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.
Tuesday, February 15, 2011
The title basically says what Lucy has been up to the last few days. Up until yesterday she had only been eating herself (bottle and nursing) about 1/4 of her total volume of required milk. They are militant around here with the feeding volumes. Yesterday though Lucy jumped up to consuming 80% of the volume. They want to see if she will do that for a second day in a row and then they will take her feeding tube out and let her set the pace for a couple days and make sure she doesn't have a big weight loss. The Dr. that was with her yesterday and today said that sometimes when someone like Lucy who was so sick is recovering and is so sleepy like she has been will sometimes make a big jump forward in 1 24 hr. period and then get very tired again from all of the exerted energy and be very sleepy again for a couple of days. So we will just wait patiently for her time.
The night nurse who has been on for the past 4 or 5 nights or so has told us that she is very awake and active from midnight to 3 and that is the nurse I have found out is playing dress up with her during that time as well. All the tiny tiny babies in the NICU are not supposed to be handled very much and you can't change their clothes often so they are liking dressing Lucy. I need to remind her that I am not a night shift nurse but a 24 hr. mom and I need to sleep as much as I can at night. No more mid night fashion shows pretty please. When she gets home and wants to do the midnight thing she is going to think we are all very dull and boring.
Lucy passed her hearing test yesterday. That is very good to know especially when they turn 4, 5 and upwards you can know that they are not hard of hearing, just selecting what they want to listen to.
Still no more SVT's since Fri. night. Hopefully that means they have the medicine right for her. One of the medicines is apparently very nasty tasting. The nurse was squirting little bits into the side of her cheek from a syringe when I was feeding her a bottle and Lucy was gagging every time she put more in her mouth. This is the one that has to be given 4 times a day and it is not just a tiny squirt either. We will be finding out about making it berry flavor or something. There are certain medicines they can flavor and I am told the Target Pharmacy has an impressive selection of flavors.
Time to feed miracle girl!
Sunday, February 13, 2011
No more SVT's today. The Dr. said it takes three doses of the medicine for it to reach the therapeutic level in her blood which is probably why she still had one on Fri. evening. She is a pooping machine. No problems on the that front.....thank goodness!! Grant is suddenly not as eager to change her diaper as he was the first time.
She is having a tiny bit more eyes open time each day but for the most part she is a very tired girl. Dr. Baker said he would not hold it against her since she has gone through so much. He also said because of how fast she was able to get rid of all the fluid from the hydrops and how fast they were able to get her body to stabilize that they think this all happened in the last few weeks of pregnancy. It was very good that she came early. There would have just been a longer period of time in the deprived situation and she may have already been gone when she was born. He said most of the hydrops cases he has seen are more difficult to decrease the fluid and getting the blood products, gasses and everything else to stabilize is much more difficult because of the fluid taking a longer time to leave the body.
We had to take our car seat in yesterday for inspection. We passed the first test.....it is not recalled. Before she goes home she also has to pass a test sitting in the car seat for 90 min. and not have her oxygen saturation or her respirations decrease. Barring anymore runs with her heart all we are waiting for is for her to eat her food all herself, not need to get it through a feeding tube. It is just a matter of her having enough energy to take all of it through a bottle or nursing. Right now she is taking herself about 25% of her milk herself and the rest is through the feeding tube.
She can wear button in front pajamas now so the nurses are having fun changing her clothes. Yesterday the nurse asked Grant if he wanted to change her clothes. He asked, " is she dirty?" She said "no, just thought you might like to change her outfit." Grant said " I'll let her mom do that." I was not at the hospital at that time but a little while later after Grant had gone to the restroom or something and come back to her bed he noticed that Lucy had a new outfit. He doesn't get it.
