Right after surgery
Right before they took her off the ventilator the first time.
A few days before she got out of PICU
Finally out of Intensive Care
(The Purple are the emails sent out while we were in the hospital)
I know everyone is eager to hear what is happening. Yes Eleora Devasha Toomey was born on 8/27/02. We ended up having a c-section and immediately the doctors noticed she was having trouble. They rushed her into ICU where they did a bunch of tests and found fluid on her lungs which is not something uncommon with a baby born by c-section. They also noticed in the tests that her heart looked a little strange and ran more tests. We now know she has a Ventricular Septic defect in her heart which is a hole between the right and left ventricles. Usually if this hole is small it can repair itself but in her case it is quite large. They have also found two more issues which are much less significant one is Kidney reflux (which is very common) sometimes urine can be refluxed back into the kidneys which can cause bladder and kidney infections this will fix itself but she will be on antibiotics to fend off infection until it does so. The other is a slightly thicker than usual valve in one of her arteries it is functioning just fine and is something she can live. The initial thought was that she was premature and the doctors were wrong on her due date but it has been concluded now that her development was slowed due to my gestational diabetes. So basically the one concern is the heart. And the next step is that somewhere between the age of 1 and 3 months she will have to have surgery and should be able to live a normal healthy life after that. What is happening right now is that she is still in intensive care over at Duke Hospital as soon as she is doing a better job of taking a bottle they will let her come home. I came home today and my delivery is a other fun story.
The Delivery: We went in on Tuesday the 27th to have the baby turned because she was breech. They gave me an epidural for the turning but I was still in a whole lot of pain and am really beat up from that. when they could not turn her they decided to send me into a c-section we got in there and half way through the procedure my anesthesia wore off and I of course started screaming and they sedated me heavily. Then I had an allergic reaction to the tape used to tape the epidural to my back and also the bandage over my incision so when they took of my bandage they took of a big chunk of skin with it.
8/31/02 We have really great news it looks like they might be letting Eleora out of the hospital as soon as Monday. We are so incredibly
excited.
9/2/02 Ok it is definite tomorrow is the day they are letting our little girl come home. She is doing really well. She is taking all of her feedings and that is the one thing that was holding her back from getting out so they are setting up all her appointments 5 different ones and we will be on our way.
9/6/02 We are finally home again on Thurs. afternoon Eleora had an episode where she refluxed and choked she stopped breathing and turned blue it was a very frightening experience but we got her suctioned out and breathing again very quickly and then were taken by ambulance to the hospital where we found out she has reflux. Now she has been put on another medication, we have to thicken her formula with rice cereal and have to keep her propped up all the time. For everyone who was here and helped us out with the situation we can not say enough to thank you and all of our friends and family who checked in to make sure everything is ok thank you also. Things are fine now and she is doing great will will keep the web page up to date still with everything is going.
9/10/02 We saw the Cardiologist today and this is what we are looking at. The type of condition she has is a very rare one the hold in her heart encompasses a portion of the aorta and the Pulmonary artery. It is called Conoventricular Ventrical Septal Defect. Eleora has already started showing some early signs of Congestive Heart Failure and has been put on medication which we will have to increase as she grows and the signs start showing up again. The plan right now is to wait until she is older and bigger to do surgery. The doctors prefer to wait to until somewhere between 6 and 12 months but can do it between 3 and 6 if necessary. We will have to watch very closely and see how she does and the time of surgery will depend on that. The doctors did tell us that the pressure in her heart is unusually high at this point because it is working to keep everything flowing the way it should when the pressure drops she will be going into heart failure and that is what they want to happen before they do surgery if they do surgery while the pressure is high it will cause a whole new set of problems.
Things are going well here and we are getting a little better I think at dealing with all of this. Thank you everyone for all your kind notes and concerns.
On a brighter note this little girl is amazing she has already figured out how to roll on her side, pick up her head, hold her pacifier in her mouth and the other day she grabbed her bottle so I couldn't take it out of her mouth to burp her.
9/17/02 We went back to the Cardiologist today and Eleora has gained 3 oz. in the past week which is not very much considering she is supposed to be gaining 1/2 an oz a day so she is 5 lb. 6 oz now so they doubled her medication. Now that everyone has seen her Ecco and is all on the same page we have more information about when her surgery will take place. The basic idea is when she is on the max of medication and is still having heart failure she will be put in the hospital and have the surgery. The doctor thinks that she will almost definitely need surgery by 6 months and pretty sure she will need it on or around 3 months of age. There is no way to know for sure but it will definitely be done by or around 6 months of age and she is 3 weeks today. I hope that makes sense.
A little more information about the hole in her heart basically her heart is about the size of a walnut and the hole takes up about 1/4 of it.
She is doing great though very alert lately and wanting to sleep longer at night. She will go as long as 4.5 hours which means a little more sleep for us. She barely ever cries and is a fairly laid back baby. I have added more pictures to her web page.
9/20/02 Today was Eleora's baby Naming and we put pictures on her web page.
9/21/02 We went to the birthday party of Cullen's friend Jessica. Muddy the mud cat a mascot for a local baseball team was there. There are lots of pictures on Cullen's web page
10/01/02 Well things are happening a lot faster than anyone thought. Eleora went to the doctor today and he was very concerned and ready to go ahead and admit her to the hospital but has decided to try some other stuff instead. Last week she weighed 5 lb 11 oz. this week she weighed 5 lb. 6 oz. even though she has been eating really well. This along with her difficulty of breathing and sound of her lungs made the Cardiologist very worried. As of today she is on 8 different doses of medication a day with 5 different medications. Also we have to add more powder to her formula to increase the calories. She has to go in again on Fri.. and if there is not a significant increase in her weight she will have to go over to Duke and be put on a feeding tube. Hopefully only for a few days and after that her body should be able to do better on its own. At first the Dr. was saying they wanted to wait until she was 6 months for her surgery and he said most likely it will take place between 3 and 6 months of age. Now he is saying 2 months of age most likely and since she is 5 weeks now that does not give us a lot of time. I was not prepared to hear this today since I had seen a big change in her size but that is because she is a growth spurt and getting longer but loosing weight in the middle. There are some new pictures on all the pages so take a look.
