As Ezra mentioned yesterday, Emy has an infection in her belly where the dialysis is taking place. This is called peritonitis. The inflammation in the cavity where her dialysis is happening reduces the effectiveness of the dialysis. Due to this, she has retained more fluid and is looking extra puffy. Since she is retaining more fluid, it is extra hard to breathe. She had a few episodes of apnea last night, so she was intubated again. Due to her labored breathing, they also did a work up for systemic infection. Thankfully, the labs came back and it seems like she doesn’t have a systemic infection. Her dialysis is more effective today than yesterday. As more fluid is pulled off, she will become less puffy and will be able to breathe on her own again. For now, she has her breathing tube in. She doesn’t like it, but she will have to tolerate it. We are thankful the infection was caught early and her lab results indicate that the antibiotics are working. Please pray that the antibiotics continue to work and that she can overcome this infection.
I am happy to report that not much has changed with Emy G. Her blood pressure is stable. She is weaning off of hydrocortisone. On Monday, they went up on her dialysis to 12 mL instead of 10 and she is pulling off about twice as much fluid as she was pulling off with that adjustment. This is good news— it means the toxins are being removed from her body in larger quantities. Her catheter bandage was changed again yesterday and there was no sign of infection. Her abdomen almost looks normal- hardly any duskiness. She was weaned completed off of fentanyl, which resulted in a few days of discomfort. I’m glad it was only two days that she wasn’t easily consoled. Now she’s a laid-back kiddo again.
Emy G is a bit of an escape artist as she wriggled out of her nasal cannula about half the time. She moved her head backwards then to one side then the other, this usually did the trick and got that pesky plastic out of her nostrils. It’s a good thing her lungs are doing well so her oxygen saturation didn’t drop when she did this. When she moved her nasal cannula it prompted her to sneeze, which was the most adorable part of her little trick. She was a bit grumpy when they changed her from CPAP to a high flow nasal cannula today. She can’t easily wiggle her way out of the new nasal cannula. She seemed disappointed about this, but it was for the best to keep a consistent flow of oxygen for her.
She has an abnormal gas pattern on X-ray so they will continue to monitor that daily. Please pray that the abnormal pattern resolves. While they were doing her X-ray they noticed she has two dislocated hips. Right now her hips will be supported by double diapering. She will need to be reevaluated by orthopedics in about a month or so to address her hip issues. Right now, they don’t seem to bother her.
It’s fun to see her little personality come out. She likes hearing her mama and papa talk. Right now she is listening to a variety of books throughout the day read by her parents; she is consistently listening to the fourth Harry Potter book. We’re aiming for a chapter per day, although some days it’s half of a chapter. When she’s being poked or examined she gets a little upset. I console her by holding her head and giving her my index finger to hold. She also enjoys her pacifier, which also calms her down fairly quickly. She loves getting oral swabs of breast milk. It’s very cute to watch her smack her lips in approval. Milk is a yummy snack! Lately, she has appreciated being swaddled and sporting some seasonal onesies. She likes to stay festive for the holidays.
My apologies for a haphazard update. I’m writing this in between pump times to keep me awake. It is very nice to share mostly good news today. Please continue to pray that she avoids infection, avoids leaking, and that she continues to grow. We are very grateful for how far she has come. Thank you for your continued prayers and support.
What a wonderfully stable few days we’ve had! Emy is off of two of her blood pressure medications. The doctors are planning to wean her off of a third medication within the next few days. This is a huge win for her as she was on the maximum dose of both of these medications during her first week of life. She has been able to receive more nutrition due to these adjustments. Hopefully she will grow at a faster rate with the increased nutrition.
They are also hoping to remove her arterial line soon. The purpose of the line is to measure her blood pressure. As her blood pressure has been stable, they are planning to take it out soon. It will be nice for her to gain some mobility in her right arm again. A line in her forehead was also taken out recently. She appears less fragile without a “unicorn” line sticking out of her head!
Dialysis is going well. Her dressing was changed today and there was no sign of infection. She hasn’t leaked anymore, which is amazing. We are happy that gravity did its job and kept the fluid down in her belly where it needs to stay. She is still on 10 mL per pass, with 30 minutes between each pass, 24 hours per day. We are thankful for the nurses who carefully carry out this task around the clock.
A highlight of the week is that I got to hold her today! She seemed to enjoy it; I know I did! It was sweet holding my precious daughter in my arms for the first time, with her little face nestled against my chest. Time seemed to stand still as we shared our first cuddle; what a joyous moment.
We are very thankful for her progress. Please pray that her dialysis continues to go well. Pray that her catheter doesn’t leak, and that she continues to pull off excess fluid with the dialysis. Pray that she avoids infection. Pray that her labs remain stable despite the inefficient dialysis regimen she is on (the small and inefficient amount of dialysis is necessary to avoid leaking). Pray that her blood pressure remains stable, even as she is weaned off of more blood pressure medication. Please pray that the additional nutrition is enough to grow her. Pray for the doctors and nurses who are overseeing her care. We believe God is with our baby girl. We believe He is with us and He is holding us through this medical journey.
The surgeon and nephrologist looked at her surgical site and noticed a small leak. Thankfully it is not a big one, so they plan to keep her on 10 mL passes for the next few weeks. Hopefully she will not leak with this small amount. In a few weeks, she should be slightly bigger and her catheter site should be healed, so they will increase her dialysis at that point. Until then, her bed is tilted to a greater degree to help gravity keep the dialysis from draining. Please pray that she doesn’t leak anymore and that she grows significantly in the coming weeks.
