We left monday afternoon and headed back over to Seattle for Teagan's scheduled hand surgery on Tues. We arrived at Children's hospital Tues. morning around 8:45 and checked in to the surgery clinic. By 10am we were meeting with anesthesia who told us that they would have to admit us for atleast one night because Teagan is a 'single ventricle' baby and they wanted to monitor her after the surgery. We were not prepared for this at all and I was so upset at the thought of being readmitted to the hospital after we'd just left. (They had previously told us that it was a same day procedure) Then the plastic surgeons came in to go over the procedure with us and they asked to see her hand. When they looked at her wrist, the dr. said "well that doesn't look bad enough to put her through surgery.." Trent and I were a little confused and I asked if that meant we were going home. The dr. said that he'd want to follow up in a couple weeks, but for now we could hold off on the surgery! So we packed our things back up and came back home! It was a little frustrating having to drive over there for nothing, but I was just glad that they didn't have to mess with Teagan any more! Today is wed. and we're all back home and resting. Teagan has her first appointment this afternoon with the cardiologist here in town and I'm anxious to see how she is doing! She is sleeping better at night lately and she is even starting to nurse a little bit in between her tube feedings! It will still be awhile before we can take out the feeding tube, but she's on her way!
We're finally home!! Many of you probably guessed after not seeing any recent posts that we made it home- and are overwhelmed! We were released thursday afternoon after 33 days in the hospital! Trent and I left Seattle around 3:30 and arrived home at 11:00pm! (normally this is a 3 1/2 hour drive) We ended up feeding her 3 times and stopping to give meds twice while driving. We also had to pull over because she was crying and we couldn't see if she was ok... (trent and I were driving separately, I was alone in the car with her.) Getting in a 'routine' has been a challenge these last few days and Trent and I are exhausted! Teagan eats every three hours via her feeding tube/pump and it takes 1 1/2 hours to feed her. So she is eating every hour and a half right now! (If she takes her feeds any faster she usually throws up :( She also gets meds at 8, 12, 2, 4, 8 and 10! Teag is really fussy on and off pretty much the whole day and its really frustrating to not be able to help her. We're not sure if she's just sore, or if its her hand, gas, morphine withdrawals... etc.. We joke that babies need to have a little indicator on their forhead that says 'poopy' or 'my hand hurts', life would be much easier! Overall though its just good to be home and we're confident that everything will get easier as each day passes. Teagan is scheduled to go back to Children's hospital for hand surgery this tuesday to remove the rest of the infection in her hand from the iv infiltrate. They've told us that it should be a same day procedure, so we're praying that everything goes well and we can come back home for good! Here are a few pictures of us leaving the hospital Thursday!
So the new medicine is working like the dr.'s wanted it to, and we haven't seen any more of those 'svt' rhythms so far! They will review her charts in the morning and let us know, but we could be possibly leaving tommorrow! Teagan's hand is still a big concern though. Today they went ahead and did a small bedside procedure to open up the sore and clean it out. They decided that she will need a minor surgery to take care of it completely and have scheduled that for next tues. (so frustrating!) So even if we go home in the next few days, we will be back on mon./tues. for the procedure. Teag is also having trouble keeping some of her feeds down when they give them to her at an increased rate. So we'll have to take it slow when we go home, but I know she'll progress so much faster when she can rest in her own bed! (or ours!) I got my lesson with the feeding tube today, and it wasn't as bad as I had imagined. Teag did great and was only mad at me for a few minutes! I also filled her prescriptions here at the pharmacy, and measured and administered her last set for the day. Its quite the schedule that we'll be on once at home, but I think it will all work out!
We had a pretty good day today! The nurses gave Teagan a little oxycodone for her hand last night, so she slept great! This morning her hand looks a little worse, but the dr.'s are convinced that it will get a little bigger, break open, and then begin to heal. (I'll attach a picture for those who are curious) There was talk of us possibly going home tommorrow, but now it looks like it might be thursday or friday? The docs decided to change her heart medicine today to a beta blocker drug that will help to lower her heart rate. So they want to monitor her for a day or two before we're released. Twenty minutes after getting her first dose of the new med. her heart rate dropped from 160's to the 130's/120's! This is more the range where they want it to be, and they're hoping that the lower heart rate reduces the 'svt' runs. Teagan is considerably less fussy today and overall seems more comfortable. I had the chance to give her a bath today- her first one! She cried at first, but then she actually fell asleep in the tub! I took a few pictures afterward and she looks like she has red hair! I also got a lesson in running her feeding tube pump, and learned about her medicines. She will be going home on 6 different meds at first, so theres a pretty complex schedule!
