oxygen flowing into her nostrils had been enough to help until this point, but was no longer cutting it. They had to put a breathing tube down her throat and into her lungs. This took two attempts and she fought until they gave her a drug to temporarily paralyze her. She was put on fibrinogen to keep her sedated so she doesn’t fight the tube. The breathing tube has a built in suction device that our nurses manually do once an hour. At first, the gunk they would pull from her lungs was bloody or tinged with blood (from the entry of the tube) but now it is mostly clear. Because her mouth is taped open, the nurses do mouth care once an hour to keep her tongue and mouth lubricated and moist. They needed more access to Nadia’s system so they put in two new IVs while they were dealing with the middle of the night emergency: one in her head and one in her foot.
The doctors said that her breathing trouble is because her tummy has gotten so big, it was pushing on her lungs and not allowing them to fill or clear completely. Again, they compared it to being pregnant (how toward the end of a pregnancy a woman cannot catch her breath because the baby is pushing so high in the abdomen). Obviously, Nadia’s issue is more severe than the pregnancy example. Her tummy girth has continued to increase but thanks to the breathing tube she is stable. Her tummy girth was 40 centimeters when we went to bed on Friday night.
Dr. Holmes was the first to mention DIC as a possibility as to why Nadia’s blood is not clotting. Disseminated intravascular coagulation (DIC) is a complex systemic thrombohemorrhagic disorder involving the generation of intravascular fibrin and the consumption of procoagulants and platelets. The resultant clinical condition is characterized by intravascular coagulation and hemorrhage ( They FFP (fresh frozen platelets) that they had been giving Nadia were not getting the results they desired in improving Nadia’s INR (International normalized ratio, a laboratory test measure of blood coagulation). INR should be below 1.0, Nadia’s started at close to 3.0. Each FFP lowered it some but she only got down to 2.6. They added some vitamin K through her IV to help lower her INR. As of last night, she had an INR of 2.3, today it was at 2.1, the immediate goal is to get under 2.0. (Later in the day yesterday, Dr. Allison Peroskie (hemeotology) asked that a blood test be done immediately after some FFP and it showed that her INR did drop significantly with the fresh plasma,but that the number increased as time went on. She doesn’t maintain the INR as time goes on…mystery. Dr. Peroskie does not feel that DIC is reallyour problem but can’t yet explain what is).
Nadia was uncovered for about 2 hours while they worked on her and put in the breathing tube. Her temp dropped significantly. When we were allowed in the room at 4:00, her temp was only 93 degrees. They put another tube down her nostril that is able to monitor her temperature. Nadia’s blood pressure has had moments of being high but always stabilizes; she has never been put on any meds for blood pressure (much to the surprise of her entire team as they would expect it with this much going on). This is encouraging that she has a strong heart. Nadia has continued to have trouble regulating her temp. She has warming lights about 2 feet above her bed that can be turned on as needed to raise her temp. The room temp is 80 degrees to help keep her comfortable.
The surgical team came by very early Saturday to consult. The PCCC (pediatric critical care) doctors convinced them to wait for a CT scan. They also ordered an ultrasound of both belly an head (to check brain response), a GI consult, and another x-ray. The CT scan showed that her liver was slightly large, but not nearly as large as expected. It also showed no blockage or abnormalities in her bowel which held off surgery and yet another strike against Hirschsprungs Disease. The CT scan did show that she is completely full of fluid. Completely full of fluid,no air present at all in her abdomen. Her lungs had fluid in them, especially her left one. This was overflow fluid from her abdomen. The fluid was solid all the way down, well past her bladder and kidneys (which looked ok). Her liver was surrounded by a ring of the mystery fluid. I say mystery fluid because the doctors do not know what it is or what is causing it. The medical term for this is ascites. Defenition according to Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm. Ascitic fluid can have many sources such as liver disease, cancers, congestive heart failure, or kidney failure. It is a mystery because her liver is not functioning as well as it should but is not failing, her heart is good and not the problem, and her kidneys are ok and not the problem. So…the textbook things that cause an ascites have all been ruled out as not being the cause in Nadia’s. Nadia’s liver: slightly enlarged, synthetic functions not functioning properly (the protein producers). They did a doppler ultrasound of her liver to make sure that the flow was moving the right direction and it was.
