Monday, August 30, 2010

A Catheter Situation

Ruth had her first pediatrician appointment on Friday.  They weighed her (5lb 13oz), looked her over, etc.  She got her 2nd hep shot.  They gave me the tylenol chart (if your child weighs this much, you give this much, etc), and she wasn't even on the chart!  So no tylenol for Ruth.  She didn't seem fussy from the shot anyway, so it was good.   She needs to go for her 2nd newborn screen, since Texas requires a lot more than California.  I'll have to go to the hospital for that..  lovely! 

Her sisters were very good in the visit. Although A (3 yrs old) told me to put the baby down, and pick her up! The doctor got a kick out of that.
We've had some issues getting the right catheters for Ruth.  The hospital ordered the first batch for us, which was suppose to waiting for us when we got home.  Well, they were, but they were the wrong type, and they were latex!  So no way am I using those.  I called the company on Thursday and thought it was resolved, but when I called them today it was still "pending" and we are completely out!  I am having to wash/re-use the few I have left.  Which can be done, but isn't recommended with such a young baby, and also since she has already had one uti.  I'm not even really sure what is going on with the order, since my insurance case manager has been on their case too!  Thanks to another mom on a spina bifida group I belong to, I found a website where I can order them myself.  Which means I'll get them quickly, but also means I'll be paying for them, not the insurance.  But it will be a good back-up plan until this mess gets straightened out.

Ruth also had a visit from a home care nurse today.  She basically just did a quick assessment, asked if I had any questions, and filled out paperwork.  She is approved for 3 more visits.  Not sure we really need them, but insurance approved 4 visits, so I guess we are getting 4 visits!  Doesn't bother me to hear that Ruth is doing well from someone else.  The nurse was really nice, and helped me by making some phone calls regarding the cath situation.

Thursday, August 26, 2010

Home at last

We are home!! Other than a lot of worry about how I was going to haul all my stuff through the airport with a baby in tow, the flight was very uneventful. Matt picked us up from the airport, and we headed home to let Ruth meet her sisters for the first time.

The girls were very excited, asked a lot of questions, and looked her over very carefully! I know they are happy to have us home, at last! I know I am soooo happy to be back with all my babies!

Tracy was kind enough to come and photograph for us. They turned out wonderful, and I am so glad we have these photographs to remember this very emotional moment in our lives.

Wednesday, August 25, 2010

Goodbye SF

Ruth had her last SF appointment on Tuesday, the urodynamics study.  Ruth did well, didn't seem to mind (until they took a sticker off her leg, those darn stickers!).

The results could have been better...  She has grade 4 reflux on her right kidney.  The worst possible is grade 5.  She has an open bladder neck.  She will now start on a medicine called ditropan to make her bladder more flexible, and we will continue to cath her every 3-4 hours, indefinitely.  While this news was disappointing, her bladder and kidney health is very important and we will do everything we can for her to be as healthy as possible.

We also said goodbye to some dear friends this week.  Our 3 months in SF has earned us some lifelong friends.  We will miss them dearly, and hope to see them soon.

Monday, August 23, 2010

1 month old, and free!

I was so happy Ruth got out of the hospital before she turned 1 month.  Nevermind it was one day before she turned 1 month!  We celebrated the day by laying around the room, and a brief trip to the grocery store (since I had no food, was planning on being home already!)  I carried Ruth in a wrap (sling that keeps her upright against my chest), and we ventured out.  We've just been taking it easy, enjoying the much more laid back life of life outside the hospital.  I wish we were already back in Texas with our family, but at least the end is in sight now.  My 30th birthday is today, and I am so grateful not to be spending it in the hospital!

A few photos of my big 1 month old, weighing in somewhere between 5 and 6 pounds (how nice it is not to know exactly!)

Sunday, August 22, 2010


We finally got the results about what type of bacteria she had in her urine, and the results were good - the iv antibiotics she had been taking works on that bug.  So the doctors reduced the number of antibiotics she received to one.  Her last dose (giving her 3 days worth), would be Friday night, and then she would switch to oral meds on Saturday.  I was told that discharge may be possible Saturday, since they wanted to see how she would handle the oral meds.  I tried not to get my hopes to high.

Over the last week I've been sleeping in various places at the hospital so I can make it to Ruth's night feedings every 3 hours.  Friday night they let me "room in" with Ruth, meaning she was freed from all her monitors and got to go with me to my "room" (which resembled more of a closet).  It was wonderful, and the nurses left me alone with her so long as I posted a note listing her diaper changes and when she eats.   Being able to hold her without dragging a line of monitor wires with me was so nice!

Saturday morning I took her back down to the Nicu bay, and was told she was ready!  I ran into our wonderful resident and she said she was on the way to write the discharge orders.  I was expecting late afternoon, and it was a bit of a shock!  The wonderful nurses loaded me up with all sorts of supplies to last me the next 5 days before I go home, and I called up our friends from the Family House, since they offered to pick us up so we wouldn't have to take a taxi.  I left in a such a hurry I felt like I didn't get to say goodbye to everyone!  I've spent so much time there over the last month, it felt weird just to leave.  The care we received was wonderful, and I am so grateful for the doctors and nurses that took care of Ruth.

