Gracie asleep in her REAL crib
Last night, Taylor fell asleep holding her, so sweet!
Darling summer basket for my 3 kids, so they have something to do while I am so busy. Thanks Michelle (Rich) and Jamie (Brown)!!Well, we are finally HOME!! Tom posted a few days ago which is great because this is the first moment I have found to sneak in a post. We are definitely grateful to be home but I'm not going to lie, it has been challenging. Gracie requires round the clock care. I have to give her medications in 14 different doses throughout the day in addition to her 2 Lovenox shots and any pain medication she should need on top of that (Tylenol and Lortab).
She is feeding through a portable home health care feeding pump. Her feedings go like this: I have to thaw out my milk, add high calorie formula to fortify it, warm it up by putting it in a cup of hot water, pour it into the bag on the feeding pump, prime the milk through the line, check the pump for the correct volume and past totals, check Gracie's feeding tube for placement (by drawing back with a syringe to pull stomach content or by blowing air into her stomach with a syringe and listening for a 'pop' with a stethoscope), then hook the tube up and push run. Because the pump continually runs at a certain rate per minute, I have to set the timer and check the bag before the feed completely runs out. (Home Health told us to to this so that we don't run into problems with the pump running out and getting air into the tubes). After the feed is over, you flush her line with a little water then rinse the feeding bag out with warm water and prime the water through the lines so it does not clog. REPEAT 6-7 times during the day!! Whew!! Sorry this is so detailed but I would like to remember all of this in a few years!
Gracie had a good first couple of nights here, however yesterday and last night were pretty bad. She has been throwing up A LOT. Basically every feed. She was really fussy yesterday and didn't sleep more than 1 1/2-2 hours in a 12 hour period. Home Health came out to the house and weighed her, she was 10 lbs, 11.5 ounces. Even though she weighed 11 pounds at the hospital, the nurse said that different scales can weigh differently so we will use this weight as a guide for Monday. She will come back out then and we will see if Gracie is gaining weight. If she is not, we will have to address the vomiting issue.
Our biggest challenge at home has been her all to frequent coughing, gagging, and vomiting. It is really scary because she turns completely purple and then appears to stop breathing every time she throws up. It is almost impossible to sleep because she wakes you up every time she coughs and you have to be on guard by watching her to see if you have to help her throw up (and not choke). This morning I went over to her and she was blue, she had pulled her nasal cannula out in the night. That was a little scary but she pinked back up after a few minutes of being back on it.
We are so grateful for all of the acts of kindness from our family and friends. I keep wondering how people without a support system get through this. I have had members of my family over every day all day and we couldn't do it without them. I am so grateful for the gifts, meals, and service to our family. We have great visiting teachers, friends, ward members and family who are willing to take my children, bring us dinner, do laundry, clean, run errands and anything else we need. It has saved my life and I really appreciate it. Thank you for all the prayers in our behalf. Unfortunately, we will continue to need them throughout this year, thanks SO much!!
19 comments:
I am so happy that Gracie is finally home, but I agree with you having her home can be so scary when you now have to do everything for her! Good luck! Sounds like you have most of it under control! One thing that the doctors and nurses never told me about (until I asked her Ped.) Sydney suffered from post traumatic stress syndrome for about two months after we finally got her home, basically if I wasn't holding her 24/7 she would scream, her doctor said that a lot of babies that go through surgery experience this. Just something to watch for in all the craziness that you are already experiencing! I truly hope that everything can calm down soon for you and your sweet family! I am still praying for your sweet Gracie girl!
Heart Hugs
Caralee Baker
Oh Michele, I went through the same thing just 3 short months ago... it's not easy, but it gets easier... I promise!
I remember the coughing and the puking ALL night long..we called Owen our little blueberry. Hopefully Gracie will grow out of it soon enough an you'll all get a good nights rest!
Even after the Glenn it's not an easy road, but it gets simpler....we like simpler!
Prayers for the best!
It is a lot of work...we know. But it does get better. We went through all of the same things with Kaidence. And the vomitting....well lets just say that it becomes part of the norm for a while. Every morning as I would get the boys off to school I was doing meds and cleaning up the throw up. We now just lay a heavy blanket (since you may have many as well from the hospital) in the bottom of the crib so we would only have to change the blanket. We do understand all of the craziness. Thank Heavens for label makers. We draw up most of all her meds every night for the next day and have all syringes labled(Kaidence has an excessive amount of meds as well). You can get the blue caps the hospital uses to cap the syringes for free in the pharmacy. We have a fridge lock box and one for the cupboard so the meds can stay at the right temps. Most can stay stable in the syringe for a day. After all thats what they do in the PICU. That has helped out a lot. I was worried about drawing up meds while I had kiddos distracting me. That way it is easy to grab and go if you have too. Hopefully you can get rid of the continuous feeds soon. Kaidence struggled on them as well(vomitting). It does get better and you will gets some sleep at some point. Good luck and enjoy theses moments. We are so blessed that we still have our little miracles.
I can't even imagine what you are going through! Wow! it must be great to be home, but triple the work! We are here to help you with what ever you need. Maybe we will wait till the rush wears off, but we can do whatever you need. Congratulations on your big step...we are so happy for you!I told my sis-in-law (thomas' wife) she went home wed. she couldn't believe it...she truly is a miracle!
