It has been quite some time since I have updated this blog- which I like to look at as a good thing since this is supposed to hold all of the medical stuff. We are quickly approaching Julia's tongue reduction surgery. She will be having surgery on February 27th- less than 2 weeks away. We go to St. Louis on the 25th, she has an appointment on the 26th, and the surgery on the 27th. I talked to the pre-op people on Wednesday and we won't have a time for her surgery until the day before, but they said it typically goes youngest to oldest so it is likely Julia will be first (surgeries start at 8:00am).
We are anxious for the surgery and follow-up care- some days I wonder if we should really do it, but I know long-term we will be glad we did it. It is just hard to send your smiling baby girl away to basically change her smile. I know it is definitely not for that reason, but my logical side doesn't always win. I just keep telling myself that by April, life should be back to normal.
Julia does great taking bottles from us- about 6 ounces in 15 minutes and she doesn't seem to mind when she gets one. Hopefully this continues after surgery. She is also still nursing and we are hoping she will continue to after surgery.
She is doing great with everything else- smiling, rolling, talking. She tries to sit up when we are holding her. She had blood work for her AFP done this week (on Monday) along with an ultrasound. They weren't able to get a good view of her left kidney so we had to take her back in today for another ultrasound. Luckily she didn't have to fast for this one. They got all the shots they wanted. They saw a few things on the one today, I'm not exactly sure what all- we go to the geneticist on Monday. When I talked to him on the phone today, he said some of it is likely because of her age- something about calcification in the left kidney. He debated on setting up another ultrasound in 6 weeks instead of 3 months, but after conferring with the radiologist, he said he doesn't feel it is necessary- which is always good to her. Her AFP numbers were great which is another positive.
We are now just waiting to head to St. Louis. She isn't supposed to get sick between now and then so I am doing my best to keep her in a bubble. Mostly just washing hands lots, changing towels and washcloths, and trying to keep Oliver and Parker from being directly in her face (sometimes I feel like that is a losing battle). I will be updating in the next few weeks as her surgery and recovery progresses.
Friday, February 15, 2013
Tuesday, November 13, 2012
St. Louis Dr. Visit Update
Eric and I traveled to St. Louis with Julia to meet with Dr. Marsh, a pediatric plastic surgeon. One of her symptoms of BWS is having a large tongue and Dr. Marsh is pretty much one of the best people in the world who does tongue reduction surgeries. He told us that to count, he has done about 330 tongue reductions, including 2 last week. He has pretty much perfected a method to do it and comes highly recommended in all recommendations that I have read. One of the strongest, which I think I mentioned in my last post, is from Dr. Beckwith, who stated that if it was his grandchild, he would listen to and do whatever Dr. Marsh recommended regarding the child's tongue. He recommends doing it prior to 1 year for a variety of reason.
On to the day of the appointment, we left Monday (November 12) morning a little after 8:00 am and got to St. Louis a little after 11:00. We went and had a quick lunch and then headed to the hospital to meet with Dr. Marsh and his team. Our appointment started at 1:00. We met with Kristen, who is the BWS coordinator for Dr. Marsh. She took a brief medical history on Julia and asked lots of questions. Next, Dr. Marsh and his nurse/nurse practitioner (DeAnn) came in for the consult. Dr. Marsh talked to us about a few different things, said he agreed with our geneticist's clinical diagnosis of BWS for Julia, and then took a look at Julia's mouth and tongue. She cooperated very well for this, it wasn't long, but typically I don't think babies like fingers and tongue depressors being shoved in their mouth. He told us that he does feel Julia is a good candidate for a tongue reduction surgery. He said on his scale of 1-10, 1 being the smallest tongue he would recommend surgery on and 10 being a tongue that couldn't physically fit in the mouth, he would rate her at a 4. He said there are 3 main reasons to do surgery and he said she fits 2 of the 3. One is problems breathing, which thankfully doesn't affect her. The second is jaw placement, he said right now, her top and bottom gum meet exactly. Over time, they may stay like this, but more than likely, the lower jaw will come out further than the upper jaw, which would create a need for jaw surgery and extensive orthodontics in the future. The third is social and emotional reasons, he said she would learn to consciously think about keeping her tongue in her mouth and be able to, but when concentrating or being tired, it would more than likely come out and kids would probably make fun of her. He said recently they have had a few 12-14 year olds come in who found out about the tongue reduction surgery on their own and requested to have it done so that they didn't have to deal with it anymore.
