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!

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.

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.  

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 :)

Julia hanging out while the rest of us ate pizza

Oliver showing Julia how one of her toys works

Oliver watching Julia get a bath

Soapy hair

Happy girl after bath time

Julia and Lucas Take 1 (many years of pictures to come)

Julia and Lucas Take 2

Julia and Lucas Take 3- in coordinating outfits even :)

Sophia and Julia

Oliver holding Julia- this was the first time he asked

Alex holding Julia

Aunt Kara and Julia

Julia wearing her first dress- with tights that had little shoes on them :)

3 clean kids in their pajamas

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 :)

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.

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

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.

What was that sound?

Just lounging around

Happy that she lost her NG tube

October 5 (Day 20) - TGIF&TKIOHW

Thank goodness its Friday & that Kathy is on her way (Even though I'm posting this Saturday morning :)

I was too tired to post last night.  Sara spent the night at the hospital with Julia again last night.  The boys and I stayed home.  It was a bit of a crazy day yesterday and I haven't drank enough coffee to list it all out yet.  However, Kathy is likely less than an hour away, which is great because Sara and I will be able to be in the same place for a little bit and we will have a chance to talk.  I know Sara is looking forward to seeing Kathy (they talk on the phone everyday for the most part) so hopefully she will help return sanity to the house that seemed to leave with Donna (who by the way I greatly appreciated having cleaned the bathroom, washing the sheets, and washing dishes before she left :)

On an unrelated note I hope it warms up. It was cold last night and still is this morning - luckily we turned on the furnace, because brrr.

October 4 (Day 19) - What a ride :)

Julia pulled some good numbers today.  Somewhere around a 36, 32, and even a 50! (I think, but am not sure). However, today has been ... a ride.

This morning Parker and I dropped Oliver off at preschool, while Sara took Donna to see Julia before she left.  Oliver did great during dropoff and Parker and I returned home to wait for Sara and Donna to come back so that I could head to work. I received a call from Sara while at work.  She said the doctor came to talk to her and said she would like to see Sara taking every opportunity to breastfeed Julia.  She told her she cannot sleep next to Julia, but may be able to sleep for a few hours in the family lounge.  She could not sleep in the family lounge all night though.  Needless to say this is a huge responsibility that is unfortunately all placed on Sara... So we talked and she was going to try to feed Julia all of her feedings from 8:00 am to 8:00 pm for the next few days.  We didn't think that nighttime feedings would work well since I would be home with the boys alone and it would have her walking the streets late at night between here and the hospital (since she would have to go through the ER entrance late at night).  Everything seemed crazy, but doable. Donna left after the 2:00 feeding. I left work to see Julia for a little while and then came home to watch the boys so Sara could go up for the 5:00 pm feeding.  The boys and I walked Sara to the hospital and then played in "the maze" as Oliver calls it.  Its a labyrinth of bricks in the park that the boys like to run around on. Sara came back and we ate supper.  Right before the 8:00 feeding the phone rang...

A nurse called said that the "Rooming out" room was available and Sara could stay with Julia tonight.  The rooming out room is typically reserved for babies that are ready for discharge and it gives parents a chance to take care of their baby while still being in the NICU.  Its essentially a small hotel room with a bed, TV (no remote as Sara told me), and a bathroom. She said okay - so tonight it will be used by Sara to take care of Julia.  We very frantically packed a bag for her (clothes, makeup, pump parts, NICU name badge, etc) since she needed to be at the hospital within the next few minutes for Julia's feeding (as she has been waking up angry with hunger lately).  So she's at the hospital tonight taking care of Julia and hoping to get a few minutes of sleep between weighing, feeding, weighing again, pumping, and NG tube feeding every 3 hours (not discounting the times Julia wakes up and wants attention). Sara also cannot feed her on demand as that would mess with the NG tube feeding.  I am at home with the boys trying to get the house prepared for another crazy day while preparing a paper for submission to a journal in the next day or (hopefully not) two.

With that.  Good night and I hope everyone wishes us luck tonight. Although I must admit I have it a little easier this night.

(Sorry there are no pictures, because the camera is at the hospital with Sara :)

October 3 (Day 18)

Julia had another good day with eating.  During the night, she took 2 bottles and was in the 20-30s for how much she drank.  At her 8:00 am feeding, she took 21 ml from a bottle.  I was up to see her for her 11:00 am feeding.  She took 36 ml from me at that feeding.  After feeding her, I held her during her tube feeding.  She is a very cuddly little girl.  :)

I went and ate some lunch at the cafeteria and then headed back up to be with Julia.  We did a little more cuddling.  For her 2:00 pm feeding, Julia ate 40 ml from me! After that, she had her tube feeding.  Then I gave her a bath.  It is amazing how greasy her hair gets and how much softer it then gets after a bath.  She smelled like a fresh baby :)  I even brushed her hair.   I headed back to the house to play Geotrax with the boys for a while.

