Saturday, July 31, 2010

Bye Daddy!

Daddy headed back to Texas today, not coming back unless something changes (so we hope he isn't coming back!) Hopefully we will join him back in Texas soon! Its just Ruth and I now, feels strange not having a "support person" anymore. Me-maw is coming in a week to visit for a bit, we are looking forward to seeing her!

Ruth received a bunch of super cute preemie outfits in the mail yesterday from family and friends. Thanks ya'll!

Today was a good day. I went up to see her at her early morning feeding, to find out my sweet girl is now 4lb 0.5oz, and she also lost her umbilical cord stump! My little preemie is getting bigger!

Friday, July 30, 2010

Quick Neurology update

Ruth had her head ultrasound yesterday, but I didn't have the results until today. They showed stable ventricles and small posterior fossa. So, no change is awesome! I was also here when the neurosurgeons came by to look at her and they are extremely happy with how she is doing. They said every day she goes since her surgery with no change in ventricle size means less and less chance she will need a shunt. Please keep praying for her, we really hope she doesn't need one! They are also very happy with how her back has healed. The red area around the scar is like a birth mark, and will fade as she gets older.

Thursday, July 29, 2010

VIDEO: Ruth @ 1 week old!

1 week old!

Miss Ruth is now 1 week old!  She is our miracle baby, doing so great.

Since her last update:

She is no longer on an IV.  It came out, docs said don't bother putting it back in.  So she is now fully relying on milk for her feeds, she breastfeeds then gets the remainder of her milk via her ng tube.  Babies typically "figure out" how to breast/bottle feed after 33 weeks, so we are hoping to ditch the ng tube sometime next week!

We are still cathing her, she seems to be able to void in her diaper fine, but we are unsure if she is fully emptying her bladder.  We will continue to cath until her urodynamics study, which will be shortly after she is discharged, but before we go back home.

She is still in the incubator to help her regulate her tempature, but they are slowly lowering the temp, and hopefully should be moved to a regular bed soon.

She passed her hearing test.

She has good strength and movement in her legs.  She is definitely not paralyzed.  A physical therapist came by and showed me how to work her feet.  I have been doing those with her twice a day when I go in for her feedings.  Her feet have great flexibility and can be moved back into neutral position, which is wonderful!  They will not start splinting or casting while she is here, if she needs it, we will do that care once we get home.  They will also do a hip ultrasound to make sure she has no issues there, but are waiting until she is out of the incubator since she will have to take a trip to another floor to receive it.

So far her head circumference has remained the same.  They did another head ultrasound on her today but I didn't get the results.  I will find those out tomorrow, hopefully still stable!

Her back still looks good, her scar has healed well.  It looks like it has a red patch around it, kinda like a birth mark.  She doesn't need any special care for it, although we still keep her off her back when sleeping (she sleeps on her tummy most of the time).

She has continued to gain weight, and is almost back to her birth weight.

She gets to wear cute preemie outfits now.  Some friends we have made at the family house gave me a cute outfit as a baby gift.   Another friend we made at the family house has their son in the nicu right next to Ruth!   She was nice enough to take me to Target one afternoon to get some tiny onesies for her to wear.  I didn't know preemie clothes were so hard to find!  We have met some awesome people here, and hope to stay in touch with them.  Everyone is looking to go home in August too, most of them have been here much longer than us.

Ruth has an impressive view from the window next to her bed.  That is when you can see it (it's foggy here most of the time).  We had a clear day yesterday, so I took advantage and snapped a couple photos:

I have had a good recovery from the c-section.  The family house is about a mile from the hospital so I have been doing a fair share of walking.  Honestly the biggest thing that hurts from that is my feet!  Ha!  Although I am still take the pain medications pretty regularly, I may be singing a different tune when they run out.  Ruth has feedings every 3 hours, and the nurses let me take over her care when I am there.  I try to make as many as I can, usually the 8AM to 8PM feedings.  It is hard to be at the hospital all day with no place to really rest, but time passes pretty quickly when I am caring for her.  I am grateful I get to do that, makes me feel useful :-)

Thank you everyone for your continued prayers, they are definitely working for our little miracle baby!  We hope to bring her home to meet everyone soon!



