We have officially been home for five days and Mike was right. Once we started doing everything it is not that overwhelming. Don't get me wrong, it's a lot to remember, but overall we are so glad to be home. The first two days were hard. Lucy cried a lot and you can imagine what that does to a parent when the doctors say don't let her cry.....hence the last post. When we got to Wednesday Lucy was starting to get used to her new surroundings. I am hoping she thinks they are better because we are not poking her and waking her up constantly. It's now Friday and Lucy has woken up with smiles as she watches her mobile for the last three mornings.
Monday night we decided we were not comfortable sleeping in different rooms, so we set up Lucy's crib in our family room along with her feeding monitor and oxygen. We slept on the couch. Luckily our couch is comfortable and big enough to fit both of us. Lucy was sent home on a half liter of oxygen so we have oxygen tanks and also a compressor (which turns room air into oxygen). During the day we use the compressor, but it sounds like a generator so at night we switch over to oxygen tanks. On a half liter the tanks only last 20 hours so we are trying to conserve. We are hoping eventually her cardiologist will move her down to a quarter liter and we can use the tanks all the time. Here is a day in the life of Lucy
6:00 am - give medication
7:45 am - mix formula for the day. One packet gets Lucy through almost one day
8:00 am - change feeding bag and add vitamin to first feeding. She is still on continuous feeds so we add formula and reset monitor every four hours. Since we left we have gone up two milliliters an hour. She's now up to eighteen.
9:00 am - give medication
12:00 pm - add formula.
- give two ML of safflower oil (she is on fat free formula so this is how she gets her fat)
- give medication
2:00 pm - give medication
4:00 pm - add formula
8:00 pm - add formula
10:00 pm - give medication
11:00 pm - change from compressor to oxygen tank
12:00 am - add formula
4:00 am - add formula
The good thing about the NG tube is we never have to wake her for any medications or feedings so she can nap. Her naps are already getting longer. Between naps we are trying to work on her therapy, but we are trying not to push her to much since the environment is still new.
Tuesday we met our home nurse Nancy. We like her a lot. She gave us one piece of advice. When Lucy is sleeping or content in her crib, we should leave the room and do something. Whether it be taking a nap or reading a book. We needed to hear it. When you spend so much time in the hospital, we have what they call ICU psychosis. We spent so much time just watching Lucy in her bed that at home we find ourselves hovering over her crib all the time. We are working on it!
Thursday we had our first follow up appointment at the Norwood clinic. As we were packing up Lucy, I was thinking how does someone do this by themselves. We packed up her food monitor in a travel backpack, travel oxygen and diaper bag. Mike took the stroller out to the car and I put Lucy in her car seat. Then I carried Lucy, while Mike followed with oxygen and her food backpack. Once we got to the hospital, we place everything in the stroller and wheeled her in. Our first visit was a short one. Dr. Husayni ( her cardiologist) came in to listen to her and take her vitals. Then he reviewed her last echo. He said she looked good and we should move up the volume on her feeds to fatten her up! Honestly, I think the first visit is really for the parents to make sure they are doing okay. Before we left all the therapists came in to see Lucy, I swear everyone at the hospital loves her. One of the therapists asked to be paged when Lucy was at her appointment to make sure she could stop in.
All in all a good week. We hope we continue to settle in and eventually move to our bedroom for sleep, but that seems a few weeks away.
P.S. Lucy is now up to six pounds eleven ounces....just about the size of a small newborn!
Friday, May 23, 2014
Tuesday, May 20, 2014
Monday, May 19, 2014
We bid you farewell
Friday night we left the hospital around 9 pm to spend our last night at home alone. Yes, that's right we were three days away from bringing Lucy home. I can't even believe I get to write this update. Honestly this day is a long time coming.