Teagan is one month old today! Which also means we've been here at the hospital for a month, and are really ready to get home! I came back over to Seattle today with Gavin and am taking the night shift with Teag while Trent and Gav get to spend some time together. Teagan is off of all the monitors she was hooked to, and only has the feeding tube now. They want to get us used to not having any monitor to look at for when we go home, but its very nerve wracking! I keep watching to see if her blanket is moving up and down so I know she's breathing! Tommorrow I should get my own feeding tube lesson and learn more about giving her the meds, and setting up a schedule. Her hand where the sore is actually looks worse today and she was irritable and in pain all day. They decided to start antibiotics this evening which she will get 4 times/day to hopefully clear up whats going on. We were hoping to be released sometime this week, but her hand might set us back a little. We'll have to see how much it improves over the next few days.
I headed home today to be with Gavin while Trent remains at the hospital with Teagan. We are still awaiting the news on whether the new heart medicine is helping her with the 'SVT' rhythms she's been having. The cardiologist is supposed to review her weekend rythms tommorrow (monday) and let us know what he thinks. Once we get the ok on her heart being stable, we'll just have to work out our training with her NG tube (feeding tube) and her medicine schedule, and then we should be able to go home! Trent got a lesson in placing the NG tube today, and overall I think it went well. I'm a little anxious about learning everything, but Trent said it wasn't too bad. Teag will be going home with a feeding tube until she can take her full feeds from the bottle. Then we will be taking out that ugly thing! I can't wait to see her little face without it! We're praying for good news on her heart tommorrow, as that is the next hurdle we need to get through! I'm also praying that Trent gets a few hours of sleep these next few days! Thank you for all the comments on here, its so nice to hear all of the encouragement. Also, at the bottom of the screen there are a few links that better explain Teag's condition and treatment if you want more info!
Saturday! We had a pretty good night last night and I actually slept 4-5 hrs. throughout the night (which is good for the hospital). Teag's was calm and pretty sleepy for the first half of the day and then became suddenly irritable this evening. Trent and I spent about an hour and a half trying all of our tricks before we finally got her settled. The nurses seemed to think she's still experiencing withdrawal symptoms from the morphine which is being weined even more each day. She gets really irritable (inconsolable) and sweaty, and she also sneezes a lot which strangely is a sign of withdrawal we've been told. Its a little after 9 pm right now and she's been sleeping for about an hour- so here's hoping this is the start to a good night! I'll be spending the night here with her tonight so Trent can go get some sleep. I'm headed back to the tricities tommorrow for a few days to be with Gavin. I'm praying that Teag sleeps a lot and has a great next few days for Trent! We are continually hopeful that we'll be headed home sometime this next week, so please put that in your prayers! Teags is one month old on Monday! Its hard to believe a month has already gone by even though sometimes it feels like we've been here forever! I got my chance to put some clothes on her today and we took a few pics. She looks like a little lady!
Not much news to share today. Teags was started on a heart medicine to try and reduce her runs of 'SVT' she's been having. (super ventricular tachacardia) Basically she's been having small runs of super fast heart rythms over the past few days that they're trying to control. Other than that we're still watching her wrist for signs of improvment and we started training her for some oral feeds this afternoon! Sorry no pics today!
So last night was a little more exciting than Trent and I would have liked. Teag's heart rate decided to skyrocket along with her breathing rate. They tried to do an ekg but she wasn't having it, and we were up with her pretty much all night. Today (thurs) she had some x-rays done on her hand where the sore is, and she had an ekg (successful this time) to check on her heart. Her heart rate and breathing are still elevated and she is still pretty irritable, but we are hopeful that things will begin to calm down soon. This evening has been better, and right now she is sleeping away as we watch! Trent and I are faithful that this situation we are facing is all part of God's plan, and we know he has great things in store for Teag! (The bandage on teag's head is where the iv was taken out today. -No more iv's!)
Teagan is doing pretty well today again. She is dealing with some reflux issues so they gave her a 'wedge' for her bed which keeps her propped up at all times and it seems to be helping. She's also being given Zantac to help. The occupational therapist came by today to start working on her oral feeds. I think it will be a slow process, but one that I'm excited to begin! When I arrived today, Teag was a little fussy and Trent showed me how she likes to be held and 'bounced'. What a great daddy, she calmed down and fell asleep on his shoulder so I took a quick pic! I'm planning on taking the night shift tonight so hopefully Trent can catch up on some sleep!