Monday, July 26, 2010

Ruth Updates (days 3,4,5)

Ruth continues to do wonderfully. As one of her neonatologists puts it, "She doesn't know she's premature."

Preemie Stuff
She is transitioning from IV nutrition to just momma's milk, she should be done with her iv by tomorrow or the next day (although the nurse told me they will leave it in until it goes bad).   She has had no problems digesting the milk.  Right now she is receiving the majority of her milk via an ng tube, which is a tiny tube that goes in through her nose to her stomach.  She also is breastfeeding, which at 31/32 weeks is pretty rare, and has shocked many of her doctors.  She eats every 3 hours, and I do my best to be there at each feeding, although since I am now discharged I will not be able to make it to her night feedings.  Although, who knows, once she starts breastfeeding exclusively I may just camp out on a couch somewhere ;-)

She has still not required any oxygen assistance with breathing, which we are very grateful for.  She does occasionally have apnea that she recovers from on her own, which is common with preemies and she will grow out of it.

Spina Bifida stuff
SB babies typically have some problems with their bladder, sometimes not being able to empty it completely which can cause kidney problems.  She will have a urodynamics study when she is discharged that will give us a lot more details about what assistance she will need with her bladder.  For now, we are cathing her every 3 hours.  Both me and Matt have learned how to do this, but we will not know if we will need to continue after she comes home at this point. 
Her back where they fixed the lesion still looks wonderful.  We still try to keep pressure off her back, so she has been sleeping on her side or stomach.  She should have another head ultrasound to continue to monitor her ventricles, so far they have continued to remain stable.  We are hoping to avoid needing a shunt to drain her ventricles, as brain surgery is something no parent wants their child to endure, but if she needs it we are prepared for that.  If her ventricles remain stable, she should be able to avoid it.  She will be monitored for this closely throughout her first year of life.

I just want to thank everyone for your continued prayers, Ruth definitely is our little miracle baby, and we cannot wait to bring her home to meet everyone!

Much love,


VIDEO: Ruth @ 1 Day Old

Friday, July 23, 2010

First 48 Hours

Day 1

Ruth's first day went better than I could have ever imagined.  After I was deemed stable enough to leave the c-section recovery, my kind nurse wheeled me in the gurny to see her.  I held her hand and enjoyed those precious moments with her. My MIL had been standing guard by her bed most of the day ready to report any and everything back to me. 

After leaving her bedside in the ICN (intensive care nursery), I went back to my room to recover and wait for Matt to arrive, since his plane left shortly after she was born.  My MIL continued to stay vigilantly by her bedside.  She still required no breathing help, not even a nasal cannula!

Shortly before Matt arrived, they moved me to a "postpartum" room closer to the ICN, so I wouldn't have as far to go to visit her.  I was still hooked up to many things, and after Matt arrived a nurse helped me into my wheelchair and we headed down there.  We took photos of her, talked to her, and held her tiny hands.  We weren't able to hold her at this point until she was released by her doctors.  She is just perfect!  Dark blue eyes, the best we can tell.  Blonde hair (surprise!).  We are not sure which one of her sisters she looks like just yet, but she definitely looks like them!

They had her prenatal surgery scar covered with a bandage, until released by the pediatric neurosurgeon.  We hadn't gotten to see it at this point, but were told by everyone it looked really good.

We spent the day going back and forth, and towards the end of the day they let us hold her, and let me try to breastfeed.  I didn't expect too much from her in that area as little as she is, but she impressed everyone!

Medical stuff - they did a head ultrasound and kidney ultrasound on her.  The head ultrasound shows stable ventricles, same as her last prenatal sono.  The Kidney ultrasound showed her kidneys were slightly swollen, so they will continue to cath her to make sure she empties her bladder completely.   This is a really common thing with spina bifida, and we were prepared for that. 

She does have club feet as expected.  They don't seem extremely stiff, but I imagine once we get back home they will straighten them out with a series of castings.  Not a huge thing to fix, and this is one thing that can be "fixed".

