Welcome

Welcome, to our little blog featuring our precious little Peyton. Brace yourself because this first entry is rather long as I am back tracking to try to bring you up to date with her recent progress. I will be going back to December 2007, but if interest is expressed, I will go back further in future posts (can I do that? Go back further at a later date?). Enjoy.

"I like to prop my feet up"

December 2007:

Peyton is doing very well. She is over 17 lbs, and 24 inches long (tall?) she is working on her seventh tooth and is beginning to crawl. She is at such a great age as she has really started to communicate. Yolanda is teaching her sign language because with the trach she does not make any noise. She is catching on very fast and is way ahead of her verbal counterparts. She is not only signing words, but phrases. Peyton gets so excited when she signs something and we understand it is a learning process for us too. Her favorite word is ‘more’. As in more milk, more hugs, more tickling… Her Doctors are very happy with her progress. I’m not going to say she is the “Worlds Greatest Baby Ever” that does everything better then every other baby known to man, as we’ve all heard those stories, but what I will tell you is despite all of her setbacks it’s really nice to hear that she’s smart and ahead in some of her development. Obviously when her trach is removed she will be behind in her verbal communication, but with Yolanda’s efforts, she will only be lagging in the verbal portion. Peyton had surgery on December 4th, to have the top of her mouth (cleft pallet) closed up. The doctor told us the procedure went very well and she did not require tubes in her ears, a procedure most of these kids require. I was trilled with the thought she did not need the tubes, it was a little bright spot as she was actually beating the odds. However, the doctor said her windpipe is not growing as fast as we would like and he recommended doing a procedure in the Spring/Summer timeframe to open it up and remove the trach. I will get into that further in a future post. So, for all intensive purposes, this surgery was a success. We were told she would only need to spend a night or two at the hospital because she is in such an ideal situation with both the trach and g-tube. However, it turned out to be four nights as after surgery, she was moved to her room and she stopped breathing, but the amazing part was because they were monitoring her, a nurse was in the room in no time and within two minutes there were over twenty people in her room with a crash cart. The nurse began suctioning out her trach, and she began to breathe again unassisted. However, the big concern was the fact her stats dropped. They moved her to ICU where she stayed the night and then moved her back to a regular room the next day. She stopped breathing a couple more times throughout her stay but her stats were good so the Doctor said she is a breath holder. When some kids get angry they hold their breath until they pass out only to involuntarily begin breathing again, it appears we may have one of those. Peyton had her surgery at the new Children’s Hospital (they moved to a new medical complex at the old Fitzsimons Army Medical campus I-225 and Colfax). There is a new University of Colorado Hospital, and a couple of others are moving out there. It is a great hospital, we stayed in her room with her the whole time she was there, isn’t that cool? She is doing great now, we are so glad that part is behind us.

"My First Christmas"

January 2008:

Peyton celebrates her 1^st birthday. It was hard to believe she was year old, now look at her.

Peyton was scheduled for her 1-year checkup and shots on January 16. Now, the day before her visit she started having a few cold like symptoms, runny nose, slight cough, no big deal. We arrived to see the doctor and she still seemed to be fine, we waited, doctor came in updated her notes, checked her out but wasn’t very comfortable with her breathing, which seemed to be a little more labored than normal. A Respiratory Therapist came down to get a ‘Pulse ox’ (the little red light they put on your finger to determine the amount of oxygen in your blood) and that reading wasn’t very good so they waited a little while and checked again and it was getting worse, Peyton looked and acted like she wasn’t feeling very good. They did a nebulizer treatment, and still no improvement. The doctor wanted to admit Peyton, so we waited as they tried to find a bed for her and we waited some more, we then went to emergency to wait there, and finally around 9PM they moved us to a room. Peyton was there for the next six days and they determined she had bronchitis. Yolanda stayed with her the whole time, and I worked and commuted to and from the hospital until Peyton came home January 22^nd.

"I'm feeling better"

February 2008:

Next, we had a swallow study scheduled for Feb 1, this was to make sure she was able to swallow food and liquids without filling her lungs instead of her stomach (this was the original reason for the G-tube). She did great, and released to eat and drink what ever she wanted without any restrictions. This was great news and as for her team at the hospital, well, they were thrilled. Therefore, this is obvious progress moving toward having her G-tube removed. Yolanda has been working with her using a Sippy cup and feeding her baby food. She is doing really well with this, but she still has the feeding tube, and will until she is able to maintain her weight via oral feeds. So for now we will continue to work on getting her to eat by mouth

So, all was well at the Repp house, the New York Giants with a Manning at the helm won the Super bowl. Very happy about that! February 15 was Peyton’s next appointment to get the shots she should have received in January. We got her shots, everything seemed fine, until Sunday, and she started acting the same as she did last time she was hospitalized. So, Yolanda decided we should take her to the Children’s Hospital at Parker, they run a satellite ER and hospital in the Parker Hospital, very close to home. We arrived around 1pm, and they saw her in the ER and decided that she had either Pneumonia or Bronchitis again so they admitted her there, but not until about 8PM. Therefore, Yolanda stayed with her again, but this time I had suggested she pack a bag, so she was better prepared to stay. Through the night and all day Monday, they tried different things and she just wasn’t responding well to the treatments. Therefore, Monday night, the doctors decided it would be best for her to return to the Mothership and transferred to Children’s Hospital. Transportation was arranged and the Paramedics arrived at oh 12:15am Tuesday and proceeded to move her to the ICU at Children’s. I finally got home around 4am, as you know these things never happen very quickly. They were a little more aggressive in treating Peyton than they were at Parker, and she was able to come home on the following Sunday. Life has been somewhat normal since. I use the term loosely as I am not sure what normal is any more.

"I've had it, no more hospital, let's go home."

March 2008:

So far this month we have been hospital free, knock on wood. Peyton is continuing to grow (over 19 lbs and 27 ½ inches tall) and sign, as we are all learning lots of words. The weather has been getting nice, so Yolanda takes Peyton to the park, just down the street, so she can slide, and get some fresh air. Most recently, Peyton is pulling herself up to stand and is beginning to walk a little, pushing her riding toy/walker.