Since Ruth still needs the urodynamics study (VCUG) to determine her bladder and kidney health, and also to determine whether we need to continue cathing her, we will stay in SF until that appointment on Tuesday afternoon.  We will then get to fly HOME on Wednesday!  I cannot wait to see all my girls, and have our family together again!

Thursday, August 19, 2010

4 weeks old!

Ruth is doing very well, has grown a lot this past week and is ready to come home! 4 weeks since her birth today, she is currently 35 weeks 4 days, in gestational age.

Since her last update:

They removed her ng tube on Tuesday, and she hasn't looked back!  She has been a champion feeder ever since, gaining weight and eating lots!  She is now up to 5 lb 5.5 oz!

Wednesday morning the doctors came by during their rounds and said, lets get Ruth outta here!  So everything was set in motion for discharge Thursday morning, appointments were made, I brought her car seat up for her "car seat test", vitamins were called into the pharmacy, etc, etc.  Around 5 pm that evening, our resident came by and said the urine culture we sent off two days prior came back positive for bacteria.  So...  no more discharge.  She showed no signs of being sick, besides cloudy urine.  Since she is so little, and since UTI's can lead to kidney infections, the doctors decided it was best to place her on IV antibiotics for a few days.   I am SO grateful this infection was caught before I brough her home, but it was really hard not to be disappointed.  The current "plan" is to continue her IV antibiotics, switching to oral on Saturday, and possibly discharge on Sunday!  I am trying really hard not to hang too much hope in that, since I was so crushed before when it didn't work out. Although (hint hint), it would be REALLY nice not to spend my 30th birthday in a hospital!!

The VCUG is now scheduled for Tuesday, and if all goes according to "plan", Ruth and I will be on a plane back to Texas on Wednesday!!

Thank you everyone for your continued prayers.


VIDEO: Ruth @ 4 weeks old

Wednesday, August 18, 2010

MRI Monday

Ruth had her MRI on Monday, to look more closely at her spina bifida, and also as part of the MOMS study. Since the scan was looking at both her brain and spine, she needed anesthesia.

She was npo for about 6 hours before the scan (nothing to eat), and was given iv fluids. She was not happy about not eating! They moved us back to the west wing (sicker babies), so her nurse could go with her.

When we got downstairs, the anesthesiologist started preparing her. They took out her ng tube, and used special iv tubing that contained no metal since the mri is a big magnet. They moved her over to the scan table, and put her to sleep with a gas. At that point I couldn't stay with her, it was extremely hard to leave. After I left they put a breathing apparatus in the back of her throat to deliver anesthesia and help her breathe. They also gave her some anesthesia through her iv.

I went and grabbed a quick lunch and waited for her nurse to call once they got back upstairs. When they called me in there, she was very cold and had low saturations and a slow heart rate. She was being warmed on a warming bed (similar to what they put the babies on right after they are born), and had her on "blow by" oxygen. It took her a little over 3 hours to warm up, breathe better, and wake up.

Once she woke up, she ate well the rest of the day. She lost about 10 grams that day, not bad since she missed 3 feeds.

We didn't get the results for a couple days since we had to wait for the pediatric neurologists to look at it. Her hydrocephilus showed some increase from her fetal mri (done before her prenatal surgery), but are stable and does not indicate the need for a shunt to drain the extra fluid out of her brain, at this point. That could still change, so we will continue to monitor her for changes for quite some time. But it is very hopeful since she does not need one at this point, she may not ever need one!

They also commented that she has a very minor Chiari II defect, where the back part of her brain is pulled down towards her spinal column. They did not comment if it was improved, since hers was minor in the first place.

The last thing they mentioned was it did show what they call a tethered cord, where her spinal cord attaches to scar tissue from her repair. They commented that this was expected. A tethered cord can cause problems and require a release surgery, but only if it becomes symptomatic. This is something we will watch with her doctors at home.

Overall, the results were good. She will have a follow up MRI at one year old, and again at 2.5, as part of the MOMS trial.

Thursday, August 12, 2010

3 weeks old!

Ruth is doing well, continuing to grow and mature. 3 weeks since her birth today, she is currently 34 weeks 4 days, in gestational age.

Since her last update:

She has made great progress over the last week with feeding, taking more and more of her feeds by breast or bottle.  She has even skipped a few ng feeds!  We are hoping to transition completely off the ng tube by early next week, but that may be wishful thinking.  She will need to be completely done with the ng feeds and gaining weight for a couple days before discharge.

We are still cathing her, although the volume has decreased so we are now cathing every 6 hours instead of every 3.  The VCUG (urodynamics study) shortly after discharge will tell us if we need to continue.

She has had very few apnea episodes, and none in the last couple days, so we are hoping she has outgrown these.  She will need to be clear of sleeping apnea for at least 5 days before discharge.

