We had all the developmental testing done this week. It was really a riot. Adelina has had an ear infection and not a whole lot of sleep (mom's pretty tired too). This was a routine appointment, not scheduled for any concerns other than that we have a critical congenital heart defect.
During scheduling we were assured that the office was nothing like a doctor's office and more like a play room. From the outside the office has a playground attached and is also an office for children with Down Syndrome so we started off well with lots of sweet little spirits.
As soon as we entered the office they weighed her, measured her height, checked her temperature and gave up on blood pressure as she was so done by this point. Nothing like a doctor's office??? We were then directed to a room with an exam table with white paper on it. In their defense there was also a table in the room with a couple of chairs. So really, it was a doctor's office in every sense but the staff was super sweet.
To begin the assessment the Neurologist dumped a bunch of red blocks out of a cup. Addy gave her a look that said, "why are you making a mess!" She immediately put the blocks back in the cup. With how tired she was I was shocked that she was being so unintentionally cooperative. Next, they gave her a board with peg holes and a handful of pegs. She put the pegs in all the holes but had started at the second hole so she had an extra peg. She kept chatting with the doctor and you could tell she was concerned. She pulled out one she had put in and replaced it with the one in her hand but still had an extra peg, lol. The doctor pointed out the extra hole and the situation was quickly resolved. Adelina loves to draw...on everything but she prefers pen. She was given a paper and crayons but she refused to draw because she wanted Dr Pham's pen. She asked her to identify her body parts (which she knows) and she flat out refused. These days she LOVES to show us her new teeth and lifts up her hair when she wants it fixed. She was given a large puzzle with a circle, triangle and square in it. She was able to the put the circle piece in but tried the other two spots first and was a little bugged that it didn't fit. Usually, this assessment can take up to three hours. Many more tests were done but we were done in just over an hour.
The results? Our baby girl is on track in gross motor, ahead by a bit in speech and ahead in cognitive processing or critical thinking. No surprise there and she suspected she tests much higher but she wasn't interested.
We are so grateful for her good developmental health!
Wednesday, August 22, 2018
Saturday, February 3, 2018
How are we doing it?
A friend mentioned how stressed we must be and as I was jogging this morning I had a few minutes to organize my thoughts. Yes, we are stressed. First, I can't continue without mentioning that Brent and I were both in a tough spot. We were carrying heavy burdens and although we have been given much peace we were sinking into depression (PTSD is real but in the heart world it's TSD). I believe that the Lord can take these struggles away, but, he expects us to seek help just as we would if we had a broken bone. I had my first ever panic attack one night, it felt like someone was sitting on my chest. It wasn't at the moment of a major medical decision, it was the quiet hours of the night. Adrenaline had been carrying us but our endorphin reserve was depleted.
I knew we needed help but I kept hearing these horrible experiences with trying anti-anxiety meds and anti-depressants and the side effects were rough. Did you know it takes an average of 8 years to find the right medicine and dose of depression and anxiety. Well, I didn't have 8 years. We tried jogging, which we have always enjoyed but it wasn't enough.
My wonderful, energetic, amazing mom came to visit and brought some products she had been taking that had really helped her. I figured we couldn't get much lower so I started taking them (I frankly did not expect them to work). They are produced by a group called Amare Global. Their goal is mental wellness. My anxiety DISAPPEARED and that overwhelmed cloud dissipated (I literally cleaned out the car, completely cleaned out the garage and deep cleaned the whole house in the first few days). Brent saw the difference and also started taking their Mood+. This is how we handle the TSD.
Now, for the rest. We decided that if our healthy time with our Adelina is limited than we don't want to waste it (we expect the road to get rocky by the age of two but we also expect her to live). We made a list of all the things we wanted to do this year. Instead of doing one a month we are doing one to two a week. The list is simple. Let her have as many baths as she wants (within reason). Visit a bunch of different parks. Spend time outside. Some are easier to quantify. Visit the Brownsville zoo. Jog outside every possible day (she LOVES this). Finger paint. Put up window clings for each season. Ride the ferry. Go to the beach as often as we can. Play in the rain. Dance (she loves to dance). Take TONS of pictures and videos. The list goes on and on.
