Updates on Everyone

Rebekah is doing good.  She will be 9 months old on the 18th and is about 16 lbs.  She had an Echo cardiogram done a month ago and her Leaks are a little bit bigger but nothing to be concerned with at this time.  In fact, we get to wait until January for her next Cardiology appointment. YAY!!  She is still on her medicines-- Lasix and Captopril.  She doing great eating her baby food and still sleeping good at night. She is still my happy, smiley little Angel.

 We have noticed some speech delays, developmental delays and ADHD behaviors with Lucas  As a result,Lucas has started preschool with an Early Childhood program catered to his needs; Speech therapy, etc.   He goes 5 days a week and rides a school bus.  He really enjoys it.  And, is doing well in this new school setting.

We got a call from Amanda's teacher a month ago with some concerns.  Amanda was having some academic delays and  bad behaviors started showing up so we took her to the doctor and got her labs drawn for Di George and She tested Positive for Di George and we have her an appointment in January for a neurologist and psychiatrist. 

My Husband A.J. has his Surgery date set for November 12th, 2010.  We are hoping he will be back home by Thanksgiving but he will be out of work until 2011.  He has been having more symptoms associated with Tetralogy of Fallot but hopefully he will feel much better in a few weeks after surgery.

I am doing okay.  I am on medicines for hypertension and antidepressant to relieve some Stress that I have with everyone's different needs.   I need to Stay Strong !!!!!

Husband A.J.'s Update

My husband A.J. has Tetralogy of Fallot--CHD and so he had a routine cardiology appointment a couple months ago.  He was feeling extremely wore down but he wasn't thinking anything about it having to do with his TOF.  The Echo cardiogram showed that his Leak in his Pulmonary Valve got considerably worse and so his Cardiologist wanted to perform another type of ECHO called a Trans esophageal echo cardiogram  and that showed that his Pulmonary Valve would need replaced, the 2 small leaks around his patch would need stitched closed, his Right Ventricule is enlarged and would need to be surgically re sculpted, and a separation between the 2 Upper Chambers of his Heart would be stitched closed.  And, it wouldn't be able to be performed in our hometown or anywhere close to Kansas but up in Minnesota at the Mayo Clinic.  There is no medications that will help with his chronic fatigue until Surgery is done.

 I am not going to be able to be there for my husband's Surgery and Recovery and it saddens me deeply but my 3 children need me also and it would complicate  matters if I uprooted them and left when I know I will need to be away from Amanda and Lucas when Rebekah needs her next surgery. A.J. agrees that I need to stay with the kids and says he'll recover as quickly as possible. My In laws will be with A.J. but I wish I could be in 2 places at once.

The next step for A.J. is a heart catherization.  That has not been scheduled yet.  We are hoping he'll be able to have his Open Heart Surgery before the end of the year.  That would make 2 open heart surgeries in 2010 for my family. 

Please send prayers for the 5 members of MY Family; that 2010 will end with Everyone Healthy

Rebekah-- 6 Months Post-Surgery and 7 months old Update

It is hard to believe that it has already been 6 months since her first surgery. And she is 7 months old tomorrow.  When we left the hospital she was on the medications Zantac and Lasix twice a day. And she had monthly cardiology appointments. She no longer needs the Zantac and her cardiologist cut back to Lasix once a day.  She has 3 small leaks now so she was put on Captopril 3 times a day but also got to lengthen her time in between cardiology appointments to every 2 months which she has another one next week.  Her incision looks great as well.


She is 25 inches long and is 13 lbs. 7.5 oz.  She sleeps very good at night about 10 pm until 6 am.; nap times are a different story. We call her our little "tumbleweed" because she loves moving all around on the floor; rolling and scooting.  She is a fast little mover.  We are struggling a little bit with baby food but I am sure that will get better soon. She is a very happy sweet baby that smiles all day.  She adores her Big Brother and Big Sister and has everyone wrapped around her little finger. All in All, Bekah couldn't be doing any better. Our Prayers have been answered and our prayers are continuing that she stays healthy so the next surgery is as far away as possible.