He explained about the surgery and what he would do. He will basically cut a wedge shape from the front of the tongue, then trim each side of her tongue. After all of the cutting, he will stitch the front together (where he cut the wedge from) to create a tip and he will stitch each side back together (where he trimmed). He said she should still have normal taste buds. He said that of kids who have tongues like this, 90% will need speech, he said if they have the tongue reduction surgery, that 50% will need speech and 50% will not need speech.
DeAnn went through the recovery process with us. She said the first day looks pretty rough and is pretty rough, but it gets better quickly. She said by day 2, pretty much all kids are smiling. She said they have a playroom so they can get out of their hospital room. They start trying to feed them as soon as they will tolerate feedings. Feeding is still one of the logistics we need to figure out, she said often times infants who breastfeed have a more difficult recovery (more difficult in an emotional sense than a healing sense). However, she said of the 330 surgeries done, only about 20 have been breastfed going into surgery and that of those 20, 10 went back to breastfeeding. Eric and I are still discussing what we feel will be the best way to handle this. It is hard for me to think of weaning her completely prior to the surgery since it took me staying in the hospital with her for 4 days so that she could breastfeed to get her to come home. Julia will probably be in the hospital in St. Louis for 2-3 days. The NP recommends that one of us stay with her 24 hours a day. There is a Ronald McDonald house that we most likely will also be able to stay in during this time and doing a little bit of sleeping and rotating visiting her. We can bring the boys to the RM house, but would really need to bring someone just to take care of them so we haven't decided what we will do with the boys during this time yet. The stitches he uses typically take about 6 weeks to fully dissolve so until that time, her tongue would look a little rough- the pictures they showed us, the stitches look like little white lines all over her tongue. The tongue will be functioning normally during this time, but can take up to a year to reach the final shape that it will be.
Obviously, this is a big surgery and we aren't making this decision lightly, but we plan on taking Julia back to Dr. Marsh in the spring, probably March or April, to have this surgery done. It is scary to think of putting her through surgery and unfortunately, the recovery for this surgery will be much rougher than her previous surgery, but long term, Eric and I both feel this is the best decision for her. We are also very grateful to be so close to St. Louis because people fly from all over the world to have Dr. Marsh perform this surgery on their child.
Our next step is to actually schedule the surgery. We are trying to figure out the best date to do it, but are leaning toward late March to early April, mostly based on Eric's school schedule right now. One really nice thing about his office and they are very easy to contact and get answers to questions. We already have office phone numbers, cell phone numbers, and email addresses to contact them. They also really took their time with us which we both appreciated it. We were in their office for 3 hours and 45 minutes. I'm sure we will be asking lots of questions to get ourselves as prepared as we can be in the next few months.
A bit of an update of her 3 appointments last week:
Speech- the SLP said that she is doing well. She is functionally eating, her form isn't the greatest, but she is able to do it. We are switching to a different style of bottle to hopefully help correct her form.
Surgeon (from hernia of the umbilical cord repair)- The site looks great, unfortunately it didn't close completely inside so more than likely she'll need another surgery to fully correct it. He will see us back in the spring to see how it is doing, but it shouldn't bother her at all in that time. He said the surgery will be done on an outpatient basis and there won't really be a new scar because they will do it right near the previous surgery site.
Ultrasound/bloodwork- These both went as well as can be expected. She did really well with the 4 hour fast required for the ultrasound and was pretty relaxed during the ultrasound. She cried when she got her blood taken. :( Luckily she calmed down pretty quickly afterward. I did receive a call yesterday from the nurse for her geneticist saying that her AFP levels were trending down- on October 22nd, they were 833 and on November 9th, they were in the 500s (I forgot the exact number). I haven't heard any results from the ultrasound, but I expect it to be clear with the AFP numbers we received.
On Monday the 19th, we see Julia's pediatrician for her 2 month well baby visit. It is hard to believe she'll be 2 months old on Friday! Assuming she stays healthy and nothing comes up, Julia will not see any doctors for the month of December - and January should only be a well baby visit! I don't think I'll miss seeing all of her doctors for that time.
Well, if you made it through all of that, I'm impressed :) Have a great day!