When the choice comes between getting the kids to bed on time on a Friday night or having family movie night, we have a family movie night. When the debate is between picking up the house or snuggling with the kids, we try to snuggle, even if it's just for a moment. Do we still discipline? You bet! Do we still clean and cook? Of course. Do we still tell Adelina "No?" Actually we don't, lol, when we use the word she bursts into tears. That doesn't stop us from telling her "no" in many other ways :).
I knew we needed help but I kept hearing these horrible experiences with trying anti-anxiety meds and anti-depressants and the side effects were rough. Did you know it takes an average of 8 years to find the right medicine and dose of depression and anxiety. Well, I didn't have 8 years. We tried jogging, which we have always enjoyed but it wasn't enough.
My wonderful, energetic, amazing mom came to visit and brought some products she had been taking that had really helped her. I figured we couldn't get much lower so I started taking them (I frankly did not expect them to work). They are produced by a group called Amare Global. Their goal is mental wellness. My anxiety DISAPPEARED and that overwhelmed cloud dissipated (I literally cleaned out the car, completely cleaned out the garage and deep cleaned the whole house in the first few days). Brent saw the difference and also started taking their Mood+. This is how we handle the TSD.
Now, for the rest. We decided that if our healthy time with our Adelina is limited than we don't want to waste it (we expect the road to get rocky by the age of two but we also expect her to live). We made a list of all the things we wanted to do this year. Instead of doing one a month we are doing one to two a week. The list is simple. Let her have as many baths as she wants (within reason). Visit a bunch of different parks. Spend time outside. Some are easier to quantify. Visit the Brownsville zoo. Jog outside every possible day (she LOVES this). Finger paint. Put up window clings for each season. Ride the ferry. Go to the beach as often as we can. Play in the rain. Dance (she loves to dance). Take TONS of pictures and videos. The list goes on and on.
When the choice comes between getting the kids to bed on time on a Friday night or having family movie night, we have a family movie night. When the debate is between picking up the house or snuggling with the kids, we try to snuggle, even if it's just for a moment. Do we still discipline? You bet! Do we still clean and cook? Of course. Do we still tell Adelina "No?" Actually we don't, lol, when we use the word she bursts into tears. That doesn't stop us from telling her "no" in many other ways :).
Thursday, February 1, 2018
More questions than answers
We saw our cardiologist yesterday. She showed me her chest x-ray from the day we were discharged... her right lung was collapsed! I'm still stunned that they chose to send her home with a collapsed lung.
Soooo, she did a new chest x-ray and Adelina's lungs are clear so she said I didn't need oxygen anymore, that the collapsed lung was really the main issue. We took the oxygen off and walked out into the hall to test her. Adelina was NOT happy and belly flopped on the floor with a sob(she knew and remember exactly what happened last time, she cried the second we walked in the door). She only desatted into the 60s which is expected so she told me to take her out and enjoy being oxygen free. I should have known better. She also mentioned that she didn't think the AVM's were as bad as originally thought and we couldn't really do anything about them right now. We plan to go back soon to have a heart cath and hopefully coil some collaterals (we're hoping that little conduits have formed from vein to vein because they can be fixed). If not, she may need her next Open heart surgery in as little as three months. If they have to do it early they have to do it inside the heart. Adelina's hear tis full of scar tissue and this would be very risky. If we were able to wait until she was three they would do it outside the heart. Also, if they do the open heart surgery this young they will have to do another one at age as she will have outgrown it.
The appointment was surprisingly short since we avoided being admitted so we took our kiddos to the Houston zoo. Addy LOVED the freedom and was pretty impressed with the baby elephant. If we picked her up she screamed bloody murder so we let her move. I think she was just so excited not to be tethered.
We drove home and discovered that Addy was breaking 5 teeth in (you know the molars that are part in part out... ouch!) so we gave her some tylenol and made it home without too many tears.
In the morning just for peace of mind I checked her oxygen saturations after she'd been doing VERY little, just walking around the dining room. Her O2 sats were at 58%! I was and am still sick over it.
We have gone now for weeks trying to keep her oxygen up and for the last two weeks trying to limit her exertion. I put our Addy in the tub tonight and she was so blue compared to her big sister. It's hard to know that we only know such a small amount when it comes to medicine and that so little research is done on congenital heart defects. I pray for advancements and am grateful that we have a loving Heavenly Father that is omnipotent.