Trent made it through his first night sleeping at the hospital with Teagan, although after talking to him this morning I'm not sure how much sleeping he actually did! She has both hands free now and is getting pretty quick at pulling out her binky! She is still breathing pretty fast which has put a hold on any oral feeds right now until that comes down. She is also pretty fussy at times and we are beginning to wonder if she is dealing with some reflux issues. She likes to be put in the baby swing sometimes, and Trent took a quick picture of her in it today. She's been sleeping for the last few hours, and hopefully will have an uneventful night!
So we are finally moved to the floor! They went ahead and moved Teagan to the general cardiac recovery area (out of the ICU) this afternoon. This is exciting but also a little scary because she gets much less one on one attention from the nurses. Trent has spent the entire day there with her and is planning on sleeping in the room with her tonight, so he can comfort her when she's awake. (what a great daddy!) I am at home with Gav until wed. when Trent's mom is coming to stay the rest of the week. This is how I've been balancing my time the last 2 weeks between Gav & Teag and its so hard to leave either one! I am longing for the day when we're all at home as a family together! Teagan is doing pretty well today but has had an increase in her breathing rate. Her heart rate is still back and forth between high and mid range- so we're anxious for both of these to come down and stay down! She should be getting her stitches out sometime this week and hopefully start oral feeds soon! I'm really hoping she has a good night tonight so that she and Trent can both get a little sleep!
Teagan had a pretty good night last night and slept for several hours. She's been a little fussy off and on the last few days and we're not sure if its her wrist hurting, gas pain, or morphine withdrawals. I'm convinced that its a combination of all three! Her wrist is looking better today though, and less swollen. So hopefully it will resolve itself without any intervention needed. Her heart rate has come down some, and her breathing has been stable without the need for the c-pap machine. She's been breathing on her own now since friday night! She had a great day today sleeping alot and not very fussy. The dr. was confident enough with her progress to suggest that we might be moved to the 'floor' tommorrow! (this is the general cardiac hospital wing, outside of the ICU) It would be the last stage of our hospital stay where they wein Teagan off of a few meds and teach us how to feed her/ care for her when we come home! I'm hoping that my post tommorrow will be complete with a picture of her new room outside the ICU! Thanks for the comments, and emails!
We've decided to start a blog with updates and pictures of Teagan throughout this journey as a journal for our thoughts and a better way to share them with our friends and family. Beginning this on day 22 of our hospital stay and day 23 of Teagan's life will require some catching up but I'll do my best!
Teagan was born on Friday March 21st 2008, "Good Friday!" at 12:51pm at Kadlec Medical center in Richland, WA. She was 19 inches long, 6 lbs. 13 oz and scored a 9/9 on her apgars! I was 39 weeks pregnant and scheduled for a repeat c-section due to a prior c-section with our first son Gavin. Looking back we are so thankful that she did not have to endure a stressful labor/delivery and was able to come into this world as strong as possible! Unaware of her condition, I was able to 'room in' with her after delivery and had the chance to hold her and nurse her several times. Around 1am Saturday morning, I asked the nurse if she would give Teagan a bottle for her next feeding as I was very sore and needing a few hours of rest. A few hours later the nurse returned without Teagan and explained that she
noticed a rapid breathing rate and heart rate after taking her to feed her. The NICU staff examined her and did some chest x-rays and thats when they noticed her enlarged heart. After performing an echocardiogram they noticed some problems with her left ventricle and left aortic valve. The results of the tests were sent to spokane to be evaluated by a pediatric cardiologist and Teagan was intubated and an IV was started to give her a medicine called
prostaglandin (which helps her heart function much like it had been in utero.) Early saturday morning we got the preliminary diagnosis on her condition called "Critical Aortic Stenosis." In Teagan's case, her left ventricle failed to form completely and is thickened which inhibits it from properly pumping. Also, her aortic valve is very small and is not properly functioning either. We were told that she would need some sort of surgery to correct her defect, and until then she would need the Prostaglandin to keep her alive. We were given the option of transferring her to Sacred Heart hospital in Spokane, or Children's hospital in Seattle. After choosing Children's in Seattle they told us that she would be flown there sometime that afternoon and that Trent was allowed to fly with her but I would have to stay in the hospital until atleast Sunday. (48 hrs. post surgery) The airlift team arrived shortly after 12 noon and they were on their way by 2 pm. I was released from the hospital in Richland Sunday around noon and after filling a few prescriptions and packing, was on my way to Seattle.