It was then decided that Nadia would have a catheter inserted into her belly to drain the fluid. Since she is high-risk due to her clotting issues, the surgical team was called in to insert the catheter. Before this procedure, the PCCC doctor wanted more access to Nadia in case of emergency. He asked James and I to leave the room and took two hours to put an Art Line into a major artery in her groin. This line is different from the PICC Line as it goes into bigger vessel and can handle larger doses. He inserted something into her toe to monitor blood pressure and also ran a catheter into her bladder to pull and collect urine output. Measuring all output is now more important than ever as we don’t want to add even more fluids. It becomes a tight rope as so many of the things needed to keep her healthy have significant volume. The surgery team came back and put the tube into her abdomen. They pierced her belly with a long needle, threaded a line through the needle, withdrew the needle, and then threaded the tube over the line. The tube was sewn into place on her side and left to drain. They pulled off 60 ml of clear, yellow fluid during the procedure. She started draining really well. They warned that the tube should be clamped off for outputs more than 30 ml per hour to prevent more problems. Her internal organs are floating around in this fluid and need to settle back into the correct positions slowly. They sent some of the fluid off to the lab, which will take 72 hours for the cultures to grow to look for bacteria, parasites, etc. We do know that there were no Leukemia cells in this fluid which is great! We also know that the fluid was clear and not cloudy or mucky which would be obvious infection. The Oncology Pathologist that was able to see no Leukemia cells in the sample only noted white and red blood cells.
Blood products were ordered: more FFP, cryoprecipitate, red cells to replace what keeps being taken for tests. A lot of volume but needed to keep her going.
Nadia is on three different antibiotics: Ampicillin, Gentamiacin, and Fentinol (attacks fungal infections). The Gent levels are checked often as this antibiotic can hurt the kidneys if abused.
Nadia’s belly catheter stopped draining last night at midnight. No one really knows why. It could be plugged, it could have cleared all the fluid in the immediate area, maybe some of her organs have shifted and blocked the tube. They don’t know. What we know is that her belly girth has continued to climb as has her weight (not good weight, weight from all the excess fluid). Her girth last night (Saturday) at 6:00 was 42.5 centimeters, which has continued to climb to 45 centimeters by 2:30 this afternoon. Nadia’s weight went from barely 5 pounds two weeks ago to 7 ¾ pounds yesterday morning to 9 ½ pounds this morning. Nadia’s breathing is good. Even though her belly girth is increasing, her respiratory compliance is good (they even adjusted her levels down today). They are watching and making sure she breathes 28 times per minute. They started her on Lasix, a med that pulls fluid from the limbs (which she responded wonderfully to) and Albumin, which pulls fluid from the blood vessels. These meds make her pee which at this time is her only output (she is getting out 20-25 ml per kilogram per hour, a healthy infant would only pee out 0.5-1 ml per kilogram per hour). She needed some potassium and some protein as well.
She is very swollen and puffy. Everyone here keeps telling us today to wait and watch for the next step. Surgery does not want to adjust/remove the belly tube as they don’t feel it is worth the risk since she is breathing so well. They will wait for her INR levels to level out so she can clot. They feel like it is a victory that she is maintaining her success following such a rapid decline the night before last. They did take her off the sedation to make sure she would respond on her own, she did wake up a bit and even opened her eyes. She is exhausted from her ordeal and from the Chemo but is still feisty enough to wiggle around when she’s being messed with which is exactly what we all wanted to see. They believe that her body may just absorb the excess fluid on its own.

Friday, April 8, 2011

Some Photos

I thought I would share some photos. Enjoy our beautiful family :)

Mommy multitasking with both girls
before our hospital stay.

A sweet moment in the hospital

Nadia's Breathing Treatment Mask

One of the many blood draws. Note her Jughead hat
on the right side of her head (protecting her IV).

Daddy feeding Nadia in one of his inappropriate shirts

Nadia getting some help from oxygen

Please meet

Nadia Hope Peach

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

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.

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.

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.

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:


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.

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.

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.

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,