Soooo, she did a new chest x-ray and Adelina's lungs are clear so she said I didn't need oxygen anymore, that the collapsed lung was really the main issue. We took the oxygen off and walked out into the hall to test her. Adelina was NOT happy and belly flopped on the floor with a sob(she knew and remember exactly what happened last time, she cried the second we walked in the door). She only desatted into the 60s which is expected so she told me to take her out and enjoy being oxygen free. I should have known better. She also mentioned that she didn't think the AVM's were as bad as originally thought and we couldn't really do anything about them right now. We plan to go back soon to have a heart cath and hopefully coil some collaterals (we're hoping that little conduits have formed from vein to vein because they can be fixed). If not, she may need her next Open heart surgery in as little as three months. If they have to do it early they have to do it inside the heart. Adelina's hear tis full of scar tissue and this would be very risky. If we were able to wait until she was three they would do it outside the heart. Also, if they do the open heart surgery this young they will have to do another one at age as she will have outgrown it.
The appointment was surprisingly short since we avoided being admitted so we took our kiddos to the Houston zoo. Addy LOVED the freedom and was pretty impressed with the baby elephant. If we picked her up she screamed bloody murder so we let her move. I think she was just so excited not to be tethered.
We drove home and discovered that Addy was breaking 5 teeth in (you know the molars that are part in part out... ouch!) so we gave her some tylenol and made it home without too many tears.
In the morning just for peace of mind I checked her oxygen saturations after she'd been doing VERY little, just walking around the dining room. Her O2 sats were at 58%! I was and am still sick over it.
We have gone now for weeks trying to keep her oxygen up and for the last two weeks trying to limit her exertion. I put our Addy in the tub tonight and she was so blue compared to her big sister. It's hard to know that we only know such a small amount when it comes to medicine and that so little research is done on congenital heart defects. I pray for advancements and am grateful that we have a loving Heavenly Father that is omnipotent.
Saturday, January 27, 2018
Our card tower isn't as stable as it felt
At the beginning of December we were admitted to Driscoll Children's Hospital for a high fever. A couple of days later we learned that our heart warrior had Roseola, so nothing urgent.
On December 16th Addy started running a high fever again only that night her 3 year old sister was also running a high fever with croup. The 3 year old was much sicker than the baby.
December 22nd I just couldn't kick the feeling that something was wrong. I finally caved and took her to the E.R. but because I was still feeling like I was over-reacting (and I didn't want to jinx Christmas) I stopped at the pediatricians to have them check her oxygen levels. She was asleep in the car and I made them come out in the cold and check her. Her oxygen was at 69%, she is usually at 84-85%. I called Primary Children's and might have cried to the nurse, lol. She told me to book it or I could stop at the nearest hospital for them to life flight her. I chose to cruise and did debate on calling 911 for an escort (really, I was that worried). At the hospital I rushed her into a crowded room of anxious parents. I held her up and said, "I have a heart baby her oxygen is really low." We skipped right past all her peers. When they checked her numbers she was at 53%. I was sick! I'm so glad I followed those promptings to bring her in. She tested positive for parainfluenza4 (not the flu). Two days later we took her home on oxygen, a 1/12th of a liter and two days later we took her off... yay!
On the 27th I just couldn't shake that feeling that something again was wrong. I checked her oxygen levels and they were low again. We put her back on oxygen but noticed that she only needed it after walking around. We were enjoying a family reunion so we just kept an eye on her. We returned to her grandparent's house and in the morning I chased her up the stairs. She turned blue and was really struggling, I caught her oxygen saturation at 42%. I grabbed grandma (so she could drive) and we rushed back to Primaries. In the ER if she walked on the floor she'd drop into the 60s but if I held her she bounced back to the 80s. We had a sedated echo and didn't see too much concerning other than that she needs a cath (we expected this). The head of the single ventricle survivor clinic came to visit with us and was very frank that she most likely will need a transplant in the near future. She tested negative for any virus.
We traveled back to Texas and had one day home before an appointment with her cardiologist at Texas Children's Hospital. I had a gut feeling that we were going to be admitted (I even packed my clothes separately from my husband and kids). In the spirit of being optimistic though, I planned family outings in Houston. We waited, and waited and waited for her appointment and within minutes of seeing her cardiologist we were admitted, lol.
