Thursday, March 13, 2008
Things I should have known...
Tuesday, February 26, 2008
More Pictures and Videos
Saturday, February 23, 2008
Home at last!
Wednesday, February 20, 2008
Ad libbing
Sadie's up to ad lib bottle feeding every three hours. This means that Sadie is given a bottle every three hours but it's up to her to decide how much she drinks. It's okay if she drinks 40mL at one feeding and 75mL at the next as long as she continues to gain weight.
So for the next two days, it's all up to you, Sadie. Good night, little girl. Go Sadie, go!
Tuesday, February 19, 2008
Back to 2/3
On Monday morning, the doctor put Sadie back on the 2/3 bottle feedings. She'll be her doctor all week except Wednesday, so hopefully her feeding schedule won't get changed again for a while. That is, unless they change it to every feeding. That would be a good thing. She's been doing alright and finishing most of her bottles.
As of last night, she was up to 7 pounds, 6 ounces. I'm going from memory, so I'll edit the blog later if I remembered wrong.
Sunday, February 17, 2008
A rollercoaster ride
The past couple days have been a rollercoaster ride. The last update was a good one as they increased her bottle feeds to two out of every three. Well, that didn't last too long. She did okay until Saturday. In addition to bottle feed every 2 out of three times, the doctor wanted her to drink 65-70mL within 30 minutes. At her 12:30am feeding, she took over 45 minutes to drink 35mL. She At her 3:30am feeding, she took over 30 minutes to drink 37mL so they stopped and gavaged the rest (60mL total). Because she was having so much trouble drinking the required amount within 30 minutes, the doctor reverted her back to a bottle every other feeding. On Friday, they also measured her hematocrit level and it was unchanged at 30 after four doses of epogen. At the time, this was devastating. We were so excited that she was doing so well at her 2/3 feedings that we thought it was okay to expect her to come home in a week or so. We know from experience with Aedan to never expect your baby to come home at a certain time, but it's next to impossible to do so. Saturday was a very hard day, but things got a bit better.
Saturday night at 6:30pm, she ended up drinking her full 60mL bottle within 30 minutes. Sunday morning at 12:30am, she drank 50mL. At 6:00am, it was 60mL. We gave up the idea of her coming home the middle of the week, but this was the hope we needed. We now knew that she wasn't spiraling down, she just had a tough day trying to keep up with the increased bottle feeds. Preemies tend to not like too many things changed at once. With her hematocrit still at 30, her number of feeds increased, and then the amount per feed increased, we think that was just too much for Sadie to deal with.
They did a repeat of the labwork Sunday morning. Her hematocrit was up to 34! Also, the doctor that was on duty changed the orders to ad lib feedings every 3-4 hours. This meant that they'd feed Sadie when she woke up and acted hungary as long as it was every 3-4 hours. We spent the day with Sadie today and she ended up doing relatively well with this schedule. She took her first bottle with us at 12:35pm and took an hour to drink 33mL. It took a long time, but we also had to stop to change she diaper three times as she wanted to make room. We were a bit disappointed when we left for lunch, but when we came back, Melody (her nurse) said that Sadie she found Sadie "eating her blanket" so she tried feeding her more. Sadie ended up drinking another 30mL in fifteen minutes. She started acting hungary again at 5:30pm and ended up drinking 55mL in a half hour. Then, when we got home, there was a message from Melody that she drank 45mL at 7:00pm. She may not be eating exactly the way the doctors want, but she is showing them that she can eat quickly when she wants too. We are praying that the doctor's orders stay at ad lib every 3-4 hours. With so many changes to her feedings lately, it's impossible for Sadie to show the doctors what works and what doesn't. We're also praying that she continues to do well with her feedings and continue to gain weight.
Liz is Sadie's nurse again tomorrow. Jen is going to stay with Sadie most of the day and I'm going to stay home with Aedan. There are a couple things that still need to get done in Sadie's room and there's other stuff around the house that's been piling up since we are gone so much. Hopefully, tomorrow will be another good day...
Last, but not least, she's up to 7 pounds, 1.1 ounces.
