2-11-10

This week we are celebrating and praising God that Alegria turned one on 2/9/2010! It has been an awesome and challenging year, one in which we sometimes wondered whether we would make it through, but by the grace of God we did! We had a huge party at our church last Saturday where our friends and family joined with us in celebrating and rejoicing in our precious little girl's 1st birthday. It was such a wonderful celebration!!!


So much has happened in the last eight months since I posted to Alegria's page, it is hard to know where to start. I guess the biggest thing is that life has once again calmed down and settled back into much more of a routine. She is no longer having such frequent doctor appointments, tests, and hospital visits as she did those first few months. We have thoroughly enjoyed the more time at home! Alegria certainly still keeps me on my toes, but most of her days are spent laughing, smiling, cooing, and playing. God is always faithful to always give us the wisdom needed to meet her needs. Ali is really doing so well! Other than her g-tube, her care is not much different from our other babies.

Here are some "facts" about Alegria I put together for her birthday celebration...


FACTS about Ali
She loves to laugh, coo, and smile!
She loves to put EVERYTHING in her mouth!
She also loves to look at lights.
She finds the light from mommy's cellphone a very interesting distraction in the middle of the night.
She enjoys cuddling with her brothers and sisters.
She likes to suck her thumb and her feeding tube.
She enjoys the shower.
She has 6 teeth.
She likes playing with both her hair and anyone else's she can grab hold of.
Alegria is a blessing and a joy to our family!

Medical FACTS about Alegria
On 5/5/09 at almost 3 months old, we learned she had Trisomy 13.

Alegria is primarily fed breast milk through her g-tube which is a small port directly into her stomach.
She is very sensitive to the foods I eat.
She has battled major reflux on and off for the first 5 months of her life.

She has stopped breathing 5 times this year and has needed resuscitation each time.
Once she needed an ambulance and full CPR Twice were complications after surgery in the hospital.
Twice were at home complications of severe reflux episodes.
The last time she has needed the Ambu bag was 7/24/09.

She has undergone anesthesia 3 times already.
She has spent 9 days in the NICU and 11 days in the PICU thus far.
She was born with a unilateral complete cleft lip and palate on her left side along with an cleft in the palate on the right side.
She has at least one more surgery needed this year to reconstruct her palate.

Ali was born with multiple congenital heart defects, and yet her heart is currently functioning well. She has a bicuspid pulmonary valve which means one of the valves of her heart has only 2 flaps instead of the normal 3.
She was born with 2 holes in her heart and also an extra vessel. The holes have already closed, and the extra vessel as of last September had shrunk to less than 1mm and is expected to already have closed off completely now.

Alegria has been seen by numerous doctors including her family doctor, neonatalogist, pediatric cardiologist, pediatric surgeon, pediatric neurologist, pediatric pulmonologist, pediatric intensivist, and chiropractor along with numerous other therapists and specialists.

Alegria still has a numerous pieces of medical equipment including an apnea monitor, pulse oximeter, suction machine, portable oxygen (used only for emergencies), ambu bag, and a feeding pump, but most are used only rarely now.

Alegria still sleeps with an apnea monitor at night to alert us if she stops breathing although she has not had an apnea episode since July. She also sleeps on a Tucker wedge and sling which holds her at 30' incline in order to lessen reflux.

Alegria is such a blessing and joy to our family. We are so thankful for all the time we have been given to spend with her! God has been so good and gracious to our family this past year! We hope and pray He will give us much more time to enjoy our precious daughter!

The Pool Family

 
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6-3-09

It is hard to tell Alegria’s story without starting at the very beginning otherwise it is too easy to miss how God has guided us and cared for us each step of the way, so here is Ali’s story from birth to now … This was our 8th pregnancy and it was rather uneventful. No major health issues aside from swelling. I measured fine throughout the pregnancy, but about two weeks before Alegria was born after feeling my belly, our midwife commented that the baby seemed much smaller than the rest of ours. She guessed the baby was around 6 lbs and might be 7 lbs by delivery. I was shocked as our next smallest was 8 lbs 2 oz, but I thought that sounded great. I wouldn’t complain about having a smaller baby.

