During the day we spend our time going to and from the hospital. When we aren't there...our every thought is inevitably consumed by her....and that stress can become so draining. We realized last night that we have been here for 23 days, although other than Rex seeing a movie with my dad and us both taking Sadie to the dog park, the only other thing we have done besides the hospital is eat---and honestly I wouldn't have it any other way. I love every second I get to spend with my sweet girl, even if all I am doing is staring at her while she sleeps.
That being said, we definitely spent the first two weeks of her life running on pure adrenaline, faith, and love. We worried every step of the way...during her birth, ECMO, surgery, and during all the other scary things that have popped up---it was so mentally and physically exhausting to worry all the time (while recovering from child birth), pumping constantly, and having to go to and from the hospital every day. Leaving her there every night will never feel normal and never be easy. But we have finally reached the point where the "scariest" times are behind us and now she just needs to be weaned from the medicines and machines that kept her alive for the first two weeks and recover from her major surgery. Until then, we can finally relax a little bit and begin experiencing fun milestones!
MILESTONES!
This week came with several fun and exciting milestones!
As of 10/27 our baby girl weighed 7.19lbs (she was 6.67lbs at birth). Any weight gain is great, especially since all babies tend to loose a little weight after birth.
On this day she was also moved to her own private room. Her previous space was out in the open and is considered a surgical space. Since she already had her surgery and another baby was born that needed surgery, she was moved to the only other space that could meet her needs---an isolation room. Now she has 3 solid walls and a glass door entrance. There is also a curtain that can be closed for privacy, which allows me to pump in her room.
On 10/28 she was able to wear a real bow for the first time! This means we are one step closer to actual clothes!!
On 10/29 --- her original due date --- I got to "lift" her for the first time! They needed to change her sheets, so I was able to hold her in my hands for the minute or two it took for them to do that. We also were able to give her kisses for the first time. What a special day!
She also got to experience laying on her belly for the first time. It was so cute to see her little bottom in the air and she looked so comfortable! The doctors say it is always a good sign when babies are finally well enough to tolerate this position!
On 10/30, when she was 20 days old they were finally able to wash her hair for the first time! Her hair is so dark, shiny, long and beautiful!
She also was able to have her first feed! Up until now she was only getting fats and lipids through IV's for nutrition, so giving her actual breast milk for the first time was particularly exciting! It is great to know that her body will be getting great nutrition and that I am the only one who is able to provide this for her because I am her mom. Up until now her "medical mommies (and medical daddy)" provide the majority of care for her, but this is one thing that only I can give her! She is going to start by getting 4cc (about a medicine syringe worth) of milk every 3 hours through a tube that goes to her stomach. Eventually the quantity will be increased and then they will begin attempting bottles. Kids with CDH have a lot of trouble with feedings because of increased acid reflux, trouble digesting food due to organs being "rearranged," lack of exposure of eating early in life, and because they do not have any positive experiences involving their mouths. Right now her mouth has been continuously used for tubes and ventilators...they also stick a "spit sucker" in her mouth every 4 hours to get rid of the saliva and mucus that builds up. It takes time for them to learn that not everything that goes in their mouth is bad!
WHAT'S NEXT!?
This week has been all about weaning! They weaned her off of the nitric oxide on Friday and she handled it like a pro. Her stats didn't drop at all. The doctors said they had never seen a DH baby that was able to oxygenate their blood but not get rid of CO2. They weren't really even sure what to do. So they used their amazing medical minds to quickly come up with a plan of action...they tried nitric oxide, Viagra, and changing her vent settings. Thankfully one of those things or a combination of two or more things worked like a charm! This allowed her to come off the nitric pretty quickly.
Once they got her CO2 figured out they were able to begin weaning the flow of her ventilator. As of Friday the vent was doing 100% of the breathing for her. It was taking 70 breaths for her per minute and providing 46% oxygen. Her body could take breaths on it's own if it wanted to, but it didn't need to in order to get what it needed. In order to come off of the ventilator and show she is ready for nasal cannula oxygen, the machine has to be down to 8 breaths a minute and 30ish% oxygen. This process could be pretty fast or it could be slow, it all depends on Makenna and how quickly her lungs are able to begin taking over the workload.
Thankfully Makenna seems determined to get off the ventilator and has been doing pretty well. Dr. Kays and his fellows started by lowering the breaths/oxygen as they saw fit, but then on 10/29 they developed a plan. Every 8 hours (at 6am, 2pm, and 10pm) they draw blood and check her blood gasses. This tells them how well she is oxygenating her blood and whether or not she is getting rid of the CO2. The plan is that if her blood gas numbers look good they will lower her breaths per minute by 4 and her O2 by 2. As of now her breaths per minute is set to 34 and she is on 36% oxygen. We are hoping that at 10pm it is lowered to 30, but we will see---they weren't able to lower her at 2pm due to her numbers being slightly elevated. Either way, our baby girl is doing great and they may begin talking about extubation during the weekend or on Monday if she keeps up this pace!! It will be so nice to finally say "bye-bye" to the vent, but we are on Makenna time and only time will tell when she will be ready to make this big step!
They have also started lowering the dosage of several medicines she's been getting since birth, including her pain, sedation, and blood pressure medicine. This allows her to be less medicated and act more like a real baby. She is definitely a little bit more fussy during hands-on time and moves more too, simply because she is in less of a fog. I don't like when she cries, especially since you can't hear it and the monitors start beeping because her heart-rate is going up so high, but I have to keep reminding myself that healthy babies cry! Every day she is one step closer to being a healthy baby!
All this is such wonderful news! It is so gratifying to see her progress. Thank God. Enjoy every moment. I know you will! Blessings!
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