Seeing Teagan in the ICU for the first time when I arrived in Seattle was heartbreaking. She was resting comfortably in her little bed with a thousand wires and tubes going everywhere. Its all pretty overwhelming at first, but the nurses were great and explained what every wire was for and that she was comfortable and not in any pain. Understanding what was happening and why she was hooked up to certain things made it much easier to bear. Over the next few days we met with the cardiac team to discuss the best options for Teagan. At first it was thought that she was a good cadidate for a femoral artery balloon catheter procedure in hopes that the aortic valve could be 'popped' open and therefore able to function somewhat normal. But after some tests and ultrasounds it was determined that her arteries were too small to support the procedure and that her left ventricle was incapable of properly pumping even if the valve was to open up. The only other option left was open heart surgery, which was a terrifying thought. Trent and I had little knowledge about the anatomy of the heart and how amazing and complex it is. But after meeting with the docs and going over numerous heart diagrams, each of us could probably pass a pop quiz in anatomy/heart structure! The procedure decided upon is called the Damus-Kaye-Stanzel in which they fuse the aortic & pulmonary valve and widen one of her ducts to allow for increased blood flow as well as a few other adjustments. It's basically bypassing the left side of her heart, since her left ventricle cannot function. She has a single ventricle that works- her right. This is a temporary "fix" for Teagan though. She will out grow this procedure, then in 4-6 months, she'll have another surgery called the Bi-Directional Glenn. Her last surgery, which will finish the replumbing of her heart will be between 4-6 years of age and it's called the Fontan. This series of 3 surgeries is referred to as the "Norwood" track. We got the word on Tuesday March 25th that surgery was scheduled for Thursday morning at 7am, Teagan would be 6 days old. It was a relief knowing that there was a plan in place to repair her heart but also very scary having an actual date and time. Somehow it became much more real that all of this was really happening.
Thursday morning came and Trent and I arrived at the hospital early to spend some time with her prior to her going back. The nurses said that she was doing fairly well, but she was definitely ready to have surgery as she was having a hard time maintaining her SAT levels (blood oxygen) and her breathing was rapid indicating her heart was having to work extra hard. We were able to walk with her down the hallway to the entrance of the surgical wing and then had to say goodbye. This was probably the single hardest moment for me over the whole 3 weeks that we've been here now. Trent and I were given a pager and told that we would receive 4 pages throughout the surgery to let us know where they were at with the procedure. The 1st page indicated that anesthesia was finished and they were beginning surgery. The 2nd page was when they started her on the heart/lung bypass machine. The 3rd page meant she was off the bypass machine and thus the surgeons were finished. The 4th page meant that she was on here way to recovery. The surgery was expected to last until mid-afternoon, but we got the news around noon that she was on her way to recovery! Everything went well and there were no complications with the procedure. We were able to see her around 3:30 once she had been moved back to a room in the Cardiac ICU area. The dr.'s had to leave her chest open after surgery to acccomodate any swelling in the days following surgery and placed a thin film over the opening where we could see the outline of her tiny heart beating. She was pretty sedated and intubated but overall doing well for the surgery that she had just been through.
In the days following surgery, she had one episode of v-tach (irregular rapid heart rythm) and had to be put on a pacer for one night. She also required a large amount of fluid post op, to lower her heart rate which had soared to the 190's. (normal range for her size is 120-150's). She was so swollen in the few days post op that she didn't even look like our baby. But we were reassured that as soon as she started flushing the fluid out on her own they could start a diuretic medication to help her and she should return to normal size.
Her chest was closed on the monday following the surgery (april 1st, day 10) This surgery also went well and we were excited to have her last 'procedure' behind us hopefully. She has since been extubated (breathing tube removed) and had her chest drain tube removed as well as her pacer wires.
In the last week her breathing and heart rate have increased and she had to be put on a C-pap machine (positive air pressure) to help her breathe. There was talk of a possible infection and we are still watching her blood culture results daily. She has also developed a painful sore on her left wrist from an iv that was in place. The dr.'s are not sure why it is so swollen and red and have done x-rays to determine if part of the iv catheter has broken off in her wrist and is causing an absess. We are watching it very closely and there has been no decision made yet on what the plan is. She is however being weined off of her c-pap machine and as of today (april 12th ) she's been breathing on her own for 19 hours! We are still in the ICU area of the hospital until her heart rate and breathing are more under control. She's receiving my milk via a feeding tube through her nose, and is taking full feeds already! I am very anxious to begin oral feeds as soon as possible, and on monday someone is coming by to help with that!
We will try to post on here as often as possible. Sorry this first one was so long! Thank you all for your continued support and prayers throughout this whole journey, keep them coming! God has his hands on her and reveals himself more to us each day through our sweet baby girl. We are so thankful to have been given this gift in her and can't wait to bring her home!!
We started this blog to share the latest happenings at the Maxwell house and our daughter Teagan's 'heart journey'. Teagan was born March 21st 2008 with a congenital heart defect called Critical Aortic Stenosis which led to Hypoplastic Left Heart Syndrome. (HLHS)