Friday, February 11, 2011
Lucy started causing us to age rapidly again last night and through today. Starting last night at 11 PM, then 5 AM this morning, 7 AM and 6 PM this evening she had SVT's. After the 7 AM episode the cardiologist talked to us about adding a second medication to treat this condition. They started the medication in the middle of the day. So far neither Grant or I have actually been right there by her bed when these have happened. During the day they brought me a stethoscope and showed me how to check her heart rate. We are supposed to take her heart rate twice a day. If her heart rate spikes we are supposed to get a cold bag of something out of the freezer like peas and put it on her face. This technique has never worked to convert her at the hospital. Then we can also try tipping her upside down. If after 20 min. it has not gone down we call the cardiologist and then calmly drive her to an ER that treats pediatrics. They will give her adenison, which aside from one incident is the only thing that has converted her. The one time that something else worked was when they gagged her. This drug has to go right into the blood and it works instantly.
So this evening when it happened again I was right there about to change her diaper. This was the first time she had woken up all day. During the early morning episode they had given her morphine to try to stop it before the adenison. She was out all day long until the evening SVT. I did take advantage of her drowsiness and cut her nails. Morphine makes nail cutting a breeze. So there is still some figuring out to do as far as the right medication for her. Dr. Cheng said if this combo didn't work there is a single drug that is more powerful that they would try.
They are back to thinking that this was probably the cause of her hydrops. Normally if it is a heart problem that causes the fluid accumulation it is from a cardiac arrest which will show major heart tissue damage. They know that Lucy did not have a cardiac arrest. They are thinking the same affect could have happened if she was in SVT for days continually.
Grant and I were talking about the many things that were coming to our minds about how we need to adjust or do things in our life to make sure we are prepared for Lucy's heart arythmia. If we were traveling somewhere we always need to know where a hospital is that has pediatric care. No long air plane trips like Hawaii, which we were planning on this summer. We needed to laugh apparently mostly because we are really scared about handling this ourselves. We talked about the Sun River trip we took over Christmas break. We thought that could work with Lucy because all we would have to do if she started into one is gag her, then tip her upside down and stick her head in the snow and hope no one reports us to CPS.
A few of the nurses in the NICU have already volunteered to fill the position of nanny for Lucy if a position opened up. It seems like we will at least need to get a nurse to go on a date.
Dr. Cheng has said this is not an uncommon problem with infants usually through age 1. The reason it causes a little more concern is that she was so sick with hydrops. He said we will probably be working with this until 1 or 18 months at which time they usually grow out of it but it can sometimes come back around puberty.
We love Lucy so much, thank you for keeping her in your thoughts and prayers.
Thursday, February 10, 2011
This morning Lucy had the EEG done which I was talking about yesterday. She slept through the whole thing. We were given the results in the afternoon it was another day of miracles. Her EEG was completely normal. In case anyone doesn't know I asked Dr. Huffman the difference between what an MRI tells us vs. the EEG. The EEG measures the strength of the electrical volts that are happening in the brain and the MRI gives a visual picture of the brain tissue which you compare the color of the brain matter on a grey scale. Too light or too dark is an indication of damage. Because of the normal EEG Dr. Baker said that she will not have the 2 month follow up EEG that they had originally planned for. It is so amazing how many different details there are to think of and realize that need to be checked out.
We had another nap today with Lucy curled up in a little snuggly ball on my chest. Those are the best naps. She had her eyes open a bit more today. When she looks at me I can get a sense of her spirit. She is obviously so strong but she is so gentle and sweet at the same time.
We received another call today from one of the ER nurses from the Salmon Creek hospital named Candace. She said that everyone who was there working on her has been wondering about her and worried about us. She said she had been praying for Lucy every day and was of course very happy and surprised how well she is coming through.
I think sometimes we all can under value the power that can happen through our faith and prayer especially when combined. So many people have wanted to help us and have helped up immensely. The help that I feel has been the most valuable and the greatest gift to us is the gift that cannot be bought, or seen. The gift of exercising faith in the power of God on behalf of Lucy and our family.
Dr. Baker is estimating that she will probably be ready to come home around mid next week. It seems like it is just a matter of her gaining strength enough to eat all that she needs to eat without the feeding tube. She will probably have the nasal air taken out tomorrow.
Lucy pooped!!! But that was at the end of the day.