On to the day of the appointment, we left Monday (November 12) morning a little after 8:00 am and got to St. Louis a little after 11:00. We went and had a quick lunch and then headed to the hospital to meet with Dr. Marsh and his team. Our appointment started at 1:00. We met with Kristen, who is the BWS coordinator for Dr. Marsh. She took a brief medical history on Julia and asked lots of questions. Next, Dr. Marsh and his nurse/nurse practitioner (DeAnn) came in for the consult. Dr. Marsh talked to us about a few different things, said he agreed with our geneticist's clinical diagnosis of BWS for Julia, and then took a look at Julia's mouth and tongue. She cooperated very well for this, it wasn't long, but typically I don't think babies like fingers and tongue depressors being shoved in their mouth. He told us that he does feel Julia is a good candidate for a tongue reduction surgery. He said on his scale of 1-10, 1 being the smallest tongue he would recommend surgery on and 10 being a tongue that couldn't physically fit in the mouth, he would rate her at a 4. He said there are 3 main reasons to do surgery and he said she fits 2 of the 3. One is problems breathing, which thankfully doesn't affect her. The second is jaw placement, he said right now, her top and bottom gum meet exactly. Over time, they may stay like this, but more than likely, the lower jaw will come out further than the upper jaw, which would create a need for jaw surgery and extensive orthodontics in the future. The third is social and emotional reasons, he said she would learn to consciously think about keeping her tongue in her mouth and be able to, but when concentrating or being tired, it would more than likely come out and kids would probably make fun of her. He said recently they have had a few 12-14 year olds come in who found out about the tongue reduction surgery on their own and requested to have it done so that they didn't have to deal with it anymore.
He explained about the surgery and what he would do. He will basically cut a wedge shape from the front of the tongue, then trim each side of her tongue. After all of the cutting, he will stitch the front together (where he cut the wedge from) to create a tip and he will stitch each side back together (where he trimmed). He said she should still have normal taste buds. He said that of kids who have tongues like this, 90% will need speech, he said if they have the tongue reduction surgery, that 50% will need speech and 50% will not need speech.
DeAnn went through the recovery process with us. She said the first day looks pretty rough and is pretty rough, but it gets better quickly. She said by day 2, pretty much all kids are smiling. She said they have a playroom so they can get out of their hospital room. They start trying to feed them as soon as they will tolerate feedings. Feeding is still one of the logistics we need to figure out, she said often times infants who breastfeed have a more difficult recovery (more difficult in an emotional sense than a healing sense). However, she said of the 330 surgeries done, only about 20 have been breastfed going into surgery and that of those 20, 10 went back to breastfeeding. Eric and I are still discussing what we feel will be the best way to handle this. It is hard for me to think of weaning her completely prior to the surgery since it took me staying in the hospital with her for 4 days so that she could breastfeed to get her to come home. Julia will probably be in the hospital in St. Louis for 2-3 days. The NP recommends that one of us stay with her 24 hours a day. There is a Ronald McDonald house that we most likely will also be able to stay in during this time and doing a little bit of sleeping and rotating visiting her. We can bring the boys to the RM house, but would really need to bring someone just to take care of them so we haven't decided what we will do with the boys during this time yet. The stitches he uses typically take about 6 weeks to fully dissolve so until that time, her tongue would look a little rough- the pictures they showed us, the stitches look like little white lines all over her tongue. The tongue will be functioning normally during this time, but can take up to a year to reach the final shape that it will be.
Obviously, this is a big surgery and we aren't making this decision lightly, but we plan on taking Julia back to Dr. Marsh in the spring, probably March or April, to have this surgery done. It is scary to think of putting her through surgery and unfortunately, the recovery for this surgery will be much rougher than her previous surgery, but long term, Eric and I both feel this is the best decision for her. We are also very grateful to be so close to St. Louis because people fly from all over the world to have Dr. Marsh perform this surgery on their child.
Our next step is to actually schedule the surgery. We are trying to figure out the best date to do it, but are leaning toward late March to early April, mostly based on Eric's school schedule right now. One really nice thing about his office and they are very easy to contact and get answers to questions. We already have office phone numbers, cell phone numbers, and email addresses to contact them. They also really took their time with us which we both appreciated it. We were in their office for 3 hours and 45 minutes. I'm sure we will be asking lots of questions to get ourselves as prepared as we can be in the next few months.
