Emma was born on September 13. She came all on her own at 37 weeks, a whopping 7 pounds even. We have been twice blessed with easy babies. Maddie was so easy, and Emma has been easy as well. It is a joy to be their mom, and I believe that being a wife and mother is my true calling. Of course it is not always easy; but, I wouldn’t trade it for anything! We were home for 11 days, acting like a crazy normal family. J had just gone back to work. It was a busy Monday with an early morning Doctor appointment and photos of my girls in the afternoon.
We were on our way to take newborn photos of Miss Emma and have some special sister photos taken with Emma and Maddie. I was so excited about getting the photos taken, what sweet memories to capture with both of my girls.
I had noticed in the morning that Emma’s feet looked a bit swollen. I rubbed on them a little and they went down, I just figured it was somehow positional from the night and being swaddled. My first outing with both of my girls- I had a follow up doctors appointment at 9. I knew I would have to get up early to get everyone ready, fed, packed and in the car. Early is definitely NOT my natural inclination- I am more of a barely on time to running habitually 10-15 minutes late kind of girl. Finally, I was actually dressed, Maddie was dressed, Emma had been dressed and changed x2 and everyone but me had been fed- the car was loaded and I had the girls ready to get in the car. It is now 8:30. Umm, duh. Taking the kids by myself- a 2 year old and a new born- through a parking lot and into a doctors office. My hands would be full: infant carrier-check, diaper bag-check, Maddie-check. Where is my stroller??!!! UGH. Maddie and I found the stroller covered in dust, old spiderwebs and random leaves. I am not putting my newborn in a dirt infused, spider infested stroller. Clorox wipes, yes please! 8:45. Did I mention we live in the boonies. Maddie helped me clean the stroller and we are finally on the road. Aside from being my usual, ‘punctual’ self, our first outing was a success.
Afeter making it home just in time to turn around and go again, I began to gather things together for our next outing. I couldn’t decide (now who is really surprised by this!) what to bring for the photos. In true Meredith style, I packed the whole back of the car full of stuff, clothes, various cosmetics and paraphernalia. By the way, family trips are brutal for us. If we could find a way to pack the kitchen sink, we would!!
One last diaper change before we head out. Emma’s legs were swollen, and her hiney had a swollen mass-like place on it. It was now noon. I was concerned and thought I would see if it was still that way when I made it to town. Momma worry had set in. I was crying and had already left a message with the pediatricians office by the time I made it into town. Of course, they were at lunch. I called my Aunt, who is a nurse, she came by to check out Miss Emma. She agreed that it was alarming and encouraged me to head on to the pediatricians office. I called them again to see if I could talk to the nurse. After the receptionist tried to give me the whole ‘what is your babys name, date of birth, phone number, reason for calling… someone will get back to you before the end of the day’ spiel, I had had enough. Something along the lines of ‘you don’t understand, let me tell you how this is gonna work. Tell them I am on my way’ came out of my mouth. We didn’t have to wait very long and the pediatrician was just as alarmed as we had been. Emma had gained 11 ounces in fluid since her doctors appointment 3 days ago. She ordered a kidney workup and said that we should pack our bags and be ready to go to Dallas while we waited on results. Little did I know that these were the first of many words I did not ever want to hear.
The photo session I had so eagerly anticipated, cancelled.
Emma did not care for having her blood drawn and was quite worn out afterwards. We left and ran one errand in hopes that she would have a urine sample ready for them to collect when we got back. No urine, but they reattached the collection bag. Man, she was really zonked. I got the girls loaded in the car to go pack and made it just north of town when I realized that Emma hadn’t even cried when they took that sticky urine bag off of her. That wasn’t just zonked, it was borderline listless and non-responsive. The pediatricians office advised me to just go on to the ER. The car turned around automatically and off we went.
J was on his way home from South Louisiana. I know he was feeling that he couldn’t get home fast enough.