Saturday morning we arrived at the hospital to do our forty eight hour room in. This has become a mandatory step in the discharge of babies from the PSHU. The doctors were finding that parents were not prepared for the care of the child when the discharge day arrived. I have to say that is definitely not us. We have been at the hospital for 96 days and in that time we have spent at the least 6 hours a day at the hospital, but most of the time more. The last twelve days one of us has been in Lucy's room almost 24 hour days (with the exception of a two nights at home just to sleep). The last two days we have taken care of Lucy ourselves as much as we were able in a hospital setting. We started using her feeding pump so we are familiar and have drawn and given most of her medications. Sunday night we had our CPR class and then Dr. Van Bergen came in to speak with us about discharge. We went over red flags, medications, doses, side effects, formula and who to contact for emergencies. The last thing he said 'you will be her doctor, nurse, therapist, but most importantly you will be her parents'. Weird how it is exactly what we wrote last blog post. It was finally starting to sink in. Our last night in the hospital.....what a crazy unpredictable journey, but we would do it all again to bring Lucy home.
This morning the doctors rounded and put in the official order for discharge. In true Lucy fashion, she is having one of her days. She has cried most of the morning and we were worried they would decide to keep us another day. We were able to get a couple smiles out of her.
Saturday morning we arrived at the hospital to do our forty eight hour room in. This has become a mandatory step in the discharge of babies from the PSHU. The doctors were finding that parents were not prepared for the care of the child when the discharge day arrived. I have to say that is definitely not us. We have been at the hospital for 96 days and in that time we have spent at the least 6 hours a day at the hospital, but most of the time more. The last twelve days one of us has been in Lucy's room almost 24 hour days (with the exception of a two nights at home just to sleep). The last two days we have taken care of Lucy ourselves as much as we were able in a hospital setting. We started using her feeding pump so we are familiar and have drawn and given most of her medications. Sunday night we had our CPR class and then Dr. Van Bergen came in to speak with us about discharge. We went over red flags, medications, doses, side effects, formula and who to contact for emergencies. The last thing he said 'you will be her doctor, nurse, therapist, but most importantly you will be her parents'. Weird how it is exactly what we wrote last blog post. It was finally starting to sink in. Our last night in the hospital.....what a crazy unpredictable journey, but we would do it all again to bring Lucy home.
This morning the doctors rounded and put in the official order for discharge. In true Lucy fashion, she is having one of her days. She has cried most of the morning and we were worried they would decide to keep us another day. We were able to get a couple smiles out of her.
As we pack up the room to leave I'm overcome with emotion. Excited to be going home, scared to leave the comfort of the nurses and unsure of what our future holds, but most important overjoyed to actually feel like family. Once we are settled we will open the doors for visitors. Please know we want everyone to meet her but doctor's orders are to limit her contact for her safety so at times we may say today is not a good day for a visit. We cannot thank all of you enough for following us through this part of our journey, for the prayers and well wishes. Act one may be over, but we have plenty more on the horizon.
Saturday, May 17, 2014
Just a couple of tweeks
On Sunday I got back to the hospital to find the team had changed Lucy from bolus feeds (48 ML every three hours) to continuous feeds (16 ML per hour). What a difference the change in feeding routine made. Lucy went from what we thought was a colic baby to a happy smiling baby. We are learning so much in the process. Due to her heart condition her oxygen rich blood is only saturated at 75 to 85 percent (normal heart has 100 percent saturation). When this blood is pushed to the body, it's smart enough to know that the blood needs to go to the vital organs first....brain, liver, kidneys. Stomach is the bottom of the barrel. For Lucy, this did not allow her to process the formula all at one time which gave her so much discomfort that she was crying all the time. As she gets stronger this should change and she will be able to handle feedings, then eventually take a bottle. This smiling little face makes days spent in the hospital worth it!
Next the team started to ween all medications that are not needed for when she is at home. As the team made changes Mike and I started studying all the things we will need to know for her care. I have to say it is overwhelming, but Mike just seems to make it all okay. He tells me that it will be overwhelming until we do it and then it will just seem like nothing. We have been watching and learning all along. Just to get a glimpse into her care, here are the things we have to know:
- use a feeding pump
- put in an NG tube and check for placement (this is how she gets food).
- use an oxygen pump (Lucy will come home on oxygen to keep her saturation over 75%)
- draw and administer medicine
- speech therapist (teaching her how to take a bottle, her suck/swallow reflex has to be taught since she was intubated after birth)
- physical therapist (teaching her how to move and that all movement doesn't hurt)
- occupational therapist (most of her experiences have been negative and we have to teach her that she can be safe outside of a swaddle)
- know any signs of distress while teaching (when she is overloaded with stimulus she feels out of control and we have to stop so that learning doesn't become a negative experience)
- know her red flags
Last but certainly not least we still have to be her parents. Sometime it escapes me that on top of all the stuff we need to teach her (that most babies develop automatically) we still just need to be her mom and dad. We hope that when we come home and transition to life outside the hospital this will be easy and all the things listed above just become routine.
