Monday, April 18, 2011
We are having so much fun with Lucy. When she first came home Grant Jr. would talk to her in a voice that sounded like he was in pain and he would always come up and say "Hi Woosie are you ok?" Since then he has been able to pronounce her "L" and has gone from calling her Lucy to Luc (pronounced loose), now he calls her Lucy Belle. He has appointed himself the official lint extractor from Lucy's fists and between the toes.
Towards the end of march Lucy had a follow up appt. with the neurologist who saw her in the hospital. She was impressed with Lucy's abilities at that point. Towards the end of the appointment she decided to listen to her heart again because her skin was looking a little purple. When she checked her heart she was in SVT. A few other nurses came in to verify and brought a bag of ice water. For the first time the cold shock to her face brought her out of the tachicardia. They still wanted me to take her down the ER to get her oxygen monitored. We ended up being in the ER for 3 1/2 hrs. When we came in the Dr., Dr. Dean said "so this is Lucy, I have heard about you and they told me what to look out for, I hear this is the miracle girl.!!" Lucy just took a nap on monitors that afternoon.
On March 31st we visited Dr. Cheng, the cardiologist for her follow up. He did an ultra sound of her heart. Everything is back down to normal size and is functioning normally. Unless she has another SVT we just have to bring her back at 1 year and keep her medication up until that time.
Lucy is smiling with her eyes open. So cute.
A couple weeks ago we went down the street to the fire dept. to see Colby, the paramedic who took the call on her birthday. I went down there with all four children and while I visited with Colby and showed him the new and improved Lucy another fire fighter took Grant and Gabe on a high speed tour of the whole fire station with extra attention on the fire truck part. We were there for about an hour and they actually received a call while we were standing there talking. Their alarms and lights started sounding in the station and we told everyone to get right into the car quickly and the fire fighters and Colby got ready and into the engine very quickly. Gabe was very scared with all the lights, sounds and rushing around. He told me later that he thought we were going to have to go and fight the fire with them.
Sunday, March 13, 2011
Lucy will receive her baby blessing next Sunday, March 20th at 1 PM. The address of our church is 18300 NE 18th St., Vancouver WA 98684
A few people have asked when this was happening and we would love to have any of you who have helped Lucy and or have been praying for her and thinking about her be there for this special time.
Saturday, March 12, 2011
Thursday, March 10, 2011
Lucy went to a follow up appointment with the Pediatrician, Dr. Jones. She gained one ounce, making her 7 pounds 9 ounces. Dr. Jones said normally that would not be enough but I told her all that she is eating and that she is having plenty of full diapers. She thinks that she is continuing to lose fluid and gain weight at the same time.
Grant was holding Lucy and he yelled out, "what happened? all the hair on top is gone. It wasn't like that in the hospital now she has a cul de sac!"
I have found when I am not directly involved with talking to someone or doing something that requires thinking, I am thinking about Lucy and all that has happened in her life so far. I was thinking today about how different it feels to be praying for someone or something that is so important to you all on your own versus knowing that so many other people are also praying with you for the same thing. I felt so much strength behind me knowing of so many that were also praying for Lucy.
