Wednesday, July 15, 2009

Danya's NICU Story (as journaled online at the time)

I wanted to share Danya's story just as I felt it at the time. It's a big part of why I want to continue to bless the NICU at Kapiolani. It's so hard to think of that day so I thought sharing it exactly as I did at the time would be better than trying to sugar coat it or simplify it.
A look back at September 5, 2007
I started early labor last Wednesday. At first it was painless and just annoying. We made one trip to L&D and we got sent home. Then after it switched to painful back labor on Monday morning, and continuing on Tuesday until they were about 5 min apart on Tuesday evening. John and I "enjoyed" dinner before we went in to the hospital. Then at about 9pm we arrived at the hospital with contractions about 5 min apart and still only 3 cm dialated at 80% effaced. We walked around the floor for a half hour having contractions every 3 min. Then at next check nothing had changed. They said we had 2 choices go home or try pitocin. I was done with the back and forth so I opted for the pit. At about 12 pm they started the pitocin. John and I decided to sneak in a nap. I couldn’t sleep as the contractions became more powerful. By 1:30 they stepped me up to the next level because the contractions were not even in length yet. By 3 am I couldn't stand it any more. I was moaning and even making some rather loud yells as my lower back throbbed and pulled with each contraction. I wanted to be done. When I came out of the bathroom after 3 contractions at 2 min apart lasting a 90- sec each so virtually no break, I told John I couldn't do it anymore and I needed the epidural. He wasn't sure but saw the determination on my face. I got the Epidural at 3:30. By 3:45 it had kicked in and I was thinking I would get a little rest before pushing. I was at 7 cm fully effaced. John and I took some quick photos of the room and each other just to remember since we hadn't done that yet. Right here I should mention Baby was doing really well through all of this her heart rate was at 155 and maintaining with only slight differences for contractions. Then without warning at 4:30 baby's heart rate dropped to 28. So they moved me onto the other side it perked back up to 130 for a few moments then fell again. Another nurse came in and a Dr. came running. Not my DR but another one who happened to be waiting on another patient at the time. They tried moving me again only to find it do the same thing. They rolled me again and noticed that the amniotic sac was hanging out between my legs. They burst it and then put a scalp monitor on baby's head to try that. By this time I was complete. An emergency call was made to my OB and the infant crash unit was summoned to the floor. A neonatologist was summoned as well. As soon as they got me flipped back over onto my back and my feet in the stirrups they were going to deliver regardless. My Dr. ran in the door flew into her paper gown and got to the foot of my bed, cut an episiotomy so that they could just get baby out, then placed the vacuum on her head and said push. One push and baby girl was out. She squeeked once but didn't cry. She was rushed over to the warmer where the crash team took over. They intubated her and were giving her oxygen and trying to get a stable heart rate. For uncountable excruciating minutes we waited for a word on what was happening. The Dr. delivered the placenta and noticed a problem. It was white it shouldn't be white. The umbilical cord was also quite white and thin. It should be the size of your thumb, mine was the size of a pinky. It also looked like it had torn. As soon as Baby had a stable heart rate they rushed her to the nursery. The Dr. was stitching me up, while one of our nurses ran back and forth to get information. They told us she had lost a lot of blood and was in a coma like state. She would have to be transfered to the children's hospital immediatly. My OB and the nurses cleaned me up as fast as they could and got me into a wheelchair so that we could at least go see her. They wheeled me into the nursery. My baby was just laying there. There was no life in her eyes and she was so pale. When you touched her she didn't respond. They told us to get settled in our post-pardom room and they would bring her to us after they got her ready to be transfered. For the next 20 min we squished on the hospital bed together and prayed and cried. When they came in with her she was in a star-wars-esk box. She looked a little pinker but it was hard to tell anything else. One of the transfer team from Kapiolani children's hospital told us the first good news all morning. They had given her some saline solution to replace the blood she lost. Once they did that she perked up and moved a bit.