10/04/02 Well we are home again. right after I wrote my last update we got a call fro Eleora's cardiologist telling us that the technician that did her blood work called him at home and we needed to go to the emergency room right away. So we rushed over To Wake medical Center to find out that Eleora was severely dehydrated. I had been telling the Dr.s for weeks I thought she had diarrhea and they kept telling me she had normal baby poops and there was nothing wrong. We ended up spending 2 nights in the Pediatric ICU and 1 night on the regular floor so she could get fluids and antibiotics because her white blood cell count was really high also. It turns out that she had a urinary tract infection (thanks to the kidney reflux) and had an allergic reaction to her formula. She is now on a different formula and a stronger antibiotic. Eleora is much better now.
10/10/02 Well we went to the Cardiologist yesterday and things are going well. He is estimating 6-7 weeks until she will need her surgery and she looks good for now. I updated some pictures of Cullen on his page and 1 picture of Eleora.
10/13/02 Went into the hospital
10/17/02 Eleora had surgery
SHE IS WONDERFUL!!!! The surgery took until about 10 am and now we just got upstairs to the intensive care waiting room. It went perfectly she is wonderful. There are no words to describe the joy and relief we are feeling right now. We definitely have some recovery time but she is gong to be a happy healthy little girl. I can't wait to watch her grow. If there is anyone we are missing in this email please forward it on. You may get copies of this sorry about that. If anyone would like to reach us they can call 919-684-8111 and ask for the intensive care waiting room. She will be moved to a regular room probably tomorrow or the next day
10/18/02
Hi everyone. Here is the latest update on Eleora. She had her chest tube taken out this morning so she isn't bleeding anymore, but they don't think she will be taken off the respirator any time soon, which is pretty normal and ok. She just isn't ready yet. I heard hear heartbeat this morning. If you listened to her heart beat before you heard a swishing sound, but now she has the most perfect beautiful heartbeat I have ever heard. I will try to continue to keep everyone updated as to her progress.
10/23/02
Hello everyone. I just wanted to give you a quick update on Eleora. She had a seizure last night. They think it is from the heart and lung machine that she was on during surgery. They gave her seizure medication which she may be on for about 6 months. They did a cat scan last night and did not find anything wrong. Her spinal fluid was also checked and nothing bad was found. She will have an MRI and an EEG done this morning to make sure everything is normal
10/24/02
Eleora has had additional seizures (though these were smaller than the original seizure) and the doctors are not sure at this point if they are due to the trauma of the surgery or are actually neurological in nature. They are currently running tests, but at this time they are really not sure what is causing these seizures.
10/25/02
This is a GREAT e-mail. We met with all of Eleora's specialists today (cardiologist, neurologist, etc). Eleora's heart is perfect, all is fine with her recovery from the surgery. There are 3 things that could be causing the seizures: 1. Trauma from the surgery, which will go away in time; 2. It could be blood found on the back of her brain, which will also go away in time; 3. It could be that she has a seizure disorder that she will have to live with and take medicine to control. They are planning on taking her off the ventilator in the morning. And they are now giving her steroids to decrease the swelling in her throat. As long as that goes well and there are no more seizures, she should be out of ICU the beginning of next week. She has a minimum of 10 days left in the hospital. It turns out that instead of a stress ulcer, she has an intestinal infection. So she has 6 more days of not being able to have food in her stomach.
I am finally getting a chance to send out email this may be my last chance to get on a computer until Mon. or so. We are trying as hard as possible to remain positive and finally got some good news today. As everyone knows Eleora started having seizures and her throat started to swell so they had to put her back on the ventilator. They now have the seizure medication to an acceptable level to control them and they are starting her on steroids at noon to control the swelling her throat. The plan is to get her off the respirator either tomorrow or the next day. We have receive everyone's emails and can tell you how much they have meant. Please keep her in your prayers they are definitely helping. Last night Eleora was deeply sedated so I went and spent the first night at home in 10 days and was able to spend an evening with Sean and Cullen.
10/28/02
Things are going great here up until this morning Eleora had a tube in her nose giving her air and a tube going down to her stomach sucking out the acid so she could heal they are both gone now I can see my baby's face it is beautiful. All she has is 2 IV lines. I think she is a little afraid to sleep she is worried someone is going to stick her or do something to her but hopefully she will rest soon.
10/30/02
We are finally getting moved to a room this afternoon. I don't have a room # yet but if you call info for the hospital 684-8111 they should be able to transfer anyone to us or be able to tell you where we are. We should be there any time after 5 pm. Eleora is doing great. The latest is that she has a fungal infection in her kidneys and bladder. We are waiting to get the final word on the course of treatment for this but hopefully only have about a week left in the hospital.
11/4/02
We see the light at the end of the tunnel. As long as things go as well as they have been we are looking to get out around Thurs. or Fri. the only thing holding us back right now is eating. They want her to start slowly since she had not eaten for 15 days, but she is ready to take a lot more. Eleora will need to have Physical Therapy for the next year and will be going to something called early intervention. She may be developmentally delayed for a while but should be able to catch up. She looks wonderful as of last night she was 6 lb. 12 oz and just 2 weeks ago she was 5 lb. 9 oz. and she has grown almost an inch in length.
11/7/02 She came home finally after 21 days in the hospital.
VSD links
http://www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-9317