Catch up

Thought I would update my blog since I'm about 2 years behind. I keep thinking I'll do a blog post every month, and then before I know it, the month is gone!

The last post was from Feb. 2015 when they did a heart cath on Susannah to figure out what her exact pressures were. After that, she had surgery on April 7th to tighten her PA band. This surgery went extremely well and she recovered quickly. She was only in the hospital for 3 days!
The talk at this time was that she should be ready for her double switch 3-6 months after the tightening. Well, in June, we went to a surgical consult expecting a surgery date, and coming away with waiting a few more months. They were saying Sept./Oct. We were hoping these dates would work out, because we found out baby Caleb was coming and would be due in Nov.
They decided she wasn't quite ready in Sept. and we continued to wait. However, In September, we ended up going to Kansas for a quick trip to see Leigh's Grandpa Riffel before he passed away.
My Dad was in Texas having radiation treatment, so Melissa kept the kids when Caleb was born in November.  Deborah came down the week after to help out. She decorated the house for Christmas!
Rachel, Mark and Deborah came to help us celebrate Christmas. (That finishes up 2015 :) )


Susannah's DS surgery ended up being on March 23, 2016. Caleb was 4 months old at the time of Susannah's surgery, and I was bound and determined that he would not be bottlefed, so he went to the hospital with us, had to have special permission to hang out in the close waiting room  (because it was flu season and he was not allowed in the PICU, and because the floors play room was off of that waiting room where sick kids went to play), and I went back and forth between him and Susannah. Both my parents were there and my sisters came on different weeks. Our church provided food and  gift cards and visits, which was a tremendous blessing. Melissa (and Pastor) had our other kids at the house, trying to keep things as "normal" for them as possible. I say "normal" because Misselissa is SO MUCH FUN!!!! :) :) The hospital stay for the DS was 10 days. After this surgery, she ended up with a narrowed baffle and fluid backup, and we went back to the hospital overnight in May for a ballooning via cath, which didn't work, and allowed us to go back a week later due to the increase in fluid and get a chest tube and a stent. She was also diagnosed with chylothorax and we got to stay for two weeks in the hospital. She also had to be on a fat free diet for 6 weeks after she got out of the hospital. For this hospital stay, Grandpa and Grandma Cannavan were able to come and stay at home with the kids. Grandpa Riffel and Grandma Connie came for Memorial Day weekend and helped give my parents a break. I went back and forth at night with Caleb, so we could get better sleep at home. Thankfully, he was allowed in her room with us since we were in the intermediate PICU and it wasn't flu season.
Not doing details since it's behind, and most of it's on Facebook on her page.

She turned THREE in July, just a few weeks after she got home. We got to go to Sanibel with my sisters in August. We went to Pensacola for Christmas. That finishes 2016!

Surgery Consultation

We were finally able to have a consultation with Dr. Bove, one of the top Doctors in the US that perform the Double Switch surgery! Dr. Bove was there along with Dr. Scholl, the surgeon that did Susannah's first surgery, and then another cardiologist, Dr. Bibevski. When Susannah has her surgery they will all three be doing it together. Dr. Bove has done over 140 Double Switches, and Dr. Scholl (as of last January) had only done 3. In the world of Double Switch surgeries, there are four doctors, that I have been able to find, that have done a significant number of these surgeries. The top two are Del Nido in Boston and Bove in Michigan. I cannot explain how thrilled I was to hear that Dr. Bove would be collaborating with Joe DiMaggio!


https://www.youtube.com/watch?v=p1dsI1t5Xek&feature=player_embedded 


Our visit went well. Dr. Bove gave us more information about Susannah's heart that we hadn't been told before. The more of these patients he sees, the more convinced he is that the Double Switch is the thing to do, and sooner rather than later. With Susannah already having a significant tricuspid regurgitation (a sign of heart failure), her heart would inevitably go into complete heart failure and at that point she would require a heart transplant, which has an entirely new set of problems. The only other option is to do this double switch. From the research we've done and questions we've asked, we're convinced that this is a surgery that Susannah needs to have done, and Dr. Bove was our first pick of surgeons to perform it.
Apparently, the PA band should not be left on indefinitely or too long, because it can cause the valve before it to become malformed and not function properly. He feels her surgery should be done within the next 3-6 months. The numbers on the ECHO look good enough to go ahead with the Double Switch, but they will do a cardiac cath to get a more accurate reading of the pressures, and such, before they go ahead with the Double Switch. If the numbers are high, then we need to do the surgery soon, if they're just right, we can play around with a few months, and if they're low, then they'll do surgery to tighten the PA band.
When they do the Double Switch, they'll go ahead and put in her pacemaker. They usually leave the chest open for a couple days for swelling, drainage, etc., and depending on how well they can get the leads on they'll either put it on after they finish the DS, or when they go in to close the chest. I think that's all for now. My notes are in the bedroom where Leigh's sleeping, so I'm going to wait to double check.


So, our next step is the cardiac cath, which is supposed to be an outpatient procedure, possibly an overnight stay. They're going to let the cardiologist know what we discussed and then somewhere after that the hospital will call me to make an appointment. I don't know if that will be after our next cardiologist appointment or between now and then. Her next appointment is the middle of Feb., so I guess we'll just wait and see, and if I get antsy I'll go ahead and call! :)

Happenings around the Riffel Household

Well, my last post was in August, and we've been quite busy since then!
Susannah has done well with the DuoCal, which is carbs and fats in a powder that we mix with her formula. She has been gaining on a curve since we started that. She went back to the GI dr. in October and he put her on a liquid fat called Liquigen. So we added that as well. She seems to be gaining better and maybe even a tad more than the curve. He released us for 4-6 months. Right now we have an appointment in March, but if she's gained well at our cardiologist visit in Feb, I'm going to move it. Since her weight gain has improved, the Cardiologist said, in November, that we didn't have to go back for THREE months! This will be the longest we have ever gone between cardiologist appointments. Even before she was born, we were at the cardiologist at least every month, if not twice a month! While we were on Christmas vacation, I received a phone call I was waiting on, to consult with Dr. Bove, the heart surgeon from Michigan. On Jan 7, we meet with Dr. Bove and Dr. Scholl, the Dr. who did Susannah's first surgery. Hopefully, we will be able to get a more likely timetable, of when her big surgery will happen.




September brought Emily's and Josiah's birthdays. Aunt Deborah and her friend Miss Amy were able to come down and help celebrate a few days early. October was busy with school and getting things lined up for November and December. The beginning of Nov. the kids and I went to Dothan for the Peanut Festival. We packed in a bit more in this trip than we usually do. We went to the Army Aviation Museum in Ft. Rucker and then we took the kids to the Marianna Caverns. It was fun and I think the kids enjoyed it. Of course, we also went to Luke's "Birthday Parade." The peanut parade always lands around Luke's birthday, and when he was little, he truly thought it was for his birthday! :) We also celebrated Luke's birthday while we were there. We celebrated Thanksgiving at the church with our church family. There were a little over 30 that showed up and a few came that wouldn't usually go to church. A week after Thanksgiving, Leigh and I drove to Dothan, dropped the kids off, and went up to Tennessee to the Marriage and Family Conference at the Bill Rice Ranch. Celebrated Timothy's birthday Saturday, before coming home on Sunday. We then went back to Dothan for Christmas two weeks later!! Our plan was to stay in Dothan a few days and then go to Atlanta and spend a couple days there. Well, all of the kids got sick that week at different times, so the plans changed to where Leigh, Luke, and Emily went up and spent the night and afternoon and came back to Dothan before we headed home. Overall we had a lovely time and made some entertaining memories!