After some time past, I briefly wondered if there might be something wrong, but quickly put it out of my mind, little did I realize the scope of the problems Ali was facing. We were planning another homebirth, when at 39+ weeks I started leaking leaking amniotic without contractions, so we decided with our midwife to start a dose of IV antibiotics (due to my history of Group Beta Strep- GBS). She suggested we start augmenting labor, but before doing that, she put me on a NST to make sure baby was doing well. Her heart rate stayed at the 140's it had been throughout the pregnancy, but the NST showed very little variability. Our midwife was NOT comfortable trying to get labor started and sending me home to wait, and she was fairly concerned the GBS may have already crossed the amniotic sack and we were already dealing with a baby sick with GBS.

Eventually after discussing several scenarios, we all agreed it would be better to head to the hospital and deliver there. We had the choice of 2 hospitals where my midwife typically transfers patients (one which 25 minutes from home and the other over and hour away) She really encouraged us to head to the further hospital, which didn't make a lot of logical sense at the time but we trusted her instincts. It had been 7 years since I had delivered in the hospital and I was somewhat apprehensive, but I was pleasantly surprised! The doctor and staff were terrific, one of our best birth experiences! They were so willing to listen to my concerns and preferences in our care; it was wonderful!

When we arrived they hooked me up to all the monitors and found Alegria a little more responsive, but not much. So the doctor decided we would wait until morning to begin induction due to the high possibility of C-Section. Throughout the night Alegria really woke up, but then in the morning when they started me on Pitocin, the variability of Alegria's heart beat disappeared! After a few minutes, she started responding again. The doctor decided to VERY gradually increase the Pit and just watch her and see how she responded. He discussed the high possibility of C-Section with us, and then we just waited. She tolerated (just barely) the pitocin, until my contractions picked up and I started dilating and then she did great throughout the rest of the labor.

My midwife and the doctor both were in the delivery room when our fearfully and wonderfully made Alegria Elizabeth was born. Her actual delivery was extremely easy as she was almost 2 lbs smaller than any of her brothers and sisters! They immediately told us though of the cleft lip and palate, but everyone reassured us that it was not as bad as it may seem and that the doctors were able to surgically repair clefts fairly easily now. It was honestly a bit of shock, but we were so grateful that she was healthy and not sick with GBS. The cleft seemed minor to dealing with life and death issues.

They immediately started making phone calls trying to get us all the help we needed (special bottles, specialists to help answer our questions, etc). We were so thankful that we saw God's hand so clearly directing us each step of the way! It made it so much easier to trust in His providence. We saw how He had orchestrated every detail to get us exactly where we needed to be for this particular delivery.

Never would I have imagined delivering at the hospital where we did (I had only ever been to the city where the hospital was located once or twice before!), but God had it all planned far before we ever knew what Alegria's needs were! Then He continued to guide and direct us again with transferring to a larger hospital. When first asked where we would like to go for her cleft palate, we choose a doctor which was closer to home (40 minutes away), but he was not interested in seeing her right away. My husband and I had many questions and felt strongly that it would be best to have her seen as soon as possible. The man at the hospital coordinating the cleft palate resources for us called our 2nd choice hospital and they sent someone the next day to see us.

This larger hospital is much further from home (1.5 hours), but they wanted to get her fitted with the obturator (prosthesis) right away. We decided this was the best way to go. Again a little apprehensive going to another even larger hospital, that they would be unwilling to listen to our concerns and preferences. And again we were surprised at how well everyone was willing to work with us and our concerns.