A bit of an update of her 3 appointments last week:
Speech- the SLP said that she is doing well. She is functionally eating, her form isn't the greatest, but she is able to do it. We are switching to a different style of bottle to hopefully help correct her form.
Surgeon (from hernia of the umbilical cord repair)- The site looks great, unfortunately it didn't close completely inside so more than likely she'll need another surgery to fully correct it. He will see us back in the spring to see how it is doing, but it shouldn't bother her at all in that time. He said the surgery will be done on an outpatient basis and there won't really be a new scar because they will do it right near the previous surgery site.
Ultrasound/bloodwork- These both went as well as can be expected. She did really well with the 4 hour fast required for the ultrasound and was pretty relaxed during the ultrasound. She cried when she got her blood taken. :( Luckily she calmed down pretty quickly afterward. I did receive a call yesterday from the nurse for her geneticist saying that her AFP levels were trending down- on October 22nd, they were 833 and on November 9th, they were in the 500s (I forgot the exact number). I haven't heard any results from the ultrasound, but I expect it to be clear with the AFP numbers we received.
On Monday the 19th, we see Julia's pediatrician for her 2 month well baby visit. It is hard to believe she'll be 2 months old on Friday! Assuming she stays healthy and nothing comes up, Julia will not see any doctors for the month of December - and January should only be a well baby visit! I don't think I'll miss seeing all of her doctors for that time.
Well, if you made it through all of that, I'm impressed :) Have a great day!
Tuesday, October 30, 2012
Medical Update
Julia is doing well at home. She is growing and setting her own schedule for life. Yesterday was 3 weeks since she got out of the hospital- it is hard to believe she is 6 weeks old. We have been going to doctors all the time it seems like. I wanted to update everyone on what all is going on with Julia, so here it goes.
We went to the pediatrician for her 1 month appointment on October 17. She is gaining weight- I forget what she was at this appointment. The nurse practitioner that we saw said she looked great. Our regular pediatrician also came in and took a quick look at her. This was a pretty uneventful appointment.
We went to the pediatrician for her 1 month appointment on October 17. She is gaining weight- I forget what she was at this appointment. The nurse practitioner that we saw said she looked great. Our regular pediatrician also came in and took a quick look at her. This was a pretty uneventful appointment.
On October 22, we went to the geneticist. He looked Julia over and we discussed Beckwith-Wiedeman Syndrome (BWS). They took a full family history and asked us lots of questions. He gave Julia the clinical diagnosis of having Beckwith-Wiedemann. The first genetic test (the microarray done in the hospital) came back normal which means she doesn't have a genetic form of BWS, however, there are multiple ways to diagnose BWS. He requested to have blood-work done for another genetic test. The clinical diagnosis is based off of physical characteristics, of which Julia has quite a few. She had the umbilical hernia at birth, has a large tongue, had low blood sugar levels as a newborn, has creases on her ears, has stork bites (red marks above her nose and somewhat on her eye lid), and large size. BWS doesn't have major issues itself, but children with BWS are at a greater risk of developing tumors and childhood cancers. Because of this, Julia will have regular bloodwork and ultrasounds done to monitor for tumors. Two types of tumors make up the majority of the childhood cancers, one is Wilm's tumor which is located on the kidneys and the other is hepatoblastoma, which is on the liver. From what we have been told and researched, these are both fast growing, but very treatable if diagnosed early, which is why she will be regularly monitored. She will have ultrasounds and bloodwork done every 3 months. The risk of the tumors decreases significantly as she grows up, so much so that they stop doing the ultrasounds and bloodwork between 8-10 years. We also discussed the possibility of a tongue reduction and got a referral to a doctor to discuss that. After this appointment was over, we headed to the lab and Julia got her first blood draw to test AFP (Alpha-Fetoprotein- this number becomes elevated if a tumor is present). She was not a fan of the blood draw and neither was I, but she did well and we were home shortly after that.
Her AFP level came back and it was higher than normal for a 1-month old without BWS, but was within the normal range for 1-month olds with BWS. I just talked with the geneticist today and Julia will be getting another blood draw within the next 2 weeks to make sure the levels are decreasing. She is also scheduled for an ultrasound on November 9th to check her liver and kidneys.