Coming Home

We were told at rounds on 2-28-10 that once A.J. and I  went to a CPR class and Bekah got her staples out, another ECHO and The Car Seat Test was completed; we would get to go HOME.   So, I called A.J. and told him to get up to K.C. and pick BOTH of us up.

 We were than scheduled to take the CPR class on Monday 3-1-10 and her staples and ECHO would be done Monday also so it was just a matter of the Car Seat Test ( had to keep SATs up while in the Car Seat for the 3 hours it takes to drive Home). So , we prepared to do that overnight and so After 3 hours, we asked our nurse if we were okay with the test and if it was okay to get her out of her seat.  She told us everything was good and so it was fine.  She never told us that she didn't keep her SATs up enough in those 3 hours.  She could have told us so we didn't keep her in that car Seat Longer than necessary.  That 3 hours was ONE of the most nerve wrecking time. It was quite stressful because going home was on the line, you know?  Anyway,   She had a nurse the next day that actually requested to have Bekah again since we were still there.  She helped  us through and checked on us more just because we told her about her night nurse and that 2nd time through we got that test done so we were good  there. 

The Following Morning at Rounds, we were asked  "Are you ready to get out of here?"  Well, YES of Course we were. It was a "DUH!" kind of response. I don't know if the resident was trying to be funny or not. 

On March 2, 2010, after 6 weeks of everyday, all day up at a hospital... 6 weeks of being away from Home...6 weeks of being away from Mandi and Luke... it was finally over and we would soon be home with my entire family.  My parents didn't tell Mandi and Luke that Bekah and Mommy were coming home. They were so surprised and screamed and ran into my arms.  It was one of the sweetest moments.  Thanks Mom and Dad so very much, for the 6 weeks of taking care of my Older Babies so I could be with My Heart Baby!!

The adjustment period would now start.  My Sweet Baby was 6 weeks old but felt younger due to bringing her home for the first time.  Mandi and Luke weren't used to a baby around or sharing Mommy with anyone else aside from each other.

We were ALL Home Finally and that Is the greatest Feeling!!

Recovery

The first 48 hours would be critical. They would keep her chest open for a few days to help with drainage and swelling so she would have to stay sedated. It was hard seeing her hooked up to the ventilator and so many medications and to know her chest was open still but I just had to keep telling myself it was temporary. This was also hard because I couldn't hold her like I had been every day thus far. She was a little anemic and so she did need a little blood transfusion. She was recovering very well and they were weening her off of oxygen and some meds that first night and her O2 SATs were holding strong in the upper 80s percent. She was truly my little "warrior" baby.

She was ready to have her chest closed on 2-22-10; just one more step to coming home. I was told it would only take about an hour to do the chest closure so I waited in the waiting area; which was fine but after about 3 hours I had to go to the front desk of PICU and ask IF anything was wrong and why couldn't I see my baby yet? The girl at the front desk of the PICU came back and said Bekah's nurse called about 10-15 minutes ago saying I could go back now and She apologized saying she couldn't FIND me even though I was in the same chair the whole time. So, I was happy that nothing was wrong but I was curious to know why it took longer then the hour. Bekah's nurse informed me that she was starting to wonder what had happened to Me and she called for me OVER an hour ago. I was a little more than upset to say the least.

It was amazing after her chest was closed how quickly she started losing all her tubes and wires and medicines. After 2 days, she just had a central IV line, nasal Oxygen and a NG tube. As far as post-op and her heart she was doing awesome. She was well enough to be moved out of PICU and into a regular room. We were back to square one with her feedings which was the biggest hurdle; so we starting working with OT again.

After rounds on 2-27-10, her cardiologist told the nurses that she shouldn't be on O2 anymore and get the NG tube out and start demand feeding. I was so happy because after asking them to do the exact same thing; they had to do it. You should know No Dr or nurse listened to me -Her Mother. After those tubes were taken out she was eating better; not her full bottle but over half. I was very happy with that.