She has come so far...she finally found her hands and was able to do tummy time without getting upset.
As we move closer to going home we ask that you pray for Lucy's continued progress and for a easy transition to home living. And maybe some added strength for Mike and I as we become her full time care givers.
Wednesday, May 14, 2014
We moved!!!
What a week it has been. We officially moved down to floor two last Wednesday and Mike and I moved into the hospital. Yep, that's right, we pretty much live there. Last Tuesday, the RN put in an order for a bed as the team felt that Lucy was no longer a critical care patient. The order is for an open room on floor two with glass doors by the nurses station. She is higher risk than most of the other patients on this floor so Lucy needed to be in a specific room. Wednesday afternoon a bed opened and we packed up to ship down there. To move her, they use wagons. The nurses pad up the wagon and placed Lucy in there and we wheeled down to our new room.
Once down in our room, the nurse took her vitals and reviewed her scars and any current scabs. Then we got her settled and started unpacking. The nurse to patient ratio is different on floor two ( it's one to four) so the parents are involved more in her care. Mike and I had decided that every couple of days we would each take a break and sleep at home. I stayed the first night. It is anything but normal. Since our room has glass doors, we pull the curtain for privacy, but the nurses still need to come in for medications and feedings. The first night I slept about two hours. I think Lucy got about seven. She is a noisy sleeper and at any slight movement or sound I was out of bed hovering over the crib. Crazy, I know. Lucy slept from nine to about three and then was up for an hour and a half before settling in for a few more hours. She slept almost all day Thursday. I was thinking what a change in her, just moving to a quieter floor where nurses and doctors are not bothering her every two hours. We should have known better. Thursday night both of us stayed and again more of the same....sleeping. Then Friday the old Lucy was back. She would not calm unless she was being held or patted on the back. She could fall asleep in our arms but the minute we tried to transfer her to bed, up and screaming. Needless to say by mid afternoon Saturday we were ready to pull out hair out. Now I know, that's what babies do and I'm okay with that. But imagine the doctors also tell you she can't cry for long periods of time and adding to it, you're break isn't going into another room or stepping out your front door for a quick breath. It is sitting next to the Mike holding a screaming baby on a make shift couch/bed. And talking to the doctors we felt stumped at what could be making her so crazy. Helpless is the best description I have. Thank gosh Aunt Erin came to visit and give our arms a much needed break. Then I got another break as I went home for the night to relax and get some sleep while Mike stayed with Lucy.
Once down in our room, the nurse took her vitals and reviewed her scars and any current scabs. Then we got her settled and started unpacking. The nurse to patient ratio is different on floor two ( it's one to four) so the parents are involved more in her care. Mike and I had decided that every couple of days we would each take a break and sleep at home. I stayed the first night. It is anything but normal. Since our room has glass doors, we pull the curtain for privacy, but the nurses still need to come in for medications and feedings. The first night I slept about two hours. I think Lucy got about seven. She is a noisy sleeper and at any slight movement or sound I was out of bed hovering over the crib. Crazy, I know. Lucy slept from nine to about three and then was up for an hour and a half before settling in for a few more hours. She slept almost all day Thursday. I was thinking what a change in her, just moving to a quieter floor where nurses and doctors are not bothering her every two hours. We should have known better. Thursday night both of us stayed and again more of the same....sleeping. Then Friday the old Lucy was back. She would not calm unless she was being held or patted on the back. She could fall asleep in our arms but the minute we tried to transfer her to bed, up and screaming. Needless to say by mid afternoon Saturday we were ready to pull out hair out. Now I know, that's what babies do and I'm okay with that. But imagine the doctors also tell you she can't cry for long periods of time and adding to it, you're break isn't going into another room or stepping out your front door for a quick breath. It is sitting next to the Mike holding a screaming baby on a make shift couch/bed. And talking to the doctors we felt stumped at what could be making her so crazy. Helpless is the best description I have. Thank gosh Aunt Erin came to visit and give our arms a much needed break. Then I got another break as I went home for the night to relax and get some sleep while Mike stayed with Lucy.