On October 23, we went to the pediatrician because there was 2 puss-filled areas near her surgery site. They drained one of them and took a sample for a culture (again, Julia did not like getting poked). She was put on an antibiotic and we were sent home. We went back again on October 25 to recheck and find out the results of the culture. The culture came back positive for a staph infection, but luckily it was a strain that responds to the antibiotic she was already on. She has been on the antibiotic for a week and we have also been putting neosporin on the site and it looks great now. She was 11 pounds, 4 ounces at this appointment.
We were scheduled to meet with the speech and language pathologist (SLP) tomorrow (October 31), but had to reschedule due to some other doctor appointments for myself. We haven't rescheduled that one yet.
November 7th- We go back to Dr. Browne (the surgeon) for a follow-up. I'm pretty confident he will be happy with how everything is looking.
November 9th- She will have an ultrasound and bloodwork.
November 12th- We go to St. Louis to meet Dr. Marsh about a possible tongue reduction. This is a bit of an overwhelming appointment, but we are happy we are in a location where we can go to this doctor. He is well-known for doing tongue reductions and has great successes with them. He prefers to do the tongue reductions prior to 9 months for a variety of reasons (teeth placement, jaw issues, speech issues, and emotional issues). I don't want to put her through another surgery, but am confident he will advise us as to what is best. We have done some reading on him and Dr. Beckwith said if he had a grandchild with BWS, he would trust what Dr. Marsh recommended so I feel like that is a pretty good reason to trust him.
November 17th- Julia has her 2 month appointment.
January- a follow-up with the geneticist.
Although this seems long, this is a brief update on Julia's medical life.
Monday, October 15, 2012
Julia's First Week Home
Julia had a very exciting first week home- she even managed to leave home and make it to 4 other states during that week! She came home on Monday, October 8th in the late afternoon. She was welcomed by her two big brothers and her aunt Kathy (and me, but I brought her home ;)). Eric joined in the welcoming later that night when he got home from a conference in Chicago. Tuesday, we enjoyed spending the day at home and relaxing. On Wednesday, Julia had 2 doctor appointments- one with the pediatrician and one with the surgeon. Both appointments went very smoothly and both said she looks wonderful. Both also want to see her back next month to check her out again. Thursday, my mom came and got to see and hold Julia. Friday, we packed up and headed to New York to meet Julia's new cousin, Lucas, and be there for his baptism. We spent Saturday and part of Sunday visiting in New York and we got back home to Illinois today. Here are some pictures of Julia's first week! We are looking forward to many more weeks with her :)
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| Julia hanging out while the rest of us ate pizza |
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| Oliver showing Julia how one of her toys works |
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| Oliver watching Julia get a bath |
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| Soapy hair |
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| Happy girl after bath time |
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| Julia and Lucas Take 1 (many years of pictures to come) |
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| Julia and Lucas Take 2 |
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| Julia and Lucas Take 3- in coordinating outfits even :) |
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| Sophia and Julia |
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| Oliver holding Julia- this was the first time he asked |
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| Alex holding Julia |
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| Aunt Kara and Julia |
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| Julia wearing her first dress- with tights that had little shoes on them :) |
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| 3 clean kids in their pajamas |
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| Oliver came out after naptime and I was holding Julia- usually he wants to snuggle when he wakes up and he just snuggled right in and put his arm around Julia :) |
Tuesday, October 9, 2012
October 8 (Day 23) - Julia is coming home today!
Julia made it through Sunday night's feeding with an intake of 298. Not quite 300, but close enough :) After her first morning feeding, I sent her back to the NICU and got ready for the day. I decided to get the room in order a little bit just in case she was able to come home today. The nurses and doctor had said originally that it would be Monday, but then they changed to Tuesday because we were going to need training on a monitor Julia was going to go home on. After breakfast and getting ready, I headed back into the NICU and talked with Julia's nurse for the day. The doctor had done rounds (a new to us doctor - they do a weekly rotation so today was the beginning of a new doctor) and he said he didn't think Julia needed to go home on the monitor. So our nurse told me that Julia would be able to go home today, but not until the doctor's orders went through and we had some discharge stuff to do.