Overdue update

Gastroenterologist visit went ok. He ordered blood work and a stool sample. He started Susannah on Zantac in case she has hidden reflux that might be making her not want to eat very much. Said it would take two weeks to start working and maybe act as an appetite stimulant. He also prescribed PediaSure 1.5, which is a prescription PediaSure that has more calories than what you buy on the shelf. After three days of giving her both, she decreased her eating, so I got permission to stop the Zantac. She still refused to eat, so I quit the PediaSure, got her on milk and then back to her regular formula. After she started eating well for several days I started the Zantac back and she's been on it three weeks now and has shown no signs of an increased appetite, so when we go back I'm going to ask to stop it altogether. She has never shown any signs whatsoever of reflux and her formula is a sensitive kind anyways, so I seriously doubt she has any problems in that area. Her appetite isn't bad, she just doesn't intake enough calories to compensate for her heart condition. She does eat and she eats fine. She has started to show more interest in what we are eating and is starting to prefer solids to milk, which is normal development around a year old. She WILL NOT take the Pediasure at all. We've tried mixing it to various degrees and she won't have anything to do with it! I'm hoping he says we don't have to come back. I don't feel like he really listened to us. We told him how much she drinks a day and he prescribed well over that amount and we also told him that she doesn't really like sweet stuff, and the PediaSure tastes like vanilla milkshake flavor (yes, I tasted it). We weren't really surprised that she quit drinking it, but we were hoping she would tolerate it just for the extra calories.


Cardiologist visit last week went well. He is so relieved that someone else is watching her weight. She gained 5 ounces from the previous visit and if she gains between now and Sept. we won't have to go back to him for 3-4 months. Nothing has changed on her Echo's since a few weeks after her surgery in Jan., so I think she's fairly stable for now. We're just waiting for her to grow more so the band can do its thing and we can have the Double Switch done. I asked about a time table and he talked like it would be 1-2 years based on her slow growth. Of course, there is no absolute way they can come up with a time frame, it's pure guess at this point. He asked if she tires out while playing, which would be a sign that she might need a pacemaker, but as far as I can tell she does fine. With her personality, I'm not sure I would be able to tell at this age if she's tired or not from playing or if she's just playing in a different way. The plan was to wait for the Double Switch and put a pacemaker in then, but since it keeps getting pushed further out, she might need it before her big surgery.


Praying that she'll continue to gain and grow, that she'll continue to be stable and that her tricuspid valve leakage won't get worse, and that I'll be able to clearly notice symptoms of her needing a pacemaker if/when it comes to that.


This is a link to a video of a little boy that has CCTGA and got the Double Switch surgery done. The first three minutes does an excellent job of explaining and diagramming what the surgery will be, and what a CCTGA heart looks like next to a normal heart.
http://www.youtube.com/watch?v=Ur05mwMn8FA&feature=youtu.be

Happy Birthday!!

Happy Birthday, Susannah!!! It's hard to believe a year has gone by since our sweet baby girl was born!! It's been one of the longest years of my life, to be sure. She is growing up way too fast, as they all do, but she has been an absolute joy!! She has been, by far, the happiest and easiest of all of our kids. It could be because she has so many entertainers. :) She has six teeth, four on the top and two on the bottom. She has been cruising around furniture for a few months now. The past few weeks she has been standing by herself, but just yesterday she took one step and held it. She's still a bit wobbly. She has gotten a bit more demanding with her food. She eats a fairly wide variety, but still prefers to not eat fruit or things that are too sweet. I try to buy the baby food that has the most calories in it, which the latest I've found has been the spaghetti. It's quite a mess. :) Of course, she eats quite a bit of table food as well, but it's harder to count the calories in that. I've been trying to figure out how to wean from bottles, she's the only one that's been primarily bottle fed. The cup is coming along slowly. Her "tricks" include clapping, waving bye-bye, clicking her tongue, and kissing. At 11 months she weighed 13lbs 9 oz and was 26 inches long. I don't know how to explain how thankful we are that she's with us. She's come a long ways, but she has quite a journey ahead of her as well. Trusting God to see us through!! Thank you to everyone who has prayed us through this year!!
Mommy and Daddy and your big brothers and sister love you so much Susannah!!!!!

 

 

 

 

Update: At our cardiologist appointment in June, Susannah had not gained any weight from the previous appointment in May (5 weeks between), so we are off to see a Gastroenterologist in a couple weeks.

Susannah's checkup

We went to the cardiologist Tuesday for Susannah's checkup and it turned out to just be a weight check! Yay for that!! When they do an ECHO it's usually about a three hour appointment, so it was a pleasant surprise that the Dr. decided not to do one. She gained about 10 ounces from her last appointment which was 4 weeks ago. He said he wasn't thrilled with her weight gain, but he was okay with it. :) He told me he was prepared to march in and refer us to a GI doctor to discuss other calorie options or feeding tube options, but since she gained well and stayed on a curve upward, it would be my warning (he didn't call it that) for next time. So, if she doesn't gain well between this appointment and next, then next time he'll refer us to a GI doctor. I've pushed back a bit every time he's mentioned feeding tubes. He knows I don't want to go that route. She's just such a happy, healthy little girl that takes everything by mouth, as much as she wants, without tiring out, I just don't see how a feeding tube would be beneficial at this point. I could understand it if she still wasn't gaining weight, lethargic, didn't have the energy to eat, or tiring out while eating, whatever, but she's not like that at all, so to me it seems as if that would be regressing. He seemed to understand where I was coming from along those lines of thinking, and he said they would sometimes do continuous overnight feeds, which I was aware of, but she's been getting up once or twice a night and eating, so even doing that seems unnecessary, in my opinion. Susannah's been gaining on an upward curve since her surgery, so I really think as long as her heart stays like it is and doesn't get any worse right now, she should continue to gain. At least that's what makes sense to me. Please continue praying that she will continue gaining. We mix the formula with quite a bit extra for the increased calories (per dr.'s orders) and she's been eating regular food fairly well. She's never been a big eater, but she also has a lot of distractions. :) He also increased her medications a tiny bit. We don't go back for FOUR MORE WEEKS!!!! YAY!!!!
(Also, if anyone has questions, or if something I wrote doesn't make sense I don't mind clarifying)

9 months old

 

Her top tooth is coming in and since this picture was taken the second one has broken through.