Because she had done so well with the bottle last evening and night and was upset when it was gone her Dr. jumped up the amount at each of her feedings. They wanted to get the IV nutrition out which they did today as well.
This morning Dr. Huffman, the neurologist came by and did some physical tests with her. She said she believes she is speaking for every physician who has seen or worked with Lucy when she says how amazed they are at her recovery, they never expected this type of an outcome with where she started her life. She also said that this is one of those humbling experiences in medicine where you know that there has been another hand helping her. I know this is true and I feel like God has given the mercy I have begged for since last Thurs.
Dr. Huffman was the one who ordered her first EEG with the 24 hr. video monitoring. After that test she reported that the brain waves were very low and suppressed. I am not sure if I put that in the post for that day because I have not been able to really think about any negative prospect for more than a second before I just have to kick it out of my mind. So Dr. Huffman had not been able to reconcile that result from the first EEG with the physical tests that she was giving Lucy. According to the EEG she should not be showing the physical reactions and reflexes that she was. Over the past few days as her fluid has continued to drain and her swelling has continued to go down she realized that the reason it may have been such a low voltage was probably because the probes were not only having to go through the normal skin, muscle and skull but all of that fluid that was all around her head creating another barrier for reading the small brain waves. She is getting her other EEG actually tomorrow and Dr. H is expecting that it should be a much more accurate test.
A bit later the physical therapists came by and worked with her. She was half asleep through all of this. Then a few hrs. after that the pediatric neurodevelopment specialist came by and did all of her physical testing and assessment. She explained the plan for the first 18 months for checking in on Lucy's development and watching for signs of muscle rigidity and therapy that we can learn to help keep her muscles soft and supple so that she is not inhibited in developing her motor skills.
Lucy nursed today a couple of times. She is so tired. Besides the normal new born tiredness the Dr. said it is like she has been through major surgery. She is doing part of her feedings by bottle or nursing bottle combo and then the balance of her amount is going through the feeding tube. Aside from the time that she is actually sucking.......she is sleeping. She loves being swaddled very tight. She did some actual crying today. Very cute.
The cardiologist came by and reported that he found a slightly enlarged portion of her heart on the echo but not anything that calls a lot of attention. He started her on a medication that is for the SVT"s (heart rate spikes) that she was having. She has not had another one of those since yesterday morning. I think the medication helped my heart as well. He said he wanted to follow up on that in two weeks and then possibly take her off of it and see how she does. That idea had an adverse reaction on my heart. He said he would send me home with a scope. I already told Grant to decide which 4 hrs. of the night he wanted to sleep because the other 4 he gets to take a turn monitoring Lucy. So I can imagine if he takes her off the medicine I am going to have a hard time communicating with anyone else in the family because I will constantly have a stethoscope in my ears listening to Lucy's heart.
Colby, the paramedic that was in charge of the scene right after she was born called the hospital yesterday and tracked us down. They wanted to know how Lucy was doing. He said they rarely see something like this and have been worried about her. He has small children of his own and said that he had not been able to get her off of his mind. He is stationed at the fire station that is a couple blocks from our house right by the dog park and he is actually the instructor for pediatric resuscitation in the area and just last month they had done a big training on the subject. He said that day they had 8 medics on Lucy at the house and for the transport. He invited us when we are able to come down to the station so they could meet Lucy. I have a feeling Gabe and Grant will get the most enjoyment out of that. I am so thankful that the right people were in the right place that day to do the work they did for Lucy and our family.
Thank you for everyone's continued prayers and support.
Grant and Gretchen
Tuesday, February 8, 2011
Another day of big miracles..........the day started early and with another heart episode unfortunately. I seemed to be more upset about them than any of the Dr.'s or nurses though. She has had 3 tachycardia in less than 30 hrs. each time it happened I felt the adrenaline rush and then plummet of energy as when you nearly get into a car wreck. I spent the night there last night, which Grant has mostly done. In the NICU there are bells and buzzers going off all night and I was so afraid of this heart thing that every time one would go off in the area where Lucy's bed was I would jump off the bed and run over to her bed and make sure she was ok. I think Valerie, the night nurse thinks I am a basket case.