Matt was exhausted and slept most of the night, but everytime I got up to pump breastmilk I called the nurse to take me to see her.  I would try to breastfeed, and she latched on well one of the trips down there.  Around 3 or 4 in the morning I went to see her and was turned away, another baby with serious problems was being admitted in the bed next to hers.  I broke down in tears, there's those hormones working!  The nurse felt sorry for me and got me in to see her for about 15 minutes before they had me leave again.

Day 2

Day 2 meant less wires for me, and a lot more walking.  I spent as much time as I could handle by her bedside. 

They slowly started moving her from IV nutrition to momma's milk via an ng tube (tube down from her nose to her stomach).  She is also getting really good at breastfeeding, so much we have to stop when she starts swallowing the milk, as she is so little we have to take it easy to see how her system handles it.

They released her to remove the bandage from her back.  She is still on some restriction, when sleeping or being held she isn't suppose to have pressure on her back.  She seems to like being on her side.  I did finally get to see the scar, it has healed so much since the photos they gave me of her prenatal surgery!

We are just absolutely in love with our baby girl, and can't wait to bring her home to meet her sisters.  Please keep praying for her growth and health, through both the premature issues and the spina bifida issues.


Ruth's Birth

The magnesium had done a good job of slowing down my contractions, but they hadn't stopped. Around 11 PM my water broke, and even after increasing the magnesium to the max, my contractions became very intense and close together. At this point, I was up at the hospital by myself, with Matt not coming until Saturday, and my MIL already gone back to the family house to sleep. I was left alone for a suspicious 30 minutes or so, and had a feeling they were planning my c-section. Since I had prenatal surgery, I had a fairly fresh scar on my uterus, and with every contraction I knew I was getting close to rupturing my uterus (which would be very dangerous for both me and baby). Sometime after midnight, doctors and nurses came in and said it was decided by the fetal treatment team, the best course of action was a c-section now. By now, Matt had rescheduled his flights for first thing in the morning, and I tried to see if we could wait until he got in. No, it was too dangerous. I was given enough time to call Matt and my MIL, and rushed off to prep.

The hospital chaplin, a very nice man named Kevin, came in and kept me company. It was decided I would have a spinal for pain. The spinal did not cover the entire area it needed to. They offered to put me to sleep completely (general), but then my MIL wouldn't be allowed in, and I knew I needed someone to watch over Ruth and tell me what happens here. I was then given the option to add a small dose of pain medicine to my IV, and nitrous oxide. I said I would try that. I asked Kevin to stay in the OR and pray. I remember them letting my MIL in after a while, and she was wonderful in being my advocate. I remember hearing a beautiful sound, my wonderful baby's cries.

The next thing I was in the recovery room. I sent my MIL to Ruth, I was desparate to know how she was doing. No photos were taken in the OR.

My MIL stayed by Ruth's side, coming back to show me photos and report on her status. She needed a little help getting going, but was breathing on her own. She weighed 3lb 15 oz, and was 16 inches long, a good size for 31 weeks. Her apgars were 5, 6, and 9. She is beautiful, and perfect.

I fully attribute how wonderful Ruth is doing to the team here, and will be forever grateful.

Thank you everyone for your continued prayers.

Much Love,

Thursday, July 22, 2010

Ruth is here!

I just wanted to write a quick update. Around 11 pm last night my water broke, sending me into full labor. The fetal treatment team decided that the risk of waiting any longer was too great, and Ruth wasn't handling the contractions as well without fluid. So, at 1:50 am pst, our sweet Ruth was born. Her stats: 3 lb 15 oz, 16 inches. She is doing great today, has needed no assistance with breathing. Her scar looks great, we have been able to hold her and try to breastfeed. I will update the full story with photos once I get my laptop up (posting this from my phone), hopefully later tonight if I can manage to stay awake. Please continue to pray for Ruth, they are working!