Six weeks post-op

Just a quick update. Susannah was six weeks post-op on March 12th. She's done well at all of her follow-up appointments. Our last checkup last week at the cardiologist she had gained almost half a pound from three weeks before that. He increased her calories again and said to feed her more regular food, so we've been working on that. He's not thrilled with her weight gain, but she is following a new curve upward, so he was okay with not doing anything drastic (aka feeding tubes) at this point. He really wants her to "catch up" to where she should be, but I don't see that happening. My other kids were between 18months to 2 years before they ended up back on the curve that they started on, so I imagine it'll take her a little longer to "catch up" than it did them. He also said we didn't have to come for FOUR WEEKS!!! That's the longest we'll have had between cardiologist visits since November! And another thing off topic, we don't have any appointments of any kind this week or next!!!! Such a nice little break!! I should write another post about that someday. Back to Susannah, her little heart is doing ok. The tricuspid regurgitation is mild to moderate, before the PA banding it was moderate to severe. The PDA closure is leaking a tiny bit, he said it wasn't uncommon for that to happen. He didn't seem concerned about it. She was in heart block this visit. She seems to tolerate it fine. She's started crawling and pulling up on things. She is literally all over the entire house. She will go and find her big brothers and sister wherever they are and play with them. She doesn't show any symptoms of tiring out or anything. She still doesn't eat a whole lot, so that is still a concern. She doesn't tire out, she's just done and not interested. He increased her Enalapril the visit before this one, but the Lasix he's kept the same. We've discontinued the Motrin. She was on that for four weeks post-op for inflammation, and we're past that and there weren't any effusions on the ECHO so he was good with that! They're saying 6 months to a year until her ventricle is ready for the big surgery. It depends on how fast she grows and how well her ventricle responds to the band and strengthens.  She's a happy little girl! We're so thankful for her!

before surgery (6 1/2 mon. old)

 

6 weeks post-op (8 months old)

 Happily watching big brothers and sister playing outside!!

The Rest of the Story....

Well, I was trying to write what all happened during our hospital stay, but the words aren't flowing, so I think I'll go timeline style. First off: WE MADE IT THROUGH OUR FIRST SURGERY!!!!

Wednesday
3:00-3:30am fed Susannah
6:00am got to the hospital
7:40am passed her off to the PA. Susannah was very happy and friendly with everyone that talked to her. She didn't cry when we handed her to the PA, which I was glad of, but kind of sad because she had no idea what was coming.
9:30am update that they were just beginning the surgery. Apparently it took quite a while to start lines. We counted at least 28 sticks where they had tried to start iv's. She had a central line in her neck, an arterial line in her wrist, and a regular IV in her foot.
11-11:30am we called and they were closing her up, so we waited for the surgeon to finish and come talk to us.
12:30pm the surgeon came and told us everything went great! They did a TEE (transesophageal echocardiogram) during surgery while they put on the PA band. When the surgeon put the band on, he said they saw her septum move because of the increased pressure. He thought it was too good to be true, so he took it off and put it on again and it did the same thing. He thinks he got it on there perfectly. Tight enough to help and make a difference, but loose enough to allow for growth and further tightening. He also closed off the PDA.
1:00pm the surgeon took us back to the PICU to see Susannah and left us with the team there. The respiratory therapist suctioned her a few time and we waited for her to wake up enough so that they could extubate her. She had a breathing tube, central line, arterial line, IV line, Foley catheter, temporary pacing wire, O2 sensor on her forehead, one on her back, EKG lines, and a pulse ox. on her toe.
2:00pm Around 2 they took out the breathing tube and she did fine with that. She was still pretty out of it due to sedation and pain medicine. She "groaned" all evening and never seemed like she was sleeping peacefully. Her nurse was wonderful and was very careful with what medicine she gave her. Every time she gave her something she watched Susannah's respirations very carefully to make sure they didn't drop any. She tried a few different things trying to help her stay calm and rest. They let her eat some that night and she actually did really well with it. The nurse also let me hold her a few times. It felt so good to have her in my arms!
7:00pm was shift change and the night nurse kind of concerned me because as soon as she came on she was trying to get the doctor to ok some different medicines to give her to help control her pain. Susannah was still somewhat sedated and on several different pain medicine, so while she didn't seem peaceful, I don't know that she was uncomfortable (if that makes sense).
They also had a temporary pacing wire in that came out through her belly with an external pacemaker at the end of her bed in case they needed it.

Thursday:
3a.m. Anyways, the nurse ended up giving her Ativan at some point and at around 3a.m. her respirations started dropping and they had to bag her and give her a little Narcan to reverse some of the pain meds. Thankfully those things worked and they didn't have to intubate again. However, they took her blood gases and she was a little acidotic. Her hematocrit was also low, so they gave her some blood. They gave her one syringe pretty quick and then the second one they let go in slowly (They're big syringes that go into a IV pump). After all of that she didn't groan any more and it seemed like she was sleeping peacefully.
Susannah was still pretty out of it for most of the day. She ate well in the morning, but later in the day she quit eating. She had two blisters on the bottom of her tongue that I think were rubbing on her two bottom teeth while she tried to suck. Her belly was fat and she was swollen all over, I guess just from the fluids and such. They were giving her Lasix to help the fluids move out, but it seemed to go slowly.
They stopped all sedation Thursday evening, so it was a rough night keeping her calm and peaceful.
Mom and Dad came up to see her Thursday evening while Melissa watched the kids.

Friday:
It was a rough night with Susannah being awake a lot. She wouldn't eat well. I finally had one of the nurses look in her mouth and she had a buildup of white stuff on the back of her tongue, so they started treating her for thrush. She would just chew on her bottle, she wouldn't swallow or suck. I think her mouth and throat were just too sore. :( She had a better day today and even played with a couple toys. They removed all the extra lines and such. Her IV in her foot and become unusable due to her rubbing her feet against each other. All she had left was the Central line in her neck and then the heart monitors and Oxygen sensor. It was much easier to hold her with fewer lines. It didn't seem to bother her with us picking her up or moving her around. She was so sweet to hold. She just laid their so still and calm. Usually she's wiggling and trying to see everything. :) Mom and Dad brought the kids up to see us today. They weren't allowed in the PICU because it's flu season and we didn't get the flu shot, but Leigh and I got to go to a family room and visit with them for a little while. It was good to see them!

Saturday:
After a few doses of the Nystatin, and the blisters on the bottom of Susannah's tongue going away, she did a little better eating today. By Saturday, however, she was so mad with getting medicine stuck in her mouth, it was a fight to get her to take her bottle. If anything liquid touched her mouth she clamped her jaw together and squished her little lips shut and refused to open her mouth. She's a little bit stubborn when she wants to be. She started smiling at us today and had a fairly normal day. She played a little bit and started reaching over to one side. They brought a mobile for her to look at and she was so excited about it, smiling and reaching for it as it moved! It was so cute! She had a bit of tachypnea with stomach breathing that the doctor noticed and we talked about. She has "episodes" of that at home, so to me it was "normal." They ordered a chest x-ray for Sunday to make sure it wasn't due to fluid in her lungs or anything like that.

Sunday:
The chest x-ray was clear, so we were allowed to go home. Yay!! She slept really well through the night Sat. night. She only woke up for her medicines to be given. It took the nurse a little while to get everything together. Her other patient was very needy (it was a teeny baby next door). So we didn't get home until about 5:30pm. We had to stop at the pharmacy to get all the meds we needed. She went home on Lasix and Enalapril (she's been on both of these for several months) and then they added Nystatin for the thrush, and Motrin round the clock for pain and inflammation.