Monday, May 5, 2014
Rumors
Well the rumors were just that, rumors. We are still in the PSHU. We did not move down to floor two and we are really sad about it. Lucy had her left chest tube removed on Saturday and she was doing well. She only has monitors attached to her now. Her PIC line is still in but not being utilized. She also got to visit with Uncle John and Aunt Cassy. She tried so hard to stay awake for the visit. But only made it about fifteen minutes.
Sunday Lucy was fussy. She would only calm while being held. She has spent the first twelve weeks of her life in a hospital bed and the majority of the time with tubes come out of her. I don't blame her for just wanting to be cuddled. In any case, this is part of the reason we did not move on today. The doctors are being extra cautious to make sure the crying is not a result of anything other than being a baby. After today, Mike and I think she is crying because she is just so tired. In a twelve hour span she got about four to five hours of sleep. The longest stretch was two hours, most of it was half hour increments. Every time she falls asleep it seems someone comes in to evaluate or mess with her.
Her stats have been good. Her heart rate has been in the 150, blood pressure has stayed where they want and her oxygen saturation is between 75 and 85. She is on a quarter liter of oxygen and it's possible she will be sent home on that. Every time they stop the oxygen, her saturation drops to under 70. Even when she is fussy her blood pressure doesn't sky rocket like it used to. All these are good signs and Mike and I are ready to be down there to start taking care of her ourselves and bring her home. We have started giving some medications, change her diapers and give her dips of breast milk on her pacifier to prepare her for bottle feedings.
Sunday Lucy was fussy. She would only calm while being held. She has spent the first twelve weeks of her life in a hospital bed and the majority of the time with tubes come out of her. I don't blame her for just wanting to be cuddled. In any case, this is part of the reason we did not move on today. The doctors are being extra cautious to make sure the crying is not a result of anything other than being a baby. After today, Mike and I think she is crying because she is just so tired. In a twelve hour span she got about four to five hours of sleep. The longest stretch was two hours, most of it was half hour increments. Every time she falls asleep it seems someone comes in to evaluate or mess with her.
Her stats have been good. Her heart rate has been in the 150, blood pressure has stayed where they want and her oxygen saturation is between 75 and 85. She is on a quarter liter of oxygen and it's possible she will be sent home on that. Every time they stop the oxygen, her saturation drops to under 70. Even when she is fussy her blood pressure doesn't sky rocket like it used to. All these are good signs and Mike and I are ready to be down there to start taking care of her ourselves and bring her home. We have started giving some medications, change her diapers and give her dips of breast milk on her pacifier to prepare her for bottle feedings.
We ask specifically for prayers for Lucy's irritability. That she can be calm and is able to get some rest.
Saturday, May 3, 2014
baby steps
This week has been small steps to getting Lucy ready for the floor. On Tuesday morning I arrived at the hospital to find they had moved Lucy to a big girl bed. She was starting to look big in the radiant warmer and now in the regular size hospital crib looks tiny again.
Over the last couple of days we have been dealing with some crabbiness and it has been a challenge to get Lucy on any sort of schedule with her eating and medications.
Tuesday morning her right chest tube was removed, so they held her feeding. Her left tube was still draining quite a bit and due to the collapsed lung the doctors are really cautious about removing it. They do not want to have to put it in again if fluid accumulates a day or two later. Her afternoon and evening feedings ended in vomiting so Lucy was put back on continuous feeds for the night at fourteen ML an hour. They wanted to settle her stomach before going back to bolus feeds. She was given a dose of pain medication and through Tuesday morning she was very lethargic. Two doses of her sedation medications were held so she would be more awake. By Wednesday she was really crabby. We weren't sure if it was because she was hungry or she needed more medication. We were able to get her to tolerate her forty two ML of formula (every three hours) all day, but she still cried a lot. Then on Thursday she got her blood tranfusion. For this procedure, she can't have food an hour before or after and the process is three hours long. It was another day of inconsistensy and lots of crying. By the end of the day I was at my witts end. Thank gosh for Mike. He was able to take over soothing duties for the evening visit. We have come to find out she likes a firm back patting....can you feel the burn in our forearms? They are on fire! Grandparents you may want to start flexing those muscles. Friday still had some crying, but we were able to hold a normal schedule and her crying did seem in line with feeds. She was able to get in some good naps after an entire night of being up. She also had some constipation in the morning which didn't help with her comfort.
