3 weeks old!

It's hard to believe that little Miss Rylynn is already three weeks old! She has been doing great and has developed some patterns of her own. She is a great baby and I am thrilled that she sleeps well at night with feedings every few hours. However, I've learned that if I think I am going to get a nap in during the day, I better do it before 3:00 or so because she does get a little fussy each afternoon.

She loves going for walks in her stroller, but is not too crazy about getting in her car seat just yet. I'm afraid it may be a long ride home next week!! We're trying to get her used to it slowly without causing too much stress or increasing her breathing by too much, but we may have to make several stops on our way to Austin. We have also learned that she is not yet thrilled with taking baths. We still can not submerge her in a bath though so she has to take sponge baths and I don't blame her for the dislike. The process is pretty terrible so we're ready for that chest to heal up enough to let us get her in a warm bathtub.

It's been a crazy three weeks with so many highs and lows, but the blessing of our little girl is indescribable. We love her so much and just can't get enough.

With love . . .

We're back at the apartment and Rylynn is doing much better. After monitoring her breathing, blood pressure and a few chest Xrays we were able to treat the fluid build-up (infusion) on her lungs using a higher dose of medication. She and I have been resting much better and are happy to be back at the apartment.
Today she is 3 weeks old! It's great to see her beginning to gain weight and fill out and become more and more alert and active. We're very lucky that she's a good eater, which is very important. She's also quite spoiled already. I really don't know how it happened so fast, but she loves to be held and cuddled and won't hesitate to let you know that she needs to be in your arms.
Gilly and I are planning to stay here in Dallas until the end of next week so that we can make it to a follow up appointment due to the infusion. We are looking forward to getting back to Austin soon. I hope you all are enjoying a nice Memorial Day weekend, keep us in your thoughts.
With love . . .

We brought Rylynn in for a "weigh-in" on Monday morning and it turned into a couple day stay. During her appointment, we inquired about a slight grunting that we noticed when she breathed. It seems that she had developed a little fluid on her right lung and they admitted us in order to monitor her breathing and oxygen saturation levels. It is not uncommon for this to happen after a major surgery and luckily we caught it before it was too severe. We have been given a larger dose of her lasix meds and the chest Xray this morning showed a lot of improvement.
So we are hoping to be discharged late this afternoon. So once again we'll be headed back to the apartment until some time next week. We will have another follow-up appointment with our cardiologist here before we can be cleared to head back to Austin, but hopefully we'l be back some time late next week.
We'll keep you all posted on our developments over the next couple of days.
With love. . .

Here are the pics!

Here she is, the day we were released. I think she was excited to be leaving the hospital!

Daddy's first diaper change

Mother's Day

A first family picture

First picture before she had any tubes or wires!

I have left out those early pics that have her covered in all her hospital hardware. But you can see she has turned out to be such a cutie!

Happy Birthday to Daddy!

Rylynn and I helped celebrate Gilly's birthday in a big way on Wednesday. We were discharged from the hospital!! We could not believe that the surgeon and cardiologists gave us the clear to head home. Well, kinda home... we are staying in Dallas until next weekend here at the apartment so that we can be close in case of any medical emergencies. We also had a follow-up appointment today, one on Monday, Wednesday, and Thursday of next week. I guess we will need to be used to all the doctors visits. When we do get back to Austin we will meet with our cardiologist and pediatrician there as well.
Miss Rylynn has been the talk of Children's Medical Center. I know that all parents truly believe that their kids are amazing, but I'm telling you, Rylynn is really something. No one can believe that we have come so far in such a short time. The doctors had told us that when patients with her condition do very well with surgery and have few complications, they will be in the hospital for 3-4 weeks after the procedure. We fast-tracked and were discharged 8 days later!! This also makes for two very nervous parents and puts a lot of worry and responsibility in our hands, but we think she can get stronger and healthier with our love and care here, rather than in the hands of the nurses. We have great trust in our doctors and they had no reason to keep us with her doing so well.
We survived our first trip to the doctor's office this morning. We arrived on time (at 8am), but I made a "first-mom" mistake by not packing any milk because I thought we'd be home within 3 hours. Well, the appointment lasted longer than expected and we had to call Aunt Tammy to drop some by the hospital. It all worked out, but I will remember to always pack that diaper bag as if we'll be gone for a day!
I am going through my camera now and will post lots of pics of Rylynn. Thanks for all the great comments, emails and well wishes they have truly, truly meant so much to our new family. Gilly and I intend to share them all with Rylynn one day.
With love . . .

A room with a view!