We would be going HOME Soon!!

First Surgery February 17, 2010

Bekah had her first Heart Cath. performed on February 8, 2010 at 3 weeks of age. She did amazing.

Rebekah's condition was talked about at the surgical meeting on the 12th and she was put on the schedule for Surgery on the 17th. There was just too much blood getting into her lungs at that point. It was such a relief to finally have a date but I was also terrified beyond belief that she would have to undergo SUCH a major operation and knowing that the bypass machine would be used.

On the morning of the 17th; one day before she turned 1 month old, My Sweet Precious Baby Girl went into the OR to have her little heart fixed. My parents drove early in the morning to make it just in time to see her right before she would be taken. It was about a 6 hour surgery but the time passed easier with my parents there. We got hourly updates; it went very routine with no complications.

I've asked "Why Her? Why Me? Why Us? " several times. And, my Faith has gotten me through these past few weeks and will continue to get me through. Along with all the prayers from Family, Friends and even people I have never met.

Miss Rebekah is such an amazing, strong, little fighter. I praise the Lord that he watched over her and all of her surgical team ( doctors and nurses).

NICU and DiGeorge Syndrome

Bekah's doctors kept going back and forth with deciding whether or not to send us home before surgery, when surgery would occur, etc. There was so much information thrown at us all at once. It was very confusing at the time.

She was not eating well at all. She was getting sick every bottle so they were needing to NG tube feed her but she would get sick even then. It was very hard to watch her struggle so hard and get so tired so easily. She did not like the NG tubes and kept pulling them out but since she wasn't taking enough by bottle; they needed to keep inserting new ones.

All the tests that they ran for her digestive system came back negative so nothing was wrong there. After many trials and errors; it was concluded that it may just be Reflux and hopefully she will outgrow it. She was also put on the Sensitive-Lactose Free Formula. After a few weeks, she was starting to eat very well and gaining weight.

At one of many ECHOs that she has had, they discovered that her Main Valve is leaking which made them want to do her first open heart surgery sooner than later. We would definitely NOT be going home before surgery. Now it was a waiting game to see when Surgery would be scheduled. And, once again they went back and forth. She was stable enough to wait on surgery BUT we also couldn't go home. It was a little frustrating to say the least.

If that wasn't enough... They had some genetic testing done because of the type of CHDs my husband A.J. and Bekah has co insides with DiGeorge Syndrome. They were both positive for DiGeorge Syndrome(depletion of Chromosome 22q); which also has many other symptoms along with CHDs. ( Tetrology of Fellot and Truncus Arteriosus).

Traveling to CMH

I'm sorry about the lapse in time between posts. It's been a hectic few weeks.

Because of very dense foggy weather, Bekah was transferred to Children's Mercy Hospital (CMH) by ground ambulance instead of being airlifted on Jan. 19th at around 1 p.m.

I was trying to get discharged as quickly as possible. I was thankful I was well enough to be able to travel so soon after giving birth. It was a 200 mile journey. It was less than 24 hours after delivery that I was allowed to walk out of the hospital (with pain medications of course).

A.J. and I drove in the dangerous fog in order to meet our baby girl at CMH. My parents would watch Amanda and Lucas while we went to K.C. I was thrilled that all 3 of us got to CMH at the same time. I hated that I was forced to be away from her that long and not knowing how she was doing. We were told later that she was a perfect traveler and better than most babies.

We weren't even thinking about lodging. Luckily we were told about Ronald McDonald House Charities(RMHC) and we were able to get to stay at one of the houses. It was a short walk;but up a hill. It was difficult with myself still recovering. They did provide a shuttle but didn't find out about it until later on. I was still feeling very sore, emotional, stressed and exhausted but RMHC provided a little relief and comfort.

Until the next blog post... God Bless You All!!