It is an indescribable feeling getting your 2 year old and newborn out of the car and walking into the ER by yourself. It didn’t take long and we were in the back, in our exam room. Family came and helped out with Maddie. Our results were back, it looked like kidney issues. They were paving the way for us to go to Children’s in Dallas. The transport team that came from Children’s was great. They came in, got an IV started and took charge of the situation. We flew by fixed wing to Love. It never ceases to amaze me how the time passes when you are in a hospital. It was close to midnight by the time we got to Dallas. Emma was admitted directly into the NICU. J met us there and we had a ton of family waiting on us to see what was going on. We were taken care of by a team of doctors and nurse practitioners. They were and continue to be great!
That night and all the next day, they ran tests. The Nephrologist met with us and talked about the things that it could be. The worst of these was essentially kidney failure and eventual transplant. I now have a new standard for things a parent never wants to hear. Emma also had some structural abnormalities in her kidneys. They were large and both kidneys were duplex kidneys. The doctor told us this was mostly a coincidence and is independent of her current issues. I was able to hold her for a short while. J and I were consumed by such emotion. This had all been such a shock. Emma was seemingly fine 2 days before.
Wednesday, September 26th, day 3
In the early morning with the results of additional testing in, it was confirmed that Emma has congenital nephrotic syndrome. This means we are transplant bound, over a very rocky road that will likely last years.
Surgery was scheduled for that afternoon. Emma would have a main line and a peritoneal catheter put in. The main line was for a stable IV access and the peritoneal catheter was for her peritoneal dialysis. During surgery, she had some bleeding in her abdomen. They had to open her up and pull her intestines out to try and find it. The surgeon found it. She was all closed up, extubated and ready to go back to NICU and they noticed blood coming out of her catheter. We had already met with the surgeon once and were on the way back to meet Emma in the NICU when we got the phone call. There were issues and they were taking her back to surgery. Emma was put back under, intubated and her intestines came back out, yet again, to find and stop the bleeding. This time there was no bleeding to be found. She was cleaned out really well and when they were satisfied that she didn’t have any active bleeding, she was sewn back up. We visited with the surgeon and then we met her in the NICU. She was still intubated. Emma had lost so much blood, she required a blood transfusion. This was her first of several.
Thursday, Sept 27, day 4
The goal was to not start the peritoneal dialysis until everything had a chance to heal. Ideally, this is about 10 days. Emma still continued to retain fluid as her urine output was dwindling. The rest of her labwork was all over the place. She was not as responsive as she should have been to the lasix and albumin. They would have to start peritoneal dialysis just shy of 24 hours after her surgery. It took several hours to get the orders ready and then get the supplies and personnel together to get her started. There are great risks for using the catheter so early. Infection, slower healing, leaking and creating extra scar tissue are some of these risks.
PD works through osmosis and osmotic pressures. They put a glucose based fluid in her peritoneal cavity and let it sit or dwell for a given period of time. This fluid draws out the toxins and waste during a dwell time. Then it is drained off and you start the cycle again. It essentially does the job of your kidneys.
We were on pins and needles for the first couple of cycles. It worked! Her little body responded really well to the PD. At this point, she was still retaining fluid. Emma was up 2 pounds from her weight on Thursday. That is a lot of fluid retention.
Emma’s blood pressure had been creeping up and with the first few cycles of dialysis, it came down and she pinked up very nicely. It was a nice change from seeing her so pale. The PD was on a 60 minute cycle and was to continue around the clock until she could graduate to the next step of PD.
Friday, Sept 28, day 5
Emma continued to respond well to the dialysis. It was actually drawing quite a bit of fluid off of her body. By Friday afternoon, you could visibly see a difference. Emma’s blood pressure was still a bit high, which is part of kidney failure and not really alarming. They gave her some BP medicine and then waited to give another dose of lasix and albumin. Then hopefully they would take her off of the ventilator.
Her little feet were back to a normal size. Her legs too. When I pressed on her forehead I could feel bone instead of just swelling and fluid. It is the small things that make you feel better at this point.
I visited with the Nurse Practitioners about putting together a primary care team for Emma. I would get to pick some of her nurses to get a little more consistency in her care.
They pulled her off of the ventilator in the afternoon. I was able to hear the first normal baby sound, since Wednesday. Yet again, I never thought I would feel such emotion hearing her weak little cry. It was music to my ears and really ministered to my heart. Emma had her first feeding since Monday evening on Friday afternoon. She took 9 ml from a bottle and ate like she was starving.