At 8 AM I found out that she was going to get into the MRI this morning and had to be there by 8:30. This was a very nerve racking experience. They had to detached every tube from her at their entry point and replace the tubing with MRI approved materials. Then they unhooked her from the vent and bagged for her vent all the way across the hospital, into the elevator and down into the basement. They had to put her under and once again detach her vent, carry her into the MRI room, put her on the machine and reattach. They had a student in training doing the bagging all the way from the NICU to the door of the room. I have been watching and listening to her vent for the last 5 days and I could tell she was doing to much and I was so tired and worried and I was really not into a student practicing on my critically ill baby. We made it through that process and back into the NICU. Dr. Baker came in a short time later with the extubate team. This was another scary thing. I asked him if he was sure about that and he explained all the different number and how they show that she can now breath on her own. It went perfect. They placed a little blow by for a few minutes to make sure her oxygen stayed up. Several minutes later after her vocal chords had a chance to come back together we heard a few little squeaky cries.
She had her first nutrition through her stomach as well today. They started with 10 mls of colostrum with a tiny tube that fits in the mouth and down into the stomach. They checked a few hours later and there was just a tiny bit left in her stomach which was a great sign meaning she is processing the milk and was happy. Then.........I GOT TO HOLD LUCY FOR THE FIRST TIME. We took a nap together. She had no problem handling a pacifier and the gag reflex which was in question a couple of days ago seems to be working normally.
After we woke up Dr. Baker came by with the MRI results and instead of finding the moderate to severe damage that they were expecting because of her early blood gas numbers and the time of oxygen deprivation they found very small areas of mild damage only in the cortex or outer portions of the brain which are associated with motor skills. They found nothing in the deep centers of the brain. These spots were so mild that the radiologist and Dr. Baker said that we may or may not even notice challenges that she has from this. She will be seen by and developmental neurologist for the first 18 month at certain ages to check for her developmental mile stones. This news was the biggest relief, a huge heaviness that Grant and I had both been feeling was lifted. As we have been watching her look better and better on the outside there has been this looming prospect that would create a future of unknowns and more scary possibilities.
She also received and echocardiogram today but we did not have the consult or the report back from the cardiologist yet. It looks like she will need to have a medicine for the arythmia that she can go home with.
As the day went on she was holding the milk so well that they moved her to a bottle and she downed a 10ml bottle and has had another and at midnight she will get a 20 ml bottle. She has been sedated all afternoon and evening only this time it is milk instead of morphine!!! yea!!
We also got to start dressing her today. She can have a hat, socks and a shirt that snaps or opens in the front. Daddy is spending the night at the hospital there and took the clothing articles and is helping her with her new look. He will add new pictures tomorrow.
I know that this recovery has been a miracle, her having the strength to stay alive and fight and then go through everything she has gone through in her first 5 days of life is a miracle and that 1000's have been praying for Lucy. There are people of faith that do not know us at all that have been praying for Lucy. Things are looking very up for our little Lucy. She will have several Dr.'s at least for the first 18 months. I am so thankful for all the gifts of thoughts and prayers.
Lucy will have another EEG tomorrow. The other one they did was while she was being cooled so they expect to see higher activity now that she is waking up. It looks like she will not have to stay the minimum 3 weeks like the Dr.'s thought when she first arrived.
Monday, February 7, 2011
She is nice and toasty warm today. She is continuing to pee like a race horse getting rid of much of the liquid and the puffiness in her body has decreased dramatically. Today the right side chest tube was removed as well as the temp. probe from the cooling and the tube that kept anything from settling in her stomach. This whole time she has been receiving IV nutrition. She was wiggling around a bunch today and making some fun faces in her sleep. More and more movements that are typical of a new born. She worked really, really hard to open her left eye. She looked around for a little bit and then took a nice long nap. Later she opened both eyes at the same time and yawned several of those "huge" tiny baby yawns that are so fun to watch. This evening she had another episode with her heart jumping up to 270 bpm again and was given again the drug that had worked early this morning to bring it down again. Because of this second episode the Dr. is looking at this as the possible cause of her hydrops. From her first tests on Thurs. her heart did show all the parts were there and properly formed but that her heart did show signs of distress. If she had one of the episodes during gestation it is like a cardiac arrest inside the womb and the heart then irritated and stressed can begin to produce this fluid like other injuries would.