I met Eric at the hospital for her 5:00 pm feeding.  She was on her belly sleeping pretty soundly when we got there, but after a diaper change and turning the light on, she seemed to be waking up hungry.  I fed her and she took 36 ml.  Then Eric cuddled with Julia for awhile since he doesn't get too much weekday cuddle time.  After that, he wrapped her up in her blanket and we tucked her in for the night (even though she'll be up again in 3 hours).

We headed home and had dinner (made by Donna) with the boys and Donna.  Then Donna gave the boys baths while Eric and I caught up on a few household things.  Now the boys are tucked in and hopefully sleeping.  Eric and I are going to run a few errands tonight while Donna is still here.  We are going to brave our first full day by ourselves since Julia was born- Donna will be leaving tomorrow afternoon and Kathy will be getting here early Saturday morning.  It has been wonderful to have all of the help.  Oliver has his second day of preschool tomorrow and Parker- well he'll be getting a new toothbrush because he threw his on the bathroom floor tonight.

Pre-bath Julia (note the greasy hair)

Post-bath Julia- note the soft hair :)

A close up of Julia

Just hanging out in her crib

October 2 (Day 17)

I got up to the hospital just after Julia had started her tube feeding for her 11:00 am feeding.  Unfortunately between picking Oliver up from preschool and forgetting my name tag (which I need to get in the NICU), I was late and not able to feed her that time, but I held her throughout her feeding and cuddled with her.  After her feeding, I headed down to the cafeteria and met Eric, Oliver, Parker, and Donna for lunch.  When lunch was over, Donna headed back to the house with the boys and Eric and I went up to see Julia.

The speech pathologist showed up for her 2:00 pm feeding.  Julia was up and ready to eat a few minutes before 2:00 and luckily the speech pathologist was a few minutes early so Julia didn't have to wait too long.  Julia ate really well- she took 58 ml which is the most she has ever taken from me or a bottle!  The speech pathologist said Julia is still doing a lot of gulping and having stridors while she is eating, but that with breastfeeding, there isn't much to do about it and she is less concerned with breastfeeding than with bottle feeding.  The speech pathologist is planning to come tomorrow or Thursday to observe Julia taking a bottle.
We were really excited about her big number!!

We talked to the doctor for a little bit.  She said Julia's thyroid levels looked fine in her most recent blood work.  Her billirubin was looking good also.  She said that Julia seems to just need to figure out her eating and then she should be able to head home.

Eric and I went up for her 5:00 pm feeding and Julia did pretty good again.  She ate 36 ml.  We are really happy that she keeps pulling bigger numbers.  It has been nice for the tube feedings too because the syringes they use only hold 60 ml so she had been needing 2 syringes which obviously takes longer, but with only 1 syringe, it goes a little faster.

Nothing too big on the agenda with Julia for tomorrow.  Wednesday is bath day so she'll get a little cleaner tomorrow.  We are hoping she eats well through the night.  She took 2 bottles last night and ate 14 ml and 19 ml at the 2 feedings.

Oliver's first day of preschool pictures and info should be posted on our other blog shortly :)
(ericsaraoliver.blogspot.com)

Julia's board that we have been writing her feedings on- the 58 is circled!!

When we got back before her 5:00 feeding, Julia was sleeping on her tummy.  We were pretty certain the nurses had flipped her, but did check in case she had decided to roll (we were right and the nurses had flipped her when they were rubbing her back while upset).

Julia all passed out sleeping

Julia in her crib

October 1 (Day 16)

Julia had a wonderful day today.  She did a good job eating today which was very exciting.  The speech pathologist came at her 8:00 am feeding, but we weren't up there for that feeding.  Unfortunately, she didn't take any from the bottle at that feeding and so the speech pathologist didn't really have much new to say.  At her 11:00 am feeding, I was up there to feed her and she took 26 ml.  I was very happy with that number.  Donna went along for that feeding because Bob and Wendy were still in town and they stayed with the boys.    We all had lunch together from Subway (other than Eric- he had gone into work) and then Bob and Wendy headed back to Iowa.

I got the boys settled down for naps and then headed back up to the hospital for Julia's 2:00 pm feeding.  At this feeding, she took 34 ml!  This is the most she has ever taken from me!  I hung out with her for awhile and then headed home to see the boys for a bit and get a few things done before her 5:00 pm feeding.