Then until now:
Susannah is doing well. She's still not back to 100 percent but she moves a little bit more every day. Her 1 week after surgery cardiologist appointment was this past Wednesday. It went well. He was thrilled with her weight gain. She gained 13 ounces in a week in a half. We go back in two weeks for a weight check, so hopefully it's not a fluke! She's eating just a little bit more than she had been before her surgery. She hadn't gained anything in about 6 weeks. He said there's no leakage from the PDA ligation, so that's good. There's still a little bit of a pericardial effusion that should go away. There was a little bit there on the Sat. before we were discharged which was the last ECHO they did in the hospital. They sent us home with an increased dosage of Lasix to help it go away, but I don't guess it changed. He sounded like it should go away soon and didn't seem worried about it. The tricuspid valve is still leaking a moderate amount. He's hoping maybe it will get a little better over time with the banding helping to keep that ventricle smaller. Overall he seemed pleased with how everything looked.

Her first two days in the hospital were two of the longest days of my life I think. I didn't know how in the world I would ever be able to do this again. But by the time we left, it was as if it wasn't so bad. The unknown is hard to think about, and I thought the roller coaster emotions were over, but whew! I felt rolled right over! I don't know how people go through things like this without God. If I didn't believe 100 percent that God knows what's best and is in control I think I would just quit! I am so thankful that God knows what the future holds and I'll do my best to not worry about what may or may not happen. I am so thankful for what He has already done for us and in our lives and pray others can see Him through us. While I do have days that I cry for what she will have to go through (it's scary), I have an overwhelming sense of peace and  gratitude to God for giving her to us. She is a precious little girl and I feel so blessed that we were chosen to be her parents. I hope we're up to the challenge! :)

Plans Change.....

At least in our house they do!!
After Susannah's cardiologist visit in December we were waiting for a phone call to schedule a surgery date to have her PDA closed. Fairly simplistic procedure with possibly an overnight stay.
Last Thursday, I got a phone call from the cardiologist saying after he had met with the heart team and surgeons at the hospital, they were recommending doing a Pulmonary Artery Band (PAB) along with closing the PDA. Many questions ensued and a meeting put in place for this past Wednesday (which was the day of our regular appointment).
After almost a week of research, questions, pondering, praying, etc, the decision has been made to go ahead and have the PDA closed and the PA band done at the same time. We have a surgical consult schedule for late next week and will get to meet the surgeon.
That's the short version. :)

More explanation: Susannah has developed a leaky tricuspid valve and apparently it is concerning enough to the surgeons that they are recommending the Pulmonary Artery band to "train" her "left" ventricle to become stronger so that in a few months to a few years we will have the option to do a Double Switch Operation (DSO) vs. going straight to a heart transplant.
From what I have found from research and asking questions, etc, the leaky tricuspid valve is a significant indicator that the right ventricle is not doing as well as we would have hoped. Continuing on like this would mean at some point the right ventricle will most likely fail and it would be sooner rather than later, which would then put us at heart transplant. If we do the PA band and it works, we would have the option of doing a DSO. The PA band is found to work better the younger a person is when it is put in. It was at three months that they told us Susannah's valve was mild to moderately leaking, so in some ways I feel as if we're "behind" on the PA band. Some people say the optimum time for doing the DSO is 2-3 years old. It is not done on adults and some say the person has to be younger than 15. It will continue to be a wait and see approach and a careful analysis and watching from the cardiologist and surgeons. The "left" ventricle would have to be "trained" sufficiently before doing a DSO and I think it's wait and see how long that takes for Susannah. It sounds like everyone's different in how their heart responds and works. We're hoping that getting the PDA closed will help a significant amount, although the cardiologist didn't sound too sure that it would be enough, to help relieve some of the workload of Susannah's "right" ventricle. He also said having the PA band done may help the right ventricle as well because it would expand the Left ventricle and (in my words): push against the right side and help support it, thereby helping it be more efficient.
In my opinion it sounds like a lot of it is a guessing game as to what may or may not help, it depends on how Susannah's heart responds, but overall, we agree with the cardiologist and surgeons that this is a reasonable approach and the best decision regarding future options. (They also might go ahead and put in pacing wires for a pacemaker for when she needs one.)


Wednesday's regular stuff update: Susannah was in heart block again this whole visit. She did not gain any weight from three weeks ago - which greatly concerns him. He increased her Enalapril and increased her calories. He talked about the possibility of tube feeding - ick! I'm praying that after her surgery she'll really pick up eating. She acts like she could care less about eating. It doesn't seem that she's tiring out, she just quits and doesn't care, holds her mouth shut and flat out refuses! :)

Additional links and info (from an email I sent my Dad):

Susannah has Congenitally corrected transposition of the great arteries (also called L-TGA, or Levo-TGA) . It's different than Transposition of the great arteries (also known as D-TGA, or dextro-TGA). She also has Dextrocardia, which isn't a problem other than the idetifying right from left. She also has complete heart block, which can be caused from damage to the AV node during heart surgeries.  She also has a PDA(patent ductus arteriosus) that has gotten larger, and she also has developed a Leaky Tricuspid Valve.

They're talking do a PAB (Pulmonary artery band) to increase the work load of the "left" ventricle to "train" it for the option of doing a double switch operation (DSO) at some point.
These were some different articles and research information that I found that might make it more clear and be helpful.???... I put the year they were published beside them.

http://www.ncbi.nlm.nih.gov/pubmed/23820627     (2013)
http://www.ncbi.nlm.nih.gov/pubmed/12658191      (2003)
http://www.ncbi.nlm.nih.gov/pubmed/9755003       (1998)
http://eurheartj.oxfordjournals.org/content/18/9/1470    (1997)
http://ejcts.oxfordjournals.org/content/early/2012/05/02/ejcts.ezs118.full       (2012)

http://en.wikipedia.org/wiki/Levo-Transposition_of_the_great_arteries

http://www.chop.edu/service/cardiac-center/heart-conditions/congenitally-corrected-transposition-of-the-great-arteries.html#treatment
"Double switch operation. Surgeons create a conduit to shunt the blood from one side of the heart to the other. The heart's major arteries are also detached and reconnected. This corrects the circulation so that the heart's left side serves the body and the right side serves the lungs. This is a very complex operation and is usually performed in infants and children. The double switch procedure is very rarely used in adults."


http://www.achaheart.org/resources/for-patients/health-information/cctga.aspx
How common is CCTGA?
CCTGA is a rare heart defect. 0.5%-1% of all those with heart defects are estimated to have CCTGA. This means there are about 5,000 – 10,000 people in the United States with CCTGA. These are rough estimates based on birth rates.

Why a leaky tricuspid valve is a problem
People with CCTGA often develop leakage in their tricuspid valve. In CCTGA, this valve is located between the atria and the ventricle on the left side of the heart. This valve has to stay shut against the heart's strongest push out to the body. In a normal heart, this is the location of the mitral valve. The tricuspid valve is not designed for this additional workload. In addition, many people with CCTGA also have abnormalities in this tricuspid valve. This also makes this valve more prone to leakage. Over time, tricuspid valve leakage ("insufficiency") can grow worse. There are two possible reasons why this might occur. One is the excess workload. The other is that the ventricle itself is stretching and weakening. This stretching can cause the valve to leak. These two reasons can be connected, since too much workload can cause the ventricle to stretch and weaken.
In some people with CCTGA, replacement of the tricuspid valve is recommended. When done early, replacing this valve may improve symptoms and protect or restore heart function. However, valve replacement can only be done if the heart function is only mildly weakened. f the systemic right ventricle is too weak, valve replacement is no longer an option. When done late, tricuspid valve replacement has been linked to high mortality. Valve replacement in CCTGA should only be done at centers that specialize in ACHD surgery.