We have some exciting news! Today, we were moved out of the ICU and into the cardiac unit on the 8th floor! Rylynn has been quite the super star around here. Usually kids are kept in the ICU for 10-14 days after surgery and she's proved herself after only 6 days. We are so lucky that she has been able to feed by bottle reaching each of our feeding requirements by the hair on her chinny-chin-chin. The doctor on the floor today told us that 99.9% of all Norwood kids are sent up with feeding tubes and 80% of them even go home with them. We have had to be persistent with our feeding, but she's doing incredible. We hope that she will continue to gain weight as she should and we can continue to feed her.
Now that we're on the 8th floor, we are able to care for her like new parents (or at least almost). We get to feed her, change her diapers, give her medicine and all those things that the ICU nurses have been doing. Another exciting bit, is that she had her forehead sticker removed today! She looks so different, but still looks exactly like Gilly. You will see in the pictures the sticker that I'm referring to; it's hard to miss.
Yesterday was the best Mother's Day ever! I was able to hold my sweet girl. The Docs removed her pacer wires at 4:30 and I had her in my arms as soon as I could. I even got to change my first diaper, what a great Mo Day present :) I will admit it was a bit of a disaster. She was screaming and I had poopy all over her socks and wires. Just as I got it all cleaned up, she had another episode before I could even close the diaper! Today Gilly and I have each had a little more practice. Unfairly though, she slept through Gilly's first try.
Now the day in winding down and we are pretty exhausted. It is going to be an interesting night. Downstairs we had one recliner in the room so that one of us (usually Gilly) could stay the night in the room with her. However, up here there is a pull-out couch that is only approximately 36" wide that we will have to snuggle up on. I'm not sure we'll be getting any sleep at all, but we're happy to be here with Miss Rylynn.
It's time to warm her bottle so I will run for now, but promise to get pics up soon. Hope you enjoy the update.
With love...

Finally!

So as you all must understand, this last week has been crazy! In fact, I can't believe a week has already passed. Yesterday we celebrated Rylynn's one week birthday with Sprinkles cupcakes and lots of pictures, she has come so far it's unbelievable.
Let me start from the beginning... Last Friday was the greatest day I've ever known albeit quite scary. Rylynn was born at 8:37am weighing in at 7lbs-0oz and measuring 16.3". We have had her measured since then because we did not believe she could be so short and it seems that she has grew 6 cm in two days so we are sure that she just was not measured correctly during all the haste of getting her prepared for the cath lab. My delivery was text book while in the adjoining OR 27 doctors and many more nurses, etc. awaited Rylynn's arrival. They worked quickly and transported her to Children's immediately. Proud papa was able to follow them over to wait for the results of the procedure. The hospital was so nice to let our families wait in the corridors so that they could catch a glimpse of her as she wheeled by on her way to the lab. That meant a lot to me and I'm so glad everyone saw her for a moment.
I do have to back up and say that Gilly was able to stand up in the deivery room and catch a very quick glimpse of her as they pulled her out. He had a smile from ear to ear as he announced that he saw A LOT of hair! And let me tell you, she is her father's daughter through and through! She looks just like him! I was hoping when her adema had gone away that maybe her features would change slightly and I would atleast have some of me in her, but I'm afraid not!! :) She is absolutely beautiful.
Back to delivery day. I was in recovery and in walked Gilly only 45 mins later. My heart sank because I had not expected him back so soon, but I could tell that he had a wonderful expression on his face. He came with the good news that the two little holes of her atrial septum seemed to be providing just the right amount of restriction balanced with the right amount of flow. It was a blessing that saved her life! We were ecstatic!
She was stablized at Children's and getting her steriod that would keep her ductis open until surgery day. I was able to go see her late Friday night for the first time and it was indescribable.
Over the next 48 hours she slowly came out of sedation and was extubated by Sunday. She was prepared for surgery and the Norwood was performed on Tuesday morning. Saying good bye to your four day old baby is heartbreaking, but we knew as she wheeled off to the OR, that she was in great hands. The surgery lasted until about 3:00 with reports coming to Gilly and I every hour. Things went as planned and we were able to get back to see her by 4:30. It was an emotionally draining day, but a beautiful one.
Since Tuesday, Rylynn has been progressing in a steady upward pattern which is perfect. Day by day she has been losing one medicine, one wire, and one tube at a time. Yesterday she was extubated and we were able to hear her cry! She had a wonderful day and now we will try to get her to start taking the bottle. So far she has done well, but will need to meet a particular feeding amount before we can take some of the wires out of her heart. That is the moment that Gilly and I are looking forward to. Once those wires are removed we can hold her! I just can't wait!
Yesterday the nurses surprised us and dressed her while Gilly and I went to breakfast! I couldn't believe how cute she looked!
We still haven't been able to change a diaper and as silly as that sounds, I am looking forward to dirty diapers and late night feedings. I also can't wait to hold her and comfort her when she cries.
It is impossible to describe all the emotions of the last week, but knowing that there are so many great friends and family sending their prayers and well wishes, it has made the tough times easier and the happy times more wonderful. Rylynn has overcome so many things this week, some are to be expected, some can not be explained by the physicians; I know that it has been the power of prayer that has gotten us this far.
I will try to post more frequently now and can't wait to put up some pictures. We look forward to you all meeting Miss Rylynn one day and for now just keep praying.
With love. . .