Eric got home from work in time to go up for her 5:00 pm feeding so we headed up to the hospital together. It took a little longer to get her interested for this feeding, but she did and she ate 24 ml.  We were impressed with her feedings for the whole day.

Julia gets to have bottles tonight if she is awake and interested at feeding time.  We did call and see if she took one for her 8:00 pm feeding, but her nurse said she slept right through so she got fed through her tube.
The nurse did say that she was awake now (around 8:30) and that she was cuddling her and hoping to try a bottle for her 11:00 pm feeding.

Eric and I got back and ate supper with Donna- the boys had eaten a little earlier.  Then we played trains with the boys for awhile.  Donna gave Oliver and Parker haircuts and then Eric gave them both baths.  They seem to be happily settled in their beds for the night and I think Eric and I are thinking that isn't sounding too bad.  Hopefully the nurse will have good news in the morning that Julia did a good job with the bottle and that she will do so well with her feedings again tomorrow.

Oliver has his first day of preschool tomorrow - I plan to post more on that with pictures on our regular blog tomorrow, but I think he is excited for that.  Otherwise tomorrow is a regular day for us.

Have a great night everyone!!

September 30 (Day 15) - Two weeks old!

Julia is 2 weeks old today!  Sara and I can't believe it has already been two weeks - although Julia's surgery when she was only a few days old does seem like years ago.  She is still doing pretty good and is starting to be a little more consistent in her feedings.  Her feedings today were 16, 6, and 16 ml - the last feeding was by bottle. She seems to be hovering around 15-25 ml (more toward the 18-20 range).  Sara and I noticed that Julia seemed to have a lot more facial expressions today.  So we tried to snap a few pictures, but the delay on the camera was just a tad too slow to catch most of them.

We met Bob and Wendy at church this morning, and after about passing out from the heat in the church we returned to our house.  Sara and I headed up to the hospital for Julia's 11:00 feeding and Bob and Wendy were kind enough to go grocery shopping for us.  After the feeding we came back to find the dishwasher loaded and groceries put away.  We ordered Monical's pizza for lunch (yummy BBQ chicken pizza) and visited for a little while.  Sara and I went to Julia's 2:00 feeding and Bob and Wendy joined us for Julia's bottle feeding at 5:00.  After that we played some pepper at home (a card game for those of you that live under a rock) while waiting for Donna and the boys to get here from Iowa.  They got here around 11:00 pm and the boys were happy to be home, see their mom and dad, and then be in their own beds.

Julia is 2 weeks old today!

Julia's belly button starting to form almost 2 weeks after surgery.  It has a bit of triple-die for infection (so it looks a little blue/purple).  It looks great!

Looking around on her soft blanket

Julia starting to smile at mom

Smirking

Whoa, what is going on

Hi everyone

She is quite the yawner

Just looking around

Making faces at dad

Before getting wrapped up for bed she started sucking her thumb

September 29 (Day 14)

We got up to the hospital in time for Julia's 11:00 am feeding.  She did pretty well and ate 18 ml.  Her nurse said that for her 8:00 am feeding, she was tired and didn't really wake up to eat so she just had her tube feeding then.  After she was done eating and had her the rest of her feeding through her tube, Eric and I headed home to get a few things done around the house.  We went back up for her 2:00 pm feeding.  She ate 20 ml at this one.  She has had about a 45-60 minute awake period after this feeding so we played with her for a bit.  Eventually we got her settled down and back to sleep and then we headed out to run an errand.

We went to a local baby store and picked up a headband and a barette for her.  On our way back home, my brother Bob called and let us know that him and his wife were in town.  We made plans for them to come up and meet Julia.  We ended up meeting them up at the hospital for her 5:00 feeding.  Eric had planned on giving her a bottle for this feeding since she hadn't had one all day.  Julia took 21 ml from the bottle.  We were really excited at her consistency throughout the day.  Dr. Stratton talked to us briefly and said he is planning on letting Julia start having bottles in the night beginning on Monday.  We were happy to hear this.

When we left the hospital, we went out to eat with Bob and Wendy.  It was a beautiful night and we were able to eat outside which was really nice.  After dinner, they came back to our house for a bit and we visited for a while.  Eric and I enjoyed some Scratch cupcakes that they brought for us.

We are looking forward to seeing the boys tomorrow, even though it will be late when they get here.  Everything I have heard sounds like they are having a great time in Iowa.  We'll end with a few pictures from today.

Julia holding Mommy's thumb

Julia relaxing during a tube feed

Julia wearing the headband we bought her- it was a little big- I said it looked like she was sweating to the oldies

Julia with her barette 

Julia wrapped up in a swaddle-me (she has become a master of getting unswaddled with a regular blanket) with her barette in.  She looked pretty cozy for the night.