Friday, December 24, 2010

Since we've been home....

Things have been crazy! I am sorry I haven't updated. We have been home a week now and are still getting used to the tube. Scarlette seems to have no problems with it other than healing from the pain. It has taken her longer than we expected to heal, but having three procedures done at once it should come as a surprise to us!

She is still taking 2 oz by mouth for every feed, and we are up to 3/4 container of baby food daily. Before the surgery she was getting 2 to 3 containers so we are trying to get her back up to that. We can't wait until her tube is completely healed and causes her no more pain. It's been so nice to feed her for only 15 minutes and then put the rest through the tube. Babies are not supposed to take more than 15-30 minutes to eat because then the physical exertion is more than the caloric intake and it can actually be detrimental to weight gain. It was taking us one to two hours to feed Scarlette every bottle prior to the surgery. Not good for her or us.

We go to see the surgeon, the dietician, the speech therapist and the GI team for post-op follow-ups next month. We are praying that she starts gaining weight quickly, although so far she has not gained an ounce since the surgery. She is exactly 13 lbs!

Also, she gets her new hearing aid on Jan. 6th and we are excited to see what changes it creates for her to be able to hear normally.

It's Christmas Eve today, and we are so excited to get to spend time together as a family, and get to see my grandma, aunt and uncle and cousins tomorrow! We are so fortunate to have some family here on the East Coast! To all our family on the West Coast, we love you and wish we could be there with you! Merry Christmas!

the Skrove's

Wednesday, December 15, 2010


Discharge paperwork has been put in, all we are waiting on right now is the case worker to get in contact with America's healthcare, our medical supply company, and let them know that we need feeding tubes, extra mic-key button and a feeding pump! Hoping to be out of here in the next hour! Mitch is playing Tetris on my DS that he gave me as an early Christmas present (MANY hours have been logged on it this past week!) and Scarlette is napping peacefully. Can't wait until we can get outta here! :0) Thank you all for your prayers this week, it has been such an encouragement to us and I truly believe Scarlette's recovery went so smoothly due to your diligence in remembering to pray for her! Thank you cannot be said enough!

the Skrove's

Tuesday, December 14, 2010

Some pics of Scarlette's hospital stay....

Here are some photos of our hospital stay, I haven't been able to upload any while at the hospital!

Scarlette's Surgery Day 4 and 5

This will be rather brief, as there isn't much to remark on. Yesterday, (Monday) Scarlette was able to start taking pedialyte through her g-tube and tolerated it very well. She was cheerful for most of the day but was very clingy and did not want Mommy out of her sight for one second! Mitch took over last night around 7 p.m. and by 9 p.m. she was out for the night!

I came in around 9:30 this morning and Scarlette was in a very good mood! She opened some presents from her Cafemom Secret Santa (Mandy and Baby Logan) and we got lots of smiles from her big stuffed Minnie and her board books. She started 1/2 strength formula today on continuous feeds (meaning she gets them through her tube at a rate of 30 mL per hour) and in about two hours she will transition to full strength formula and bolus feeds (the entire feed will be given in an hour as opposed to over a longer period of time). As long as she tolerates all of this well, then we get to go home sometime tomorrow! They are hoping we can be discharged right after rounds in the morning, but usually paperwork takes much longer so it might not be until after noon that we actually get out of here! We are just very glad to be going home! Keep praying that she tolerates all of her feeds well so that she doesn't have to stay for a longer period of time!


the Skrove's

Sunday, December 12, 2010

Scarlette's Surgery Day 2 and 3

So yesterday after we got the pain under control Scarlette slept for most of the day. She would wake up in some pain about an hour before meds were due and then go right back to sleep as soon as morphine was administered. She had her last dose of morphine around 5 p.m. yesterday and then we switched over to tylenol with codeine.

Mitch and my mom brought dinner and we all ate in SJ's hospital room while she slept. My mom and I then left Mitch there for the night. Scarlette woke up at about midnight and was up watching tv until 3 a.m. Then slept until 6 a.m. and was up for the day. The tylenol w/ codeine seemed to be helping the pain.

I arrived at the hospital this morning at about 8 a.m. to a very grumpy young lady. Mitch stayed for about 20 minutes filling me in on the night and then went home to sleep and relax. Scarlette was not happy today, but she wasn't in a ton of pain from her surgery. She seemed to be very irritated and had a lot of gas in her belly which was probably causing most of her aggravation. The doctors did rounds at 9:30 and said that she could have some pedialyte by mouth today. They also prescribed her something to help w/her constipation and gas. I was pleasantly shocked to see a familiar face. Dr Chahine, the peds surgeon in the NICU of the hospital where Scarlette was born, and the also the surgeon that performed her umbilical cutdown walked into the room. He recognized our name so he knew who I was before recognition set in for me. It was amazing to see this doctor who I haven't seen in over a year, but who we saw often when SJ was first born and was ALMOST her surgeon for her d. hernia repair. He was very kind and remarked on how healthy Scarlette looked.

After the doctors left it took me about 3 hours to calm Scarlette down. Then when she finally fell asleep the nurses came in and woke her up to give her meds (GRRRRR). She cried again for another two or so hours, intermittently, but enough to have me looking at the clock every five minutes wondering when my relief would be there! I started to feed her some pedialyte, we got about 15 mL in before she decided she had had enough.