Wednesday, July 21, 2010

Update, preterm labor day 1

So, the day isn't over yet but I'm still pregnant! Ruth has been quite the trooper putting up with all these contractions. They been slowly increasing my magnesium, hoping to stop them completely, but they have at least slowed down. Most of them aren't little ones either, ouch! After all day npo (nothing to eat or drink), a bunch of begging, and a really awesome nurse, we convinced the doc to come see if I can eat. One of the fetal surgery fellows came in and checked me over, checked my cervix (which is still dilated but no change since this morning), she reluctantly agreed to let me eat. So that's great news, meaning she doesn't think Ruth will make her appearance just yet. Matt is keeping his ticket for Saturday since he was planning on coming to visit then anyway. Please keep praying, Ruth needs to cook a little while longer!



Well, not a post I wanted to write. I found myself admitted back into the hospital. I woke up this morning with contractions, and went up to be monitored. After seeing strong regular contractions and some dilation, I am now admitted. They gave me a steriod shot to help the baby's lungs mature, and I am on magnesium sulfate to stop contractions. They have slowed down but definitely not stopped. Right now the plan is to stay in the hospital, hoping they can get the labor to stop. If things become emergent then they will deliver her via c-section, hopefully not until at least the steriods have a chance to mature her lungs. I wasn't given a whole lot of hope to be released before she is born, which will likely be in the next week or two. We are hoping for at least 34 weeks, about 2.5 weeks from now. Please pray that she can hold out at least that long. I will post updates when I can.


Tuesday, July 20, 2010

Post Surgery Checkup #6 (31 weeks)

31 weeks - 6 weeks to go!   My halfway point in SF!

My MIL is my support person this week since Matt and the girls left last week.  She has been quite the trooper pushing me around in the wheelchair uphill!  We even got to go watch a Giants baseball game on Saturday together (the family house gave us tickets), she pushed me around there too.  We had a fun time.

Sonogram- Another quick one.  We had the sonogram at 8AM, and he was done so quickly we had wait in the waiting room until the Radiologist arrived to give the "all done".  When she came in, she had me come back again for a look at the posterior fossa (hind brain), because the tech didn't.  She told me everything looks good, and she is amazed I had surgery 6 weeks ago because my pregnancy looks so good still. I don't have the official results yet, as we talked about so many other things at my OB appointment I forgot to ask!  I am pretty good at watching, and it looked like the ventricles were still about the same, which is the biggest thing to watch for on the baby.  Fluid levels, etc, are still great.  He got a great shot of her little mouth moving and sticking out her tongue, and we could even see her eyes looking around!!   He also showed us her sutures from her surgery on her back.  It amazes me still you can see so much on sonograms.

BPP/Non-Stress Test  The sonogram was done so quickly we have about 1.5 hours to kill before my next appointment, so we hung out and got some snacks.  I drank some tea and ate some bread.  It didn't even occur to me that the tea has caffiene, and since I drink so little caffiene now, how that would affect the baby for the bpp.  Well....  she went CRAZY!!  Jumping all over the place, she passed the bpp in record time.  During the non-stress test, the nurse actually had to turn all the lights off, put on soft music, and tell everyone else to whisper.  I'm not sure she ever really calmed down, I felt her jumping around throughout the entire thing.  It was quite entertaining.  Of course, she passed 10/10.

OB Appt - we met Dr. Robertson again, she is wonderful.  She talked about home, and if we have talked to our pediatrician there.  Everything happened so fast after Ruth's diagnosis that we haven't made any arrangements at home, but I know after she is born the specialists here will set up a lot of that for us.  Still having a lot of bladder pain, so she is sending me for another renal sono (I had one early in this same pregnancy).  She said it could also be from my bladder pushing on scar tissue.  I just hope it's something minor and nothing to do with surgery complications.  We talked about the c-section some.  That will be a new experience for me.  The incision will be lower and not as wide as my prenatal surgery scar, so I will have quite the interesting looking belly when this is all said and done.  Weight same as last week.  I have gained about 4 pounds since the surgery, most of that recently.

UPDATE: Emailed Tamara to get the official sono stats, here they are: "Your ultrasound was very stable!  We love that. Your amniotic fuid was 13.8, cervix is 3.5cm, 15 mm vent."

Friday, July 16, 2010

Post Surgery Checkup #5 (30 weeks)

Sorry this is a little late in coming, the girls left this week and I am behind on blogging!  This appointment was on Monday (July 12th)

30 weeks - 7 weeks to go!   Finally in the "30's"!