What are the long-term outcomes of the double-switch procedure?
The oldest people to have undergone a double-switch procedure are now in their twenties. This means we do not yet know what the long-term outcomes will be. Short-term results are encouraging. If you had a double-switch procedure as a child, you no longer have a systemic right ventricle. Many problems discussed in this section will not apply to your anatomy. However, you still are prone to the electrical problems discussed below. Surgery cannot repair the heart’s "wiring". The surgery itself may also cause additional problems. Surgical scarring can cause future rhythm problems. Conduits may become blocked and need re-operation. It is important to remember that the double-switch is not a "cure" for CCTGA. Everyone born with CCTGA should continue to receive regular care at a specialized adult congenital heart clinic.

http://www.achaheart.org/Portals/0/pdf/Library%20Education/CCTGA.pdf

Baby update!

November visit: PDA was larger, Dr thinks it might be more significant than he originally thought. Weight gain still not as much as he would like. Looked at how much she was eating a day and said her intake is not enough to gain weight, so he upped her calories again and started her on Lasix. Had a weight check a week later and it was OK.

December visit: Weight gain was ok, but she had dropped off on her feeding and was eating even less than the previous month. He's concerned about the PDA causing increased pressure and other things and causing her heart to work too hard. Started her on Enalapril which is a blood pressure medicine to help decrease the pressure in her heart. Presented her case to the pediatric heart surgeons at Joe DiMaggio children's hospital to see if they recommended surgery now or later. Heard back yesterday and they think it would be beneficial for her to go ahead and have the PDA closed sooner rather than later. They're supposed to call sometime next week to schedule a time for January. They have a smaller device that they're using now on little ones that they plan to use for her as well as a smaller catheter that is more flexible. The dr. said that would be better for her due to her dextrocardia and abnormal heart pathways. The hospital doesn't get those until January, but he sounded like that's what they would be using. He thought it would be early January, but depending on scheduling and such I wonder if it would be mid to late January before her surgery would be scheduled. They would do it like a heart cath by threading a catheter up the femoral artery vs. going through her chest. He says it would be outpatient, but with her being so young, we would probably stay overnight. She was also in heart block the whole visit this time with her HR in the 70's.


From our perspective, Susannah is growing way too fast! She does not seem to be in any distress at all and is a very happy and smiley baby! She is close to sitting up on her own and gets up to her hands and knees and rocks back and forth. It won't be long before she'll be crawling! Her first tooth poked through today!! She's still doing pretty well sleeping through the night. She has started getting up once during the night either at 3am or 6am, but it's not every night.

 5 months old!!

What was supposed to be a short update :)

Susannah had a cardiologist checkup this week and four weeks ago. The one four weeks ago was fine, no noticeable change on the ECHO. Her heart rate was 90's for the EKG and then 120's for her Echo. She slept through the echo which she had done so far. She has a tiny ASD and a tiny PDA which he's not concerned about right now. He said her weight gain wasn't as well as they'd like so come back in four weeks which brings us to last week.
The EKG was fine, there is some dropping in and out of the higher heart rate from the WPW syndrome, but her "escape" rhythm is usually in the 80-90's which is "good" for heart block, so he's fine with that. The Echo went all right. She cried through a lot of it this time, which was the first time for that. I knew it would come sooner or later, but was hoping for later! :) She has to be still and is a little restrained, which she doesn't like. He still said her weight gain wasn't as much as they would like, which to me is "Same song, FIFTH verse a little bit louder and a little bit worse!" Every doctor I've ever had for all the kids has been worried about their weight gain. In Susannah's case it could be due to her heart "exercising" too much and thus burning too many calories causing slow weight gain. The pediatrician has been pleased with her weight gain thus far. Their scales differ and I've only been keeping track of the pediatricians weights, so I need to get the Cardiologists weights and compare them. That's beside the point. Susannah has been struggling a little with taking her bottles where she will suck hard for a few sucks and then push it out and breathe, so we were a little concerned and mentioned it to him because he always asks about that. He asked if she was sweating while doing this and she isn't, so he didn't think it was because she was working too hard. I think based on our concern and her "poor" weight gain (I left a little confused), he wanted to start her on a diuretic. I've been carrying the weight charts of the other kids in my diaper bag in case I needed to plead my case, so I offered to show them to him, so he would believe me that they've all been in the low percentile. I'm very hesitant to start her on medication when it's not obvious in any way that her heart is struggling, and I'm not convinced the "poor" weight gain is not genetic. From what I see on the growth curve that he shows me she looks perfectly normal (for my children) and is gaining at a fairly consistent rate. He had mentioned increasing caloric intake before, so I asked him about that and he wrote me a prescription for Human  Milk fortifier and gave me a sheet on how to increase formula calories. We're supposed to go back in four weeks for a weight check. I looked into the Human milk fortifier, and it's rather expensive, so I don't think I'll be getting that since I'm not convinced she needs it. I might do the formula increase, but she only gets maybe 2-4 ounces a day of formula, so I'm not sure it'll matter all that much. Anyways, prayers would be greatly appreciated for wisdom on how much to push back with the weight thing. I don't want to do anything that would cause her heart harm, but at the same time I don't want to do something that's not necessary just because my kids have a lower weight gain than most. The rest of the visit was fine. The ASD and PDA are still there (he's hoping they'll eventually close on their own). The only new thing was that one of the valves has mild to moderate leaking. It's had a little bit of leaking before that he's mentioned, but he's never called it mild to moderate. I'm guessing it would be the valve that is with her right ventricle that is functioning as the left ventricle (because it's all mixed up) because of the higher pressure. He told us that at the very end and I was a little frustrated and confused by that point that I didn't ask questions.
Since that visit, Leigh has found that when she has a room temperature bottle (or warm) she doesn't do the breathing funny thing like she was when she eats. So now we're thinking maybe she doesn't take it as fast and easy because it's too cold! Will wait a few more days before we decide for sure! :)
She's growing fast and is a really good baby! She's such a sweetheart. She is rolling over now, smiling at all her siblings, "talking", almost giggling, sucks her thumb to sleep, sleeping through the night (which none of the others did until they were about a year old), and very interested in the world around her!