I fed Julia for around 11:00 and then took her and her car seat back into the NICU. She had to do a car seat test where she sat in her car seat for 1 hour hooked up to a monitor to make sure her oxygen levels stayed high enough. While Julia was doing that test, I headed back to our house to take a few things back and have lunch with Kathy and the boys. After lunch, I went back to the hospital and Julia had passed her car seat test- 1 step closer to going home. She also had her hearing screening done today and she passed that right away. I worked on a little more of the paperwork that needed to be done with the nurse. After that, I headed back to the rooming out room with Julia and we hung out waiting to go home. I called Kathy to let her know to be on stand by to come and pick us up. I kept thinking it would be soon, but it took forever.
Around 3:30, the doctor came in and did Julia's final assessment. Then Julia and I hung out for a little while. Julia's nurse came in and said it would probably be a little while because the doctor had to do final assessments on 6 other babies that were going home today and then he needed to put orders in on all of them. I asked if it would take at least 30 minutes and she said yes. So I ended up taking home all of Julia's things other than her car seat so we had less to deal with when it was time to go. I ran stuff home and hung out with Kathy and the boys for a few minutes. They actually ended up walking me back to the hospital. I went back into the NICU and got Julia and we went back and hung out in our room for a little while longer. Her nurse came in around 5:00 and said we could do the final discharge. We looked over Julia's discharge papers and then I loaded her up into her car seat. The nurse got a wagon to pull Julia out in and I called Kathy to tell her to load the boys up and come get us. We walked out and met Kathy and loaded up and headed home.
Oliver and Parker were excited to see Julia and have her home. We ordered pizza for supper so that we didn't have to make anything. Julia was very good and just hung out while we ate our pizza. Eric got home around 8:30 that night-we were bummed that he wasn't able to be with us on her release day, but he was happy to see her when he got home. Kathy gave the boys baths and we got Julia all snuggled in for the night.
Another zonked out picture
Julia packed up and headed for home!
Kathy and the boys made a sign for our garage door that said "Welcome Home Julia"
Oliver reading Julia a story
Parker checking out his baby sister for the first time (he was too young to visit while she was in the NICU)
October 7 (Day 22)
Sara and I stayed up at the hospital last night and Julia ate 305 ml and her threshold was 300 ml - so she just scraped by, but the nurses and doctors were happy especially since she did the same 305 ml in previous 12 hour shift so she was consistent. We all went to church this morning. The boys and I dropped Sara and Kathy off at the hospital to feed Julia and we returned home to play GeoTrax for a few minutes. After Julia was fed we all went to the cafeteria for lunch/brunch.
Oliver went up to see Julia and Kathy walked Parker around the hospital. Oliver had a good time checking out Julia's toys, drawing pictures for her on her whiteboard and looking at all of the stuff under her crib. Oliver and Parker went home, and Sara and I stayed up at the hospital to feed Julia on demand (Sara not me :o).
Kathy took the boys to Toys R' Us after their nap to get something for Julia and themselves. Parker got a Gordon train (Thomas) and Oliver got Aero and Eric (GeoTrax). They were both excited about their toys. Julia ate a lot in one feeding in the afternoon and Sara took the opportunity of her full belly to go home and spend some time with people outside the hospital. I stayed up at the hospital with Julia and worked on some slides for a presentation I was going to give the next day in Chicago. For supper, Kathy stated specifically that she wanted everyone to know that the boys had grilled cheese (she didn't really, but I thought I would add it for flare).
Julia did not eat as well this day. She only ate 266 ml out of 300 ml and we were told if she did not hit 300 ml the doctor would put the NG tube back in. They would put in the tube to get her to up to the target feeding amount (300 ml). NICU policies say that a baby must be off the NG tube for 2 days before being discharged. So if the NG tube went back in we would be in the hospital for a minimum of 2 more days. However, the doctors said that since she was trending up to the 266 ml that the doctor wasn't concerned and she didn't need to have the NG tube put in! The less exciting part was that the nurses and doctors started to say that Julia would be sent home with a heart rate/breathing rate monitor. They said that due to her tongue they thought it may be a good idea for her to wear it for 3-6 months until she gets a little bigger. Obviously not so exciting.
I left the hospital around 10:00 to get some sleep at home, because I needed to drive up to Chicago the next morning and give a presentation at a conference. So Sara was, yet again, in the hospital with Julia in the "rooming out" room with a horribly uncomfortable bed that makes crunching sounds every time you move and squeeky bathroom door that would wake up any sleeping child.