Saturday, Sept 29, day 6
Emma continued to do well inspite of a few setbacks. Her dialysis catheter began leaking from the entrance site. They reduced the amount of fluid they were using to hopefully reduce the belly pressure. Due to the leaking, the bandage at the site quickly became a huge risk for infection. They would need to find a solution to her leaking and her bandage issue fast. Emma’s BP continued to rise and they added a 3rd BP med. She also continued to get a small amount of nourishment on a 3 hour schedule. It did my heart good to continue to hear her normal little baby sounds, even if some of them were from being uncomfortable.
Miss Emma started the evening with an inconsoleable crying fit for almost 2 hours. She got so upset, she spit up/threw up after her midnight feeding and then her breathing became shallow and a bit spastic. Thinking it had to be pain, she got a dose of pain med at the start of her crying fit. They put her on some room air through a nasal cannula as a precaution. Her bloodwork came back with an elevated white count and low calcium. They had drawn blood and fluids from everywhere to send it for a culture. The results would take 48 hours. She skipped her midnight feed and then was virtually nonresponsive for her heel prick blood tests.
Sunday, Sept 30, day 7
Emma’s spastic breathing continued. The combination of her breathing and her lack of alertness had everyone concerned. She had eaten well at her 3 am feeding but skipped her 6 am feed. They took her food orders away and ordered a head sonogram. Apparrently we were either ruling out or ruling in a stroke as a possible result of her extended cry the night before. Waking up to the sonogram tech wheeling out the machine is not quite the best way to welcome a new day. This seemed like a nightmare. She was also started on a course of antibiotics as a precaution.
It seemed like the whole day had passed by the time we got the results from the head sonogram. It was fine. No stroke. What a relief. I mean there were no words, and if there were, no one was saying them. The doctor suggested it was her blood pressure medication making her sick. Medications were adjusted and we all hoped that was the culprit. Everyone was surprised that the tests hadn’t shown something was terribly wrong, based on how sick Emma had been. Emma was more alert in the afternoon today.
Monday, Oct 1, day 8
Miss Emma had a hard night again. They suspect all of the medications caught up with her at once and caused her BP to drop extremely low. She also had some spastic breathing, presumably pain medication related. They will hopefully never give her that medicine again.
A wound care nurse came by today to look at the spots on her skin. Emma has really sensitive skin and is having some problems with a large space on her neck and possible issues under her arms. The left side of her neck has a huge raw spot on it and it looks almost like a burn. Evidently something at some point in time irritated it a good deal.
The main line(like a big IV port)they put in on Wednesday has two access points. One of these access points has gone bad. They need to be able to give her medications and fluids through both. Now, the issue is how to handle it. Her veins and little access points are limited. Some have been blown and some are just plain too little. They are talking about solutions to repair/replace the access point that has gone bad.
She is swollen again today. She continues to respond to the dialysis; that is good. Emma’s BP and breathing are still recovering. So far it seems that if it can go wrong, it will.
Tonight we learned they are scheduling another surgery for tomorrow. The goal is to repair/replace the port ont the main line that has been clogged. If this doesn’t work, they will put in another main line.
Please pray for the longevity of these lines so that she can get the meds she needs without further procedures.
I was able to hold Emma for the first time since Wednesday. She snuggled right in. Today was stressful for her and really busy. I am hoping and praying for a better night.
Tuesday, Oct 2, day 9
Surgery is scheduled for today. Hopefully the surgery will work.
Emma had a really good and restful night!! Praise the Lord!! They changed up her dialysis cycle to 1 hour from 2 to try and help her swelling.
They finally listened to me about swaddling Emma over using the bed warmer. The bed warmer makes her sweat. The sweat cools her down and then they turn up the heat. hmm. It seems that each shift change we have had to re-invent the wheel. I suppose it just takes a certain balance that is hard to find sometimes. The sweat is a problem because it irritates her skin sores and the sores put her at greater risk for infection. She was swaddled all night and she slept like a champ! I am praying that today is a good day to follow a good night last night!