Oh, my goodness! How challenging, scary and tiring. But I am SO happy that she is finally home, and I'm sure that, despite it all, you are too! Hang in there, you are awesome!
Wow! That is so much to take on. We'll keep you guys in our prayers! How nice that you have so many people in your life that are able to give so much support.
What a beautiful, sweet little angel. Please let me know when we can have Max and Taylor over to play. And anything else I can do!
Whew! I suspected it would be tough, but that sounds really difficult. Even though you can hold her every minute of every day, I bet it's hard to give up the security of having those nurses to take over and give you a break. Good luck.
We are so glad that Gracie is home. Stick in there. Coming home was a lot harder than anything we have ever been through (unknown gallstones for 4 months). We will be keeping you in our prayers. This time will get better and easier. All our love and prayers.
All We can say is Thank you Heavenly Father for answering our prayers. How blessed we all are that Gracie is home and how awesome for her to come into such a GREAT family!!!!! CUTE CUTE pictures!!!! Michele we will keep in touch we would love to give you a break and PARTY with your kids!!!!!
Love,
The Bunkers
Good luck!! sounds like a lot of work! Worth it tho! Look at that face!!!
Go Gracie Go!!
Even though the PICU was the only home Gracie knew, she looks like she fits right in at her real home. She looks so cute in her clothes, bows and without the wires and wound vac. She is so sweet. We are so glad she is home. What a miracle! How lucky am I that she is just a few minutes away when I get the urge to hold her!
Welcome Home Gracie!!!!!
Wow, Michelle..I am still in awe that you are doing ALL that and taking care of 3 other children! I'm glad they trained you well in the hospital for her "purple" episodes...i do not do good in panick situations, so I am amazed that you seem to handle them so well.
So glad she is finally home! I cannot imagine the stress of making sure everything is done properly. You guys are amazing! If I lived closer I would love to help but it sounds like you are being taken care of. You have amazing friends and family. We are still praying and will keep on doing so. Take care and we look forward to the next update.
It is an amazing journey that you family has gone through so far. And a long journey ahead. But, with all the support from your family and friends, the road will hopefully be just a little easier to travel. Very happy to hear that Gracie is home, and that so many are there to help. We will continue to pray that Gracie improves daily! Harry
Hi! My name is Jen and my daughter, Carla, has HLHS & Dr. Kouretas was also her surgeon. I found your blog page posted on another HLHS blog page and was compelled to read the WHOLE thing. I am so very glad for you and your family FINALLY getting to bring your BEAUTIFUL little darling home. What a blessing and a miracle she is! Now that you are home the "real" journey begins. I wanted to offer a couple tid bits of advice, as we went through some of the same things with Carla when she came home a little more than a year ago. 1st thing I did was label (with a lable maker) dose and time of each med. Secondly, put a binki in little Gracie's mouth every chance you get - this will VERY MUCH improve her suck and swallow abilities. And, as far as feeding goes, keep a log of how much she takes orally (that way you can see how much she improves). For us, after about 2 weeks at home we decided to start trying to feed her more by mouth and less through the feeding tube, so long as she got the proper amount of food PER DAY. At first it would take her 2 hours to drink what she was supposed to and then we would have to start her next feed. We bought and tried out a whole bunch of different nipples and bottles, as to find the one that released the "perfect" amount of milk, without choking Carla. After everything was said and done - Dr. Browns Bottles are what worked best for Carla. After a couple of weeks she could down a bottle in 20 or 30 minutes - it was just a matter of working with her and being patient. Of course, every baby is different, but I wanted you to know this worked for us. If you ever want to talk, either about your feelings or if have any questions about what we have done, please feel free to e-mail me at bobbynjen4@aol.com we can exchange phone numbers and we can visit about our little beautiful miracles if you would like. You can see Carla, on my blog spot at: www.ourlittlewrightfamily.blogspot.com
Congratulations on brining your sweet Gracie home. My prayers will be with you and your family.
Jen Wright
Oh these are the best pictures yet! What a blessing that you can finally bring her home. Our prayers will continue as I can't even imagine going through all these feedings and dealing with all these issues! Good luck and God bless all of you!
Michelle,
I am so happy to see that you were finally able to get Gracie home. She is absolutely beautiful. She has been through so much and it is such a blessing that you are finally able to have her home. I know how you feel about the whole throwing up issue. Elaina was doing the same thing. She's still in the hospital, now waiting for a Glenn, but we ended up finally changing her NG to an NJ so that there wasn't anything in her stomach to throw up. It's helped a lot, but you have to take her to the hospital to change it, it can't be changed at home if it gets pulled out. I hope that she continues to do well and that she gets stronger as the days progress. It was great meeting you at the hospital! I wish you all the best!
Hollie and Elaina
I thought I would offer my services if ever needed. Since I used to be the PICU pharmacist at Primarys, I used to always do the medication teaching with the parents. If you ever have a med question and don't want to track down someone from the cardiac team...you can call me anytime. I'd love to be of help and just live here in Lehi. Also, I do know which pharmacies (closer than PCMC)can compound some of the meds she went home on. Good luck! I know what a chanllenge the meds can be! Emily Summers 766-2246 (Heather Stowell's sister!!:))
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