September 7, 2007
Over the past 30 hours our little girl has made a significant turnaround. Although she is still in the hospital she is now responding to touch, breathing mostly on her own, and her heart is maintaining with a little medicinal help. She has had some problems with her blood clotting, and has recieved 2 transfusions already. I was discharged a day early so that I could be with her. We went right from the hospital and got to spend time with her. She still has a ways to go. We have no estimation on a date she can come home, but we are encouraged by the progress she has made.

September 9, 2007
Each day brings new challenges and new triumphs. Danya has been taken off of the drugs that were helping to regulate her blood pressure. She is not in need of the breathing tubes but they are still in until tomorrow because she is scheduled for an MRI for which she must remain still. For the MRI they will sedate her. Her blood is still not clotting as fast as they would like but it is improving daily. She looks very healthy on the outside but she still has a couple hurdles to overcome. She must pee more. Her kidneys were severly affected durring the trauma and they are slow to begin functioning again. As a result she is a little puffy today. We are one of the few new parents that are praying for many dirty diapers. Thank you to everyone who is praying for little Danya. John and I are tired but that is to be expected as new parents. Going to the hospital has it's own challenges and stresses. The days seem entirely too short. We look forward to the day when we can bring her home.

September 10, 2007
Today has been a day of victories! Danya had an MRI scheduled for 11 am this morning. For the test they had to make sure she was immobile so they gave her some meds to keep her still. These made her quite lethargic for the rest of the day. In the midst of this great things happened. When John and I went to visit this afternoon we got a chance to talk to several of Danya's Drs. Dr. Ash who is currently the head neonatologist on the ward, and who saw Danya on her first day, talked to us about her progress. He is so happy with the progress she has made to this point. We learned through him that the MRI scan came back completely normal. Praise God! Following the MRI she had an EEG to test for seizure activity. The results of that test won't be known for a couple of days but they are hopeful as they haven't seen any outward signs of seizures. They also did an abdominal ultrasound to look at her kidneys and intestines as well as another look at her lungs and heart. (She had quite the crazy hair-do after all of those tests. See the photo) Also her puffyness is going down because she had several wet diapers today!

The Tubes!
Her breathing tube will be coming out as soon as she wakes up fully from the meds. The nurses are all excited for this milestone for several reasons. Feisty has been used several times to describe Danya's personality, especially where her tubes are concerned. She tends to try and pull them out. We are so excited to hear her cry. Tomorrow should be that day.

Pic Line
There is so much news today. Danya will also be switched from multiple IV's and other lines into her body to a single pic line. This line is like an IV. It will allow us to hold her and the Dr.s to give her any meds she needs. Standard IV lines on an infant don't flow well after a couple days but a pic line will last up to a month. We are praying she won't need it that long but we are still happy for the change.

September 11, 2007
Today at 1 am they removed Danya's breathing tube!! Today was a day of firsts for our little girl. She spent the day on a nasal canula to help her transition to being without any breathing help. The pressure on the nasal oxygen is at a very minimal rate. Also today she was fed some of the breastmilk I have been pumping. Only 5 cc's at each feeding time. Her poor stomach is slow to start working again, just as her kidneys are. Oh, her kidneys-- She is peeing. Her urine output is just about normal for her age so she's improving. The best part is we were able to hold our little girl today. She is still a little sleepy today because her kidneys are slow to clear the drugs they gave her for the MRI yesterday. She was trying to stay awake when we were visting with her. We also heard her cry for the first time. For as dramatic as her face looks as she cries, her cry is actually quite mousy.

Daddy's First time holding Danya
John was a little nervous at first holding Danya as he hasn't had a lot of experience with little babys but he got more and more comfortable as the evening went on. He was so precious.