 Three months old

 

 

All the munchkins together

....Continuation

We got to go home on Saturday. We went home with a bili-blanket, that we were supposed to put on her for 12 hours a day. We tried to put it on her at night while she slept and it worked out all right. The neonatologist wanted us to get a bili-check on Sunday and see the pediatrician on Monday. I called my pediatricians office to see if they did bili-checks and if they were open on Sunday. They were open on Sundays, and the person on the phone told me they did bili-checks. So we get there Sunday and went ahead with the checkup so we wouldn't have to go Monday, too, and the Dr told me that they don't do bili checks, but her color looked really good and just to tell the neonatologist that. And yes, the Neonatologist called in the afternoon to make sure I had taken my baby to the Dr, and she was fine with what the Dr. said about the bilirubin, which I was glad of, otherwise we would have had to go back to the hospital for a bili-check. We had a follow-up with the Pediatrician on that Thursday, July 11, and it went well. She's already mentioned that we'll follow Susannah's weight closely because sometimes babies with heart issues need a higher calorie intake because they burn more calories while they eat and such. We've kind of stuck with the schedule and such that the NICU had her on with giving her breastmilk and supplementing some with formula. She's mostly getting breastmilk, but she does get a little formula, too. I've been writing it down because all her doctors ask how much she's eating at a feeding, and I have no idea. We've nursed a little bit, but plan to work on it more once school starts and the doctors visits slow down. It makes me nervous that they're going to follow her weight closely because my other kids were all slow gainers and were always in the 5-10th percentile if not below. So far she's doing great and was 6pounds 15 ounces at her two week checkup.
After the Pediatricians visit on Thursday we had a Cardiologist appointment. It went really well, they did an EKG and a ultrasound of Susannah's heart. When they did the EKG I asked the lady if it mattered which side they put the leads on since Susannah has Dextrocardia (which is her heart facing the right instead of the left), so she did an EKG with the leads on the left and then one with them on the right. After they do the EKG, they do the ultrasound and Susannah slept through the whole thing, which is usually 30min. to an hour! They had been a little confused about her heart rate because the first day she ran in the 80's-90's and then after that she had a normal heart rate, but it was obvious on the EKG's and U/S they did in the hospital that she was still in heart block. Based on the EKG they did in the office where they put the leads on the right side, the Dr. was able to figure out what was going on. He came in while the U/S tech was doing the ultrasound and said she has WPW syndrome, it's usually bad, but for her it's really good, and then he left so they could finish the U/S. He was so excited that he figured it out and that it was really good for Susannah. It was kind of funny. So Susannah also has Wolff-Parkinson-White (WPW) Syndrome, which is basically the heart forms an accessory pathway. In a normal heart it can cause tachycardia, but for Susannah, it allows her to have a normal heart rate, which is good. It can drop in and out, so he sent us home with a Holter monitor for 24 hours to see how often it drops out and to see how her heart does under stress (ex. eating/crying). He called a couple days after we dropped it off and said out of the over 200,000 heart beats it only skipped a total of about 10 beats, which is SUPER! He's not concerned with it dropping out too much because her "backup" rhythm is high (80's) for heart block. He was also pleased with the Holter test because it showed that her heart rate at one point got up to 188 which shows that it was compensating for a "stressful" activity.
We have since had another pediatrician visit and another cardiologist visit and they both went well. We go back this week to the pediatrician for a 4 week checkup and we go back to the cardiologist in 2 1/2 weeks (three weeks from the last checkup). I really like her pediatrician. She's very thorough and seems on top of things
The last test we were waiting to hear back from was the chromosome test from the geneticist. I was supposed to follow-up with him this past Wed., so I called and had to leave a message. He called Thurs. afternoon to let us know that all of Susannah's chromosomes are NORMAL! That was good news.
So we're at home, loving on our sweet little blessing. The kids absolutely love her and so far she's been a really good baby. Hopefully that will continue. :) Mom and Dad have been down for about three weeks and have been a tremendous blessing and help to us all. Dad and Leigh finally got my cabinets hung for my classroom, so it's coming together. I'll have to get pictures up one day. Itching to get school started and into some sort of routine. We had a special time the weekend Susannah was born Rachel and Mark were in Orlando, so they came down and Deborah got a personal day with July 4th and she came down, so they all got to see her little bitty. She's Mark's first official niece. :) He was really cute holding her and even reserved a feeding time! Deborah gets to come down this week for her vacation and then she and Rachel are coming again in September, I think. FUN, fun, fun!!
Thank you so much to everyone who have been praying for us and Susannah!! We feel overwhelmed and undeserving of God's graciousness to us. Although the future is unknown, we know God's in control and are resting in Him.

 with the Holter monitor



 Josiah and Timothy playing with Susannah.

Yes, she did get whacked in the head once or twice while Timothy was cheesing.

She just cried for a second, and then watched them some more.

Better late than never????

Sorry it's been so long since I've updated. We got Susannah's last test results back yesterday, but first I'm going to backtrack a bit. The last update before Susannah was born was from our Dr's visit on June 21st. On Thursday, June 27th we went to the high risk doctor and the baby's heart rate was normal and it had a normal looking pattern. The doctor was so excited for us, because then we wouldn't have to have a C-section if the baby's heart rate was high. He still wanted to go ahead and induce on the same day that the section was schedule for since the baby was doing well and her heart rate was high. He called the Cardiologist to let them know and they had us come in the next day on Friday. The cardiologist was very puzzled because heart block is not supposed to just go away, but what we were seeing on the ultrasound showed that her heart was beating in a normal rhythm and at a good rate. So we pondered the news over the weekend and I tried not to get my hopes up too high in case we went in on Wed. to deliver and her heart rate was low I knew they would go back to doing a C-section. On Monday, I went in for my regular OB visit and the nurse tried to find the baby's heartbeat. She listened to something and got a rate, but I couldn't tell what she heard. She told the Dr. that the baby's heart rate was in the 80's and was the same as mine. (My heart rate usually runs in the 90's) So my OB called the high risk Dr. and the high risk Dr. wanted him to take the baby's heart rate and then take my heart rate to make sure our baby was still alive. (Yes, the OB told me this.) Well, I knew she was fine because she had been wiggling the whole time we were there. First, he had to find a watch with a second hand from one of the nurses, and he took the baby's heart rate, which was 80 and my heart rate which was 120. So he let the High-risk Dr. know and he said just stick with the C-section on Wed. and be done with it. :) That was our entertaining weekend before our sweet baby girl was born!

The last post was about Susannah's birth. She did great. The C-section wasn't as bad as I expected and the recovery's gone pretty well. It kind of tickled me because all these people prep you and get you ready for the C-section, introduce themselves to you and then you get in the room for the procedure and you can't recognize a single one because they have caps and masks on. They were all really sweet, the anesthesiologist(?) was a student and she did a great job, she was the one who let me know what the doctor was doing. I had her on my right and another lady on my left, I don't know who she was, and I have no idea where Leigh was. I asked my doctor if he could take out some fat, so he showed me a little piece he took out! :) At the very end he showed me another little piece.  It was quite entertaining. I got to watch them weigh Susannah and clean her up a little, and they brought her to me for a few seconds before they took her to the NICU. They had told us it could be up to an hour before Leigh could go see her, but they came back pretty quick and let him go to her. He took pictures for me and came back and showed them to me while they were still sewing me up. They put dissolvable staples in me (which I didn't know they made) and glued me shut! (sorry if that's TMI) I was fascinated. I found out I DO NOT like morphine. It made me itch for three days and I couldn't sit up straight for several hours because it made my head feel funny. They offered to give me Benadryl, but I didn't want anything else to make my head feel fuzzy because I wanted to go see my baby, so I refused to take it. I finally got to go see Susannah at 4:00a.m. the next morning. It was quite a trek from the 8th floor down to the NICU on the 2nd floor. We tried to make it to all of her feedings. The first nurse was really nice and let me try to nurse her for as long as I needed, but most of the other ones wanted her to eat so much within a certain time, so that it didn't mess up her "schedule," so I always felt kind of rushed. It was a little frustrating, especially when they keep telling you if she doesn't eat so much, then we'll have to put her back on IV fluids. There was one nurse that didn't even let the kids touch her when they visited because she was sleeping. I wanted to remind them that Susannah was in the NICU for OBSERVATION, not treatment, and with four siblings at home she's going to be disturbed, and I don't do the whole schedule thing where they can only eat every three hours, I do more of a routine thing. And a lot of breastfed babies usually start out eating between 1-2 hours, if for nothing else just to get the milk to come in. If I hadn't of had a C-section they would have probably kicked me out, because I would have annoyed them to no end. They have "touch times" every three hours where they do their assessment, change the diaper, and take the temperature and then they feed them and then they have to sleep until the next "touch time." It makes sense and works well for preemies and sick babies I'm sure, but it was a little frustrating to feel like I needed permission to pick my baby up and feed her. We made it and I knew that it would probably annoy me, so I was prepared. It was so good to get home though and let the kids hold her and touch her as much as they wanted whether she was sleeping or not! :)

Well, since this is getting long I'm going to do a
to be continued.........