Mom and Mitch showed up at 5 p.m., and Mitch and I went and got a snack while Mom said goodbye to Scarlette. We hung out until 6:30 p.m. and then I had to drive Mom to Dulles airport. Mitch is with Scarlette now and she seems to be doing well. She has even had a little bit more of her pedialyte. Hopefully tomorrow we can start some feeds through the tube, and maybe even a little bit of formula! Thank you all for your continued encouragement and support, and I hope that this update is succinct enough and not laden with confusing medical terms! :0)

the Skrove's

Saturday, December 11, 2010

Scarlette's Surgery Day 1

I am sitting in Scarlette's hospital room typing this up on Saturday morning. I hope to briefly catch you all up on the last 24 hours. We arrived at Children's yesterday morning around 10 a.m. We were pulled into pre-op at about 11. Scarlette's vitals were taken and at that point she fell asleep while we met with the cardiologist, anaesthesiologist, surgical resident and surgeon. Basically just answered a few questions, made sure everything was good to go and then waited for a while as they were preparing her O.R.

The cardiologist being there was a surprise, they informed us that they wanted to perform an internal ultrasound to get more clear and precise pictures of her heart and this was the best opportunity to do so as she was already going to be sedated.

I had requested that they inform us when she was safely intubated, as that had been a hiccup in her cleft palate surgery. The anaesthesia resident took Scarlette from me, and at that point we went back to the waiting room. Fifteen minutes later, we were informed that she had been safely intubated. That was a huge relief and the first 1/4 of the surgery had been performed safely.

About half an hour later, the cardiologist came in to speak with us. It was a very good thing that they had decided to do the internal ultrasound because they found a new abnormality in her heart. It's very hard to explain but I will try my best. There are four chambers in the heart, two atria, and two ventricles. The two atria have a septum or wall dividing the two, but Scarlette has a hole in this wall. That we already knew, however what we didn't know is she also has a thin membrane of tissue that seperates the top portion of both atria from the bottom. This is called cor triatriatum. What's amazing is she does have a hole in this also, which is how her blood is being pulled out of her atria into her pulmonary arteries. Right now this only needs to be monitored, however if the hole starts to close, or the tissue starts to form on top of itself, then it would prevent her blood from leaving her heart and becoming oxygenated. The treatment for this would be open heart surgery. Thankfully the doctors were made aware of it now, so that it can be monitored closely to detect whether or not it's getting worse. I know how hard this is to understand, especially without pictures, but basically all it means is that her heart is slightly different than ours and may eventually have to be surgically fixed, but for now she is perfectly fine living with this.

We did not get another update until after lunch and all we were told was that she was still in surgery and doing fine. An hour and a half after that (about 5 p.m.) Dr. Safford came in to the waiting room. He told us the surgery went as perfectly as it could have. He was very pleased at how the esophageal wrap came out and the g-tube placement was perfect. He did not feel the need for her to stay in ICU overnight, and we could see her as soon as they had woken her up.

We got to see her about a half hour after that and of course she was crying and completely overwhelmed. The nurses were busy giving her pain medication, and as soon as that was administered she calmed down and went to sleep. Mitch wanted to take the night shift, so my mom and I left last night at about 8 p.m.

Scarlette was only comfortable through the night if she her pain medication was effective. As soon as it began wearing off she would start to cry and her oxygen saturation levels would drop causing alarms to go off which further disturbed her. Mitch said it was not a very peaceful night.

I arrived this morning around 8:30 and she was crying very hard and in an extreme amount of pain. They would not let her have any more morphine until 9 a.m. but it was heartbreaking as you could tell how much she needed it. Mitch left around 8:45 and Scarlette would not calm down. I practically begged the nurses to please give her pain meds and they let me know that they had paged the attending with a stat page to come and check on her. They finally let me hold her at 9 and I tried to calm her down but to no avail. The doctors arrived at 9:30 and I was on the verge of breaking down myself because I could tell just how much pain she was in and it was so agonizing to not be able to help her. At 9:45 she finally FINALLY got her morphine and by 10 a.m. was sleeping peacefully and has been since! It is now 12:30 and she can have more morphine at 1:45 and I am just hoping this dose lasts until then.

The doctors JUST came in and said her belly is nice and soft and her stats are very good and the nurse can take the NG tube in her nose out just as soon as she wakes up! A couple hours after that she will get her first little bit of pedialyte through her new G-tube and they will gradually increase feeding (and then start on formula) and monitor how she is tolerating the feeds. As long as she doesn't start throwing up or continues to be in as much pain, it's just a matter of getting her to eat normally and then we will be able to go home!

At best approximation we will be home Monday afternoon, at worst probably Wednesday or Thursday. Thank you all so much for your prayers! Now we need a few prayers for fast healing and no more pain for miss Scarlette!

the Skrove's

Tuesday, December 7, 2010

Met with the anaesthesiologist today...

First of all, my mom flew in for the week, yay! Scarlette is so excited to see her G.J. and spend time with her before the surgery! She will be here until Sunday which also means she will be here to help me host my Scentsy party, woohoo!!!
Ok so met with anaesthesiology today and all I have to say is UGH! This is so frustrating and drawn out and I wish people had better communication! Ok, vent over. They are taking extra precautions with Scarlette which is AWESOME but they are trying to figure out if she needs a regular or cardiac (specializes in heart problems during sedation) anaesthesiologist (I am REALLY sick of typing this word LOL!) So in order to determine this they have decide she needs a heart echo ultrasound TOMORROW! Hopefully the referral went through today as they put it in for STAT and we will get everything done we need to tomorrow. Otherwise, they will postpone the surgery again! :0( Pray that labs and heart appt goes smoothly tomorrow. This mommy is ready to tear out her hair!

Friday, December 3, 2010

New Surgery Date....

Surgery is set for December 10. Thank you all for your prayers and we will keep you updated as we know more! :0)