September 12, 2007
This morning when I called the nurse who is caring for Danya I got great news. Her platelet count is up and they didn't give her any. That means that she is now producing her own platelets. Praise God for answered prayer! She was moved to a bassinet today but after an OT/PT consult and an Xray her body temperature had dropped to 96.5 and they decided to place her in an isolete. Doing so made it so that we couldn't just pick her up. I, Laura, did get to feed her a couple of bottles today. They were just 5cc of the precious breastmilk that I have been pumping. She took the bottles very well and even showed signs of hunger as the time for her next feeding came around. All of the Drs stopped and talked to me today. While they will still be watching Danya closely they agree that she is beyond the danger. She was moved this afternoon from the area of the NICU where the babies require a high level of monitoring to an area called the special care unit where the babies are more stable. This is a big step, Yet I can't wait to see what tomorrow brings.

September 13, 2007
Today Danya was moved out of intensive care. She was moved to the transition nursery. It is another part of the same room but the care is designed to transition the baby from the unit to home. We still have no timeline for coming home but this is a sign that we are getting close. Danya came off of the nasal cannula today! That means that she needs no assistance with her oxygen and breathing. Praise God!!! She was also upgraded in her eating. She now recieves 15 c.c.s every 3 hours. I know it doesn't sound like much but it is still a great step. She is taking it from a bottle instead of using the feeding tube! The best part of it is that today we tried breastfeeding for the first time. We were not successful, but it was only the first try. We will try again tomorrow.

Visitors
Today was a big day for visitors. Pastor Brian from Kings Cathedral, John's parent's Church, came to visit and pray for Danya. Pastor Lloyd also came and prayed for our little girl. Everyone including the nurses agree she is a beautiful baby.

September 14, 2007
Today Danya was upgraded back into the bassinet, and given permission to eat as much as she wants. She ate 35 ccs which is just a little over 1 ounce. It doesn't seem like much but she also tried breast feeding for a little while. We are praying that she will suck. She gets a good latch but then just waits for me to turn on the faucet. It doesn't work like that. I am meeting with the lactation consultant to hopefully help her and give me some ideas to help.

John and I had a chance to talk to one of the nurse practitioners tonight. Danya has 3 hurdles before she can go home. The first is her kidneys. Although she is now peeing a lot more her blood work still shows some problems with her kidneys. Her blood work is a 5 and it needs to be a 3. Then her liver, she has elevated billy rubin numbers causing her to look a bit jaundiced. Those need to be going down as they take quite a bit of time to normalize and they can be treated outpatient. Then the third hurdle is her weight. They want Danya to return to her birth weight. Once those have been met she can come home. So please pray.

September 17, 2007
So much has happened over the past 2 days. On Saturday we said Goodbye to Grandma and Grandpa Valera and Hello to Nana and Papa Gustafson. We also receieved some great news. Danya would be discharged on monday! So to work toward that the Hospital has a policy where they allow the parents to room in at the hospital with their baby to learn more about the baby's schedule before you go home. Last night I roomed in with Danya. John went home because my parents were in town and he had some things to finish before we brought Danya home. It was a long night. I suppose that is to be expected but the Dr's and nurses kept waking us up to measure and do other tests and such. I think I slept 4 hours all night long. Danya is a little strong willed and is taking her time at getting used to breast feeding. So I had to pump after each eating attempt. Danya takes a bottle very well but that was not the plan. We are being patient and working at it. Little at a time it is getting better.

The Dr.'s are amazed at Danya's recovery. She was in the Hospital 12 days. A very short time considering how very sick she was when she was born. She still needs some watching for her billierubin numbers. They are not where they should be but they are going down. Each day she looks a little less yellow. We have an appointment with our pediatrician right away tomorrow morning.

1 comment:

  1. Hi Laura,

    I can only imagine how scary that must have been for you guys! We experienced the extreme drop in baby's heartrate during contractions, the flipping side to side, and the emergency call button where 10 people all rushed into the room within 5 seconds. I didn't have time to react, let alone get my epidural! But, yes the Kapiolani team is fantastic! I am inspired by what you're doing. I just emailed you, and hope to meet you and Danya one day. :)

    ReplyDelete