Wednesday, February 13, 2008
She's graduated to 2/3!
She's had her third dose of Epogen today. They will measure her hematocrit level again on Friday. Hopefully the number will have gone up showing the Epogen is working.
Sadie is still gaining weight - she's at 6 pounds, 13 ounces as of last night.
Nanny (Jen's mom) got the visit Sadie for her birthday on Tuesday. Tonight, my parents will get to visit Sadie for a while.
Sunday, February 10, 2008
The Long Awaited Update
Sadie had a good stretch of eating her whole 56mL bottle for about a day and a half. She has since become more and more tired and therefore not waking up to eat. She's now only drinking a full bottle every once in a while. Her average is between 30-45mL. She is up to 58mL every feeding and is still on the every other bottle/gavage schedule.
They have been measuring her hematocrit levels for the past couple weeks. It's been getting lower every time and this could be the cause of her sleepiness. On Saturday, they measured it again and it was down to 30. Because of this, they started her on a drug called Epogen. This will help her body produce more red blood cells. Sadie will have an injection every other day for two weeks. Once her red blood cell count is normal, Sadie should be more alert and less sleepy. This should help her stay awake to finish her whole bottle.
How long is she going to be in the hospital? Well, we really don't know - it's up to her. The Epogen needs to start working and then Sadie should start progressing on her feedings again. Once Sadie shows the nurses/doctors that she can eat her whole bottle every other feeding, they will increase the bottles to two out of three feedings. Once she shows she had handle that, they will bottle feed her every time. Once she does that for a while, we get to take her home, provided that nothing else comes up. We are hoping that all will happen in two to three weeks, but we really don't know. It could be less or it could be more.
Oh, and she's 6 pounds, 9 ounces as of last night.
Will update soon...
Tuesday, February 5, 2008
Six Pounds!
There are new pictures and videos from the past few days, uploaded for your viewing pleasure.
Sunday, February 3, 2008
Almost Six Pounds
The only other problem with Sadie is that she's producing a lot of "stuff" in her nose. She's been desatting a lot lately (the percent of oxygen in her blood is going below 88%). She'll sound congested and the nurse will suction out A LOT of stuff from her nose. After that, her oxygen saturation levels are good. It may be reflux or it may be a dry nose from having the CPAP and nasal cannula. We'll be talking to the nurse/doctor about this.
I updated the pictures so there are some new ones available.
Thursday, January 31, 2008
Moving Rooms
After we visited Sadie yesterday, I turned my cell phone back on and it said that I had a message. It was Bev (Jen's mom) and she said that she was driving Mike (Jen's dad) to the ER. Mike was burned pretty bad when he was working on his car. He was trying to fix a coolant leak when a hose came off and sprayed him with hot coolant. After his pain was stablized, he was admitted (hense moving from his bedroom to a hospital room). We visited him today before we visited Sadie and he seemed to be in pretty good spirits considering the situation. He has first and second degree burns on his abdomen, neck, lower face, arms, and hands. The doctor said that he's in the hospital until Saturday or Sunday mainly for pain management. He has some medication that he's applying to the burn sites. I don't think they are too worried about scarring.
The other move was a good one. At 3pm today, Sadie was moved from Room 1 to Room 4 in the NICU. Although there aren't technically rooms where healthier babies are taken care of, the room Sadie is in has one nurse for three babies opposed to Room 1 where the ratio is usually 1:2. She ate okay today at her 2:30 feeding. She drank half of her 40 something mL bottle and the remainder was gavaged. When I called tonight to check on her, she weighed 5 pounds 11.5 ounses. The 2 ounses more than yesterday and 5.8 ounses more than when she was born.
I finally got the photos up to date and added one more video, so you have more to look at now.
I'm exhausted. It was a busy day with work, dropping Aedan off at Madai's, going to the hospital to see Mike and Sadie, and keeping the home fire burning. Jen's already sleeping and I'm about to join her in her slumber...
