Baby Alex, Our Tiny Miracle
On Friday, August 24, 2007, week 25 of my pregnancy, my life would take a path that I did not plan. That day I had noticed that I was having some heavy bleeding. I called the Doctor and the Nurse who answered the phone told me to stay off of my feet and to relax. I tried, but my job required me to be on my feet. Later that day things did not get better. I called the Doctor back and the Nurse told me to go to Labor and Delivery at St. Edwards to be examined. Just to make sure everything was okay. By that point I was scared to death. I could not stop crying and all I could think about was my unborn baby. But I knew I needed to get myself together so I could drive myself to St. Edwards. Ten minutes later I arrived and the tears started flowing again. I did get a hold of husband, but he was about 45 minutes away. Once the Nurse gathered all of my information she took me to the exam room. The next few minutes were a blur. I remember the Nurse telling me that she was not to sure but she thinks that I am fully dilated. But she wanted the Doctor to see me first. After that everything went quickly. Once the Doctor came in, he started explaining to me what was happing and what was about to take place. By that point my husband arrived. Our perfectly planned pregnancy was about to get a major detour. We quickly learned that I was completely dilated and my water sack was bulging.Our baby was in the breach position so an emergency C-section was about to take place. Next, I was quickly prepped, given medicine, and placed on the surgery table. While I was on the table I looked up at the Nurse who had been with me the entire time and asked her to please not leave me. As I laid there on my back I realized the room was full of people. Right before they started the procedure I asked everyone to please take care of my baby.
At 8:09 P.M. Alexander James Stengel was born. I wanted so badly to hear him cry. A couple of seconds went by and we then heard a little cry. A sigh of comfort fell over me. Next they would tell us that he weighed 1 pound 9 ounces and was 12 ½ inches long.
As they rolled him by me they stopped for a second so I could see him. When they did his tiny arm fell towards me. At that moment I knew everything was going to be okay. It was almost like Alex was letting me know he was a fighter. The next time I would see him was in the Neonatal Intensive Care Unit. Just as I arrived the Angel One flight team from Arkansas Children’s Hospital was waiting to take him. But before they could do that Alex would need to be baptized. My husband and I come from a Catholic family that has a strong faith in God and each other. Because of them they thought to get in touch with a priest. As he was being baptized I held his tiny hand. I remember feeling as if this was not really happening.
Right after midnight the Angel One team stopped by my room so I could see him before they left. Inside this large rectangular plastic box, which was on a stretcher, was my son. And all I could really see was tubes and wires. But behind all of this was my little baby boy wearing a pink and blue hat with yellow covers over his ears and the smallest diaper that I had ever seen. Then they left. Now my son would be over three hours away from me.
The following Monday would be the first time that I was able to see him. Once I arrived at Children’s there was my son laying on a warming table with a billierubin light shining on him, a clear plastic cover, many wires, and he was on the ventilator to help him breath. I just sat there with tears running down my face staring at him and holding his tiny hand. At this point I had no clue what the next few days or months would hold. I just took it day by day, second my second.
By the second week my husband and I would be told that Alex would need surgery on his heart. The procedure would be called PDA Ligation. The surgeon would place a clamp on one of his valves that did not close at birth. Lucky for us Children’s is one of the top pediatric heart hospitals in the world.
By week three, day 24, I was able to hold him for the first time. Yes I cried. I never realized how emotional it would be. But I will never forget that day for the rest of my life. That same week Alex came down with phenomia. But toward the end of the week things started to look up. Alex wanted to show everyone just how strong he is. Around 2AM that Friday Alex decided to pull his vent tube out. For the next two weeks Alex was on CPAP for his breathing.
Week four Brian held his son for the first time. I think Alex enjoyed lying on his daddy’s furry chest. That same week Alex also started to have Apnea.
Week five Alex hit 2 pounds 7 ounces. He is now off of CPAP and is breathing with a regular nasal canella.