I talked to my brother on the phone this evening. He was one of the people that I had called on the evening of Lucy's birthday when we were at Salmon Creek and there was the 2 hr. time frame left that Lucy's blood gas had to improve in order to move forward with treatment. I had a short conversation with him just letting him know she was born and that she was in the hospital and asked if he would pray for her body to be able to improve to the point it needed to within the two hours. Today was the first day we talked since that night. He and my sister in law have been following the blog since for updates. He told me when we got off the phone he told Liz and they said a prayer together. A few minutes later they were just both standing there in the kitchen and they had an impression come over both of them that Lucy's situation was more serious than they realized. They both had this feeling independently without saying anything to each other. They brought my nephews back together and prayed again and they continued to kneel and pray every 10 minutes for that next two hours from the time I hung up with him. I know there were others of our family and friends doing the same at that time. I am so thankful for that. I was praying during this whole time as well but I was so exhausted and I was hearing what the Dr. was saying but I was kind of denying to myself that it was as bad as it was. I didn't feel like I could handle it if we lost her at that time so I just felt scared and frozen and we were continually getting updates and info. from the Dr. There have been so many miracles along the way and her turning around in that last two hours is one of them. We were also talking about how during a relatively short time frame Lucy influenced so many from all over to be humbled and turn to God in prayer for her. Like my brother Porter said, I know Lucy is still with us today as a result of the power brought down from so many prayers. That is a gift from everyone to us that is like no other gift that we could ever receive. Dr. Paulik from the ER was so focused and intense for several hours initially finding the problem, taking the steps to start to turn things around. We prayed for the Dr.'s and nurses several times a day. During the first week or so of her life I had to keep telling myself that this was real. I am really driving to Emanuel hospital to be with my baby who is being kept alive by a machine......I am washing my hands to go in the NICU where my baby is in critical condition. During the couple weeks with her home now I am finding myself having to say to myself, she is really here and she is doing well and yes all that did really happen and now I am sitting here feeding her and watching her make all kinds of the cutest new born faces.
Lucy had a new born photo shoot on Mon. Tara Mansius came to the house with her fun props, head dresses, pink scarves etc... and we moved Lucy around from setting to setting while trying to keep her sleeping. Tara will be getting the pics. to us by the end of the week. We'll get some of her best looks posted once we get them.
Saturday, February 26, 2011
So Lucy did come home Monday evening.........and it has felt as though that is when she was born. She is 3 weeks and a couple days old but it feels like she is 3 months.
On Monday Grant and I each went to an infant CPR class. The last time I had infant CPR class it was 2 breaths and 5 chest compressions. Things have changed FYI... it is 2 breaths and 30 chest compressions. Before and between all the CPR training we had a bunch of instruction, hunting down a compound pharmacy to make her medication in liquid form which we had to have of course to take her home. We also had to have a pediatrician with an appointment for this week before we left.
They took all the monitor leads off Lucy a couple hours before we left. That felt weird. Lucy continues to be someone that causes me to be in constant prayer. One because I am so thankful for the miracle of her life and her present health and I feel very inadequate or that "Thank You" is just nothing compared to the blessings we have been given. On the other hand the only thing that feels safe bringing her home is to sit and stare at her at all times watching her breaths and her neck to see if her blood is pumping too fast through her jugular vein. This is definitely unrealistic especially given her two older brothers. So I am praying when I lay her down for naps and night that she will keep breathing and be kept safe while I am somewhere else in the house.
She did have her appt. with Dr. Olivia Jones, her pediatrician on Wed. afternoon and she had already gained a couple of ounces! We have a follow this Wednesday to see if she is gaining enough. Pressure is on! I told Dr. Baker at the NICU that she is better fed than our other three as new borns. He laughed and admitted that in the NICU they are made fun of with feedings because it is all a mathematical calculation because they have to have people grow around there. If you don't suck it we stuff it!
When we arrived home Grant Jr. was beside himself with excitement. He had never met Lucy yet but he knew she was not in my tummy anymore and that Dad and I were visiting her at the Dr. all the time. Grant was carrying the car seat and Grant Jr. was pulling on the strap that tightens to bring her down to where he could see her. He calls her Woosie (cannot say the "L") yet.
She is sleeping in her bassinet in our room and she is already very noisy. Grant says it sounds like we have a little prairie dog or some other type of rodent scratching and snorting around over in her bassinet.
Sunday, February 20, 2011
Yesterday Lucy made it to 75% of her feedings on her own! Dr. Baker took the feeding tube out in the afternoon and let her start to go at her own pace for feeding. She just can't sleep longer than 4 hrs. So far yesterday afternoon, through the night and today she has had to be woken up at the 4 hr. mark but then she is very ready to eat and she has often been eating past her feeding goals.