Wednesday, January 30, 2008
Three meals a day
She's doing well. They've increased the times she can bottle or breastfeed to three times every 24 hours. That's great news as she is continuing to progress. At her 2:30 feeding she was able to breastfeed for 10 minutes and then she drank all of her 21ml bottle in 4 minutes for a new speed record.
Tuesday, January 29, 2008
Self-Inflicted Tubectomy
I called the NICU at nine tonight expecting to get a report on how much Sadie drink from the bottle and how much they had to gavage at the 8pm feeding. The nurse said that Sadie drank all 40cc's of her bottle at 5:30. Five-thirty? Turns out Sadie decided to give herself a tubectomy (she pulled out her feeding tube) right before she was supposed to be gavaged so they ended up bottle feeding her. The good news is that her left cheek gets a break from having the NG (the tube) attached to it. It's the right cheek's turn. The better news is that she drank her whole bottle in 25 minutes. That's very good! She just needs to continue drinking her whole bottle every time before they'll up her bottle/breastfeeds to three times every 24 hours.
For me, my first half day back at work went well. I felt missed which was nice and everyone was asking how Sadie and Jen were holding up. I work with a great bunch of people! They even surprised me with a basket of goodies for Sadie and a gift card to Target.
Jen's recovering extremely well and is able to do more and more every day. She's almost back to normal. The pain she has laying on her side or changing positions in bed is lessening as well.
It's after 10:30 and I still haven't updated the pictures. That makes two days I owe you. I make sure I get them uploaded tomorrow. Sorry to keep you waiting!
Monday, January 28, 2008
No news is good news...
The other change is that I'm starting work tomorrow. I'll be working half days, but it will still be a significant change for both me (getting up a lot earlier) and for Jen (taking care of Aedan on her own).
I do have new pictures today, but didn't upload them yet. Sorry to keep you waiting but I need to get to bed!
Saturday, January 26, 2008
Out of the Isolet, No More IV
Friday, January 25, 2008
Breathing on her own
- She is now breathing on her own without any assistance.
- Her gavage tube has been moved to her nose since the nasal cannula is gone. This will make feeding her easier since there is nothing in her mouth now.
- The IV in her scalp actually didn't take so she has an IV in her hand again.
- They are going to discontinue the TPN order when it expires either tonight or tomorrow morning. I'm not sure what it stands for, but that in the order with what nutrients and vitamins are given to her through the IV. I think they are discontinuing it because she's drinking a lot of milk now.
- I'm not sure of the number, but her bilirubin is okay as she isn't on the lights.
We also talked with the doctor. She agreed that Sadie is doing great, but didn't want us to get our hopes up that she will be leaving soon. She just wanted us to continue to be realistic. She said that most babies fully develop the instinct to suck at 36 weeks (from conception). Although she might be able to bottle or breastfeed some of the time, it most likely will not be until Sadie is at 36 weeks that she'll start to feed like this all the time. She used an analogy of expecting a 6 month old to do things that a 12 month old can do. This same way, we shouldn't expect preemie at 34 weeks to do things a preemie at 36 weeks should be able to do. We both wish that a doctor would have explained it to us this way with Aedan. That would have made things a lot easier.
Have a great weekend everybody and thanks again for all your prayers for our little girl!
Thursday, January 24, 2008
A Day of Firsts
Feedings:
She also started getting fed from a bottle and breastfed. In terms of the amount she's eating, it is being increased by 2cc's every feeding. She was up to 16cc's (about a tablespoon) at her 10:30am feeding. They will gavage her through the tube to her stomach most of the time and bottle or breastfeed starting twice a day. They will then increase that number as she does better and better at her feedings.
Breathing:
The doctor has also ordered that she get weaned off the nasal cannula as long as she is able to breathe well without it. The nurse decreased the flow to 0.5 liters of pressure for an hour today and she did well. They continue to decrease the pressure for longer periods of time until she's breathing on her own with no extra oxygen or pressure
Her IV:
If you've seen today's pictures, you might have noticed that she now has her IV in her scalp. She's had to have her IV replaced a couple times in the NICU. Because Sadie is a bit more chubby than the normal NICU baby, it a little harder to find good veins for her IV. They spent 10 or so minutes trying to find a good vein in her hands or feet and were unsuccessful. The next step in to put an IV in her scalp. They say that it's actually less painful than a hand or foot IV and it will actually last longer. So hopefully she won't need her IV relocated for a while. My mom asked me what they were giving her though the IV and I'm sure she's not the only one. As far as I know it's just nutritional and doesn't include any medicine. If I remember right, it's some form of sugar (dextrose?), some lipids (fat), a neonatal vitamin mix, and some other things.