Just Matt and I went to the appointments, left the girls back at the family house with Grandma. 

Sonogram- Just a quick one.  Results given to us by my OB said ventricles were stable (or maybe slighly improved??), and everything else looked good.  They don't do detailed measurements everytime, next time will be in early August.

OB Appt - went well, we met Dr. Robertson again, I see her for most of the appointments and really like her.  Nothing exciting, got put on antibiotics 4x a day for bladder issues, I think they were just being overly cautious since I am "high risk".  Gained some weight this time. 

BPP/Non-Stress Test  The BPP (bio-physical profile) went really well, the testing nurse does a quick sonogram to look for fluid levels, baby movement, baby leg movement, and breathing movements.  She passed everything really quickly.  She was really active today so they had a hard time keeping her on the monitor.

Wednesday, July 7, 2010

Post Surgery Checkup #4 (29 weeks)

29 weeks - 8 weeks to go!

We all walked to the hospital, well Matt pushed me in the wheelchair with a couple little ones on my lap.  We took the girls with us up to the hospital this morning to meet Rachel and Tamara (the MOMS nurse coordinators) at the Fetal Treatment center.  Tamara was out for the day, but the girls met Rachel. 

Sonogram- They let the girls come watch the sonogram with us, which I'm not sure they were very impressed but the older ones enjoyed it.  They were doing measurements today so it took a little longer, and also since I am in a trial, they have to make sure everything they need on the forms is done.  Ruth didn't cooperate too well to get a print out of her face, she kept hiding behind her hands!  It was cute.  We did get a couple, one of her face, one of her profile.  The tech showed me the weight, Ruth is already estimated to weigh 3 lbs 3 oz!   Had to wait til my OB appt to get the rest of the results, but fluid/cervix still good, ventricles were stable, and the the posterior fossa (hind brain herniation) shows some signs of reversal, which is awesome!   The biggest known advantage to having fetal surgery for SB is the reversal of the Chiari II formation, where the hind brain gets sucked down into the spinal column by the pull of the fluid through the opening in her back.  If severe (which Ruth's is not), it can cause brain stem compression, which can lead to breathing and swallowing issues.  Ruth's was minor to begin with, but we are praying for a complete reversal and a normal little brain!  We are also hoping her ventricles stay stable, and she will not need a shunt after birth.  The only other thing they mentioned from the sonogram is they saw no feet/ankle movement.  She does have club feet, which is easily fixed, so we are hoping it is due to that and not nerve damage.

We had a "lunch break" after the sonogram, so K (my oldest) stayed up at the hospital with me to eat while Matt and the rest of the crew went back to the Family House, where my MIL would watch the little ones for the remainder of the afternoon.  Matt then headed back to meet me for the rest of the appts.

BPP/Non-Stress Test  The BPP (bio-physical profile) went well, the testing nurse does a quick sonogram to look for fluid levels, baby movement, baby leg movement, and breathing movements.  She got a really cute shot of her profile, I guess she moved her hands out of the way for this sono. She decided not to show breathing movements, which is not unsual for less than 30 weeks, but they checked again after the non-stress test and she was "breathing" like a champ. The non-stress test is when they hook me up to monitors to watch the baby’s heart rate and contractions.  They want the baby’s heart rate to increase during activity, and she was active enough through this part of the testing to pass.  She scored 10/10 today :-)

OB Appt - went well, we met Dr. Robertson again, I see her for most of the appointments and really like her.  Nothing exciting.  I actually gained about 1 pound. 

Misc stuff:

Matt and the girls arrived last Wednesday, and are staying for two weeks.  It has made my stay up here much more enjoyable.  I will post a separate post about all we have done.

My dad left this past weekend, and my mother-in-law replaced him as my support person for the next 3 weeks.  So glad they both could give up their time to be here with me.  Without all the great support we could not do this!

Remember Nicole?  She had her baby boy last week, and he is doing great!  We've gone up to the hospital a couple times to see him, soo cute and healthy.  I hope we are as lucky as they are!