Surgery lasted about an hour. From about 3 pm to 4pm. They took out her original main line and put a new one in her leg. Obviously, repairing the first one didn’t work. I am praying for the longevity of this new line.
Wednesday, Oct 3, day 10
Miss Emma had a good night. Her swelling is much better today. Her leg, where they put the new line, is swollen and they are watching it closely. The veins and arteries in her leg are in a spasm. This should settle out, hopefully. They are planning on extubating her today and starting her on small feeds.
The big risk now is that her dialysis catheter is still leaking some. The new main line comes out right under her dialysis catheter. The placement of these two makes her at high risk of infection. In surgery, yesterday, they put a gather/purse stitch around the outside of the catheter in hopes of tightening it so it won’t leak.
She will be 3 weeks tomorrow. Right on time, she is starting to be a little bit more awake and alert. My baby girl is growing up, in the hospital…
Thursday, Oct 4, day 11
Emma is doing well for the most part. Today we realized that it is not actually the catheter site leaking any more, it is leaking from her original incision site and the new main line site. Her last surgery left her so good and cleaned up that they scrubbed the fancy superglue right off of her original incision site. They just put more fancy superglue on it to hold that part together and watertight.
The constant leaking is making it hard for her dialysis to work. Hopefully they have the leaking handled now.
Emma is still getting to eat some. Her sensitive skin is still an issue and it is starting to break down in new places.
Friday, Oct 5, day 12
It breaks my heart to tell you all this, Miss Emma has peritonitis. Her dialysis has not been as effective since Tuesday and her drain cultures are consistent with infection. We have been afraid this would happen. They are taking her back into surgery today. This will be her 4th surgery since we have been here. The plan is to take out her dialysis catheter and put a new one in. The new catheter will hopefully have a different exit point from the old one. Additionally they are leary of the longevity of the main line in her leg. That is the blood source for a future kidney and they don’t want to jeopardize the blood source for the future. They are going to put in a third main line and take out the old one in her leg. This main line will be in her neck.
The plan is to let her new dialysis cath rest for at least 10 days. This will give it a chance to heal up. In the mean time, they will be doing CVVH (a type of blood dialysis) through her new main line. The NICU doesn’t do CVVH. We will be transferred to the Pediactric ICU. To top it all off, our nephrologist is on his last day of rotation, today. We will also be getting all new doctors and nurses in the PICU. They have assured me that they will all be fully informed about our sweet Emma. I can’t help but be extremely concerned about this switch.
Her surgery is scheduled for 12:20.
They finally started surgery at 2:30. We almost lost Emma several times today. The anesthesiologist came to pick Emma up and take her to the OR. They decided to go on and intubate her in the NICU to save time. One of the Nurse Practitioners intubated her. It was successful but somehow they lost the airway. They bagged her, her chest did not move. They finally got some air to move and they tried to re-intubate her. This attempt, too, failed. Emma was not getting oxygen. They called a code. They started CPR and chest compressions. Emma turned blue. Her stats were up and down and up and down and up and down again. Finally they were successful in getting her intubated. The whole ordeal was about 45 minutes. At one time, I think I counted about 15 people in the tiny little space that was our room. There were at least that many people all gathered around outside of her room. Doctors, Nurse Practitioners, Nurses, Social Workers and the Chaplain. I was in the room, standing to the side. Jason had gotten stuck outside. We were all just watching the scene unfold before our eyes. At one point, the Chaplain made her way over to me, through the people. All I could think of was ‘nope, we will not be needing you today. no. no. no. not today.’
Jason and I were just stunned, stressed, tense and maybe even a little in shock. This was not happening.
Once the airway was secured, the anesthesiologist looked at us, wiped the sweat from his hands on his shirt and said “that was scary!” He then went on to ask several times if we were sure that we wanted to take her on into surgery today. I think he was extremely reluctant to take her into surgery after such an ordeal. Everyone’s response was YES. There simply was no choice. To delay her surgery was not an option. She simply had to have it and had to have it now.