Other stuff:
Her bilirubin level bumped up a bit and was up to 7.2 from 6.7 yesterday. This is normal and as long as it's below 10, she shouldn't need to be on the lights anymore. She is also regulating her temperature quite well. One of the nurses said that if she's able to sustain her body temperature on her own, she'll be able to move from the isolet to a bassinet. That's another of the little steps she needs to take in order to come home. Every little step helps.
Mom and Dad:
We're doing well. Jen continues to heal from her c-section and is able to do more and more each day. The pain with her pelvis, or Sympysis Pubis Separation, is still rearing it's ugly head when she's lying down, but she's able to sit, stand, and walk with little or no pain. We are adjusting very well to getting up three times a night due to Jen's pumping schedule.
Technical Update:
If you haven't noticed, I finally got the video of Sadie being born up onto YouTube.
Wednesday, January 23, 2008
Making Progress
Sadie still has a lot of things she needs to do in order to go home, but we are very thankful that she's progressing so quickly. Thanks again for all your thoughts and prayers!
Tuesday, January 22, 2008
Long road with many steps
Respiratory System:
She has gone from a CPAP with oxygen levels in to 30% range down to 21% (same as normal air). Then she graduated to a nasal cannula. She's currently between 21-30% oxygen at 2 liters of pressure. The next step is to lower the pressure to 1 liter. This may happen tomorrow or the next day. Then when she is breathing fine for a day or two on the cannula with 21% oxygen and 1 liter of pressure, they'll try removing the cannula. The trick is to give her just enough support for her respiratory system to grow and develop without creating stress on Sadie.
Feeding:
She's currently eating 5cc's of milk every three hours. She has been doing well with this so they will most likely start increasing the amount they feed her tomorrow. They will continue increasing the amount and eventually she will graduate to being bottle fed. The danger with going to the bottle to quickly and it can have an effect on the respiratory system as Sadie may be concentrating on eating too much and forget to breathe. "Suck-Swallow-Breathe" is one of the main things Aedan has to master before he was able to come home.
Heart:
Looks like we are out of the woods for the most part on this front. Her hole (PDA) closed successfully with the first set of indocin. The only residual "problem" is a slight heart murmur. The name for this has escaped me, but it was caused when the hole closed. The closing of the hole created a small part of the heart that is a bit thicker than it should be. This causes a little turbulence in the heart, thus the murmur. This will work itself out as the heart grows and will not prevent Sadie from coming home. The cardiologist said the Sadie's pediatrician will be notified and will follow up as Sadie gets older.
Final Thoughts:
We're adjusting to life at home with Aedan again. I can tell he likes being home, although he did enjoy his sleepovers with Grandpa/Grandpa and Nanny/Papa. He is an extremely well balanced kid and we are very thankful that he did so well being away from us as much as he was. Jen's walking quite well but sleeping is still a core. The pelvis pain still is occurring when she lays on her side or turns over in bed. Please pray that she's able to sleep well and that the pain continues to subside whether she's walking, sitting, or laying down. Well, it's time for bed. Thanks again for all your prayers and well wishes - they mean the world to us.
The hole is gone!
We visted Sadie this morning. She still is as cute as ever. She was put back on the CPAP for a while last night. They ended up suctioning a lot of stuff out of her nose and after that she was put back on the nasal canula and has been doing well ever since. She's also "eating" through the tube to her stomach and has been tolerating that well.
If all goes well with the lights, she'll be off of them tomorrow. If she does okay will the 5cc feedings, they'll most likely start increasing the amount she eats.