A rare moment this week without tears.
The rumors swirling around the PSHU are that Lucy could go to the floor by Monday, which means there's a possibility we would be home for Mother's Day. We still have a lot to learn. I met with Angela to talk about what would happen when we move down there and going home. Angela is the Norwood Nurse (or at least that's what I'm calling her). She deals with all Norwood patients until they have their Glenn procedure. She informed me we will be best friends. I'm okay with that if we can call her at 2 am on a random week day because we can't get Lucy to settle down. Anyway, most patients are on Floor two for three days. Like I said in my last post, we'll be taking care of Lucy. She also suggested that our Grandparents come in during that time to help and observe and ask any questions. They will be involved in her care so it's important for them to be comfortable with feeds, medications and temperment. When we do come home, we will have a home nurse that visits twice a week for the first two weeks. We also have to attend the Norwood clinic once a week. It was comforting to know that we will see a nurse three times a week for the first couple weeks home. The one thing so many of the staff keep repeating is 'you are not alone, just because you leave the hospital doesn't mean our care stops'. I wonder if there has ever been a mom that has called everynight for the first month being home. I kid.
Lucy prays "please let me go home soon!"
Over the last couple of days we have been dealing with some crabbiness and it has been a challenge to get Lucy on any sort of schedule with her eating and medications.
Tuesday morning her right chest tube was removed, so they held her feeding. Her left tube was still draining quite a bit and due to the collapsed lung the doctors are really cautious about removing it. They do not want to have to put it in again if fluid accumulates a day or two later. Her afternoon and evening feedings ended in vomiting so Lucy was put back on continuous feeds for the night at fourteen ML an hour. They wanted to settle her stomach before going back to bolus feeds. She was given a dose of pain medication and through Tuesday morning she was very lethargic. Two doses of her sedation medications were held so she would be more awake. By Wednesday she was really crabby. We weren't sure if it was because she was hungry or she needed more medication. We were able to get her to tolerate her forty two ML of formula (every three hours) all day, but she still cried a lot. Then on Thursday she got her blood tranfusion. For this procedure, she can't have food an hour before or after and the process is three hours long. It was another day of inconsistensy and lots of crying. By the end of the day I was at my witts end. Thank gosh for Mike. He was able to take over soothing duties for the evening visit. We have come to find out she likes a firm back patting....can you feel the burn in our forearms? They are on fire! Grandparents you may want to start flexing those muscles. Friday still had some crying, but we were able to hold a normal schedule and her crying did seem in line with feeds. She was able to get in some good naps after an entire night of being up. She also had some constipation in the morning which didn't help with her comfort.
A rare moment this week without tears.
The rumors swirling around the PSHU are that Lucy could go to the floor by Monday, which means there's a possibility we would be home for Mother's Day. We still have a lot to learn. I met with Angela to talk about what would happen when we move down there and going home. Angela is the Norwood Nurse (or at least that's what I'm calling her). She deals with all Norwood patients until they have their Glenn procedure. She informed me we will be best friends. I'm okay with that if we can call her at 2 am on a random week day because we can't get Lucy to settle down. Anyway, most patients are on Floor two for three days. Like I said in my last post, we'll be taking care of Lucy. She also suggested that our Grandparents come in during that time to help and observe and ask any questions. They will be involved in her care so it's important for them to be comfortable with feeds, medications and temperment. When we do come home, we will have a home nurse that visits twice a week for the first two weeks. We also have to attend the Norwood clinic once a week. It was comforting to know that we will see a nurse three times a week for the first couple weeks home. The one thing so many of the staff keep repeating is 'you are not alone, just because you leave the hospital doesn't mean our care stops'. I wonder if there has ever been a mom that has called everynight for the first month being home. I kid.
Lucy prays "please let me go home soon!"
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