She is scheduled for a second ecocardiogram tomorrow as well as an EEG and a more in depth consult with the cardiologist. It sounds like she will need a medication to control this electricity issue with her heart. We have many questions for the cardiologist that will have to wait till tomorrow. When the episode happened this evening it was during the hour that the Dr.'s and nurses make the rounds and do shift change. No one else is aloud in the NICU during that time and Grant and I had run home to do bed time with the children. During this we received a call from the hospital letting us know that this had happened again. I thought I was going to have a heart attack myself when I heard it. Grant is spending the night at home tonight for the first time since last Thurs. After this news he called his buddy Brandon and they came up to the hospital to give her another blessing. While Grant was talking to her she opened her left eye and looked towards Grant. I think she definitely knows her Dad.
She really started to pink up and the dark bruised look on her head is almost completely gone. She has been given Lasek, a diuretic to help her get rid of all the excess liquid still in the tissues. The catheter was removed and she is filling her daipers with urine. Grant has been with her at the hospital almost the whole time non stop since Thurs. I asked him if he was giving Lucy 8 hrs. of uninterrupted eye contact. He said he would give her more if she would open those eyes. Sunday night the cooling blanket was slowly heated to normal body temp. over a 6 hr. period. Grant and I both stayed the night at the hospital as this was to be another risky time for seizures and other things that can happen with the blood flowing at normal pace again.
About an hour after she was up to normal temp. her heart went into a tachicardia at 280 beats per minute. She was given 3 different drugs to help get her out of this arythmia but none of them worked so they pulled out a different one and that took her out of it. We were told this was not an uncommon event when bringing the body temp back after the cooling process.
Saturday she was fixed with leads all over her head and they began a 24 hr. video monitored study of brain activity. She had also had on Fri. a CT scan of her chest. A mass in the chest can be one of the multiple causes of Hydrops. She did not have a mass.
Sucess on Sat.
Her left chest tube was removed because there was no longer drainage coming from that side
She started peeing over the catheter
She began taking more breaths on her own, breathing over the vent at times
Her neuromuscular tests done by the neurologist seem to be ahead of what the EEG says that she should be doing according to brain activity.
Alice came home from school on Fri. with a stack of beautiful cards with messages from her class mates all for Lucy. Gabe was sad that he did not have a card for her so Alice helped him make a card for her. They are now all taped up by Lucy's bed. A couple days later our niece Tea made Grant and I a picture with Lucy all wrapped up in a blanket and she called it her "miracle blanket of light"
Friday morning we called our Bishop Lamar McKague to find someone to come and help Grant give Lucy a Priesthood blessing. Bishop McKague was completely aware of the situation as he had left his work on Thurs. and arrived at Salmon Creek hospital soon after Lucy was taken into the ER. He spent the whole afternoon and evening there until Lucy was transferred to Emanuel. He gave suggestions and we were able to have our friend Pete Phelon who works just down the street from the hospital come within a couple hours and administer to Lucy. Dr. Nelson who was on that day thanked him for coming and said that she has seen those blessings help so much and she welcomes all the help they can get from "the Big Man". I was so happy to feel her support and know that she has faith and trusts in help from God. We asked for specific things in the blessing according to what we had found out could happen over the 72 hrs. of the cooling process.
We asked for no seizures, for her to be able to start taking some breaths on her own, for the Dr.s and nurses working with her to be blessed and inspired as to the needed steps for her care. We asked if it was in God's plan for Lucy that we be able to have her stay with us and be a part of our family now. Grant anointed her and Pete gave her the blessing.
