Author: rebekahcarrizales

Emy leaked again on the 27th. Please pray that she stops leaking. The good news is that she is still getting a lot of fluid off with her dialysis, despite the leak. Her blood pressure was elevated this week because of the excess fluid, but today she had a few normal blood pressure readings. Hopefully she continues to have normal blood pressure. The WBC count in her PD fluid is in normal range, which is a good sign. Please continue to pray that the peritonitis resolves. Please pray that she doesn’t need her catheter replaced any time soon (right now she doesn’t need it replaced, but if her peritonitis doesn’t resolve after a long course of antibiotics, it may need to be replaced).

We love Emy G so much and are so thankful for her. She brings such joy. She is awake more nowadays; it’s so fun interacting with her and seeing her little personality shine through. This week she turned 2 months. We are so thankful for each day we’ve had, and for each day that is yet to come.

Emy’s PD leaked again today, so they decreased her fill volume to 18 mL from 20 mL. Please pray she doesn’t leak any more and that her dialysis continues to be effective even at lower fill volumes. Also, the white blood cell (WBC) count in her dialysis output continues to have an upward trend. Even though it is still in normal range, this value has doubled every day for the last couple of days. The team is now culturing for fungus incase that is the cause of her increased WBC count. They added fluconazole, an anti-fungal, to her PD to prevent a fungal infection. Please pray that her infection is managed with her current medication regimen and that they do not need to replace her catheter any time soon.

Today I held Emy utilizing the kangaroo care method. She picked up her head a few times to look around and reposition herself. She is a strong little lady. Thankfully, she didn’t seem bothered when I sang to her while she was on my chest (I don’t have the best singing voice).

Ezra and I show her high contrast books that Ezra’s mom suggested to help develop her eyesight. She seems interested in the books and looks at them intently. We continue to read Harry Potter and other books to her on a daily basis when her eyes are closed. We hope these supplemental caring measures let her know how much she is loved while also helping her development. It is a treasured and sacred gift to be her mother. We were reminded of that yesterday.

Yesterday, we were waiting at the entrance of the hospital to get our daily identification badges when a couple walked around the security station. The security guard stopped them and asked them to get in line for their daily badge. The mother showed her badge from the day before and asked if it was good enough. The security guard said, “sorry ma’am, even though you are discharging today, you need a new badge.” The mom blurted out, “she’s not coming home. Can I please go up?” The security officer again denied her. “But she’s dead, can’t I just go up?” She wept in her husband’s chest.

In the span of a few seconds, Ezra and I were reminded of just how fragile life can be. The days blend together sometimes as life in the NICU can be mundane (infants, by trait, mostly sleep). I was jolted out of the monotony by the stark realization that that mom could have been me on a number of occasions. The fact that Emanuela is still with us today is a miracle of God. Although she has overcome so much, we are not guaranteed tomorrow. I feel such sorrow for the mother that mourns the loss of her child. She reminds me to rejoice in the precious gift that is my daughter.

Emy is recovering well from the peritonitis. The bacteria may have colonized in her catheter. The vancomycin might be able to resolve this issue, if not, they may try to clean the catheter. If this does not work, they will have to replace the catheter. Replacing the catheter is currently not on the table but may be in a month or two if the other efforts do not resolve the issue. Please pray that the vancomycin kills the bacteria in her peritoneum and in the catheter.

Emy is also receiving more nutrition these days and got her PICC line out over the weekend. These are all good steps for her. She is still tiny— just shy of 4 pounds. Please pray that she grows more as she is receiving more nutrition.

Today is your due date. You were supposed to stay safe in my belly until today. God had different plans. In these extra 51 days, you’ve had your first Thanksgiving (your birthday), your first Christmas, and your first New Year. You’ve shared your first smile with the world. You’ve astounded so many with how far you’ve come, defeating the odds with each passing day.