She also had a special visit from Dr. Elise Hewitt yesterday afternoon. She is the pediatric chiropractor that helped Grant Jr. as a new born with nursing and continues to see all 3 of the other children on a maintenance basis. She did some cranial sacral work on Lucy yesterday. Her forehead was jammed back, which also put the sphenoid bone out of place (which is behind the forehead) as well as her head was stuck back. This was most likely all due to her facing forward for most of labor until she was turned to come out. All of these little adjustments have already improved her suck tremendously. A bottle that normally was taking her about 40 minutes to finish she was able to down in 15 minutes earlier today.
This afternoon she had the car seat challenge. She had to sit in the car seat for 90 minutes and they had to make sure that her respirations, heart rate and oxygen all stayed within her normal parameters. She passed.
Dr. Baker said it looks like she will probably be able to come home tomorrow afternoon. She did drop a few grams last night and he wants to see her gaining but he said since she is eating so well he doesn't think it is to be worried about. She has another ultrasound on her heart sometime tomorrow morning and then Grant and I are supposed to take an infant CPR class tomorrow as well.
We are ready to get going on the new normal......it will be nice to have our family all under the same roof again.
I have realized this is a great way to make a baby book so I plan on keeping up the blog although we will probably not be updating quite as frequently. Since there are several Dr.'s interested in knowing how she is doing at milestone check points we will probably be paying more attention to those than we have with the other children and those are all things I will be keeping a record of.
We were given all her prescriptions, have to fill them today and hope that we have the winning combination!!
The Schmid Family
Friday, February 18, 2011
Lucy has a new nic name in the NICU.........."Trouble" This was adopted on Tues. at noon when she sent everyone running with yet another SVT. It had been since last Fri. just a few hours away from 5 days of no SVT. They had taken the IV out that they had put in last Thurs. night when she started having them again. So they did the bag of ice water smothering her face a few times, tried gagging and while they were doing those things two nurse practitioners were working on getting another IV started. They tried twice in her hand then once inside the elbow. Her veins were squirming all over the place. She was crying and whimpering and I was holding her other hand and helping her keep her pacifier in. They ended up getting one in through her vein in her scalp. If was not fun. Even less fun was realizing how many times this had been done before when I was not there and able to talk to her. As soon as they got the adinison in everything was better. Then everyone was scratching their heads. Dr. Cheng, her Cardiologist, pulled out his last card for the current medications. He doubled the dose on one of them. The only other option if she does have another on this medication is to replace with a stronger medication that has a fine line with the dosage between fixing Lucy's problem and causing a different arythmia which is more dangerous. There was a nursing student named Chris there shadowing Mary Kay, Lucy's nurse that day. Mary Kay had said in the morning that Lucy was flirting with Chris because she kept starting at him while she was getting her diaper changed. Later after she had been converted from the SVT Mary Kay was pretending to talk for Lucy and said ,"well, I was just thinking with Chris being a student and all that he needed to see something more than bottles, diapers and sleeping babies." It was very funny.
She is continuing to progress with her eating. She has been waking up and crying sometimes before it is time to eat. Until a couple days ago she would be woken by her diaper change, temp. and blood pressure read and then she would start eating. They will probably take her feeding tube out tomorrow and let her eat as she wants and see how she does. She took her feeding tube out on her own earlier today. She had a sneaky strategy. I was changing her diaper. She sneezed and it moved out of her nose a little. I reached up to try and push it back in a little and at that moment she pooped again but her diaper was open because I was still cleaning her. Then my attention immediately went to the mess that was now spread beyond the perimeter of the open diaper and that is when Lucy went for the feeding tube hook with her hand and pulled the thing all the way out. She was not happy with the nurse putting it back in for her.
Dr. Baker would like to see her go 5 or 6 days without an SVT on the new dosage of the one med. That will probably also give her enough time to get all the way up to speed with her feeding. From Tues. when they increased her dosage that would put us at Monday as the possible going home day.
Candace, the pediatric ER nurse from Salmon Creek that had called us last week dropped by today to say hi and see Lucy. She was happy to see how healthy and peaceful Lucy looked as she was sleeping. If we do end up having to take her to Salmon Creek once we are home due to her starting an SVT that I cannot stop Candace assured me that everyone knows her and knows what is going on with her so they will be able to do what she needs right away.