Week six Alex was moved. He his now with the bigger and louder babies. He is now classified as a “feeder and grower”. By now Alex’s dad had to go back to work in Fort Smith. So that would live him only getting to see his son three days a week. For the next two weeks Children’s started to work on back transporting him to Fort Smith. Then on October 22, week 8, Alex was back transported to St. Edwards NICU. He is now 3 pounds 2 ounces.
The next few weeks the biggest thing that Alex needed to work on was sucking and swallowing. He was also was diagnosed with reflux.
Week 11 Alex was able to maintain his own body temperature. This meant he could be moved from the isolette to a crib. This was huge for me because since he was born I have been buying preemie clothes.
Week 14 arrived with huge excitement. That Monday when I arrived at the hospital Tabrina, a Respiratory Therapist, greeted me at the door with Alex. He could now breathe on his own. This meant that his was closer to coming home.
By week 15 we were starting to make plans to bring Alex home. Friday, December 7th my husband and I arrived at the hospital with our suitcase and a car seat preparing to take Alex home. But before we could do that we needed to stay at the hospital and learn how to take care of him. We know how to love and protect him, but it was time for us to learn how to provide him the necessary medical care. Monday, December 10th was the big day. After 108 days in the hospital Alex finally came home.
According to the March Of Dimes, every week in Arkansas 96 babies will be born premature and 16 of those babies will be consider very premature. 1 in 11 babies born will be born too early. These numbers do not include those born low birth weight or with a medical condition. On August 24th, 2007 my son was one of those 16 babies that were born very premature.
What is Alex Up To These Days?
Alex is 12 1/2 months old. He weighs 14 pounds and is 27 1/4 inches long. You would never know he was born 15 weeks early. Every Tuesday Alex receives developmental therapy. According to his therapist he is on target for his adjusted age and is even ahead in some areas. He as been diagnosed with a small cist in his throat and his left vocal cord is paralized. The cist is from the vent. tube and the paralized vocal cord is from his PDA Ligation surgery. The Doctor at Arkansas Children's Hospital said he should out grow both of these problems. Twice a year he has to go to Arkansas Children's Hospital to the Newborn Clinic and to the Ear, Nose, and Throat. Plus his regular visit's to his Pediatrician.
Saturday, August 23, 2008 we celebrated Alex's first birthday. It was a luau and pool party. Around 40 people and children came to party with us. We served grilled hamburgers and hotdogs with all of the fixings. And to top it off was a homemade luau shirt cake for dessert.
Then on Sunday, August 24, 2008 me, Alex, and Brian took cupcakes to the N.I.C.U. at St. Edward Mercy Medical Center. While there Alex received gifts from the Respitory Therapist and Dr.Coloso. All in all, it was a good weekend.
Tuesday, October 28TH Alex had developmental therapy at the Gregory Kesler Center in Fort Smith, AR. His therapist informed us for his actual age he is behind in a couple of areas. Such as walking, getting into a sit position by himself, pulling to a stand through a half-kneel position, getting down from standing at furniture, and standing independently. She also informed us that Alex will need foot inserts for his right foot. He is having a hard time with his balance because he curls his right toes while standing. The inserts are suppose to keep him from curling his toes while he stands.
Wednesday, December 10TH me, Alex, and his Grandma Stengel went to Arkansas Children's Hospital in Little Rock, AR. Alex had an appointment with Growth and Development because of his weight. At this appointment he weighed 15 pounds 5 ounces. Please keep in mind he is 15 1/2 months old actual and 12 months old adjuted. The doctor says he is underweight. Now we have to extra things with his food and milk. The good news is he wants to take him off of his prematurity formula. Yeah! That will save us over $200.00 a month. But he gave us two options Pediasure or Polycose powder. Pediasure is almost $10.00 for six. Yicks! The powder is about $5.00 a can. Alex also had to give a urine and blood sample. The doctore wants to make sure he does not have any other issues that may be keeping him from being a healthy weight. At the end of the day I felt like I was failing him as a mother. By the way, a year ago today was when he came home from the hospital.
