Half of my heart

Hi all, wanted to give an update from last week. I have the twins in the NICU and as of now we get to bring one of them home next weekend! Our little man who is having respiratory problems from his CLD is doing better, he is still on the steroid, but they have been able to ween him from CPAP 8 back to high flow 3 which is what he was at a few weeks ago. He still has mild retractions which drive me crazy, I am going to be neurotic about it when he eventually comes home, but right now the medical team seems to be okay with how he is doing, and they extended his course of steroid until this weekend. My other little guy who is hopefully coming home next weekend is doing great. Today is his last dose of steroid and he has been on low flow for about 6 days now. He is taking full bottles every feed so he doesn't need his feeding tube anymore. He will come home on the low flow so we are preparing mentally and preparing our home for all of his equipment. Anyone have experience with a baby on oxygen at home? Wondering how easy it will be for him to get around once he starts crawling etc, right now will just be tummy time and such so will probably just have his oxygen tank a few feet away from him. The original plan was for him to be discharged Wednesday next week, but now he will have his inguinal hernia surgery before he comes home, and they are hoping that they can do some sort of spinal numbing instead of re-intubating him, as to not set him back respiratory wise, and then come home for next Sunday. We are so happy and excited but also nervous, as we technically are parents, it just hasn't really felt like it quite yet. Just feels like we go visit these cute babies at the hospital every night! Having to travel back and forth with his brother to go see him now once the other comes home will be a lot. Anyone have any input on this type of situation? Thanks in advance

2 Replies

  • So glad to hear that your boys are doing better. I brought my baby home on oxygen but she was never large enough to move around too much with it. We used a very long tube but we did have condensation issues so that is something to be aware of. Have confidence in yourself and know that you can be the best mom to your boys. Keep us updated.
    Love and Hugs
    Brandi
  • Wow! So much to think about. First off I'm glad to hear both the boys have improved. Often times when they make progress and then backslide it's hard not to be discouraged. I remember my twins doing this.... I came to the conclusion that these little fighters like to do things on their own terms.
    Homecoming is both exciting and nerve-wracking. You're right... you've had help in caring for them all these months and now it's just you and your husband. You're ready for it...even if you don't think you are. What you know will just fall into place once home. Our girls didn't come home on O2 but did come home on apnea monitors. When they weren't moving it wasn't an issue. As they became more active we just adjusted accordingly. I know that O2 tubing can be very long and the kids just adapt to dragging it around. Hopefully he won't need it for very much longer and it will be a non-issue.
    Sending good thoughts for positive forward progress with the O2 support for both boys and good vibes for the upcoming hernia surgery.

    Keep us posted on how surgery, and homecoming goes. We love to hear updates on our little preemie miracles.

    Take care,
    Karri
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