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I know, its not so easy posting now that I am back at work. Regan has been doing great! She is sleeping mostly through the night, except now I have to worry about her twisting through the night. The other night I woke up and her oxygen tube was around her neck! How the heck did that happen? So now I have to check her through the night, I even swaddle her legs with the tube and it still get all tangled. She is mostly taking bottles, she has a few lapses here and there. As for eating cereal she doesn’t know what to do with that anymore. She is just letting it sit on her tongue. Poor thing, she really loved her cereal. I am going to try to mix it with some apple juice hopefully that will do the trick! We have had to cut some stitches off already which is not easy with a 9 mo old! She is turning back into her old happy self again. Her closed lip raspberries are hilarious! Bubbles and all. I put together her high chair on Friday and we gave it a test drive, she did pretty well, had to prop her up with a blanket but she played for a while.
And Grandma S gave her a little cup to play with and she put it right up to her mouth like she had been drinking out of a cup all the time. So funny. This week is more packing and cleaning. Kev’s parents may have to stay at our house for a week or so. Things are coming together but a few people have not called Kev back, like the septic guy. Kind of need a bathroom before they move in! They also decided to redo the road this week, without telling any of the neighbors. Long story but our developer never finished the road and tried to pin it on all the neighbors that we ruined it. J@ck@$$. It is exciting though to see all the things come together. I will try to get some more recent pics of the house this week. Until then!
Sorry for the delay in posting. So much has happened, and still happening. On Wednesday morning I was going to write about how she put a nuk and bottle in her mouth for a little while and how we were finally getting somewhere. And then the Grandma Whisperer steps in for her noon bottle and gets her to take it & finish it!!! Since then she has taken every bottle, there is some whimpering here and there but that is huge progress. Just take a look!
Now the sleeping thing not so good, she slept til 4:00am Wed, but we have backslid ever since. Ugh…. 3:00 am and no interest in going back to sleep. Little stinker. Hopefully once we get her back on rice cereal she will sleep longer. Then another thing happened Wednesday, she started closing her mouth. It is so cute it is like she just realized that her lips can actually touch and her expressions are priceless. Here are two pics:
She has even tried some raspberries with the closed mouth. So precious. I know it seems silly but she has never had her mouth closed like this since she was born. Grandma is helping out today so I can get some stuff done, including more packing. This weekend we will be moving the majority of Kev’s parents stuff to the house. (Nope, not finished yet. We are trying for the extreme home makeover for their area to be done in the next week. Yes Kevin is crazy.
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We hope you had a good First Birthday!!
Sorry we missed it!!
Love, Auntie Carissa, Uncle Kevin & Baby Regan
She slept until 3:00am. But she did not go back down easy, and only for an hour. She is really putting a lot of things in her mouth, which by the way is good. But she refuses to put the bottle in her mouth. I am happy to say that this morning she actually sucked on her pacifier for about 30 seconds!!!! So I hope we will be on our way. She is still really grouchy at night, I am going to try to put her to bed at her normal hour tonight and see what happens. I went back to her normal feeding schedule today too. I realize it will take a while but I think part of her unhappiness is not being on a schedule. I talked to her pediatrician and we might be able to get rid of the apnea monitor next week. That makes me a little nervous but I have to get over it eventually. In the beginning of July we have the appt with the pulmonologist (sp?) so we can get working on weaning her off the oxygen too. Yahoo!!