We had been inpatient for a few days and the doctors were making it clear that they didn't see any issues (she was in a crib). They came to send us home, clearly, not believing me (she didn't even need oxygen in the crib). I asked that we run her around the floor and check it again. They agreed and again she dropped to 55% oxygen saturation. That quickly ended the discharge discussion. They did an echo (it failed, she was too fussy). They did a CT (lousy pictures as she screamed the whole time, I was SO mad). They did a sedated echo and learned nothing we didn't already know. Next they did a bubble study. They had to put two IVs in because of her special heart and mommies heart couldn't take much more. The bubble study was the key. Addy has atrial ventricular malformations (AVMs). In other words her blood is bypassing her lungs, so they aren't carrying oxygen to her body. This also means that no matter how much oxygen I give her it doesn't bring her oxygen saturation up (the oxygen she is on now is helping with her slight cold). This is caused by the replumbing of her heart. Normally an enzyme is created as blood passes through the liver and prevents the body from making AVMs but in babies like Addy these enzymes aren't made. The solution? The next open heart surgery, the "Fontan." The problem is that the "Fontan" is typically done around age 3 and a half. She is WAY too young at only 15 months.
Monday morning, the 22nd the team came in and told us that it was unlikely that we would go home for some time. That afternoon the cardiologist came in and discharged us. Basically, we could do the same thing they were doing there. So, I rented a car and drove home. We will be going back every week to be monitored. When she has been healthy for 6 weeks we expect to have her in for a heart cath (it's not open heart surgery but still rough on our baby).
Now we are waiting for our follow up appointment next week to find out the game plan. Prayers are appreciated.
On December 16th Addy started running a high fever again only that night her 3 year old sister was also running a high fever with croup. The 3 year old was much sicker than the baby.
December 22nd I just couldn't kick the feeling that something was wrong. I finally caved and took her to the E.R. but because I was still feeling like I was over-reacting (and I didn't want to jinx Christmas) I stopped at the pediatricians to have them check her oxygen levels. She was asleep in the car and I made them come out in the cold and check her. Her oxygen was at 69%, she is usually at 84-85%. I called Primary Children's and might have cried to the nurse, lol. She told me to book it or I could stop at the nearest hospital for them to life flight her. I chose to cruise and did debate on calling 911 for an escort (really, I was that worried). At the hospital I rushed her into a crowded room of anxious parents. I held her up and said, "I have a heart baby her oxygen is really low." We skipped right past all her peers. When they checked her numbers she was at 53%. I was sick! I'm so glad I followed those promptings to bring her in. She tested positive for parainfluenza4 (not the flu). Two days later we took her home on oxygen, a 1/12th of a liter and two days later we took her off... yay!
On the 27th I just couldn't shake that feeling that something again was wrong. I checked her oxygen levels and they were low again. We put her back on oxygen but noticed that she only needed it after walking around. We were enjoying a family reunion so we just kept an eye on her. We returned to her grandparent's house and in the morning I chased her up the stairs. She turned blue and was really struggling, I caught her oxygen saturation at 42%. I grabbed grandma (so she could drive) and we rushed back to Primaries. In the ER if she walked on the floor she'd drop into the 60s but if I held her she bounced back to the 80s. We had a sedated echo and didn't see too much concerning other than that she needs a cath (we expected this). The head of the single ventricle survivor clinic came to visit with us and was very frank that she most likely will need a transplant in the near future. She tested negative for any virus.
We traveled back to Texas and had one day home before an appointment with her cardiologist at Texas Children's Hospital. I had a gut feeling that we were going to be admitted (I even packed my clothes separately from my husband and kids). In the spirit of being optimistic though, I planned family outings in Houston. We waited, and waited and waited for her appointment and within minutes of seeing her cardiologist we were admitted, lol.
We had been inpatient for a few days and the doctors were making it clear that they didn't see any issues (she was in a crib). They came to send us home, clearly, not believing me (she didn't even need oxygen in the crib). I asked that we run her around the floor and check it again. They agreed and again she dropped to 55% oxygen saturation. That quickly ended the discharge discussion. They did an echo (it failed, she was too fussy). They did a CT (lousy pictures as she screamed the whole time, I was SO mad). They did a sedated echo and learned nothing we didn't already know. Next they did a bubble study. They had to put two IVs in because of her special heart and mommies heart couldn't take much more. The bubble study was the key. Addy has atrial ventricular malformations (AVMs). In other words her blood is bypassing her lungs, so they aren't carrying oxygen to her body. This also means that no matter how much oxygen I give her it doesn't bring her oxygen saturation up (the oxygen she is on now is helping with her slight cold). This is caused by the replumbing of her heart. Normally an enzyme is created as blood passes through the liver and prevents the body from making AVMs but in babies like Addy these enzymes aren't made. The solution? The next open heart surgery, the "Fontan." The problem is that the "Fontan" is typically done around age 3 and a half. She is WAY too young at only 15 months.