Bekah's Story--Finding Out I AM a Heart Mom

At 2:38 p.m.on Jan.18, 2010, my little girl joined our family. She was so sweet and I was so happy to finally have her with us. Just a few hours later after meeting Big Sister, Big Brother, and grandparents; her pediatrician came to do her first exam and she informed us of a Loud Heart Murmur and wanted us to have her see a Cardiologist and have an Echo cardiogram done. I was a little stunned but I knew heart murmurs in newborns were common. I didn't realize until later that they did take a little longer than usual to let me hold my baby for the first time. No one had ever mentioned a heart murmur before then.

We thought we were going to have to wait until the next day to have the Echo performed so we just planned to have a nice quiet evening getting to know this sweet baby. My parents came to see Bekah along with my 2 sisters. My husband, A.J. and other 2 children had already left for the evening. Before too long they came and got my baby for her Echo. I was surprised that they were doing it this evening but at least it would get done sooner. My younger sister stayed with me for the Echo. Thank God she was there. I was extremely nervous and scared.
It wasn't very long before my baby was brought back to me and was informed the Dr. would be in shortly to talk with me. Thank God my sister was still there with me. He said that She had a pretty significant Heart Defect and she would need surgery within the next 10 days but they couldn't do the surgery in my hometown of Wichita, Ks. and that she would have to be airlifted to Kansas City, Mo. which is 200 miles away immediately. And he said IF she Survived IF...IF... What? My Heart Just Sank completely and there was no stopping the tears obliviously as any Mother could imagine. I was asked where my husband was and was told to get him back up to the hospital to see his new daughter before she was transferred to Children's Mercy Hospital. We weren't able to go with her during transport to K.C., Mo. So, my Dad stayed with my other children while A.J. came back to the hospital.

She has CHD(Congenital Heart Defect) called Truncus Arteriosus, VSD(Ventricular Septal Defect, and PFO(Patent Foramen Ovale).

I had no idea what was going to happen and what should I do with my other 2 children while I went with my baby girl? I was still a patient in the hospital. I would figure that out later.

Having my Baby Girl

It was a planned pregnancy and I had high blood pressure with all 3 pregnancies so nothing really unusual there. But, because of HBP I would need monthly sonograms in the 3rd trimester to check on baby's growth. There was a couple trips to the hospital because my blood pressure spiked very high so monitering was done on baby and me. Everything was fine at those trips. A few weeks later at one of my monthly sonograms they discoverd that I had polyhydramnios( extra amniotic fluid) and my Dr. proceeded in ordering weekly biophysicals which are mini sonograms. It seemed that the baby would Pass one week and then the next she would Fail which meant an extra trip to OB for Nonstress test. So, with all these complications I was scheduled for an induction at 39 weeks gestation. I was informed that I would feel her moving more because of the extra fluid and I DID. She felt very Low also; I would lay in bed and think "Please don't let me break my water here". That would have been another story altogether.

I got to the hospital on the morning of January 18, 2010. It seemed to go pretty smoothly at first but then I wasn't progressing like they wanted and there was some decels in baby's heartbeat. I seemed to be stalled at 6 centimeters. There was mention of a C-section. So, they broke my water and at one point they stopped Pitocin for a little bit. But, after my water was broke and they resumed Pitocin, there was some progress and it was time to push. It was about an 8 hour Labor and just a couple of pushes later; My little Baby Girl was here. She was perfect and sweet and healthy... so we thought.

First Things First

Welcome All...

I am a devoted wife and stay at home mom. And, I wouldn't have it any other way. I'll be married 8 years this coming September to a great man, wonderful husband and the best Dad that my kids could ask for. I do get help from him;although he complains every once in awhile; what Man wouldn't?

We have 2 little girls; Amanda is 5 years and Rebekah is 4 months now. And, our son, Lucas is 3 years. They are such a joy but there are challenging moments. We have come to find out that there are disabilities in the family and I'll blog about them all soon so you'll need to come back to find out. I have lived with Cerebral Palsy since my birth but it is a mild case although I still have limitations. I have learned to do just about everything one handed. My C.P. isn't the disabilities in my family I am talking about.
I suppose I should end this post or it'll get to be too long. LOL