but we are home. The last 3 days have been a whirlwind. Regan did not have any complications, in fact, they were going to let us go home on Friday. But Mommy was not ready for that. Kev & I stayed at the hospital that night, completely uncomfortable. She did great except we could have really done without all the interruptions. I mean really she is on 2 different types of monitors do they really have to come in and take vital signs at two in the morning!!!!! At least this hospital had a awesome cafeteria and Kev & I were living on caffeine all weekend. Saturday was the day we went back to the HavenHouse. Of course it was freezing again, taped vent ducts and all. Grandma & Grandpa came back with us. Grandma was the miracle worker getting her to calm down and sleep, mommy – not so much. In hindsight we should have kept her up the rest of the day. We had the night from HELL!!!!! She did not sleep for more than 2 hours the entire night. I felt bad for Kev since he had to drive home the next day but mommy was losing her mind too. Nothing would help her, standing, rocking, sitting, crib, swaying, carseat, food, tylenol. It was brutal. So by Sunday Kev & I are operating on about 6 hours sleep total for the last 2 nights. Can you say Mt. Dew! We got packed up early and woke up Grandma & Grandpa early too. We needed a break. Even if it was just for 20 minutes for breakfast. We went to their hotel and ate there. (The Drury Inn is very nice I might add, warm breakfast too) After we all ate we hit the road. Prepared for a nightmare, of course, Regan did great, after her whopper poop diaper. Oh yeah, didn’t think about that being the problem. She slept pretty much the entire way home. At least I could take naps (poor daddy). We made it home without incident and kept her awake until bedtime. She actually slept from 9-2 and then 3-6. Ah finally some sleep!!!! She is still uncomfortable with the swollen tongue, but it should be going down from here on out. She is actually trying to put some things in her mouth. Not her bottle but it is a start!! They said usually around day 5 they will not be so averse to it. Here’s praying she starts eating because she & I both hate feeding her through her g-tube. Miss Grabby Pants just wants to play with the tube we put the food into, and mommy just panics about her grabbing it the whole time. I have been taking some pics, but they are not for public sight. Really it is kind of gross, but if anyone is interested I can email you or show you next time I see you. So lets all pray for some more sleep tonight!!! 🙂
Regan is doing well, as for her parents…. Regan came out of surgery like a champ. Of course that means a lot of crying and fussing. But that is to be expected. It is hard to believe the way her tongue looks now that it will look completely normal in a few weeks. Today was basically about pain management. She didn’t have any respiratory problems during or after surgery. Lets pray that holds up. Tomorrow is going to be about swallowing again. They may try a bottle if she seems up for it, but since she has her g-tube it is not absolutely necessary. They just really want her to return to a normal schedule as soon as possible. The nurses told us to go and get some sleep tonight since she is in the PICU and there are nurses to watch her. Tomorrow she will be moved to a different floor and we will be sleeping with her there. She is basically sedated right now. My parents are coming down tomorrow, hopefully they won’t have any problems with all this rain and flooding crap!! We want to thank everyone for their prayers, we are convinced they are a key component to Regan’s health and recovery.
I am posting this for Carissa as she is calling from the hospital with updates. Regan is out of surgery and still in recovery. Her surgery was less then an hour long and went well. They haven’t seen her yet, I guess they are waiting for her to have a good cry when she comes to. I will continue to update once I hear more.
We love you baby Regan!
Love, Auntie Andrea
We went to the St. Louis Zoo today. They have got the best zoo, well compared to Milwaukee. We really only saw half of it too. Regan got to pet her first animal today, a guinea pig. It was hard to get her too look at the animals because things have to be moving for her to take notice but we still had fun. We went early this morning to try to avoid the heat. She did good in the weather. We left by noon so it didn’t get to the hottest part of the day. Here she is sitting on one of her favorite animals!!
Yesterdays appointment with the speech pathologist went well. She doesn’t expect us to have many problems with Regan’s feeding. Since she is taking a bottle so well. There are some kids who still have problems eating, that are even older than her. Speech wise since she isn’t talking yet she doesn’t think she should have any problems in that area either. She is really starting from scratch in that area. Sarah stopped here and brought us some dinner last night. It was good to see her. It is always good to see family when you are in a strange place. She is also going to stop at the hospital Thurday night. My parents are coming in on Friday too.
Tomorrow morning at 9:40am is her surgery. I am glad we are doing it now since she won’t remember but it is still going to be traumatic for us. I will try to update everyone as soon as I can. Wish us luck, and thank you for all your prayers.
We hope you had a great birthday silly girl!!! We miss you & love you! Love, Carissa, Kevin & Regan
was awesome. He really put us at ease (unlike the previous doctor we saw). He spent about an hour with us discussing all the aspects and why it is a good thing she is having this surgery early. Her lower jaw is already larger than her top. Now at least that may normalize as she grows and we can avoid jaw surgeries when she is older. We also saw some surgery pictures. Still uneasy about that but it was good to prepare us. I didn’t realize that her stiches would be in for 5-6 weeks. Her tongue is going to look like it has little spaghetti strings on it. It will take 12 months for an entire recovery but it will start looking better after a few weeks. Today we meet with the speech pathologist. We are going to try to hit the botanical gardens first. Tonight Kevin’s cousin Sarah is in town so we are going to go to dinner. So I probably won’t update until tomorrow morning. I hope everyone is safe during this crazy weather. It sounds like we all have had a bit of flooding and I hope it doesn’t get worse!!!! Oh yeah, and it was FREEZING again last night so we just ending up taping the vents. A funny sight to see Nilla Wafer box on the walls.
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