Monday, January 21, 2008
Home at last
Sadie is still on the nasal canula which is a great sign the indocin is working. Hopefully, we will hear the good news that the hole has closed when we visit Sadie tomorrow.
It's a little after 10pm - Aedan's fast asleep, Jen's snoring peacfully, and I'm ready to join her...
P.S. There are more pictures and a new video of Sadie kicking.
Under the lights without the CPAP
A little before noon Liz was able to take off the CPAP and graduate Sadie to a nasal cannula. So far Sadie has been doing great keeping her oxygen saturation levels where they should be.
Sadie also had her last dose of indocin. Now it's time to wait for the indocin to work and close the hole in her heart.
Jen had her staples removed and replaced with steri-strips. She's also doing very well. We are in the process of figuring out when exactly we'll leave for home today.
Sunday, January 20, 2008
Holding Sadie
Sadie's status really hasn't changed all that much. She took the first dose of indocin at noon and will take the last two tomorrow - one at midnight and the last at noon. Please keep praying that the indocin will work and the hole will close without surgery.
Mom and Dad are mentally preparing for departure tomorrow. It will hit home a little more once we are way from the hospital and aren't within walking distance of our girl. I'm so thankful that she's only 20 minutes away. This time around will be so much easier than the one hour trip from Livermore to Oakland when Aedan was in the hospital.
Technical Difficulties
High Tech Hospital Stay
Blog: http://bullfrogskin.blogspot.com
Pictures: http://picasaweb.google.com/bullfrogskin
Videos: http://www.youtube.com/bullfrogskin
Not your normal PDA
Prayer requests:
Please pray the the indocin works the first or second time and she won't need the surgery. Please also pray that this is the reason that she's needed to be on the CPAP and after the hole is closed, her lungs will start working to the point where she doesn't need it anymore.
Mom and Dad:
We are doing well. Liz prepared us by saying what PDA was and that it may be a possibility with Sadie. Because we already knew what it was, we weren't as shocked this morning as we could have been. I had a bit of a hard time yesterday as I realized emotionally that Sadie was going to be in the NICU for a while. My head knew it was going to be a month or more, but I guess it took a while for my heart to catch up. Jen's progressing well and it able to walk more and more with less and less pain.
Saturday, January 19, 2008
Saturday Update
We visited Sadie around 8am. She is still doing well and her CPAP is still at 21% oxygen. She was in the isolet so we weren't able to hold her, but Jen was able to change her diaper (view the video). They think the CPAP may come off tomorrow. The next step would probably be a nasal cannula. That's just two small tubes and prongs that go in her nostrils. Even though she'll be at 21% oxygen, she still needs to have the air that she breathes under a bit of pressure.
Afternoon/Evening:
She was still on the CPAP. They did start to feed her 5cc's of milk/formula every three hours and she was tolerating that well. When Liz (our friend who happens to work in the NICU) vistied Sadie in the afternoon, she noticed Sadie was a little jaundice. Aedan had this when he was born and is "yellowing of the skin or eyes because the liver has not developed well enough to remove bilirubin, a substance produced when red blood cells are broken down (excess bilirubin causes the yellow color)" This is also normal for premies. Jen was able to hold her again. This time the CPAP and all the other things stayed attached to her. Because of this, Jen was able to hold her for a half hour, which was very nice. I'm kicking myself for not bringing the camera.
Mom and Dad:
Jen's doing well and is able to walk fine. She still get's tired after a while, but she is recovering very nicely. She's slated to get out of the hospital sometime on Monday after her doctor visits her. I'm doing well. I've been able to sleep in the hospital bed next to Jen so that's been nice. I continue to shuffle people back and forth through the maze of the second floor to see Sadie. Visitors need to be accompanied by a parent to pass the gauntlet and I'm a bit more able to do that than Jen.
Friday, January 18, 2008
Friday Update
Evening: At 9:30pm Jen and I visited Sadie. They were changing her bedding and had unhooked her from the CPAP (the tube that gives her air) so we were able to hold her. You can see the video on YouTube by clicking here. It was very nice to see her face without the tubes in her mouth and nose.