Oliver went up to see Julia and Kathy walked Parker around the hospital. Oliver had a good time checking out Julia's toys, drawing pictures for her on her whiteboard and looking at all of the stuff under her crib. Oliver and Parker went home, and Sara and I stayed up at the hospital to feed Julia on demand (Sara not me :o).
Kathy took the boys to Toys R' Us after their nap to get something for Julia and themselves. Parker got a Gordon train (Thomas) and Oliver got Aero and Eric (GeoTrax). They were both excited about their toys. Julia ate a lot in one feeding in the afternoon and Sara took the opportunity of her full belly to go home and spend some time with people outside the hospital. I stayed up at the hospital with Julia and worked on some slides for a presentation I was going to give the next day in Chicago. For supper, Kathy stated specifically that she wanted everyone to know that the boys had grilled cheese (she didn't really, but I thought I would add it for flare).
Julia did not eat as well this day. She only ate 266 ml out of 300 ml and we were told if she did not hit 300 ml the doctor would put the NG tube back in. They would put in the tube to get her to up to the target feeding amount (300 ml). NICU policies say that a baby must be off the NG tube for 2 days before being discharged. So if the NG tube went back in we would be in the hospital for a minimum of 2 more days. However, the doctors said that since she was trending up to the 266 ml that the doctor wasn't concerned and she didn't need to have the NG tube put in! The less exciting part was that the nurses and doctors started to say that Julia would be sent home with a heart rate/breathing rate monitor. They said that due to her tongue they thought it may be a good idea for her to wear it for 3-6 months until she gets a little bigger. Obviously not so exciting.
I left the hospital around 10:00 to get some sleep at home, because I needed to drive up to Chicago the next morning and give a presentation at a conference. So Sara was, yet again, in the hospital with Julia in the "rooming out" room with a horribly uncomfortable bed that makes crunching sounds every time you move and squeeky bathroom door that would wake up any sleeping child.
Julia's spot in the rooming out room (from left to right: crib, heart monitor, baby scale)
Her belly button, which is really looking great! (and of course her monitor leads)
Zonked out in her crib
Saturday, October 6, 2012
October 6 (Day 21)
Our blog is slowly falling behind, because Sara and I haven't had much of a chance to talk. Basically I haven't had the complete picture and she hasn't had enough sleep to post. So we'll try to give an overview of where we are at with Julia and then tell everyone about today. This post may be all over the place, but I think that accurately captures our life at the moment. :)
Over the past few days the doctors/nurses have wanted Sara to breastfeed at every opportunity. I believe this has to do with Julia improving her numbers with breastfeeding while not at all with a bottle. In order for Julia to go home she must eat a certain amount over a 12 hour period and essentially her only chance is to breastfeed at every feeding, because she can't drink enough with a bottle. So we think the doctors and nurses are trying their best to get Julia home and the only way to do it is for Sara to breastfeed all the time. Obviously this is putting a lot of strain on Sara, because she always needs to be at the hospital. She comes home for 2 hours sometimes during the day, but its not a lot of time to spend with anyone (Kathy, me or the boys). However, we all recognize that if this is what it takes for Julia to come home then this is what we are going to do.
Julia's ng tube was pulled today. It was the day to change it and they are giving her a chance to not get it put back in. She has to eat 300 ml (10 oz) over a 12 hour period, previously she was given the chance to eat and then tube fed the rest of her milk for a total of 360 ml (12 oz) during a 12 hour period. She passed her first 12 hour period with 305 ml. She had one feeding session today where she ate 88 ml (almost 3 oz)!!! If she doesn't hit the 300 mark, then most likely she will get the ng tube put back in. It does have some variability in that if she is close to 300, they might let her slide, or even if she is less, but still gains weight for the day, they might let her go. They are also watching her for consistency over the 12 hour time frame that she is eating roughly the same amount throughout the day.
They have talked to us about her going home and we have started doing some of the steps that need to be done first- mostly just watching videos. We have to watch a CPR video and demonstrate that we can preform CPR if necessary. Julia will have to sit in her carseat for 1 hour to show that she doesn't have any breathing issues while in the seat. It looks like she will be going home with an apnea monitor (it will monitor her heart rate and respiratory rate (how many breaths per minute she takes)). Right now, they are thinking they would keep her on that for probably 3-6 months. Their concern is that the size of her tongue could cause issues with her breathing.