She is in a good spot today. We are thankful she hasn’t leaked since yesterday. We are praying that she won’t leak anymore.
This morning Emy’s catheter started leaking. Please pray that the surgeon and nephrologist know how to resolve this issue and that she can continue with peritoneal dialysis. Right now they have paused the dialysis until the physicians can look at her and decide what next steps are for her.
She did very well yesterday and was weaned off of some of her blood pressure medicine. Please pray that her catheter doesn’t leak anymore.
Emanuela is doing much better than yesterday. It turns out her labored breathing is likely not from infection; praise the Lord! It is due to a combination of a partially collapsed left lung and increased sub-diaphragmatic pressure from her tummy being filled with fluid from her dialysis. Her lung can be recruited with medical intervention, but the doctors will simply monitor her for now. If her cultures come back negative tomorrow, they will stop antibiotics. We are so thankful that she does not have sepsis, as that would have been a large set-back.
Emy’s breathing is still labored from time to time, so please pray that her left lung heals. Her other vital signs are very reassuring. In fact, her blood pressure is so stable that they decreased her blood pressure medicine. We are hoping she continues to maintain her blood pressure so they can continue to reduce her blood pressure medicine. Additionally, she was increased from 8 mL to 10 mL of dialysis in each pass. Hopefully this will draw more fluid off with each pass.
Right now, Emy is stable. The nurses and doctors seem a bit more relaxed, which makes me feel more relaxed. Please pray that Emy continues to make progress in the right direction and doesn’t have any significant steps backward. Lowering her BP meds is very helpful because this fluid can be substituted by increased nutrition, which will help her grow. Managing without kidneys is tough, but the doctors and nurses are doing a great job adjusting to her needs. We are very thankful for the experts that are working very hard to get her medicine, fluids, and nutrition just right.
Emy G is doing well but in need of prayer. Her breathing is rapid and shallow. This could be a sign of infection. The doctors started her on antibiotics in case it is an infection and ordered labs. We will see within the next day or two if she has an infection. In the meantime, please pray that her breathing returns to a normal rate. Also, her belly is a bit more blue than it has been. Please pray that it returns to a normal color.
On the positive side, her blood pressure is stable. The dialysis is working well. She hasn’t leaked from the dialysis and is pulling off more fluid than they put in. We’re hopeful she will return to baseline soon. Thank you for your continued prayers.
One week ago you were still tucked away in my tummy. All safe and sound. My kidneys were your kidneys. My nutrition was your nutrition. My breath was your breath. Everything was regulated just for you.
Everything is still regulated for you, but with much more risk. Risk of infection. Risk of leak. Risk of error. Things were much simpler a week ago. Yet, it was time for you to make your way into the world.
You have overcome so much in one week. You cried after you were born and took your first breaths. The doctors didn’t know if your lungs would be strong enough, but you breathed so well on your own you didn’t need a ventilator. You had your first surgery. The doctors didn’t know if you would be big enough to get a tube put in your tummy for dialysis. A small but mighty 1110 grams, you are the smallest baby in Minnesota to successfully receive a catheter for dialysis. The doctors didn’t know if you would leak the dialysis, so they gave just a wee 5 mL. Your tummy was just big enough so that you didn’t leak.
Just one week ago you were kicking my belly. Now you kick the occupational therapist when she massages your feet. So much can change in one little week. We are so thankful for one precious week with you, Emy G. Happy one week to you.
Today Emy G’s ventilator was removed. She is breathing room air without assistance. She was placed on a ventilator on Thursday evening prior to her catheter surgery (this was to sustain her during the surgery, not because she could not breathe on her own). The team decided to keep her on the ventilator to control her breathing during the first few days of dialysis. She is tolerating the dialysis and her blood pressure is stable, so they decided today was the day to remove the ventilator.
She is much more comfortable without the breathing tube. It is nice to see her whole face again. A line in her head was also removed last night, so she is looking less medically fragile. Her tummy is looking less blue, although it is still discolored. Please pray that this continues to heal.
Her dialysis is working well. She is doing well with 8 mL passes. It will be increased again in the coming days if she continues to tolerate it. As her dialysis amount increases, she will be able to receive more nutrition to aid in her growth. Please pray that she continues to tolerate the increasing amounts of dialysis.
Her blood pressure is still low but it is at a good level for her. Please pray that her blood pressure increases. She is still on high levels of blood pressure medication to maintain her current levels. It would be ideal if she could sustain a higher blood pressure without the medication.
We have experienced many highs and lows during Emy’s first week with us. Please continue to pray that she thrives. Please pray for me and Ezra as we navigate this rollercoaster of emotions. We are so thankful that she had a good day. She also opened her right eye today. It was the first time she saw me. She also heard her first book, “Snowmen at Christmas.” We cherish these firsts with Emy G. She is a precious child of God.
Emy has improved and stabilized since yesterday. Her blood pressure is stable. Her tummy is still a bit dusky but not as blue as it was yesterday. She is moving in the right direction. The nephrologist is planning to increase her dialysis from 5 mL to 8 mL. Please pray that she doesn’t leak from this increase. Please pray that her tummy is well-perfused and that her normal color returns.
Thank you for your continued prayers and support. We are thankful she is in a better place today than she was yesterday.
Baby Menon 