Thursday, December 11Th Alex and I went to his Ped. appointment. His weight was 15 pounds 5 ounces, length 28 inches and his head was 17 3/4 inches. The doctor did not seem to be to concerned about his lack of fattness. But he does think we should get the Polycose powder and mix it with his whole milk and make sure we had it to all of his food. We were also given a prescription for vitamins. Poor Alex also had to have another flu shot. His doctor made me feel so much better about the whole situation. He feels that it is genetics that is causing him to be a little bit under weight.
Monday, January 5TH, 2009 I took Alex to the Gregory Kiesler Center to be fitted for his feet inserts. Hopefully within a week we will be receiving them. Next week He will start physical therapy to help loosen the muscles in his legs and to work on walking. Other then that he is doing great.
Monday, January 19TH, 2009 Alex had physical therapy today and received his feet inserts. Boy he does like them. He only had them on for five minutes and then he started to get mad. The therapist told me that this was not an uncommon response. So I have to increase the amount of time he wears them everyday by five minutes. I did learn one thing about Alex he likes curly fries from Arbys. Can you blame him?
Tuesday, February 10TH, 2009 Alex had a ENT appointment at Arkansas Children's Hospital. This would be a follow up appointment to check his vocal cords. The Doctor checked him over and listened to his breathing. He asked me a few questions about his health and then we received the good news. Alex received an A+!!! He explained to me if Alex can remain healthy through the rest of the RSV season and not have any major medical problems then we will be released from his care. Of course he will have one last follow-up appointment but after that no more ENT. Yeah!!! One less doctor that he will have to see, maybe.
Wednesday, April 22ND, 2009 Alex had a follow-up appointment at Arkansas Children's Hospital with the Nutrition and Development Clinic. He now weighs 17 pounds 10 ounces! Yeah! Dr. Casey seems to very happy with his progress. As long as he keeps gaining weight things should be okay. Our next appoitment will be in six months and not three months as before. At that appoitment they will do a developmental evaluation. Speaking of developmental Alex is now receiving Physical, Speech, and Developmetal Therapy once a week. All of his therapist are very happy with his progress. By the way, we have made through RSV season with no problems!
Thursday, July 2ND, 2009 Alex had a well baby check-up with his pediatrician. He now weighs 18 pounds 7 ounces and is 30 5/8 inches long. He had a good check-up. Alex is still not showing up on the full-term baby charts but the doctor is not worried. One day he will get there. We were going back to see the ped. every three months but now he does have to go back for six months. Our next BIG appointment will be in September to see the Ear, Nose, and Throat doctor at Arkansas Childrens Hospital. Please pray that this is the last time we have to visit them.
Thursday, September 10, 2009 Alex had a ENT follow up appointment at Arkansas Children's Hospital. I was hoping that this would be the last visit but no luck. they want to keep following him due to the small cist that is in his throat. But the Doctor's were very pleased with his progress. They were amazed that he has never had an ear infection or a serious illness. I did ask his vocal cord that is paralized. They were not worried about since he is not showing any complications. Our next appointment will be in November for Development.
Tuesday, November 10th, 2009 Alex had a Nutrition and Development appointment. Good news bad news. The good news is his speech and developmental evaluation went great! His scores increased over 30 points! But the bad news... is his weight or lack of. He now weighs 19 pounds and is 32 inches long. The doctor is worried that his weight and height are not increasing at the same rate. After getting upset and emotional with the Fellow I finaly calmed down. It is so frustrating to not see any progress after doing everything that we were told. We have been given a different game plan to help him gain weight. It involves a lot of butter, polycose, sour cream, and anything that has alot of calories. I really hope this helps. We go to his ped. next month for a follow-up appointment. I hope this one goes well.
Updated November 15, 2009