We spent this day as we normally do, but with the reminder of just how special you are. We visited you morning, afternoon and evening. We helped with your cares and consoled you when you let your voice be heard. We showed you picture books when your eyes were open and read you Harry Potter when you were drifting off to sleep. We held up your head and stroked your hair as we talked to you. We laid our hands on your forehead as we prayed for you.

We loved spending these 51 joy-filled days with you. Our hearts melt for you. We are so thankful for you, Emanuela Galit. Happy due date.

The peritonitis is back. The WBC count in her dialysis output increased again. She’s back on vancomycin, in her dialysis bag and intravenously. Thankfully her respiratory condition has not changed. She is not having very efficient dialysis pulls due to the infection. Please pray that the infection resolves, that she starts having better output in her dialysis, and that she maintains her breathing. She’s also had low blood pressure. Please pray that this resolves.

On another note, her nutrition increased again today, with the hope that she grows. Hopefully that double chin gets a bit bigger! Thank you for your continued support and prayers. Please continue to share Emy’s journey with your prayer circles.

Throughout this journey, we’ve been on a rollercoaster of emotions. This afternoon, I held Emy and gave her a bath. This evening, the white blood cell (WBC) count in her peritoneal dialysis output doubled from yesterday. This could be the start of another infection. It is not a confirmed infection. It feels that we live in the moments in between complications. We are so thankful for this entire journey. It can be overwhelming sometimes. Even though she is clinically looking good, the possibility of infection is again on the table. Please continue to pray for Emy— that she thrives and overcomes any infection. Tonight, I feel drained. That is ok. Today was wonderful. Today I cried. Tomorrow is another day.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Matthew 6:34

Today we were pleasantly surprised to hear that the doctors think the bacteria that grew from the culture of her dialysis output was contaminated, so it was a false positive. When the doctors looked at the whole picture including her other lab results, they felt fairly confident that the test from yesterday was a false positive. This is great news! It means she can get off of antibiotics tomorrow. Yesterday we were told she would continue with her antibiotics longer because they thought her peritonitis was making a come back. We are so thankful that her peritonitis is under control and that she appears to be doing well. Thank you for your continued prayers. God is with us.

Hello. I have been a bit absent this week- I apologize for not giving an update sooner regarding Emy’s tunnel infection scare. It looked like it was infected early in the week, but when the pediatric nephrologist looked at the site, she said it did not look infected but irritated. Thankfully, it looks like the exit site and tunnel are not infected.

Emy had a good week. She was pulling well on her dialysis and has been looking less puffy. Her lungs are responding well to the CPAP and are much less wet. She weighs about 1.8 kg now, so she has grown quite a bit since she was born. Praise the Lord for these accomplishments.

Today, a bacteria called staph epi grew from her dialysis output, which means that her peritoneal infection is not completely resolved. She is still on the antibiotics she was originally treated with. Please pray that her peritonitis is resolved for good and that Emy overcomes this obstacle once again. Please pray for guidance for the care team as they navigate next steps for her.

Hello— it appears that Emy’s tunnel is infected. This is the skin and tissue surrounding Emy’s catheter. Please pray that this resolves and isn’t a major setback. I’m not sure how effective the treatment of a tunnel can be. Please pray that this infection doesn’t impact her dialysis routine.

As mentioned in the last post, she is also breathing fast. This is because her lungs are wet. Please pray that the fluid can be taken off and that her breathing returns to normal.

If she cannot continue with peritoneal dialysis, they may try using Aquadex on her. Please pray that she can continue with peritoneal dialysis and that her infection resolves. Please also pray for me as this is upsetting me more than it should.

Emy was doing much better over the weekend. It seems her infection has resolved. Her dialysis is working better than before the infection. She’s off her ventilator and onto high-flow support. This weekend she was looking great but today she started breathing too fast. This can be a sign of infection. Please pray she doesn’t have another infection. We’ve had so many ups and downs I’m hoping her fast breathing isn’t a sign of anything worse.