As I said earlier, after Eirion received a blood transfusion she continued to get better. She improved rapidly. She stopped spitting up and didn't have any apnea episodes. After her surgery and after she started feeling better Eirion discovered she had a voice. She also discovered how to use it and she practiced using it often and loudly. She cried. A Lot. And that continued up until she passed away. She definitely let us know she was around. We didn't mind too much, though, because we were so happy to still have her with us. We counted every day as a blessing.
We were finally almost ready to bring her home. She just needed to heal a bit more from her surgery and gain a little more weight.
We were scheduled to bring her home on Tuesday, so on Monday her medical equipment was delivered to the hospital and we were trained on how to use it. We had a pump for her Mic-Key button, an apnea monitor and a suction machine. Kind of overwhelming at first, but not very hard to learn to use.
I remember being so excited to finally have her home. She would be able to finally be a part of our daily everyday life and be able to bond with her siblings. I was so happy to finally be able to hold her all the time and not have to leave her in the hospital. Also, I felt, as I'm sure all mothers do, that although we had wonderful nurses in the hospital, no one could love her as much as I did.
We went in on Tuesday morning with the car seat. She had to have a car seat test first. Preemies sometimes have a hard time because if their head falls forward in the car seat they can't breathe and then you have to take them home in a car bed. She passed with flying colors and didn't mind too much being in her car seat. The doctor came in to do his last check-up and found out from the nurse that Eirion was having a hard time regulating her body temperature. She was cold. I told him how warm my house is and assured him that I could keep her warm, but he didn't feel it was a good idea to send her home yet if she couldn't regulate her body temperature. We were so sad and the kids were so sad that she didn't come home.
But remember Nancy the NICU guru? She came to see Eirion and Kristi told her what was going on, so Nancy went to work and decided to get her warm. She put her in a long sleeve onesie, a sleeper and a warm, thick, snuggly thing to keep her warm. It worked! She stayed warm. So the date was sent for the next day.
The next day we went and if she was just put in a sleeper, she was having a hard time regulating her temperature, but if she had on layers she stayed warm. The doctor seemed to think it was a side effect of T13 and asked if I felt comfortable taking her home. I said yes and that I was comfortable with my ability to keep her warm. He said he would release her then.
Right before we left, Kristi came in to say goodbye. She cried and so did I. You become attached to those special nurses who love your baby when you're not there. The doctor had signed the necessary papers and home we went finally! She was a month and a half old.
Having her home was wonderful and the kids were thrilled. The younger ones were happy that they could see her and touch her anytime they wanted. Jared loved peeking over the side of the bassinet. A few days after she came home I was sitting by her bassinet and noticed a little orange chee-toh smudge on the side. Apparently he wanted to show Eirion the joy of Chee-toh's.
At times during her hospital stay we weren't sure if she would ever come home so we were so grateful. At first we had her bassinet in the living room during the day and our bedroom at night. I was nervous and wanted her to be with us as much as possible so I could make sure she was o.k. She slept a lot at first. My mom and one of her friends had made a lot of hats for her and she loved those hats. Sometimes if she was crying and I put a hat on her, she'd stop and go to sleep. She loved to snuggle and was probably my snuggliest, cuddliest baby and I loved cuddling her and feeling her sweet little body snuggled up to my shoulder. She was our little princess and I dressed her accordingly. After 5 boys, I had a great time putting her in little teeny, tiny, very girly outfits, most of which were gifts from wonderful friends and family.
After about 3 weeks with no apnea episodes, I stopped using the apnea monitor. She never needed it. I also started putting her in our bedroom when she slept because it was quieter in there. But I bought a baby monitor with 2 receivers and I put one in the kitchen and one in the living room. Even with the monitors, I still checked on her about every 10 minutes when she was sleeping. I knew the leading cause of death for babies with T13 is that for no explainable reason, they just stop breathing, so I checked on her a lot.
We felt so blessed to finally have her home.
Next: The Summer of Eirion
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