Hopefully I'll get to it tomorrow...

Update and Decisions

Last Friday was quite an entertaining day! We had our high-risk doctors visit first thing in the morning to recheck the fluid that was around the baby's heart. It was still there and the doctor was concerned about it so he called the Cardiologist to see what he wanted to do. While we were still there the High-risk doctor said that if we were 38 weeks along it would be a cut and dry decision to go and deliver. Before I even left the office the cardiologist office called to make an appointment to fit me in later in the afternoon. So I left the office under the impression that this was not good and we would possibly be having a baby sooner rather than later! I am so glad I waited to call people (mostly my parents) until after the cardiologist appointment because I would have had them coming down the next day. :) At the cardiologist they did the ultrasound of the baby's heart and they weren't finding any pockets of fluid. There is a very thin layer of fluid between the baby's heart and the outside lining (pericardial lining???) and the doctor explained it that when the baby's heart contracts and you take a still picture of it (which is what the high-risk doctor does) it looks like a pocket of fluid has built up, but as the heart expands it spreads it out and everything they were seeing at the Cardiologist was within normal limits of what could possibly be there. It didn't sound like there should be fluid there, but apparently there is a small amount that is considered to be normal. So he was greatly relieved and said we were good to go until I went into labor. So I went from thinking we were having a baby within a week to having 3 1/2 plus weeks left. It was a rather crazy day! I had Leigh meet me over there because I didn't want to have to decide when to have this baby by myself, but it turned out to be unnecessary, which was good. So we went to a BBQ restaurant for dinner since our anniversary was the next day. It was a nice relaxing end to our hectic day.

Our OB visit was Tuesday, and it went well. Leigh went with me because he hadn't met the dr. before and we went planning to ask him to make a decision regarding the delivery. The cardiologist was still saying natural was fine, but the high-risk doctor was recommending a cesarean. So our OB looked things over and he called the high-risk doctor and due to concerns about the baby's heart rate dropping during labor and delivery, and not getting enough oxygen to the brain, he also recommended a cesarean.

So, our C-section is scheduled for July 3rd (39 weeks) at 9:30 a.m. I don't really want a C-section, but I am comfortable with the decision and understand the concerns involved, etc. It's also kind of nice to have an end date. I've gone past my due date with all the others and that last week seems to last forever! :)

We went to the high-risk doctor this morning and everything looked the same. He said things were stable and we'd see him next week.

While we were at the high-risk doctor, he apologized for having us come in every week, and mentioned that I've probably been to the doctor more for this little girls pregnancy than I was with all the others combined. I agreed that I probably have. After thinking back over the past 17/18 weeks and all the ups and downs and puzzlings and questions and such, I feel very thankful for our baby and the problems that she has. I know it's still wait and see how she does once she's born, but it could be much, much worse. Our ups and downs have been minor compared to some of the life or death ups and downs that a lot of couples experience with their little ones along with constant monitoring, hospitalizations, bedrest, etc. I'm also very thankful for both the doctors that have been keeping a close eye on our baby. The high-risk doctor is a little over cautious I think, but I would much rather that, than him not call the cardiologist and something be really wrong.

God has been so good to us, and we feel very blessed.

Looking forward to meeting our little girl in TWELVE days!!!

Monday Update

At our high-risk doctor visit on Monday, he just did a biophysical profile and checked the little bit of fluid that was around the baby's heart. It had stayed the same, it hadn't increased or anything, so that was good. It actually measured a teensy bit less. Her breathing movements, amniotic fluid, etc were all good, so she seems to be tolerating everything just fine!! It was a good visit and quick! We go back to him on Friday and if everything looks the same, it'll just be weekly visits like planned before the fluid thing. That's all!! :)

"Quick" update

We went to the high risk doctor on Wed, May 29th, and the baby's heart rate was in the 80's and so he wanted us to get into the cardiologist within 48 hrs, so we went to the cardiologist on Thursday and it was confirmed that our baby girl now has Complete Heart Block. We went back to both doctors a week after to see how she was handling the lower heart rate, which was this Thurs. and Friday. At the Cardiologist on Thursday, everything looked good, but on Friday at the high-risk doctor, there was a little bit of fluid around her heart ( which is Not good and can be a sign that she might be going into heart failure, in which case we would deliver early) so we go to see him again on Monday (June10) and then on Friday of this week.  The high-risk doctor also does a Biophysical Profile and she has gotten a perfect score on everything they look at with that - breathing movements, tone, amniotic fluid, and wiggling - so that's good. We will also be seeing the high-risk doctor every week from now on. The cardiologist on Thursday said he was okay with a natural delivery, the high-risk doctor, however, does not seem okay with a natural delivery and thinks we should do a cesarean due to the lower heart rate and the natural heart rate drops that occur in labor and concerns with the baby not getting enough oxygen to the brain during labor and delivery. So we'll see what they decide and hope they end up on the same page, whichever way it is! My OB seems okay to go whichever way the cardiologist and high-risk doctor recommend.
We went on a tour of the Labor and Delivery floors as well as the NICU and PICU at the hospital today, so we have a slight clue of where to go and where everything is located. L&D and the NICU are on the 2nd floor, the PICU is on the 4th floor ( and only certain elevators go there) and postpartum is on the 8th floor!
We're praying the fluid either stays the same or goes away and that she will continue to be stable until it's time for her to be born. Trusting in the fact that God's ways are best and He knows every step of the way.

Latest update

It's been awhile since I updated, but that's just because there's nothing much to say! At the last perinatologist visit the placenta had moved up a little more and so the dr. took me off of restriction. (He had put me on a list of restrictions such as no strenuous activity, no heavy exercise, some light walking should be ok, don't go out of town,for example,the Everglades, and a few other things. Well the weekend before the Dr's visit, my family came down and we went to the Everglades and mom and I moved some heavy boxes and such, so we had already done our running around, so the restrictions weren't really very limiting.) The weekend after the Dr.'s visit we went to the Keys for our church workers retreat, which was fun! So I didn't have to worry about going against Dr.'s orders! I do try very hard to do what the Doctor's say! :)

Yesterday we had our Pediatric Cardiologist checkup, which took forever, but that's normal and he said that the heart arrhythmia/2nd degree heart block (type1) seems to be resolving itself!! Which is very good! They only saw it maybe three times the whole hour of scanning, which is a huge improvement because one of the reasons we were referred to him was because of the arrhythmia which was regularly skipping every fourth beat. Everything else looks the same, they didn't see anything different than what they've been seeing so far, so that's good too. The visits take a while because they do the ultrasound of the baby's heart for about an hour and then the Dr. comes in and goes through every single picture looking at the heart, valves, chambers, veins, etc. and watching all the clips of the blood flow and such. He double checks it each time just to make sure it's all the same and they haven't missed anything. He seems very thorough, which I appreciate. He's going to be presenting her case next week to the neonatologist and surgical team at the hospital so that they're aware of us. He doesn't think that they'll want to do a surgical consult since the baby won't require surgery. We are planning to go on the tour of the maternity floor and the NICU, just so we have a clue of where we'll be and where everything is. We have what should be our last checkup with him scheduled before she's born and then he said they would see her within the first month after she's here!