She has to have the ng tube out for 48 hours before being able to be discharged (and be eating enough) so in theory, if she hits her 300 mark through Monday, we could potentially be bringing her home Monday. We are hopeful that this might be the case, but also know that things change pretty quickly around here. She also has to have some more blood work done before she could leave and possibly a few other tests, plus getting everything set up with the monitor. Unfortunately for Eric, he has a conference in Chicago on Monday so if she comes home that day, he'll miss it, but we both agree that if they tell us she can go home, we are taking her then. :)
In other news from today, Julia got her newborn pictures taken at the hospital. We haven't got a chance to really look through and make any decisions, but I'm guessing we'll be ordering some of them. We are anxious to get her home and get some family pictures taken. Kathy got to our house around 10:00 this morning and she came up to the hospital to meet Julia shortly after that. At the 11:00 feeding, Sara and Kathy found out that her tube had been pulled so they came home for a quick lunch and to pack up a few things, then Sara and I headed up to the hospital so that Sara could feed Julia as much as Julia wants.
The boys have gotten pretty used to being left with people, but I think we are all ready for our whole family to be in one house. Kathy took the boys to McDonalds for supper tonight which I am sure they enjoyed. She dropped Oliver off at the hospital afterward so he could come up and see Julia. He did really well and seems to be pretty excited about her. He got to see the room Eric and I are staying in tonight. He wanted to play with Julia and her toys :) Parker was a little sad to not get out of the car when Oliver got out, but him and Kathy went to Walgreens and they looked at the toys and Parker pointed out every Thomas toy they had.
Kathy picked Oliver up and headed home with the boys and Eric and I stayed up at the hospital. We are really hoping Julia eats well tonight. So far she is at 91 ml out of 300- we have 8 more hours to get another 209 ml in her.
They have talked to us about her going home and we have started doing some of the steps that need to be done first- mostly just watching videos. We have to watch a CPR video and demonstrate that we can preform CPR if necessary. Julia will have to sit in her carseat for 1 hour to show that she doesn't have any breathing issues while in the seat. It looks like she will be going home with an apnea monitor (it will monitor her heart rate and respiratory rate (how many breaths per minute she takes)). Right now, they are thinking they would keep her on that for probably 3-6 months. Their concern is that the size of her tongue could cause issues with her breathing.
She has to have the ng tube out for 48 hours before being able to be discharged (and be eating enough) so in theory, if she hits her 300 mark through Monday, we could potentially be bringing her home Monday. We are hopeful that this might be the case, but also know that things change pretty quickly around here. She also has to have some more blood work done before she could leave and possibly a few other tests, plus getting everything set up with the monitor. Unfortunately for Eric, he has a conference in Chicago on Monday so if she comes home that day, he'll miss it, but we both agree that if they tell us she can go home, we are taking her then. :)
In other news from today, Julia got her newborn pictures taken at the hospital. We haven't got a chance to really look through and make any decisions, but I'm guessing we'll be ordering some of them. We are anxious to get her home and get some family pictures taken. Kathy got to our house around 10:00 this morning and she came up to the hospital to meet Julia shortly after that. At the 11:00 feeding, Sara and Kathy found out that her tube had been pulled so they came home for a quick lunch and to pack up a few things, then Sara and I headed up to the hospital so that Sara could feed Julia as much as Julia wants.
The boys have gotten pretty used to being left with people, but I think we are all ready for our whole family to be in one house. Kathy took the boys to McDonalds for supper tonight which I am sure they enjoyed. She dropped Oliver off at the hospital afterward so he could come up and see Julia. He did really well and seems to be pretty excited about her. He got to see the room Eric and I are staying in tonight. He wanted to play with Julia and her toys :) Parker was a little sad to not get out of the car when Oliver got out, but him and Kathy went to Walgreens and they looked at the toys and Parker pointed out every Thomas toy they had.
Kathy picked Oliver up and headed home with the boys and Eric and I stayed up at the hospital. We are really hoping Julia eats well tonight. So far she is at 91 ml out of 300- we have 8 more hours to get another 209 ml in her.
What was that sound?
Just lounging around
Happy that she lost her NG tube
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