Lucy made more improvements on Fri.
Her kidneys made urine
out of 50 breaths a minute 40 were from the vent and 10 of her own
she no longer needed supplemental oxygen (she was able to hold what is in the air normally)
Sunday, February 6, 2011
Lucy was born at 12:40. Although she was trying very hard to breathe she could not get a breath. After giving oxygen and bagging for a short time our Dr. called for emergency transport. Lucy, Grant and Catherine (Dr., and Midwife) went with Lucy to Legacy Hospital in Salmon Creek. After a short time Dr. Paulik, a NICU Dr. found that Lucy had a rare problem that can happen inside during gestation called Hydrops. With this condition fluid is built up in tissues and cavities of the body where it should not be. There are several possible reasons why this can happen but that reason is often never resolved. The reason Lucy could not get a breath was due to a significant amount of fluid in her chest cavity on the outer side of each of her lungs. It appears that the fluid did not allow her lungs to develop normally because they are disproportionately small for her size. She came out weighing 8 pounds 13 ounces. Her body was also very puffy due to subcutaneous fluid accumulation.
She was fitted with chest tubes to drain the fluid and many tests were done. One of the very serious concerns was the blood gas readings she came in with. Her CO2 was high as well as the acidity of her blood which speaks to oxygen deprivation to all the organs and tissues of her body. As the fluids were being drained from the chest her blood gas levels continued to be read. The Dr. needed to see the CO2 drop to a normal level if there was going to be a hope for her body to be able to survive to the next treatment for this issue. There is also a time sensitivity of roughly 6 hrs. that this level needs to drop within. This was not happening all afternoon. Dr. Paulik let us know he would take one last reading in 2 hrs. and if things had not changed then there was not a reason or a qualification to be able to go to the next phase of treating her. During this time I called several people and asked for you to pray for her body to meet this hurdle. I know that the power of faith when exercised can and does bring down power from Heaven and it did that day. At the last possible moment Lucy's CO2 reading was normal and it was decided to transport her to Legacy Emanuel hospital in Portland where they perform a relatively new "cooling" procedure in situations like this. I rode with her in the ambulance during the transport. This was a very unreal time. Just hours after giving birth, feeling low hope that Lucy had a chance of survival I felt exhausted in all ways as we raced down I5. During the drive I had come back to my mind very clearly stories that I have listened to from as far back as 15 - 20 years ago and more recent of families who either had children born with severe challenges or accidents that caused major health challenges and the experiences of these families with their faith making it through and the many miracles they experienced. This was amazing to me because if asked I never could have recalled these stories like I was remembering them in my mind. I know the spirit brought these stories and pictures of these people back to the forefront of my mind to tell me not to despair but to hang on to hope and pray for the miracles that we needed.
When we made it to the hospital she was put on a treatment of active body cooling to cool her core temperature to a point that all the body systems would slow down so that her blood which was now filled with oxygen would not cause more damage to the areas that had been deprived mainly the brain being an area that can go crazy and not know what to do with a flood of oxygen after being deprived. The Dr.'s gave us the picture of the possible outcome going forward and let us know that there was risk of seizures any time which of course would cause more damage and the sooner any happened the worse it would be. Her breathing was being supported completely by the ventilator as well as she was being given a high dose of oxygen. Fluid was continuing to drain from the tubes. The cooling process was to take place over 72 hrs. . During that time the goal was to stabilize her blood, organs, and try to figure out the reason for the hydrops.
Our friend and photographer Tara Mansius came that night and took pictures for us of Lucy. We were so thankful for this especially as Tara had been up since 1 that morning assisting as a Doula on a birth in Portland.
We knew at this point that Lucy was basically being completely supported to live and a bunch of possible problems that could happen between then Thurs. night and Sun. night. If she made it through to that point it was just going to take time to see if she would wake up and what her brain functioning would be, if she could breathe on her own etc.
Grant and I were given and room and we prayed thanking Heavenly Father for her first triumph of getting her CO2 level to normal.