It is never really a good thing to have the chaplain make a bee line for you, just in case. Not that you wouldn’t want them in the event… you just don’t want the ‘event.’
Emma came out of surgery just fine. The transition to the PICU went very well.
Saturday, Oct 6, day 13
Today was my first day to leave the hospital. I went to the Ronald McDonald house to shower and then we went to eat lunch. Of course, I have been showering… in the hospital, in flip flops and with extra towels so that nothing touches the floor. hmmm. It really might be the simple things in life that we take for granted. Running water, clean showers and bathrooms. Problems of Western civilization… that is for another day.
It sounds horrible, but I was actually comforted knowing Emma was on a ventilator and CVVH. I mean, what parent isn’t more comfortable knowing they don’t have to worry about their baby remembering to breathe? Right?!
Tuesday, Oct 9, day 16
Miss Emma had a relatively easy day yesterday. The combination of yesterday’s and today’s labs is enough to be concerning. Her blood tests aren’t quite coming back right. It seems the hematocrit and hemoglobin are low. She had a transfusion yesterday but overnight her levels are back where they were. They will give her another transfusion. In looking at what can cause the hematocrit and hemoglobin to come back low, one of the things to consider is a leak in her body cavity.
After having a lot of imaging over night, they don’t think she has a leak in her body cavity or a brain bleed. This is good, NO surgery!!
This leaves two options. 1. It is a man made problem that stems from changing her dialysis circuit and having a few other things going on. 2. Her body is essentially attacking her blood. The further blood testing should let us know exactly what is going on.
Other than that, Miss Emma was awake for almost 2 hours this morning. We had quite a nice conversation. I talked and patted her chest and stroked her little forehead and she sucked fervently on her breathing tube like a paci.
Afternoon: Emma is still doing well. Her numbers are slightly improving. The hematologist has come by to look at Emma and her blood. They are pretty sure the drop in her platelets is from the dialysis machine. Just to be sure, they are running a few more tests on her blood. Emma has been alert for several hours and is extremely content to hang out and suck on her breathing tube. She has required minimal sedation so far today.
Thursday, Oct 11, day 18
Emma has been doing well. Everyone is pleased with her progress. She is their favorite patient on the floor! As if there was any question. She is 4 weeks old today.
Wednesday, Oct 17, day 24
Emma is off of the CVVH machine. We are giving PD a try. The best part is that I get to hold her!!! It is the first time to hold her in 12 days.
Thursday, Oct 18, day 25
The PD isn’t keeping up quite as well as it should. They are upping the glucose concentration in her dialysate for the afternoon to see if it can pull fluid off of her. I got to hold her again today! The down side is that while I was holding her, the PD cath site started to leak a little bit. It was just enough to dampen her gauze dressing. Tonight they made the call to try and put her back on CVVH.
Friday, Oct 19, day 26
It took 14 hours to get Emma back on CVVH. Once they finally got the reconstituted blood, Emma clotted the filter in the machine 2 or 3 times. 14 hours after the orders were written, Emma was finally on CVVH. The last two hours on PD resulted in a drain of basically straight blood out of her PD cath instead of a nice, light yellow, clear fluid. We are waiting on blood tests and a few other diagnostic tests. If her bleeding continues, we will have to go into surgery, again. Exploratory surgery is not ideal. I have been having reservations about the seemingly cavalier attitudes of some of the doctors and have started the steps to set up a meeting with everyone today. The new developments seem to have everyone’s attention, and rightly so. Emma is back on the CVVH that allows for more control of her fluid levels. They have stopped the PD. There are risks with staying on the CVVH long term. The PD is her best chance.
Emma’s bleeding has almost stopped as far as we can tell. We aren’t sure what is causing it. She is stable for now and is back on the CVVH. She is still pretty swollen but is tolerating the CVVH fairly well. Praying for a good night and weekend.
Tuesday, Oct 23, day 32
We almost lost Miss Emma again this afternoon. Her potassium spiked to deadly levels and her heart rate dropped drastically. They had to resuscitate her- CPR and several minutes of chest compressions and several doses of epi. They aren’t sure why, or what happened. She is back on the ventilator and is stable now.