We had been told Alegria had a noisy heart murmur while at the first hospital, but everyone felt we would not find anything major on the routine ECHO before surgery. Instead we found that Ali had a small Patent Ductus Arteriosus, a small Patent Foramen Ovale, a bicuspid pulmonary valve, and significant pulmonary hypertension. The neonatalogist was fairly surprised by the ECHO results. Alegria just looked so healthy, but again God placed us exactly where we needed to be, in order to get Alegria the precise care she needed.

It has just continued to amaze us how clearly God had all the details planned out. It certainly has made it easier to be able to focus on her care for today and not worry about tomorrow knowing that God has those details already planned out too! After getting the ECHO results, the prosthesis “surgery” was canceled, and Alegria was placed on oxygen. We were advised to stop feeding her with the bottle as it was just exhausting her and might possibly prevent the pulmonary hypertension from improving.

By the end of her 9 day stay in the NICU, the pulmonary hypertension was almost completely resolved, so we were able to take her off the oxygen and begin trying to bottle feed again (which ended up sounding much easier than it was). We were offered genetic testing, but were not really interested in putting Ali through any more at that time unless it would significantly improve her care, so we headed home with our precious little girl and an NG tube. We quickly found out that Ali does NOT travel well! Screaming and lots of suction took up most of the 1.5 hour trip home, BUT we were headed home! We were so grateful to be finally home with Ali’s brothers and sisters.

The children were very excited too to have us all home. The next six weeks were very challenging. Alegria eventually got her prosthesis, which she hated so much so that she became extremely orally defensive, refusing to suck on anything at all, so we abandoned that idea. The one wonderful thing which did come as a result of the prosthesis was that I briefly, but successfully nursed Alegria for the first time. It was such a sweet and treasured time, and one which she did not repeat for many weeks.

She did began taking her pacifier well again and then even began trying with her bottle. On her 2 month birthday, she had her first major apnea episode. In the brief moments between stopping the van and actually getting Ali out of her car seat, she had vomited, choked, stopped breathing, and was unresponsive. We started CPR and called an ambulance. By the time the ambulance reached the ER she was crying again. She quickly stabilized enough to transfer her Ft. Wayne where she was observed overnight in the Pediatric ICU, and released the next day. The next week she underwent surgery to place a G-tube. She had two more apnea episodes while in the hospital following surgery, both of which required an ambu bag to get her breathing again. It was this point we agreed to the chromosome testing along with numerous other tests so that we could better understand how to help her.

We left the hospital with lots of new “gadgets and gizmos” (apnea monitor, oximeter, suction machine, oxygen/ambu bag), but we left without any real answers. All of the test results (except the chromosome tests) were back and none of them showed anything extremely abnormal. The next week I remember feeling so inadequate trying to meet all the needs and symptoms of my little girl. It was then God once again reminded me that He had formed Alegria and He knew exactly what her needs were and how to best care for her, I needed only to rely on Him. A few days later we received a call that her chromosome results were back and abnormal, but that the doctor wanted to speak to us in person. I spent the weekend before the appointment researching genetic abnormalities. I was fairly quickly convinced we were dealing with trisomy of some sort. I found this website and was greatly encouraged.

As I read the survivor stories I was encouraged and I was amazed at how similar some of the stories were to our own. I was in many ways relieved to finally have an answer as to why we were seeing all these symptoms, and also now that we had a name for it, we could research better how to help her. So at 3 months old, we were told Ali had full trisomy 13.

After reading many of the other families’ stories, we were even more thankful we had not received the diagnosis earlier as we have not yet had to fight to get Alegria medical care. Again it was God’s perfect timing. Alegria is over 3 ½ months now, and she is really doing very well. Our biggest issue right now is the reflux which has been difficult this last week, but things are still easier now than when we first came home from the hospital. We continue to thank and praise God for each day He allows us to spend with Alegria Elizabeth.

Alonso & Jill Pool
Parents of Alegria Elizabeth Full Trisomy
13 poolja1997@gmail.com