We are continuing to do physical therapy with her feet, a few minutes twice a day.  She had her hip ultrasound last week, and all was normal.

So far her head circumference has remained about the same, with normal growth. They did another head ultrasound on her today, showing continued ventricle stability. She will also have her MRI (as part of the MOMS study) on Monday.

She has continued to gain weight, and is currently at 4 lb 11 oz.

For discharge, we are still working on the same two issues.  (1) Apnea - which we are hopeful that we are now done with.  (2) Feeding.  She has made great progress, but will need to get 100% of her feeds by breast or bottle, with weight gain, at least a couple days before discharge.  They have her VCUG tenatively scheduled for next Friday, which she will have to be discharged to receive.  That doesn't mean much, other than the doctors are hopeful she will be ready by then.

I am updating the twitter account daily with any Ruth news. You can read the updates on the side bar of the blog (under “Twitter Updates”), or by going to the twitter website:

Thank you everyone for your continued prayers.


VIDEO: Ruth @ 3 weeks old

Saturday, August 7, 2010

First Tub Bath

Ruth got her first tub bath today!  She was cleared by the neurosurgeons a few days ago to submerge her scar in water, and this afternoon I got to give her the first bath :)

Afterwards she enjoyed her feeding and a long snuggle session.  She is weighing in at 4 lb 7 oz today!

Me-Maw flew in today to meet Ruth, and will be here for the week.  We are very glad to have some company!

Thursday, August 5, 2010

2 weeks old!

Ruth is doing well, continuing to grow and mature. 2 weeks since her birth today, she is currently 33 weeks 4 days, in gestational age.

Since her last update:

She is continuing to receive the majority of her feeds through her ng tube. She is getting a lot better at breastfeeding, and hope to see big improvements next week as she passes the 34 week mark.

We are still cathing her, although the volume has decreased so we are not sure if she still needs it. They will do a urodynamics study the day she is discharged (she has to go across the street for it so they will not do it now), that should tell us more what she needs.

She was moved out of the incubator today because she has been maintaining her temperature well. She is on a 24 hour trial to see how she handles it. If she keeps warm, and does not burn too many calories keeping warm, she will stay out.

She has good strength and movement in her legs, and even seems to push against us when we change her diaper, or during her physical therapy. We are not sure how much she feels in her legs or bottom, but she does seem to react when we mess with her or change her diaper. She has not had her hip ultrasound yet, they were waiting until she was out of the incubator since she has to travel to a different floor. I imagine that will happen sometime in the next week.

So far her head circumference has remained the same. They did another head ultrasound on her today, and it also showed continued stability with no other issues (i.e. preemie issues). I met the neurosurgery team today, and she was cleared to have tub baths since her scar has healed so well.

She has continued to gain weight, and is currently at 4 lb 3.5 oz. She was up to 4 lb 5.5 oz at one point, but dropped back down a little.

I get a lot of questions about when she will be discharged. Right now, she needs to accomplish two more things. First being, no more apnea. She occasionally forgets to breathe for about 20 seconds, dropping her heart rate. She comes out of these on her own with no major intervention. She will grow out of these as her nervous system matures, and will need to be clear of these for 5 days before discharge. Second, she needs to be able to take her full feeds from breast or bottle. I have given "permission" to give her a bottle when I am not at the hospital, and I believe they will start trying that once a night soon. From what they tell me, around the 34 week mark is when they really get it. So hopefully we will see big improvements in the next week.

I have had a good recovery from the c-section. I am barely taking any pain medicine at all anymore, and I feel all the walking has been good exercise. After being in a wheelchair for 2 months, the walking is nice. Although I could do without the weather here. It is way too cold, something is just wrong with 50 degree weather in August!

For those of you that want more real time Ruth updates, I created a twitter account just for that purpose. You can read the updates on the side bar of the blog (under "Twitter Updates"), or by going to the twitter website:

Thank you everyone for your continued prayers.


VIDEO: Ruth @ 2 weeks old

Wednesday, August 4, 2010

Little Blessings

Today was a rough day for me. No real end in sight for our nicu stay, or so it feels. Everytime I talk to the doctors we are 2-3 weeks away from discharge. We were 2-3 weeks away, 2 weeks ago also. I love the time with my sweet girl, but I dread the in between time when I can't hold her, and just sit by her bed.

I headed back to the family house at the end of the day, and sat down to eat in the common kitchen area. I got to talking to one of my favorite families here, and we started talking about the little blessings. They told me how they feel God has brought blessings to their life through the horror of their 3-yr-old's brain cancer. I know our time here is limited, and there are days I hate the challenges Ruth is facing now, and all the challenges she will face in her life because of spina bifida. But God has brought many little blessings to our life already, before she was even born. Just being in San Francisco and in the medical trial to help her was a blessing in itself. All the friends and family that have rallied around us the last 3 months, to help with our other four daughters, prayers, and messages of support and love.

Ruth, the miracle of her life, is the biggest blessing of all.