Around 10, Emma’s BP started dropping. It was hard to get it to respond. Her BP didn’t respond to fluids being pushed, no response to epinephrine. It would just raise her HR but not her BP. After 3 hours, the doctor sat down across from me and told me that she was out of tricks. She was going to give Emma some blood as a last shot at correcting her BP, if that didn’t work there was nothing she could do. I called J and told him it was time for him to come back. His mom drove back with him. The rest of the family that was up here came to sit, wait and pray. I have never been so glad to see J as I was that night.
Thursday, Oct 25, day 34
Miss Emma continues to have trouble. She is leaking fluid out of her blood vessels. This causes her body to swell and her BP to drop. With a lower BP, it is becoming problematic for the dialysis to pull fluid off of her body because that will also cause her BP to drop. When the BP gets low the way to get it back up is to add fluid or blood which in turn leaks and causes her to swell. It is a cycle.
Emma now also has fluid around her heart which makes it harder for her heart to work like it needs too. She has been on several different broad spectrum antibiotics since Tuesday. The idea was that if any of her cultures had anything growing, it would get it. Today we are continuing to have BP issues. If she has trouble and giving fluid or blood doesn’t work, they will insert a tube into the sack around her heart and drain the fluid. This is a temporary fix as long as she continues to leak.
They aren’t sure what is causing her to leak continually. Low Albumin is a suspect but not necessarily acting on its own. Without knowing what is causing it, the problem becomes hard to fix. She could stop leaking on her own, there is no way to know.
Please keep praying for our little fighter. Emma is such a joy and a blessing to us.
Tonight was the fall costume festival at the Ronald McDonald house. They had face painting, a photo booth, candy and a few games. Maddie went as a ‘Doctor in Training.’ She wore a cute pair of scrubs and had her hair in pigtails. I have never seen such a cute little doctor!!! She even wore a mask and gloves.
Madison this whole time has only seen Emma once. She thinks that Emma must be having a great play date at the hospital with the big doctor. Every now and then, Maddie will say, “Sister all better. Go home.” My sweet girl doesn’t miss a beat!!
Sunday, Oct 28, day 35
Emma has had a few really good days! She is alert and awake for several hours a day. They have been able to take fluid off of her and I think the plan is to try PD tomorrow. Hopefully that will work really well so we can work towards coming home sometime.
Tuesday, Oct 30, day 37
For the second time since we have come to Children’s, Maddie got to see baby sister today!! I am not sure, but I think it did my heart more good to have my girls in the same room than it did for Maddie to see baby sister!
Miss Emma is doing well on PD. She is still on CVVH and will hopefully be weaned off of that and the vent soon. I am hopeful and prayerful that the PD will be able to keep up so that her breathing isn’t impaired by fluid buildup. She still has a considerable amount of fluid around her heart. The next several days/week will tell if her body will take care of this on its own or if it will need to be drained. Her heard also is not working quite right. They also suspect this will correct itself. The CVVH has been able to help bring her swelling down (pulling the toxins out) and has also left her vascular system a little dry. This in combination with the amount of blood thinner Emma has to be on to keep the CVVH filter from clotting should help explain her heart irregularities.
Other than those concerns, Emma is doing well. She is resting well and is very alert when she is awake. Keep on praying!!
Wednesday, Oct 31, day 38
Halloween! Madison went to the fall festival at the Ronald McDonald house last week. She went in costume, as a Dr. Complete with scrubs, a surgical mask, gloves, her Doctor Bag and two cute pigtails with matching bows. Madison is fascinated with playing doctor. I am sure it has absolutely nothing to do with the fact that baby sister is on a continual ‘play date’ with the big doctors at the hospital. Maddie loved digging in the candy bag with daddy and taking pictures with mommy in the photo booth. She was super cute and I think she had a blast! Any excuse to get mom to give her some candy!
Doctor Madison Coe
The Child Life department at Children’s brought by a costume by for Emma. Emma spent all day dressed as a lady bug. You have never seen such excitement from all of the nurses on the PICU! It was the perfect little cocoon for Emma to hang out in all day!
Emma: Our Little Ladybug