Monday morning, the 22nd the team came in and told us that it was unlikely that we would go home for some time. That afternoon the cardiologist came in and discharged us. Basically, we could do the same thing they were doing there. So, I rented a car and drove home. We will be going back every week to be monitored. When she has been healthy for 6 weeks we expect to have her in for a heart cath (it's not open heart surgery but still rough on our baby).
Now we are waiting for our follow up appointment next week to find out the game plan. Prayers are appreciated.
Thursday, October 19, 2017
Look who turned 1
Adelina
Stands solo
Takes a couple of steps
Climbs everything
Jabbers
Eats!!!
wears 12-18 month clothes
Loves being outside (doesn't trust the grass)
a Pacifier baby through and through (she often carries a spare, just in case)
Sunday, September 17, 2017
It's been 1 whole week
It's been 1 weeks since we took out Adelina's feeding tube (she sneezed and it came out, so we got rid of it). We have been weaning with a program this time (growing independent eaters, we love them). We cut all her night feeds and then decreased all of her daytime feeds. We had a couple of cranky days and around day 8 she started to take more than a half an ounce, after she ate we'd give her what she hadn't taken through her tube. She plateaued at an ounce and a half so we decreased her daytime tube feeds again. She quickly picked up from here and we skipped the last step. We had some cranky nights where we knew she was hungry but she would not take a bottle. Now we are reteaching ourselves how to feed a baby instead of how to feed a pump. The pump is on a regimented schedule. Turns out our baby does not want to be fed by the clock or while sleeping (although I do dream feed her last med of the day).
Things I LOVE about being tube free!
Baths are a snap.
All we have to do is undress her and plop her in the tub, she loves baths and we don't constantly lose the tube after them.
Any outfit is fairly easy to get on and off.
It's like a whole new wardrobe has become available, shopping anyone?
We are mobile.
Our mobile baby is so much more mobile and never has her tape ripped off her face. We are walking along furniture now and standing solo (a few times so far).
We babble.
We are babbling so much that we no longer need speech therapy. We want three words by the age of one and she already has them, dada, mama, baba, and weeee (lol). She also has words for her siblings.
We can leave the house.
Leaving the house is not an hour long process and I don't have to run back and get whatever we left (in all fairness I rarely left unprepared).
Food glorious food
Adelina can eat at the table with us (she used to play on the floor while we ate or be in bed). She can tell us when she's hungry, what she likes or dislikes.
No more throw up
We haven't lost all contents of our stomach since we started weaning. We no longer force feed when she's not feeling well and we no longer overfeed. She was getting 31 ounces of milk a day, she is nowhere near that amount, she prefers solids and liquids combined.
Things I LOVE about being tube free!
Baths are a snap.
All we have to do is undress her and plop her in the tub, she loves baths and we don't constantly lose the tube after them.
Any outfit is fairly easy to get on and off.
It's like a whole new wardrobe has become available, shopping anyone?
We are mobile.
Our mobile baby is so much more mobile and never has her tape ripped off her face. We are walking along furniture now and standing solo (a few times so far).
We babble.
We are babbling so much that we no longer need speech therapy. We want three words by the age of one and she already has them, dada, mama, baba, and weeee (lol). She also has words for her siblings.
We can leave the house.
Leaving the house is not an hour long process and I don't have to run back and get whatever we left (in all fairness I rarely left unprepared).
Food glorious food
Adelina can eat at the table with us (she used to play on the floor while we ate or be in bed). She can tell us when she's hungry, what she likes or dislikes.
No more throw up
We haven't lost all contents of our stomach since we started weaning. We no longer force feed when she's not feeling well and we no longer overfeed. She was getting 31 ounces of milk a day, she is nowhere near that amount, she prefers solids and liquids combined.
Monday, August 21, 2017
Up, up and away
For us, this is normal. I did not call my husband to come home from his business trip. I sorely missed being close to family but greatly appreciated friends who stepped in to help. I did not feel like this was critical but since I determined long ago to enjoy every day I'm sure it seemed odd that I was taking pictures and laughing with my baby as the day progressed.
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