And for those of you asking, she doesn't have a name yet. :(  We're working on it. We have two middle names that we like, we just have to find a first name.
Names we've eliminated are :
Emily Jr.
DebbieRay
LeighAnn(a)
Christina

Pediatric Cardiologist update

Pediatric Cardiologist update: Leigh was supposed to get to go to this appointment to meet the Dr. and hopefully understand more of what's going on with our baby girl, but when he got home, the van wouldn't start. He very quickly pulled the car over and tried to jump it, but to no avail, so I ended up going alone. I greatly dislike going to the doctor's alone. Anyways, everything they saw was the same, the Dr. didn't think that the baby has a VSD. There was one section of the wall on the ultrasound that kept going in and out, but there wasn't any flow between it, so he thinks it was just the angle at which they were looking. He said they studied the pictures for a long time after I left last time and counted different beats and stuff. She has 2nd degree heart block. I'm not quite sure what this means for her, I think it's still a wait and see type thing. Her heart will beat slower than it should, so it still kind of depends on how she is able to adapt to that along with the other things wrong with her heart.

The dr. didn't know exactly what the immediate birth plan and such would be like as far as rushing her off to the NICU, etc. He thought that as long as she handled everything fine, it would be reasonable for them to only keep her about 24 hrs. in the NICU for observation and to run tests and stuff (EKG and heart ultrasounds specifically, not sure what else)  and then transition her back to the nursery. In the third trimester he presents each case to the neonatologists and other drs. at the hospital and they determine a plan of action. With our little girl, it's different because she won't be needing surgery as far as we know, so our Ped. Card. isn't quite sure what they'll recommend, or how aggressive they'll be. He said several times that her biggest transition would be right after she's born and the blood flow changes to just her heart. So, we're praying that she adjusts well and everything regulates properly. Hopefully he'll have a little more of an idea what to expect at our next appointment.

(Leigh charged the van's battery and it has worked fine since then) :)

Checkups

I finally found a Pediatrician for the kids!! Yes, we've been down here a year and a half and yes, it's been two years since their last checkups (at least the older three). A friend recommended a Ped. and so I thought I would go with him, but she didn't like the lady Ped in the group and there was one other fellow that she said was "ok". We were down here like a month or two and Timothy came down with an obvious ear infection, that kept me and him up the entire night, so I decided he had to go to the Dr. I called to schedule an appt. and the only doctor there was the other fellow. This fellow diagnosed and him and gave me a prescription and we went on our merry way. They did not say to come back for a follow-up in two weeks, like I had been told by our previous doctor, so I didn't bother since we just had temporary insurance. So, about six weeks later we had to go see him again because Timothy had another ear infection! He was put on a stronger antibiotic and he told me if he had another ear infection within a month or two, they would want to put tubes in his ears! I was not very happy especially seeing as how this was T's first ear infection and he was almost a year old! Anyways, somewhere in there I took him for his 18 month checkup. Every appointment I was pestered with getting them all the flu shot and T the hepatitis A shot (which none of the other kids had, and I didn't realize they had added that one) And I waited FOREVER in the room they put you in to see the doctor. For Timothy's18 month checkup (for one child) I was there for over two hours, AND I had made the appointment in the morning, thinking it would be faster. The sick visits I can understand taking a little longer because they fit us in, but a scheduled checkup to take that long seemed ridiculous. So I never took the other kids for their checkups.

The beginning of the year we were at the dentist and they were updating L and E's info. in their system and one of the questions was when their last checkup was. I realized it had been two years and the lady was really nice, so I asked her if she recommended a Ped. She didn't have kids, but she knew a lady that was a Ped that brought her kids to the dentist She went on and on about how nice she was, so she gave me her name and number of the Pediatric group.  I scheduled an appointment for the beginning of March, just to give our insurance time to adjust everything and send us our new cards for the new year etc.
So far I really like her and the receptionist and the nurses! They were so patient with us. I knew it would be a long appointment just due to the fact that there were four being seen and we were new patients and all. I made sure to get there early to fill out paperwork, etc. I ended having to talk to our insurance company and change the kids pediatrician to this new dr., which I had already done in Jan or beginning of Feb because the Dr. office wouldn't let me make an appointment until I had done that. So that was annoying of the ins. company.
They took the kids and weighed and measured them while I finished filling out paperwork, and then they put us in a room and the doctor came in before too long and did checkups on all of them.

Luke is in the 3rd percentile for weight and between the 25-30th for height. He's always been "too skinny" but he made it on the chart! :) He had to get two shots and they did a blood draw, he was not happy about either one of these and almost flat out refused, but we got it done. He passed his hearing screening, and his highlight was that he didn't pass his eye screening and will have to have glasses!

Emily is in the 20th percentile for weight and the 50th percentile for height. She's just a tad lighter and shorter than Luke! She also got a blood draw and got one shot. She was trooper and didn't say a word about any of it. She also failed her eye screening, so they're both scheduled to see an eye doctor in the next few months. She doesn't seem too thrilled with the idea of glasses, but she hasn't said a whole lot about it.

Josiah is in the 10th percentile for weight and 5th percentile for height. He's a shorty I guess. :) I knew he must be on the shorter side because he's 4 1/2 and still wearing size 3 pants. He got a finger stick to check his iron and five shots! Poor baby! He did really well and didn't cry until the last two, which were the ones that burn. :( I figured he was due a lot because he needed his "school" shots. He passed both his eye and hearing screening, so that was good. I wasn't sure they would do a eye screening for him, so I'm glad they did.

Timothy is in the 25th percentile for weight and the 40th for height. He got a finger stick and one shot. He did a good job and only cried a little.

I was glad they did the hearing and eye screening. I wasn't sure that they would because lots of times those are done at school. The dr. was very kind and patient and asked about any concerns or questions with each child. She was also very thorough. The three older kids also had to leave a urine sample, which was a first for us, so they got lectured (from mommy) about how we DO NOT EVER do this at home. :)

Our whole appointment took us three hours, which I thought was pretty good seeing as how we had so much to do! We didn't sit for very long between activities so that was nice! Overall it was a very positivie experience. I don't think I made the checkout lady very happy. She wanted to schedule a 2 1/2 year checkup for Timothy. I declined seeing as how he turns 2 1/2 in three months, I didn't think it was necessary. Oh, well! So, YAY, they have been declared healthy and caught up on everything for another year. And the doctor told me I am blessed to have four seemingly happy and healthy children with which I wholeheartedly agree!!!!